Raising a Son with Autism -- Tears Of A Clown

Leave It To Winnie

2012-01-04T22:28:00.000-08:00

2012 tumbled in like salty, fidgety waves, knocking us off our haunches, ill prepared and dazed by the rushing of time. My husband and oldest son headed to Boise for a New Year’s weekend of hockey while Sean and I held down the fort, trying to fill the final three days with activities and movement while maintaining laundry and sanity at the same time.

Almost three weeks off of school and Sean had been itching for more of a schedule and I was near a fever for life to return to normal (kids back at school, caught up with work and chores). The pine needles from the Christmas tree shed like dust across the floors and the fireplace and I counted down the days of Christmas like a rocket ship readying for blast off.

On New Year’s Eve Sean and I went to Red Robin to burn up a gift card. Sean promptly mumbled his order to the hostess,

“How many for dinner?”

“Chicken strips and Sprite. And Ketchup.”

“I’m sorry?” she smiled, pressing the menus against her chest and bending down toward him to get a better listen.

“It’s okay. He’s just telling you what he wants. Sean, she’s the hostess. You have to get seated and then you can tell the waitress.”

We went at 3:30 in the afternoon. A nice lull in the day, the tvs set at a lower hush and the booths and tables barely full.

He proceeded to take off his hoody, his t-shirt peeling off too,

“Okay, Muscles, you gotta leave that on,” I said, grabbing the bottom of his shirt and pulling it back down, covering up the flash of frog belly white ribs and stomach that appeared.

He unwrapped the crayons from the cellophane and began to write letters. He spelled Edward. Then Evan. Next was Kangaroo. Followed by Lizard.

The waiter sidled up next to us asking if he could start us out with something to drink. Sean gave his spiel and I gave my order as well – our restaurant experiences hadn’t been stellar in the past so thought it best to move things along.

Sean did remarkably well. He didn’t try to wrestle the top of the ketchup and slam 16 ounces “down in one” chug. He used his napkin. He said thank you. He did announce that he had “to pee” pretty loudly but did a good job of using the washroom by himself and washing his hands.

I paid the bill and we headed over to the bookstore to let Sean pick out a book with a gift card. Sean headed towards the back shelves where the kids' books were and I let him explore a bit on his own. I looked at the new fiction and checked out some of the juvenile fiction. A few minutes later Sean came up to me with the book he selected – a large Winnie the Pooh book with buttons on the side that made cute, little kid noises. It was the type of book you would buy for a toddler, certainly not a boy who will be turning eleven in a few days.

A weight of deep sadness sank like a stone in my chest as I watched him cradle the book in his arms, holding it and pushing the buttons. I saw all the Harry Potter books and the Diary of a Wimpy Kid series and the other, clearly more age appropriate books that surrounded him. And here he was, a boy of almost eleven, clinging to a child’s book, with no sense of awareness or any kind of embarrassment, his eyes wide with delight and a lovely smile.

I have been wrestling with how I have been feeling about this – I’m not sure why this moment held such sinking grief for me. I suppose if he is happy that should be enough. It shouldn’t matter. But it does, you know. It makes me afraid. I am worried at how vulnerable he is. How little he still remains. How small he really is. And how necessary it is to soldier on and protect him and be there for him.

Even trying to write about this has been a major roadblock in my mind and heart. I don’t know if I can really articulate it well at this point or if I have to just compartmentalize it for the time being, for the sake of it all, to be able to move forward, to avoid that sinking feeling.

I did do some searching and stumbled across something that gave me pause. In all places it was from the author of Winnie the Pooh himself, A. A. Milne. What he wrote rang so completely true to what I felt when I saw Sean with the toddler book that I felt sloppy tears hit the keyboard as I read it. It said,

“If ever there is tomorrow when we're not together... there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”

I hope that’s true. That those words are not only my words for Sean but also Sean’s words for me and that somehow we both can live up to that promise. For the time being, it softens the idea of Sean alone in the world, holding onto a child’s book. It gives me some sparkle of hope that we all have a reserve of strength and courage greater than what we know or understand.

Limping Into The Christmas Season

2011-12-21T16:28:00.000-08:00

The other day, while watching Charlie Brown’s Christmas Special with Sean it dawned on me that Charlie Brown and I oddly enough have a lot in common. No, not thinning hair or a lack of robust color in our wardrobe but that we both suffer from the holiday blues. He mopes around talking about how sad and depressed he feels during the holidays. He even pays Lucy a nickel at her haphazard psychiatrist stand to drone on and on about the commercialization of Christmas and lack of meaning. By God, he and I could bore each other to tears on end with our incessant brooding.

For the life of me, I can’t seem to find much motivation or direction to accomplish much these days. Not only do I lack organization or sense of accomplishments lately but it’s also coupled with a certain, unexplained frustration which I can’t truly account for. I suppose it didn’t help that shortly after Thanksgiving I managed to tear a calf muscle on my very first run down Timberline up at Mt. Hood. What a way to kick off the ski and holiday season. I had stopped in a rough patch in order to try to coax Sean down a steep spot in the run but to no avail. He tilted his head back, heavy with his shiny blue helmet yelling, “I want to go home!”

Not too long after my husband whizzed by, picked up Sean and skied with him to the bottom near the chair lift. I decided to start my way down but my uphill ski was wedged like an anchor in the wet, heavy snow and so I began to fall, almost in slow motion, too slow to release my boot from the binding, but hard enough to hear a pop of muscle coming from my right ski boot. Somehow I managed to slide to the bottom, ride the lift to the top and shuffle in my boots to the First Aid tent. My husband smiled weakly and said, “Will you be okay just icing it?” Which really meant, “Do you mind lying on the stiff army cot in the First Aid tent with your calf on a Ziploc of snow for another four hours while we get the most out of our ski passes?” Which of course I did, making small talk with the medics and watching my leg swell like a blowfish.

Two days after the ugly mountain mishap, my husband headed off on a planned trip to China (seriously, China, no joke) while I hobbled around getting the kids to school and activities, the shopping and cooking. That week might possibly have been the longest week of my life. Limping around the house, icing my calf on frozen peas, swearing non-stop underneath my breath and nearly falling into tears every time I would have to go from the gas pedal to the brakes -- the littlest tasks turning into heroic feats was just too much to bear. Without my husband I had little backup as far as Sean goes. And as far as Sean, he showed little understanding of why it took so long for me to get around or how come I would flinch so easily when he would come bounding towards me. My older son did his best to help out or run interference, but at only twelve years old, his schedule has begun to resemble that of a CEO of a Fortune 500 company and I have somehow been hired on without pay as his chauffer.

It has been almost a month, the calf has been mending quite well but my attitude is still in need of fine tuning. At least I am in good company with a certain Mr. Charlie Brown, who seemed fairly down on his luck and yet the Christmas spirit certainly snuck up on him and by the end of the special brought him great tidings of comfort and joy. So there’s still hope that I can turn it all around, I guess. Christmas is four days away. Here’s to holding out for a real sense of joy and comfort and peacefulness. That’s all I want for Christmas. I don’t need “stuff.” Just some happiness – and make it last.

Gratitude Walks

2011-11-16T22:52:00.001-08:00

I read an article on line that sourced Dr. Andrew Weil as saying that being grateful can lead to good health and boost our immune systems. It’s the fall time, cold and flu season on its way and Thanksgiving is approaching, so I thought I’d give it a go. I’d venture out most mornings with the dog for what I called a “gratitude walk.”

October through early November couldn’t have been more perfect here in the Pacific NW. Abundance sunshine and unusual warmth, the maples and birches blazing in glossy reds and scorching yellows, fanned against the plush douglas firs and stiff pines. The dog nosed his way through the dewy grass, his body skimming the ground, collecting dirt and leaves on his belly and paws. I thought I was walking my dog not pushing along a Swiffer.

I walked briskly, purposely leaving my IPod back at home, only the sound of an occasional car, a breeze bustling through the trees or the creek water spilling over rocks and branches. I used the occasion to give thanks for the time alone without interruption and appreciation for the discipline to stay in the moment without letting my mind wander too much into the tasks of the day or the worries that seem to always sit nervously on the edge of my mind. I gave thanks for the sunshine that lit the trees and made the tips of the grass sparkle and kept my cheeks and hands warm. At the end of the walk I’d wash off the dog and make a hot cup of coffee and sit still at the dining room table watching the scrub jays fight over the bird feeder on the back porch.

Now it is mid November and the rains have returned. I am determined to continue these gratitude walks, even though the dog looks like a drowned rat by the end of the walk (as do I). The trees have given up the fight, like tired women stepping out of their evening gowns, the once vibrant leaves sit discarded in crumpled piles on the lawns and road. At times, the rain comes down almost sideways and stings my face and hands (if I have forgotten gloves.) I soldier on. I dig down and give thanks -- for the time and strength to move forward, to continue even when it’s dark and cold and seems hopeless.

This time of year begins the start of a struggle – for daylight, sunshine, happiness, fresh air and harmony. Sean and I are often out of sync with each other – cooped up and fighting cabin fever. I’m trying to be less cranky and more optimistic, not just for me but for Sean. I don’t want to lose sight of what matters and get lost in the sadness and busyness that often sneaks up this time of year. My edginess spills over to him and makes him more stressed.

Two weeks ago I was in Target and found myself trapped in an aisle of boxed Christmas cards, wrapping paper and ornaments while “I’m Dreaming of a White Christmas” floated down from an overhead speaker. The next aisle over was Halloween candy and costumes on clearance. I had the sensation of a pinball pinging back and forth, my head rattling and I couldn’t escape the aisles fast enough.

It seems to me in the rush to accomplish everything, there’s little time to enjoy the process. We don’t let anything unfold organically anymore – it’s all rushed, bigger and better. We don’t anticipate, or let anything soak in, marinate. We are too busy moving on to the next “big thing.”

I hope to continue these gratitude walks regardless of the weather getting worse or the season of Thanksgiving passing. For forty five minutes a day, I am engaged in the world at a natural, unscheduled pace, free from interruption and noise and unnecessary stress. I am guided by my little dog who experiences each new morning with such renewed purpose and wonder.

I’m sure my brain is much larger than my dog's (gosh let’s hope) but his sense of wonder and adventure hasn’t been spoiled or altered by unrealistic expectations, dread or a lust for instant gratification. He’s just thrilled to be outdoors, being in the moment. And for that gentle reminder I give thanks.

Tricks and Treats

2011-10-31T18:40:00.000-07:00

A decade of Halloweens for Sean. This year he is Garfield the cat -- orange and fuzzy with whiskers and attitude. I can't remember all the costumes of the past -- I know there was a slew of superheros including Batman, Flash and the Green Lantern. One year he was the Incredible Hulk -- it was the same year he tripped on a rock about a half a mile from the house and screamed the whole way home. He gave new meaning to Bill Bixby's line "Don't make me angry. You wouldn't like me when I'm angry."

Another year he was Buzz Lightyear but I don't think we made it outside our cul de sac. After he received a candy bar or a bag of Skittles he parked himself on the stoop of the person's house and proceeded to unwrap his goodies and eat. After eight houses, a thick chocolate moustache, and a green lolly pop tongue, he was ready to pack it in for the night.

My oldest is on the cusp of thirteen, the teenage years. He seeks distance like a bee to a flower, giving me the duck and wave as he joins up with his friends. His costume is typical of his age -- a Vans sweatshirt, Levis and sneakers and a Scream mask, a pillowcase slung over his shoulder like a carefree shrug.

We even put the dog in a costume -- a hot dog. Not the most flattering costume for a dog who is half corgi -- who already is predisposed to heavy hips, a wide thick middle and short legs. He dragged himself along, his self-esteem surely taking a hit in such an unflattering, ridiculous get-up.

I stayed back at the house poised with a bucket of Butterfingers and Skittles for all the little ninjas, princesses, superheroes, raggedy anns and wizards at the door. Another Halloween here and gone like a blink of an eye. Where does the time go?

On a separate note, I recently finished an article about testing that needed to be done for Sean as part of a psychological evaluation requested by the county. If you'd like to read more, the article can be found at the following link: http://www.lifeclectic.com/2011/10/24/testing-1-2-3/

Have We Met In A Past Life?

2011-10-05T09:47:00.000-07:00

About two years ago a young mom came across my blog. She had just moved from NYC out to Westchester County, a move precipitated by her youngest son’s autism. They had tried to make it work in the city but the public schools offered little and the private schools were exorbitantly expensive – costing them over $50,000 a year to get their son an education that would help meet some of his needs. Exhausted, disillusioned and hemorrhaging money they sold their home at a $150,000 loss, moved out to the burbs and rented a home in a good school district. They packed up their lives into corrugate boxes, left behind the life they thought they were going to have and at a tremendous financial and emotional loss moved away.

On her son’s first day of public school in the new neighborhood she worried as she took him to his new classroom. The school district had his paperwork and file and seemed to be able to give him the support and resources necessary to meet his needs but this was a huge transition, tough on any child but particularly a child with autism. She has an older son, too. Like my older son, her child is neuro-typical, but nonetheless, having to pick up and leave everything he knew and start all over weighed heavy on her mind. Did they do the right thing for both boys? Was this going to work out? There was too much at stake for it to go terribly wrong.

She came home, sad and scared and Googled something like “Autism Back to School”. My blog, which was considerably new, somehow came up in her search with the entry Life’s Lesson Plan http://autism--tearsofaclown.blogspot.com/2009/09/lifes-lesson-plan.html. The entry was about sending Sean to school and how my worries were heavy and how every start of a new school year seemed to be another moment of grief and distress; my child falling so far behind the others, his face growing into a boy’s face and yet his mind still so much like a young child’s.

She read my blog and commented. There was something so raw and familiar in her words that I wrote back and asked if she’d like to talk more via email. We did. It was the start of a very unique and lovely friendship. She would read my blog and be my biggest cheerleader or a strong shoulder to rest on and leave messages of hope, strength and kinship. She, too, began blogging about her move to Westchester County, her children, her life, her music (she is a talented and a much revered musician). I’d leave her notes of encouragement, e-mails of optimism and somehow, without ever meeting each other face to face, we were each other’s closest allies and soft place to crash.

When I knew I’d be coming out to New York I didn’t hesitate making contact with her to let her know. She was excited and told me she could drive into the city on the weekend to meet.

Last Saturday I met her for the first time in the lobby of the hotel where I was staying. She was sitting on the stiff modern sofa looking at a magazine. I said her name, she looked up and it was like looking into the eyes of a dear friend. I can’t tell you how good it felt to meet the woman behind the keyboard, who shared so much with me in life and loss.

We walked down 39th to a little café and got our coffees and croissants. There was no awkward silence. It was as if we had known each other our whole lives, talking, commiserating and laughing. We only had two hours or so and I wish it could have lasted longer. It was not enough time to make up for the past forty or so years of not knowing her but it would have to do.

When I first started blogging it felt life a relief, a container to hold all that I could no longer keep inside my head and heart. But lately I have questioned what it’s all about. Sometimes I feel empty inside, nothing clever to say or no words rattling around in my tired head. But seeing her reminded me of all that I have gained from putting my story out there – connection and friendship, feeling less alone and scared.

I have written more about my trip to NYC and what it was like to leave behind the husband and the kids for five whole days at Lifeclectic Magazine. Here’s the link: http://www.lifeclectic.com/2011/10/04/coming-home/
Also, my friend's wonderful blog can be found at: http://onceuponasnowflake.blogspot.com/

Measurements and Assessments

2011-09-16T11:02:00.001-07:00

Back to school seems to always be a gentle reminder of where things stand. By things I mean Sean -- where he fits in to the whole scheme of school and academics. He is now a fifth grader, entering his last year of elementary school and by almost every measurement, he is far behind the academic standards of a fifth grader.

I know that I am not supposed to measure Sean's growth and development by comparing him to his "typical" peers. Sean is by no means a "neuro-typical" child. I am reminded of this by his doctor, the occupational therapist, my husband and my own inner voice but it's hard not to think of where he could be if it weren't for autism shaking up his life and world.

Let's face it. We live in a world that ranks everything and celebrates winning and success. It's not a bad thing -- it's just the message that's out there. I have to remember that some successes aren't huge and enormous, that maybe Sean being able to pour syrup over his waffles all by himself or zip up his own coat and snap his hood are huge successes relative to our lives. It's progess, moving forward and growing -- a sense of independence.

It reminds me to keep perspective. It is just fine to do small things well. It is just as important. Mother Teresa's message was basically that -- "We can do no great things -- only small things with great love." Isn't that beautiful? It gives me a hope that it's not the task at hand that matters so much but rather how we carry ourselves through on that task, how we approach it, embrace it and lend heart and help to it.

So going forward I am going to let go of where my son falls on a bar graph or a pie chart -- and remember to focus on the boy he is rather than where he ranks or what percentile he falls. He is so much more than that. We all are, really.

This post is further "thinking" in regards to an article I wrote in Lifeclectic Magazine. Please check it out. http://www.lifeclectic.com/2011/09/09/school-daze/

A Moment To Breathe

2011-08-28T12:08:00.000-07:00

I have hidden myself away in a coffee shop in Sun Valley, Idaho. Alternative folk/rock pumping through the speakers, the whirl of milk being steamed and shots being pulled for lattes and morning Sunday chat are the soundtrack for my day. My husband drove me into town to have some "writing time" and I'm giddy with the freedom.

An old wire fan blows on my back as sunshine spills through the old, red clay windows and I type away taking breaks to gulp hot coffee. It's a nice break from the forest where we've been staying.

We made camp in an RV for the last couple of nights in front of my in-laws rental home. At night we open the windows to let in the cool desert air and starlight. The moths (is there such a thing as moth season?) are everywhere, circling the porch light and the screens, wings clipping and snapping keeping time with the river behind us.

I like the forest, but I think I'm more of a townie/city girl at heart. I could do without the dust and biting flies. But I do enjoy the openness, the music of river and birdsong and loose gravel. Sean and I took a long walk this morning while the others slept in. We walked to a lake where anglers sat on a bridge with their poles, the smell of fish and hay lifting from the fields. We walked over flattened squirrels and snake skins and even avoided what looked like moose poop. Sean skipped and hopped asking me to spell the words, "parade", "November" and "Joaquin". Occasionally a car would ramble past us but mostly it was just us and the dog taking advantage of the cool, morning air.

This afternoon, though, I have made it into town. Back to writing in coffee shops, without much interruption and plenty of inspiration.

I am posting a link to an article I wrote this morning for Lifeclectic. Feel free to check it out. It's called Soul Surfing. http://www.lifeclectic.com/2011/08/28/soul-surfing/

To Do Lists

2011-08-19T08:38:00.000-07:00

With summer coming to a close soon, I should really be tyring to enjoy and bask in the remaining days. But instead, I've managed to bury myself in tedious to do lists in a futile effort to keep everything "humming" along and maintain a sense of normalcy (whatever that is). While working on an article I discovered why I am feeling miserable and by no means, enjoying what is left of long sunny days and warm temps.

Below is the link to what I wrote and what I will be trying to "accomplish" going further. Forget the organizing and alphabetizing DVDs, cleaning out the utensil drawer and labeling my son's hockey equipment with a label maker (and why do I even own one -- who was I kidding?). I'm ready to embrace something larger, more important and worthy of my time.

http://www.lifeclectic.com/2011/08/18/list-substance/

A Published On-Line Article

2011-08-09T21:14:00.001-07:00

I've recently started writing for an on-line magazine for parents by parents called Lifeclectic. I'm pasting a link to my first article published on August 9th. The title is What To Expect When You Are Not Expecting An Autistic Child.

I will still be active on my blog but wanted to share this website and the article in the meantime.

Here's the link: http://www.lifeclectic.com/2011/08/09/expect-expecting-child-autism/

Happy Campers

2011-07-27T17:43:00.000-07:00

I managed to make it on a family camping trip. Husband, two sons and one roly-poly half Corgi/half Chihuahua puppy. We packed up the old loser cruiser and briskly headed out to the highway where we moved like turtles. The traffic finally broke past Portland, and Mt. Hood filled up our windshield, shimmering in a winter snowy gown, reminding me of how slowly summer has been in coming to Oregon.

Our friends had gotten up early to secure a spot. Luckily they managed to arrive in the nick of time and get the last two available sights. We pulled up around 6 p.m., the kids spilling out of the car and my husband unpacking the tent, cots and Coleman grill. I tended to the dinner details – a few London broil steaks for the grownups, hot dogs for the kids and a big salad. Sean hopped and bumped around like a ball in a pinball machine, so happy to be making camp in the forest.

Now I’d be lying if I said I was a fan of camping. We didn’t camp as kids. My dad, as a young man, enlisted in the army. On the application it asked him to list the places he’d prefer to be stationed. Hawaii, he checked. Germany seemed nice. He guesses they must have had a good laugh at that because he ended up in Alaska. He lived in army tents during freezing winters and ate half frozen food out of tin cans. He swore he would never “camp” again. And so we never did.

As I got older, developed a career I was treated to nice hotels for business and the idea of camping to me was more like, “Oh, the Hilton is filled. Looks like you’ll have to camp at one of the motels off the highway.” And prissy me would sigh, promise not to let myself snuggle up in the scratchy bed coverlet and remind myself to wear flip flops in the room and shower. So how did I go from that to tumbling into a four man tent with a broken zipper, dressed in layers of clothes that are filled with pine needles and forest dust and rationing enough water to brush my teeth for the next two days?

That’s easy – the things we do for love (my husband loves to camp) and the things we do for our children (they’re fans, too.) So I’ve gotten over myself and really embraced the idea of smelling like I’ve escaped a burning forest (camp fires), pretend that when I have marshmallow in my eyebrows that it’s just an inexpensive, on-the-go form of waxing and that not washing my hair for almost three days is preserving the expensive highlights I got a couple of weeks ago.

My only big dilemma is when I have to use the bathroom at 3 a.m. and I can’t see my hand in front of my face, not to mention there are three other people wrapped like sausages lying like a minefield around me. The dog peeks out of the bottom of my sleeping bag, but I can feel him scurry back as if to say, “You’re on your own, sis.” And that’s just making it outside of the tent. Then it’s only a sparse lantern to guide me to the outhouse. I can’t help but imagine mountain lions waiting in the boughs of trees and black bears running up from the river to pair their salmon with some human flesh.

I have gone as far as to consider astronaut diapers but haven’t made the purchase. I do have some pride (not much) but some left. For the time being, I have mustered up the courage to run and stumble as fast as my tired legs can move me to the outhouse while hoping there’s not some deadly spider or snake coiled up waiting for me when I get back.

But all kidding aside (but I’m not totally kidding) camping has been an experience to me, one that I have not grown up with, but one I have had to try as a grown-up and have continued to do for the joy it brings my family and mostly for the time we have together without interruption from all the noise in our world. We can’t get a signal in the forest to talk or text or email. No Wi-Fi to connect.

All we have is each other, books, the river, pitch black evening sky decorated in the most amazing starlight and the crackle and spit from the kindling in the fire. I can’t get enough of seeing my kid’s faces aglow over the campfire, their eyes wild with imagination and discovery, puffs of cold clouds escaping their lips as they talk over gooey marshmallows or play charades with our friends’ kids.

There’s connection in the forest that we don’t always have back in the city, in the house. Sean often reminds me of this when I see how unburden he is swimming freely in the forest air, how in tune and linked he is with us.

I don’t want to take it for granted. This connection that sometimes I worry might go away all together someday if we don’t pay attention. In our modern world with all of its comforts and conveniences, the one thing we can’t completely simulate or replace with technology is the hard work, effort and joy that goes into real human relationships (or is there an app for that now?) Gosh I hope not.

So for now, I’ll soldier on and be a happy camper. I have to admit that when we do it right, (pack the best “can’t put it down” books, get a cloudless night with fat, electric stars and build a roaring fire) a tall glass of Pinot (even in a plastic camping mug) makes it all the better. Just one though. Trying to minimize those middle of the night adventures to the outhouse…

Keeping The Peace

2011-07-13T22:43:00.000-07:00

I live in the land of bumper stickers. Some Portlanders idea of wearing their hearts on their sleeves is by applying layer after layer of stickers on their car bumpers. It makes for good reading during rush hour or construction. Bumper stickers know no bounds – a rusty old Volvo, a sporty Lexus or a sensible Prius will often wag its owner’s political, social and/or humorous point of view. I am a conformist, too. I have a Powell’s Bookstore bumper sticker, our current Governor sticker, Chicago Blackhawks 2010 Champs sticker and an In and Out Burger sticker (if you’ve had a burger there, you completely understand.)

Some of my favorites include:

“My Karma Ran Over Your Dogma”
“My Other Car is a Broom.”
“Tea Parties are for little girls with imaginary friends.”
“Keep Portland Weird.”

I read one the other day that left a permanent mark on my brain. An Albert Einstein quote that read, “Peace cannot be kept by force; it can only be achieved by understanding.”

Like most things I read or hear I always have a tendency to apply it to my world, my life and mostly my relationship with Sean. I’m constantly searching for signs from a higher, divine being to give me some direction or meaning or hint of what this life I am living is all about and how to live it right or well or some days to just simply get through it. And this quote, in particular, spoke to me clearly – not on a global level although I certainly find it completely applicable to current affairs in the world, but more on a basic level, thinned down entirely to my relationship and struggles with Sean.

You see, it is summer. Yes, sunshine, the coo of morning doves, smell of damp rose petals, ripe berries drooping from our raspberry bushes and of course, the relentless chatter of Sean, his questions that he asks over and over:

“Who has a birthday in January?”
“Is Garfield the cat Spanish?”
“Why Aunt Maggie sneeze?”
“When is Pearl Harbor Day?”
“Where is my calendar?”

A unending interrogation, his hands pulling on my chin or turning my cheek to get my attention, his eyes wide and his lips moving as I answer his questions over and over until I say, “No more. I will not answer you any more if you talk about birthdays, cartoons in Spanish, holidays or the calendar. I will have to ignore you. Okay? Mommy can’t take any more of your questions. Mommy doesn’t want to end up in the nut hut.”

Lately, I find myself being very short with him. Rolling my eyes, big sighs, internal dialogue that goes something like this, “PLEASE shut up. I don’t give a rat’s fanny about January birthdays or Garfield and Odie!! Haven’t we talked about this a million times already?!!”

I have been grinding my teeth, my neck tightening, hands tensing, watching the digital clock on the oven – how many hours left in this day? And then, like a salty, refreshing wave that knocks me over, I see him clearly, his worried eyes, fingers bent with anxiety and his undeniable need for everything in his chaotic world to have some comforting sameness. He is the one feeling truly tortured, not me.

Some days I want to yell and scream and fight and force him to stop, with my words or an angry glare, but this isn’t the answer. It’s like the bumper sticker, it’s as simple as reminding myself to understand, to make it less about me and more about him.

I can take it too personally. The crying and fits and yelling and forget how difficult his world is for him to navigate, how he sees and feels and reacts, so different from what I know. And it doesn’t give me an excuse to shut him down, silence him, but rather lend him some heart and understanding. To use my calm, nice voice, “Okay, we are done talking about holidays, what else should we talk about?” Not dismissing him so readily.

So to obtain some sense of peace in our house I need to remember to do my best to understand Sean’s motivation, his need for repetition and the overwhelming anxiety and how it distorts the boy he is, deep down free from the chaos and fear that autism brings. I need to hold back my frustration, exhaustion and disappointment, and replace it with real understanding and of course, unconditional love.

Deep breathe, I remind him (and myself). Slow down. Relax. Meet in the middle. Keep each other from slipping away. Hold on, but do it gently. Be his soft place to rest his tired body and mind. Give him some peace.

Happy Martin Luther King Jr. Day

2011-06-24T19:46:00.000-07:00

I realize it’s June 23rd and the title for this post makes hardly any sense but bear with me. It’s the mysterious beauty of autism – the way Sean’s mind winds and wraps, spinning tangled fishing line into patterns of spun silk.

For the past week he has been wishing me and those around him “Happy Martin Luther King Jr. Day.” Today, on our morning walk he greeted fellow walkers, joggers and even pets a Happy Martin Luther King Jr. Day. For the most part, people just smiled, most likely unable to understand his speech – the words rush out, haltingly stop and then stammer, his eyes scrunched tight and his left hand covering his small ear.

It took me some time to figure out Sean’s obsession with Martin Luther King Jr. For Sean, a connection always exist, even in its strangest scope and far reaching grasp. But Sean connects to Martin Luther King Jr. not for Dr. King’s tireless efforts and work toward racial equality, social justice and peace but merely for the fact that like Sean, Martin Luther King Jr. was born in January – January 15th to be exact (although Sean clings to January 10th as Dr. King’s birthday – this makes their birthdays, in Sean’s mind, a day apart instead of six days – the connection much more significant.)

How he knows this information is from his love and borderline obsession of dates and calendars. He can recall most anyone he meets birthdates – not always 100% but he’ll get the month right. And he loves to go over all the holidays – his second favorite to Dr. King’s birthday is Three King’s Day on January 6th. He has even made up holidays to represent objects he adores like January 7th has become National Accordion Day in our home – a day to roll out the barrels I suppose.

Along with the holiday, Sean likes a song. For Three King’s Day he insists we sing We Three Kings – which can be awkward at best in a 7-11 in the middle of June when all I’m looking for is the newspaper. Pink Martini has a great version of it that we’ll sometimes watch together on You Tube and leaves the singing up to the professionals.

So when he looked up at me, his voice straining to find the words to ask me,
“WHHHAT song is-s-s-is-s for Ma-Ma-RTIN LUTHER K-K-KING DAY!!!”

I had to think quickly on my toes which lately has been an “issue".

“A song?” I asked trying to buy some time.

“YES! A-a-a song.”

And so I sang “I have a dream, I have a dream, I have a dream, dream, dream, dream, dream” – to the tune of When The Saint’s Go Marching In. That’s all I had – not in a very creative space at that particular moment. But I must say, -the song, simplistic in words with a catchy tune was embraced by Sean. It’s locked into the internal I-Pod of his brain that randomly sings Christmas songs, country music and now original music (sorta) by no less than his very own mom.

I love when he sings it. He is quiet and playful and he doesn’t stammer or stutter nearly as much as he does in his regular speech. And when he sings it I can’t help but think he does have a dream. A big, fluffy, cottony dream accompanied by his favorite instruments: the accordion, guitar and violin – some magical symphony that somehow works, singing his dreams – his heart songs.

And I often think how important Dr. King’s message was – not only in the historical sense in the speech he gave in August, 1963 on the steps of the Lincoln Memorial in DC, but today, at this particular moment, when I see a small, beautiful, disabled boy who’s mother wants nothing more than for others to see him as equal. To see him as whole.

Such a gorgeous speech, such an amazing piece of writing. What brings tears to my eyes when I read it, what rings true today for all those who have struggled for equality is summed up beautifully with this line:

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight, and the glory of the Lord shall be revealed, and all flesh shall see it together.

So maybe Sean’s on to something. I like the message. Why just keep it to one cold day in January. Let’s have it handy, even in the middle of June. Happy Martin Luther King Jr. Day to you and yours.

It's May 31st Already? Are You Kidding Me???

2011-05-31T12:52:00.001-07:00

I can't wrap my brain around it. The matter of Time. Where is it going and why is it moving so fast? I was going to have so much done by June 1st. I was going to have the carpets cleaned, the oil changed, an office set up in the basement, an organized garage, winter clothes packed away, flowers planted, (maybe an herb garden -- who am I kidding?) and be down a solid ten pounds for summer wear. Instead, the closets are stuffed with ski jackets and boots, the loser cruiser is chugging along smelling faintly of burnt oil, I have no office in the basement, the garage is still a scary, dark place, carpets are scary, too, the only flowers I'm growing are of the weed variety and ten pounds lost? HARDLY!

I can blame the spring. It's been lousy. A day of sunshine here and there and then rain, lots of it, constant. My bones ache from the dampness. I can blame it on over scheduling myself. But the truth is there are days when I'm wrapped up in an electric blanket like a burrito watching a marathon session of Top Chef and eating cereal for lunch and petting the dog with my foot.

Partly, I'm in denial that school will let out soon and there will be no respite from taking care of Sean. Long days with lots of questions, the same questions, that can be repeated all day long.

"Who has birthdays in January?"
"Does Verle know Miss Becky?"
"Can you make a lower case F? Now a lower case G."
"How do you spell Easter?"
"How do you spell macaroni and cheese?"
"Why do people sneeze?"
"Talk to me, Mommy."

I am trying to be zen-like, be in the moment and not to over-think it. To try to let go of my irritation and stress and to just be. Easier said than done.

There are no play-dates for Sean. No "run up to the park and see what the kids are doing." He can't navigate in that world. He is just so different from his typical peers and in some small ways he knows it. That's the heartbreaking part. I don't think he wants his best friend to be a slightly exhausted and crabby 41 year old lady with bad posture but that's all he has right now, me. And I am going to try harder to remember that -- when I've spelled Blue Heeler for the fiftieth time or shadowed him in the yard most of the day to make sure he doesn't run after a car -- I am all he has some days.

Two weeks left and then my boys are home. Hopefully in that time I can at least set up an office downstairs and get the oil changed in the car. At the very least, I can plant some flowers -- the idea of something growing and blooming always gives me some hope. And we all need hope.

Give Me The Tooth, Nothing But The Tooth

2011-05-19T20:55:00.000-07:00

I guess I've been in a bit of financial shock lately. So much that the idea of writing has not really come up on my radar. I'm still absorbing the shock of the dentist bill for Sean. A cleaning and sore tooth that ended up totalling $1818.00. I'm not kidding.

First things first. His mouth was sore. It took me a while to figure it out though. He's not the type of child who is going to approach me and say, "Gee Mom, my tooth hurts. I think I have a cavity." Instead, lots of tantrumming, struggling at school and just general unhappiness. Then he asked me to scratch his tooth.

"Your tooth?" I asked.

"Yes." Scratch it." And he took my finger and tried to make it scratch his tooth.

"Why?" I asked pulling my finger away from his little tooth and tight grip.

"It itches," he said plainly.

"Does it itch or hurt?" I asked.

"Both. Itch my tooth Mommy."

My girlfriend Christy told me her son, who has autism, came up to her with a pair of scissors and pointed with the sharp edges to his toothache. This is the last resort usually. We wonder why our children seem to be upset too easily, or wake up too much during the night and it's not until a strange pantomime or request ("itch my tooth") that it finally makes sense. Aha. Your tooth is killing you. I get it.

Now, the discovery is sometimes a maze but the worst part is still to come. The actual dental appointment -- finding a dentist that is willing to work with your child. Many children with autism need to be sedated, even for the littlest event like a cleaning. So naturally we go to a dentist that provides "sleep dentistry" -- if that's not an oxymoron I don't know what is.

We went to Sean's dentist who is really a kind man and his staff is great with Sean. I've done this solo twice before with "itchy teeth" but this time I asked my husband to come with me since I was able to make a Saturday appointment.

Sean is okay at first. The assistant asks if he wants to watch Diary of a Wimpy Kid. My husband asks if they have Wiggles (much more Sean's speed) and unfortunately they don't. They begin with laughing gas, which by no means ever works for Sean or makes him laugh. He constantly pulls at the rubber mask and my husband and I are quite sure he's not even breathing the gas through his nose but rather mouth breathing.

Next it's the sedation. Sean will be "awake" but unaware of what is happening. Even still, we hear his holler and yell from the room. It takes quite some time to relax Sean and when the dentist does the cleaning and x-rays he discovers two teeth that need to come out.

This is when I am shown the bill. $1818 -- includes sedation, two teeth pulled, cleaning and xrays. My mouth runs dry. What choice do I have really. I wonder if I should offer up my liver for payment - -a little rusty from college and my early twenties but probably worth something or maybe a kidney -- I only need one, right? My husband looks like he might throw up when the bill is shown to him. I'm sure he's doing the math and that is like at least three airline tickets to somewhere really warm during the rainy season in Portland.

He staggers over to the mini-fridge and snack baskets and tries his best to eat and drink $1818 worth of fruit soda and granola bars. All in all, he ate maybe $4 worth and there were no free toothbrushes or trial size toothpaste to snag on our way out to make up for the rest.

It is the day before Mother's Day and my husband laughs, "Happy Mother's Day. Do you love it?" Just what I've always wanted -- $1800 worth of decayed teeth, x-rays and a little to-go plastic bag with sparkly strawberry Crest toothpaste and a toothbrush.

I agree and sign the papers and start consoling myself. Hey, at least they take credit cards. Just think what I will do with 1,800 VISA points. That's a little more than a $15 Starbucks gift card. I'm making money on this deal. This is actually a good thing...

After THREE hours, Sean is rolled out to us in a wheel chair. He is slumped over and looks like he's been on a two week bender, his eyes rolling to the back of his head, and his back curved like a comma, his chin nested in his neck.

"You okay, little guy?" My husband asks.

Sean's mouth is filled with gauze and he is as sweet as a lamb. No fight in him, just droopy eyes and lips.

"Sean, are you okay?" I ask, bending down to him and wiping blood from his cheek.

"I'm not Sean, I'm Bertie," he slurs and my husband and I look at each other. Even in this state, he still wants to change his name to Bertie. You've got to be kidding me.

The dentist tells us he will probably sleep most of the day. We snicker thinking fat chance. We wheel Sean to the car and he slumps into the back seat with me. He is like warm play-do and I love how pliable he is in my arms. Often times, I'm hesitant to touch Sean, knowing that it will startle him or upset him but at that moment, he is a blob and I'm enjoying his tenderness.

We take him home, and try to steady him, he staggers and falls into the wall -- this boy who has incredible balance can hardly make it two feet in front of him. He doesn't sleep but lays around asking us to pull out his tooth.

"It is out, Bertie. It's just going to be sore for a little bit."

A week later he finally stops asking us to pull out his tooth. I feel like we are through it, at least for now. All I can do now is wait for my credit card bill and dream about the money I'll make -- my $15 Starbucks card. Coffee, anyone?

Postcard to Bertie

2011-05-04T20:48:00.000-07:00

I went to a writing retreat last week. One of the speakers handed out index cards and asked us to write a "postcard" to someone we haven't had a chance to have a good chat with. For some reason, like most things in my life, my thoughts went to Sean and how often we have been struggling to make sense to each other. I knew I was probably supposed to write to an old friend or a family member I hadn't seen in some time, but my mind kept going to that red-head who even when he sits next to me can feel like he's a thousand miles away.

The teacher told us to write. We had three minutes:

Dear Sean? Bertie? Blythe?

Who are you today? This morning your hair looked like a tangled plate of spaghetti in red sauce and your eyes yawned open -- bright bluish green like swimming pools and I wish I could've jumped into them.

We had a tough morning, didn't we? Too much tug of war and not enough working together. And, honestly, I was glad to see you off to school. I needed a break. I do love you, little guy. Heart and soul. Be better today. xo Mommy

When the time was up we had an opportunity read aloud what we wrote. Only a couple other people knew that Sean has autism but the rest of the class, probably 16 others had no idea. As I read I heard laughter and people nodding. Yes they had all been there before with their children, grandchildren, friend's children -- wanting to rush the little grouchy rugrats out of the house. A break from the whining. Good riddance.

I hadn't meant to make people laugh, or smile or find it relatable. And I couldn't help thinking what if they knew my child was handicapped -- would my words seem harsh, maybe even cruel. Was I a lesser person for saying it? Would they feel bad laughing if they knew that Sean was autistic?

Gosh, I certainly hope not. If it's anything at all it's honest. Kids are tough. Kids with special needs can be especially draining and it's okay to turn away from the bus or the school drop off line and feel a bit euphoric daydreaming about a cup of hot coffee and reading the paper uninterrupted. When Sean is with me he is with me -- he is right next to me, his little mind racing asking me question after question ("Miss Judy call me Bertie? I was Bertie when I was in your tummy? I was never Sean.")

The teacher asked us to flip the index card over and gave us our second writing prompt. He asked us to write a postcard from the person in response to the one we had just written. Three minutes and go:

Mommy, I am in here. I am sorry that I am having a tough day. My neurological wiring has been off lately and I'm struggling to keep it together. I really need you to be patient with me. I need you to answer the same questions over and over -- it makes me feel safe and connected. I am floating, sometimes in the unfriendliest air, afraid to breathe or shut my eyes -- afraid the world will go black and swallow me. I don't mean to be like this. Most days I just want to show you who I really am. Love, Bertie (NOT SEAN)

Luckily we had the option to read what we wrote and I opted not to. I think it might have been too hard. It's the truth though. It's what keeps me connected to him, to loving him with all heart and soul. Because deep deep down, I know these are words that he wants to say but can't. And he needs me to believe that those words swirl in his heart and mind, and although he has never spoken them outloud, I trust that he speaks them in his dreams and thoughts.

Must See TV

2011-04-13T22:21:00.001-07:00

Rarely in my blog entries do I ever promote anything. Mostly because I'm far too disorganized but also because I don't want my blog to be anything more than advocacy, story and resource. That said, I need to pass along a press release I received regarding an upcoming six part series on the PBS NewsHour focusing on Autism that will begin airing on Monday, April 18th. It looks like it is going to be a fantastic report and definitely a 'must see' for anyone dealing with the struggles and mysteries of autism.

Knowledge is power. I'm hoping that you'll tune in to the series.

ARLINGTON, VA (March 29, 2011) – Autism - it’s a developmental disorder that has become increasingly prevalent, affecting 1 out of 110 American children. Despite years of study, little is known about its cause and access to treatment varies. Meanwhile, hundreds of thousands of American families hungry for answers struggle to care for the unique needs of children with the disorder. Among them, Robert MacNeil, co-founder of the PBS NewsHour and grandfather of Nick, a 6-year old boy with autism.

“I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story … until Nick,” MacNeil said, “because he moves me deeply.”

MacNeil and producer Caren Zucker tell the story of Autism Today in a 6-part broadcast series beginning Monday, April 18, 2011 and a robust online component where viewers can join the conversation. Ms. Zucker has produced many stories on autism and is the mother of a 16-year old son with autism.

Monday, April 18
An introduction to Nick and autism as a whole body experience: MacNeil brings viewers along on a visit with his daughter and grandson Nick in Cambridge, Massachusetts, to see how autism affects the whole family, including his 10-year-old sister, Neely. Nick experiences autism not just as a disorder in brain development but also as physical ailments affecting the whole body.

Tuesday, April 19
Autism Prevalence: Why are the numbers of children with autism increasing? At the UC Davis MIND Institute in Sacramento, California, MacNeil sees the wide range of different behaviors that comprise the autism spectrum. Anthropologist Richard Grinker argues that the rising numbers of children with autism is explained because conditions previously given other names, like mental retardation, are now included in the autism spectrum. Scientist Irva Hertz-Picciotto says the wider definition only partly explains the increased prevalence, pointing instead to a variety of environmental factors.

Wednesday, April 20
Autism Causes: The rise in autism numbers has caused a surge in research to find the causes. For the latest thinking, Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University.

Thursday, April 21
Autism Treatment: Although children with autism see doctors periodically, they go to school everyday. It is the school system that bears most of the burden of treating children with autism because treatment means education. MacNeil visits two schools in New York – a public school in the Bronx teaching 700 children with autism and a charter school created in Manhattan as a model of possibilities in educating children with autism. With only 30 students, it can use one-on-one teacher/student ratios employing intensive Applied Behavioral Analysis – the gold standard treatment for autism.

Monday, April 25
Adults with Autism: Although federal law mandates educational services for children with autism, there are virtually no services when they become adults. MacNeil profiles Zachary Hamrick in Mahwah, New Jersey, about to turn 21. As his family contemplates the uncertain future now facing hundreds of thousands of young people like him, his parents ask themselves, "What will happen when we die?"

Tuesday, April 26
Autism Policy: The NewsHour series ends with a discussion of the public policy issues raised in the series, including the enormous discrepancy in the quality and availability of services for children and future adults in what the federal committee that determines research priorities for autism now calls a "national health emergency" with a panel of experts including: Dr. Thomas Insel, Director of the National Institute of Mental Health, Catherine Lord, Professor of Psychology, Pediatrics and Psychiatry at the University of Michigan, Ilene Lainer, Executive Director of the New York Center for Autism – a private advocacy group, and John Shestack, a Hollywood producer and the co-founder of “Cure Autism Now” a former advocacy group.

Slump

2011-04-10T23:53:00.000-07:00

I've been deep in one lately. Unable to accomplish much that I set out to do. Mornings go like this: Make coffee. Have a sip. Put coffee down (somewhere that I won't remember like on top of the dryer, on the bathroom sink, up in Sean's closet or near the pet food.) Find coffee. Re-heat coffee. Sometimes can't find coffee at all and have to make another cup (will find coffee later -- most likely in microwave when I'm warming up something for dinner.)

Next, wake up Sean.

"Let's get up Sean,"
"I'm not Sean," a grumble rises from a tornado of covers.
"Who are you today?" I ask.
"I'm Bertie." A red head pokes out.
"Okay, rise and shine, Bertram."
"It's Bertie."
"Get up, Bertie."
The red head retreats back into the cave of blankets.
"I mean it. Get up. Now. Come on, Sean."
"I'm not SEAN. I'm BERTIE."

And this goes on and on...

Finally the heat clicks on and Sean/Bertie hops out of bed and perches on the heating vent.

I fumble through his drawers and pull out clothes, grab shoes from the closet and bribe him with breakfast if he can get dressed quickly. Well, maybe not quickly, but at least get dressed.

Breakfast. Smoothie. Plop all the ingredients into the blender. Whirl. Find Rice cakes. Find Peanut Butter. Where's my coffee?

Let dog out. Beg dog not to bark. Just do your business. Dog looks at me like "Where are you going? Don't you want to hang out in the rain and watch me?"

Back to bribing Sean into kitchen with smoothie. He reminds me, losing his patience that he is Bertie. The dog is barking. I can't find my coffee.

Clean out blender. Make lunches. My oldest is easy. Turkey and cheese sandwich, milk, chips and a granola bar. Sean, not so easy. It's as if I'm packing lunch for a squirrel. Almonds. String cheese. Potato chips. Fruit leather. Soda water or juice (whatever I pack drink-wise always comes home unopened.) Rice bar. What Sean begs for everyday is the even unhealthier cousin of Hostess -- Little Debbie. Every day it goes.

"Can we get Little Debbies?"
"No."
"Why not?"
"They could make you really hyper."
"I like hyper."
"Well the rest of us don't. Besides, they're not good for you."
"Why not?"
"They could last forever on a shelf."
"I like them."
"We are not getting them."
"Why not?"

Sean's form of crack. He admires Little Debbie at the grocery store, in the lunchboxes of fellow students and he googles them on the computer. Most days my computer is on the Amazon page with that happy-go-lucky Little Debbie peddling her Honey Buns or Cosmic Brownies. Don't be fooled by the rosy cheeks and pretty smile.

Wake up my oldest. Remind him to go through the garage and CLOSE the garage door (if I don't specifically tell him, the garage door will be left open.) Also, put the dog in his crate. Don't forget lunch. And lacrosse practice tonight. He nods his head but I'm pretty sure he'll fall back asleep. I leave the phone on his dresser. It's off to school.

"You tell Miss Judy that I'm Bertie?"
"Yes."
"She will call me Sean."
"Actually, she will call you Bertie. She is way too nice to you, Sean."
"I'm Bertie."
"Whatever."

I call home. My oldest picks up. He is up and moving. After I hang up I wonder if reminded him to close the garage door.

I stop by the office and help out a little bit. Head to the post office. Do a little grocery shopping. Come home -- yey! the garage door is closed. Clean up the kitchen. Walk the dog. Feed the cat. Do some work for my classes. Beg myself to write something (opt not to, wonder if there's a Top Chef marathon on Bravo, look outside, watch rain coming down in buckets, wonder if the backyard grass will ever dry and start looking for my reading glasses.) Usually the search for the glasses (and mind you, I have at least half a dozen pair) can take anywhere from a minute to half a day. Often times, they are perched on my head and when I'm at my wit's end looking for them I'll walk by a mirror or a reflection in the sliding glass door and see them.

Look at clock. Geez, where did the day go. Start to feel overwhelmed. Need to check in with friends. Need to answer e-mails. Make appointments. Figure out what I should cook for dinner. Do laundry. Write scolding letter to Alaska Airlines regarding "Spring Break Travel From Hell Nightmare". (Oh, that's another post for another day...) Start book that looks to be the size of the Holy Bible -- must read almost 600 pages by Wednesday for book club.

Why am I just standing still looking out at the rain? My coping skills are horrifying lately. Why is it so tempting to lay under the glass coffee table in the fetal position and take a nap? Why is the dog barking? Why can't I just organize my life?!

Hustle to the bus stop. Here comes Sean with a name tag that says, "Buster."

"Who are you now?" I ask.
"Bertie."
"Your name tag says Buster."
"I'm Bertie now."

I read the note from class. He has had three name changes: Bertie, Blythe and finally Buster. She tells me the name tags seem to be working. He is less anxious and isn't persevering as much on names. Sometimes I can't believe this is my life. I wonder if Miss Judy feels the same.

Sean/Buster/Bertie wants to talk. He wants to spell. He spells Big Big World. He spells Captain. He spells Wiggles. I wish it wasn't raining so hard and he could play outside. I wish we could get a game down from the closet and play it. I ask him if he wants to play a game or something.

He looks irritated. "I want you to talk to me." he says. Which means he wants to spell the same words over and over and then he wants me to spell them. He hops and stims and spells words. I try to gage if he seems happy. Some days I just want him to be happy and not worry so much about him and his inability to play games or have friends or to carry on a conversation that makes sense to another person. It's hard to imagine how difficult that can be for him and how much I take that for granted in my everyday life. I try to remain upbeat. I make a deal that we can spell words for fifteen minutes but after that we have to something that I want to do (and clearly drinking martinis with a ten year old can't be an option.) I set the oven timer and when it buzzes I tell him we are going to go downstairs and he can play on the exercise ball while I fold clothes.

He is my little shadow. He hops and does amazing tricks on his ball and I try to remember that we all have fun in different ways and he seems to be having fun. And that has to be enough for now.

Febru-DREARY Finally Over

2011-03-02T20:14:00.000-08:00

The last month, even with only twenty eight days, can sometimes feel like the longest, most tedious month. We battled rain, a soaking downpour for days on end, leaving my hair frizzy and fingers like prunes. And with the rain comes the isolation. The ground muddy and completely soaked with puddles like small lakes spreading around us, trapping us indoors.

I complained about the weather in my writing class. A fellow student reminded me that the rainy winters are what keep the population at one million and not seven million. The summers are incredible, blue skies and sunshine, mountains in the distance but first we must suffer through a long, wet winter.

I often wonder if the lack of sunshine makes Sean harder to handle. He doesn’t have the opportunity to run and climb trees and ride his bike. He plays on his gymnastics rings, hops up and down the stairs and rolls on his giant exercise ball. He is often edgier and stims more. And I am in not in a good mood either – sore throat, congestion, headache and cabin fever-y. I find myself being short with him when he begins his list of questions over and over:

“There is no such thing as a talking door house?”

“Why did Dad clap at the hockey game?”

“How do you spell Wiggles?”

“Everyone has bad days?”

And I respond quickly:

“No such thing as a talking door house. That’s on the Wiggles and it’s a TV show.”

“Dad was excited and happy that his team was winning.”

“W-I-G-G-L-E-S”

The last question always gets to me because there seems to be a certain unreachable sadness in his voice and loneliness in his eyes.

“We all have bad days, Sean. We have to work hard to have more good days.”

Sean struggles to have good days. He’s had a couple in a row but then the pressure gets to him and the note comes home saying that he had to cool down in the quiet room or cried and threw a tantrum outside at recess.

“Kids bump into me. They throw the balls in the wood chips.” He says this over and over when I ask him about recess. The children are playing games of tag and wall-ball, and Sean feels as if he is being swallowed whole by the ground, squeals and laughter from children startle him, his heart racing and his hands clammy with sweat.

I try to explain that the kids are playing and that they are not intentionally trying to stress him out but he has little understanding. He repeats back to me what I say in question form.

“It’s not on purpose? It’s only an accident? Don’t get angry?”

I hope Sean can, at some point, feel somewhat in sync with the other children or at the very least find better coping skills and understand social situations better. For now though we take it day by day and try to chart some kind of progress.

The truth is we are crowded in the house, the windows streaked with rain and pine needles, the gutters clogged with mossy leaves. The schoolchildren are crowded, too, trying to carve out some space to join in on some fun underneath the covered play area. And we are all just trying to get along and to get through it without losing our patience and wits. At least it’s March – we are a little closer to sunshine.

Trying To Find A Spring In My Step

2011-02-14T10:24:00.000-08:00

I took the dog for a walk this morning. The weather was dull - A slight drizzle and the sky quilted gray but the air temperature warming. I was searching for signs of spring, tired from the confinement of winter.

As my feet sloshed along I saw signs. Crocus and tulips trying to muscle their way through the cold and damp ground, the trees budding with silver fuzz ribboning around branches and the smell of earth and mud warming and mingling with the wet sky. I tried to take it all in and let it thaw my tired joints and aching heart.

My dad called and asked how Sean is doing. I really don't want to talk about it. I'm not even sure why. I just say the same thing that I say to anyone that asks me, "He's okay. Some good moments and some not so good moments." I just don't want to get into it all. I am tired. I feel bleak. I am finding it hard to hold onto hope and the winter gives me little purpose or reason to do so.

I need sunshine. I need to see the mountains to the east, the strong shoulders of rock and earth scraping a blue sky. The weather echoes my own feelings, gray and lost and murky.

Sean is trying hard to maintain his moods. It's as if his moods are carnival roller coaster rides, highs and lows, fast and sudden stops -- moments that can be thrilling and moments that can be frightening. It's a lot for a ten year old boy.

I'll leave on a good moment. The morning time. Sean creeps into our room, his hair cut short and ruffled on top. His face is more boyish, his cheeks ruddy and his smile is large and messy with teeth missing and teeth growing partly in.

"Hi Mommy," he says crawling next to me, his skin smells like apricot oil and his hair is soft on my chin. I squeeze him, hold him tight and kiss his messy hair. He is my valentine this morning. A sweet boy filled with love and a need to belong and I am the lucky one to find him first.

Winter Blues And Some Good News

2011-01-24T22:08:00.000-08:00

January is a tough month. It feels like 31 days of a nasty holiday hangover. Each day I promise to write something, anything and each day I end up curled on the heater vent reading magazines or trying to engage in some sort of acceptable meditation or come up with some excuse for lying perfectly still while the hot forced air dries out my skin.

I suppose I am like this every winter. I hear it in my mother’s voice as we commiserate over the phone. Where she is it’s below zero, the sun’s muscle powerless in the frigid air and where I am is socked in with fog and rain, the gutters spill like waterfalls onto the soaked lawn.

We did travel in search of sun -- to Sun Valley, Idaho, the sky an unreal crayola blue against the crisp white Sawtooth range and the sun blaring over the peaks -- eerily similar to a child’s drawing proudly hung up on a refrigerator door.

Sean is becoming quite a skier. My husband, with the patience of Job, taught him to ski four years ago and taught him well. It did not come easily. Any mere mortal would have thrown in the towel on the first day. I can still clearly remember one incident (of many) when Sean took a terrible spill and screamed and tantrumed, hit and scratched my husband ran in circles and rolled in the snow. My older son and I watched the whole ugly scene unfold from above in a chairlift.

“Sean!” my oldest yelled down to the bundled up boy moving as if his body was exploding in flames, “You like the chairlift?”

Sean became still for a moment, then his head darted about to find the voice and then he spotted us up above, his cheeks still visibly red from his tantrum and from burying his face into the icy snow. The idea of being lifted through the new night sky on a chairlift, his body sifting through starlight, was the redirection he needed and he trudged over to my husband demanding another ride, getting back into his bindings and pushing his hands into his mittens. The neurological storm had cooled. He was ready to go again and my husband, seemingly unaffected by it all, was ready to take him for another run.

You can anticipate at least two or three horrible meltdowns with Sean each day of skiing. A wipe-out will always precipitate one. If somebody skis to close to him is another. And then there are the unexplained, the ones that come out of nowhere, the meltdowns that usually start with something so illogical (“Why don’t I have a W in my name?” or “Sam didn’t mean to clap?”) that you just have to hold on tight and hope that it lifts as quickly as it has landed.

Sometimes a plate of French fries will distract him. Or hopping into the snow drifts with his heavy ski boots. It’s usually hunger or his body out of sorts, tumbling away from him and making him disregulated. And sometimes, we take turns walking him to the car – his hot tears and screams drawing stares and comments. On the worst days, we call it a day and hope that the skiing will prove to work as some type of exposure therapy.

But I have to say, I am wildly proud of my little guy. And of my husband. He believes in Sean in a way that I don’t know if I can. He could care less what people think of his boy because he knows what a trooper Sean is. He sees a skier in our son -- a thrill seeker. He sees a child that can do anything if only he sets his mind to. In this new year, I want to be more like that -- I want to hope and I want to believe that Sean can do anything he so desires. Why not?

Another Birthday...

2011-01-11T07:34:00.000-08:00

Sean turned ten. I can hardly imagine that he is in the double digits. A decade. Wow.

My husband and I were not looking forward to the milestone. We wanted to keep him nine for another year, give him time to possibly catch up to his age. He is nowhere near a typical ten year old. Not even close to a nine year old. And watching him become a year older can sometimes be a painful reminder of how far behind he is and how much work he needs to make up in order to someday catch up.

In the years past we tried to have birthday parties and find the “one” gift that would truly amaze and transform him. The parties always ended up with Sean being too overwhelmed and the gifts were tossed aside and disregarded. Let’s face it; he was just trying to keep it together in what he perceived as complete chaos, utter mayhem.

So this year we invited good friends over that know Sean. A husband and wife and their two children who Sean counts as two of his “best friends”. She asked what she could get Sean and I told her,

“Nothing really. He doesn’t get the whole present idea and he really doesn’t play with any toy in particular.”

When I asked Sean what he wanted for his birthday he said,

“A gosling.”

At first, I imagined that reality star woman Kate Gosselin and her brood of children and thought,

“Well, it’s a sacrifice and she seems like she could be a lot of drama and be totally high maintenance, but maybe I can pull it off. It would be a lot more kids to house, though.”

“Or maybe a guinea pig.”

He followed with, and the image of the “always reinventing herself” Kate Gosselin vanished into a picture of a fluffy baby bird and a rolly polly giant hamster. I don’t know which image seemed more realistic. Sean is not very good with the cat and dog. We had a fish that Sean took out of the bowl in order to “take for a walk”. Luckily I got the fish back into the water but that one could have ended badly.

What we decided to do was have pizza and cake and I shopped at the Plaid Pantry for the birthday loot. My husband reminded me of what Sean really wanted – Root beer, Ritz crackers, a Pop Tart and Reese’s Peanut Butter Cups – essentially a hillbilly survivor kit. These items have had to be ruled out for Sean – to him these over-processed, dyed-added, corn syrupy delights are like crack to a crack head. He can’t stop at one Ritz. Nor could he ever just have a “sip” of root beer. We don’t even keep ketchup in the house because Sean will guzzle it down like water. My older son wanted to see if we could do a successful intervention on the ketchup alone…

“Sean we love you and we are afraid we are losing you to ketchup…”

Weirder things have come out of our mouths.

And my friend ended up buying Sean a couple of books and two Butterfingers. He threw the books aside with one hand and tried to peel off the wrapper and bite into the candy bar with the other. He followed it by a guzzle of root beer. We put the candy in the freezer and told him he could have a Pop Tart (his form of black tar heroin) in the morning. We hid the crackers and emptied the rest of the root beer down the drain after he made a pretty good dent and had forgotten about it. Luckily the” out of sight out of mind” trick works for Sean.

It was the first birthday in recent years that I didn’t watch Sean sit in a crowd of kids, tear into a set of “Read Along Books” and a Soccer ball and watch them get hopelessly flung to the side while his eyes were steeped in terror and worry. I didn’t pin my hopes and dreams on this birthday – it had been ten years since I went into the hospital – the snow falling from the sky like loose feathers from a tear in a pillow case and the streets growing thick with ice. Ten years since he was placed in my arms and a silent promise was made to just simply take care of him, to love him, no matter what.

A Wish for 2011

2010-12-29T20:25:00.000-08:00

It has been ten Christmases. Almost ten New Years. You were born in January of 2001 and it is hard to imagine that it is almost 2011. I miss the boy I thought you were going to be. The handsome red head with broad shoulders and laughter. Someday you would break your mother’s heart as you grew up and grew away. I would pine for the soft baby I held in my arms, with eyes fixed on me like milky green-blue marbles and pink, perfect lips. You would grow older and wiser and leave me empty and alone.

But it has been ten Christmases. And almost ten New Years. And you are still a little boy, soft and tender. I have had to let go of the boy you were supposed to be – a heart throb and charmer and remain in love with the boy you are, frozen and still, a five year old trapped in all the makings of a ten year old.

I watch other children watch you in wonder and amusement, your body hopping and snapping like a muscle spasm in a giant’s thigh. I want to protect you and cover their eyes and tell them they don’t know the mighty heart that beats within the walls of your small chest -- a boy who, to know fault of his own, lost pieces of himself, as easily as gritty sand falls through fingers on an ordinary day at the beach. You were somebody one minute and somebody else another.

I loved you from the moment you were born, a twisting, wet seal pup on a scale with a flash of red hair and a determined holler. You were a piece of me, ordered up at a deli counter to be weighed and wrapped and snuggled in my arms, newspaper print leeching onto my fingers, tattooing your story forever on my palms.

If I could make you whole I would. I watch you struggle and cry and I stand helplessly – no parent should go through that. I wish a mother’s love could mend the cracks and repair the seams and keep you whole once more. I can’t help but feel that I have let you down, somewhere along the way and for that I will always feel the rugged braid of scar tissue that interrupts the smoothness of my heart.

But who is to say that it is all final, that you won’t rise like the stealthy Phoenix from gray ashes and shake off the blinding dust. That you might soar once more, your heart and soul scraping against the belly of the sun. It’s the least you deserve, little one, for the frightening and dark world that you have grown to know. Let this new year offer you more hope and opportunity to feel more akin to those who love you and live in this world. Let this new year welcome you home to the arms of those who never tire, waiting patiently for your return.

Band of Mothers

2010-12-09T19:42:00.000-08:00

Tonight I went to my oldest son’s holiday performance at the school he attends. The bleachers were pulled out and folding chairs were lined up and down the fading, scuffed gym court. There were performance by violinists, a jazz band, a choir and a singing group. All the oldies and goodies and some old songs with a new twist. I arrived with Sean in tow, my husband travelling for business and no kid sitter available.

Sean was antsy from the start. He needed to go to the bathroom but wouldn’t because the school was too crowded. He pulled and yelled at me and I tried to manage him in an ocean of unfamiliar faces. My nerves buzzed like angry wasps circling a nest and I felt myself perspire under my arms and on my neck. I wrestled him into the gym and found a spot on the bleachers next to the exit. I took off his jacket and put on his headphones to help muffle out some of the noise of the crowd settling into the gym. I could feel the sting of tears burn in the backs of my eye sockets, swallowing hard and trying to breathe my way around the curb of pain that parked in my throat.

He stood up suddenly with his arms opened and said my neighbor’s name softly. I saw her walk up and hug him, his body softening and the edginess fading. He told her he wanted to hop and she asked if it would it be okay to take him for a little walk. I said of course and quickly handed Sean off to her realizing that what she offered to do was quite a favor considering Sean’s uneasiness with the crowd and the difficulties that come with managing an autistic child in a nightmarish situation.

As they left I thought, “What am I thinking? Why did I just pawn Sean off on her like that? That wasn’t very nice of me to do that.”

She came to watch her daughter but instead she was throwing a line into the swell that had gathered around me and she kept me from drowning. A few minutes later she came back with Sean, his hands wrapped in hers and all of his tenderness leaning into her. He was so thrilled to see her there (and so was I).

Shortly after, one of my very closest friends walked up and Sean hugged her too. Another remarkable soul telling me that she could take my oldest home (completely out of her way) if it was too much for Sean. I felt the stress slowly lift with the steaminess of the gym air and felt my heart rate slow down to a more reasonable pace – thankful for the comfort of friends.

We watched the kids sing and dance and I thought how fun it was for my oldest and then I became a bit sad for Sean realizing that he wouldn’t have the same experience. Without the kindness and regulation of my neighbor’s arms around Sean I don’t think he would have even stayed to watch. She kept him in his skin and allowed me to see my oldest perform. I watched Sean watch the older kids, his red hair ruffled by his headphones, his cheeks ruddy and his eyes clear and polished. And I did feel a pinch in my heart - -another rite of passage that he most likely wouldn’t take part in – the idea of a crowd of such size in a packed gymnasium with drums and trumpets and sweetly high-pitched adolescent voices – the stimuli too great for my youngest to ever endure. He would most likely never be a boy in black slacks and a matching shirt swaying and singing with all his heart on a stage with friends. This is one of those moments that I probably took for granted when having children and the reality of the difficulties that my son will face throughout his lifetime leaves me at a loss for any useful words.

He lasted the whole hour and some minutes, much thanks to my neighbor who held him closely and rubbed his back. He was excited to see her daughter who gave him a high five and a warm smile. I couldn’t help think how five years ago, when we moved next to this family, I had no idea how much their friendship and support would mean to us – how much we would come to rely on the goodness of their hearts.

And I am reminded of my dear friend who gave Sean a hug and me a “get out of Jail” free card; who four years ago came up to me after Sean kicked me and yelled at me in front of a crowd at my oldest son’s soccer game and put her arm around me and just walked with me while I cried out of embarrassment and shame. I had only met her once before when our boys got together to play. She rose from a crowd of people that didn’t quite know what to make of the scene unfolding near the swings and with such tender compassion and courage saved me from public heartbreak and gave me a soft place to hang my head and cry.

I am amazed at how the people that mean the most to me in my life are people that I have connected with through Sean. That somehow he is my beacon, a sweeping light in a sea of darkness bringing into focus all the details of survival and constantly reminding me that all we really have in the end is each other and our innate ability to help when we see panicked arms hit the air. That without this little boy in my life I might not know such truth and beauty and strength in people and what a privilege that truly is.

As a teacher reminded me in class the other day -- stars are out all day long but it takes darkness to actually see them. That we are able to see the moon so well in the winter because the trees have lost their shaggy coats and offer up more space between their naked arms. And that without Sean and the chaos that often comes with his disability, I wouldn’t recognize such incredible peace and deep friendship so readily. He is a blessing. I have to remind myself of that, particularly during the dark days, he is a blessing, a torpedo of silver lighting up even the gloomiest night.

A Lucky Mistake

2010-11-30T20:42:00.000-08:00

Yesterday I had a calendar mix-up. I looked at an appointment card I had and it said Monday, 12/1 10 a.m. Problem was that it was Monday but the date was 11/29. So which was right – was it indeed Monday or was the appointment Wednesday, 12/1? I called but only got voice mail. I decided it was best to drive there to just be safe. My schedule was sorta flexible and a fifteen minute drive to the east side wouldn’t be too disruptive.

As I drove across the Morrison Bridge to the east, I saw Mount Hood glowing like a polished trophy, cast in shadows of blushing silver. To the north, Mt. Saint Helens popped like a dreamy bundt cake swirled with velvety white frosting. I felt my heart bump against my chest. How lucky I was to see this. Usually late November means that we are socked in with heavy gray clouds, smudged fog and the mountains seem lost to us until late spring. But not this day and I was surprised and happy to be able to catch this seldom seen glimpse. I felt lucky. Like this was a good omen.

At the same time I was listening to a song that I was really enjoying. When the mountains came into my view the words, “I am not the mistakes I carry. I am who I am” sang out from the speakers. It was a strange and serendipitous moment for me. I felt tears in my eyes and my fingers clenched the steering wheel. I have been trudging along these days, feeling overwhelmed and hurried through the holiday madness, watching the slippery sand free-fall through the timer and feeling panicked. And yet, in that moment, time stood still, worries melted and I felt real joy. As if something greater than my small life was saying,

“Slow down. Hang on. Look East. Look North. Listen to the words. There is greatness and beauty in your life and you are not your failures.”

I felt a stirring in my bones, maybe in my soul that this was a moment to be had, an instant to take pause and breathe – to bask in the undisturbed peace that exists in the natural world and to let all the synthetic noise and clatter of the holidays fall silent.

Sometimes I think I might be losing my mind. I am always trying to make sense out of this life of mine. Why things are the way they are. And I can’t help but to trust that grace and beauty and hope are within the distance of my tired, wrinkled fingers. That I can feel them like I can feel my boys heartbeats when they fall fast asleep in my arms.

And I don’t know what that “true” meaning holds for me. I do know that it has something to do with my children, especially Sean. As much as it has been a rough road with Sean, it has been one that has stretched my mind and heart like pulled taffy. He continues to shake me out of my comfort zone of a one dimensional life and pushes me into an ocean of tumble and salt and wonder. I don’t know if I would be as happy and fulfilled as I am with him as I would be without him. That means something, when I consider all the heartache and break we have had raising an autistic child. He is the sweet and sour in our lives. He makes the good days better because we have lived through the rough days and have crawled out on skinned knees and hearts.

When I arrived at the office I was told my appointment was indeed, Wednesday and not Monday. I didn’t mind though. I wasted “valuable” time but what I saw and what crept into my mind and heart was worth it. If I didn’t check on the appointment I wouldn’t have travelled in that direction, to the forgiving east and the vast north, and I wouldn’t have seen the muscle of mountains and shimmering sunlight tickling the horizon. I wouldn’t have heard the song that told me to let go of my mistakes, that they are not who I am but rather a small part of my history. I wouldn’t remember how lucky I am to have all that I have. I am lucky. Despite what others may think of a mother with an autistic child. I am one lucky person.

Here Comes Santa Claus

2010-11-22T18:08:00.000-08:00

Last Sunday we took Sean to see Santa. This time we did it differently. No giant shopping mall where the line snakes for miles, weaving through ropes with families pressed against other children and parents anxiously awaiting their turns to tell the big guy in the red suit what they would like for Christmas. We have done this in the past. Sean has some really good strengths. Standing in a long line, packed like sardines, waiting patiently is not one of them. Usually my husband and I would take turns chasing him under the red velvet ropes, catching him mid-hop and pulling him back into line as he threw elbows and arched his back. We were the family in line that seemed to be standing on an active earthquake fault line – swaying into others, my hips and shoulders brushing into moms and dads and my constant apologies falling flat. It got to be such a stressful tradition that we were ready to say the heck with it.

Luckily, we got word of a Santa that was going to be available to kids with disabilities, including autism. This would have to be one understanding, patient, tolerant Santa. The thing with autism is that if you have seen one child with autism then you have seen one child with autism. Autistic children are like delicate snowflakes, similar and yet no two are ever the same. Who is to say how each child may react? Often their reactions differ greatly.

The clinical director, Kathi Calouri and the program director, Eric Hamblen at PACE Place in Beaverton, Oregon (http://www.paceplaceinc.com/) arranged to have a Santa for their many clients who, year after year, have struggled with taking their disabled child/children to see Santa – a typical tradition that most take for granted. In fact, most families with children who have autism don’t even bother. The unpredictability coupled with the lack of understanding and tolerance can make a holiday must-do into a CHRISTMAS NIGHTMARE. It’s no fun when your child hops around Santa and stims, or bites Santa or screams at the elf and the others in line. It’s even harder when your child is not a feisty three or four year old but a growing eight or nine year old. As the parents of these children we can see the fright building in their eyes and the tiredness in their bodies from trying to hold still in the noise and crowd. We are constantly preparing for the impending storms that hit hard while out in public.

We paid for a private fifteen minute time slot to bring Sean into PACE Place. Kathi and Eric were on hand, along with a photographer, a wonderfully charming Santa and an Elf. There was no line, no others milling around waiting for their turns and my child’s excited hopping and yelping was welcomed. We had the opportunity to take a family picture but since my oldest son was at a hockey game and I came in sweat pants and a hair that was in desperate need of a brush, we decided to just get the pictures with Sean. The photographer took a dozen pictures while Sean talked to Santa and hugged him repeatedly. There was no rush, no uncomfortable glances among the others and no heartache for my husband and me. In fact, we were quite happy to see our boy participate in an activity that was slowly becoming impossible to accomplish. Our handsome boy was all smiles enveloped in the arms of Santa and whispering that he would like a Jakers DVD for Christmas.

I am thankful that there are people in this world that share their heart and compassion with families like us – that understand how tricky and lonely the path can be that we must travel and are happy to offer an elbow and share with us a knowing smile. As we drove away, my husband said,

“I’m glad you signed Sean up for that. It’s good to see him so happy.”

Autism makes life a lot tougher for all of us. But it also makes moments like these more beautiful and tender -- a glossy photograph capturing my boy’s smile and happiness while being held in the arms of a kind Santa is one of the most precious gifts.

About A Weak Back

2010-11-13T10:39:00.000-08:00

The other day, after picking up baseball cards and missing socks and Halloween candy wrappers from my oldest son’s bedroom floor, I felt a thwack, like the give of a folding chair collapsing. Then I realized that I couldn’t stand straight, my back in the shape of a lower case r, hung over the bottom half of my body. It had felt like a giant punch landed on my lower back and tailbone. Crap. I don’t have time for this. I went to my knees and rolled over onto my back trying to stretch out my spinal column, arms and legs. Then I turned over and did the sleeping child yoga pose. Back to my feet and I could barely stand. I scurried around trying to complete a few more tasks before the carpet cleaning guy was coming. I couldn’t cancel – the rugs had been so neglected that I was quite sure I could start a plague from my kids rolling around on the floor. I pushed the vacuum cleaner, each tug a pierce jab to my back and tried to pick up a couple of chairs and an ironing board and place them on the tiled kitchen floor.

I knew how it started. The past weekend we had gone down to Corvallis for Sean’s soccer match. It was the largest gathering of soccer teams for the Special Olympics of Oregon. Sean was ready to go in his cleats, shin guards and a soccer shirt that fit him like an evening gown – if only he had the right belt and matching hand bag. He is by far the littlest on his team and was one of the youngest at the tournament. He had three games which his team managed to win two and Sean had three goals – unfortunately all goals were scored against his own goalie. Sean didn’t seem to mind as he rolled on the ground, hopped, cheered and clapped – I was certain he’d get a flag for over-celebration but didn’t know if it would count since the other team was already being rewarded by Sean’s misfires.

In between matches Sean would run up to me at full speed, then vaulting his strong, muscled body toward my open arms and I’d catch and spin him. My oldest wanted to get in on the fun and nearly mowed me over. We decided that he could hop on my back instead. So between entertaining Sean and trying to accommodate my growing oldest son by piggy back rides, I had pushed my back to the brink. It only took a few bend overs (BEND AT THE KNEES! I always forget this) the following week to find myself crumpled like a question mark.

I shuffled around the house, greeted the carpet cleaner guy as he surveyed the carpets.

“When was the last time you had these cleaned?” he looked up at me after finishing up in Sean’s room, the worst swag of carpeting in the house.

“A year ago.”

“Really?”

“Yeah. The boys drag everything in the house and with all the rain and pine needles it gets pretty bad.”

“Maybe you should do it every six months,” he said, checking off a million recommendations --- enzymes, extra spot removal, scotch guard...

“Yes, definitely,” I said crouched over like I was staring intently at my own belly button.

In the evening, I made it to my writing class and picked up my oldest from his hockey practice. All and all I muscled through, although my oldest looked at me strangely and asked, “Why are you walking like that?”

I thought of some smart ass comments, like, “trying to mix things up,” or “you don’t think this makes me look younger?”. Realizing it would be missed on him I said, “I hurt my back.”

“How?” he asked almost in disbelief. He might as well throw in, “because God knows you don’t do ANYTHING.”

“If you must know, part of it was from lugging you and Sean around at the soccer tournament. You guys are too big to be jumping on me. And I was cleaning up the garbage on your floor. Is it really that hard to put socks down the laundry chute and to throw out wrappers?”

“I’m sorry,” he said, and he did feel bad seeing me hunched over the steering wheel.

Luckily, today I am feeling much better. The back is stiff but at least I look closer to a forty year old than an eighty year old. I’ve done stretches, filled up a water bottle with hot water every night, took Aleve and slept one night on the floor (my husband suggested this but I think he just wanted the whole bed to himself because I felt pretty stiff the next day.)

It scared me though. What would I do if I was debilitated and couldn’t do the things that have to be done? Sean doesn’t have the capacity to understand that my back had gone out. He has needs and he is short on patience and understanding – it’s the nature of autism. My oldest has a schedule like a CEO of a major corporation. There are hockey games, practices, clinics and school, choir, homework, piano lessons, science projects, friends and birthday parties.
Seriously, there are times I feel like the activities director on a Disneyland Cruise ship. I have to be able to focus and react even though the years are ticking by and the paint is starting to chip.

So what if I did my college term papers with a Smith-Corona typewriter (the last two years we did have computer labs and I owned a couple of FLOPPY discs and printed out my assignments on a charming dot matrix printer); or the current kid-sitter who was born while I was in my early twenties living it up in Chicago. Yes I can get directions from an actual road map and dial a rotary phone and open my garage with my bare hands and drive a stick shift – these are feats my kids will never know as they push buttons, make voice commands and download information to their I-Pods and GPS devices. I didn’t even hold back on the middle school kids who showed up on Halloween night as “80’s girls”, big hair, tights and blousy shirts with large belts and lots of pink lipstick and sparkling eye shadow. I gave them the good stuff, the Reese Cups and Snickers. Secretly I felt really old and somewhat ridiculed and wanted to throw my head into my son’s pillowcase of treats and eat my way to the bottom but I managed to stop myself. It helped that he was in the room and that at first glance all I could see peeking out of his bag were Sour Skittles and an unraveling Tootsie Roll. There’s no saying what could have happened if I was faced with an Almond Joy and Kit Kat.

But I digress. We are all growing older. Each day. I can’t stop it but I can try to make the most of it. I just have to remember the boys are getting big and that I can’t be a human trampoline for them. Other than that, I’ll try to re-commit to yoga and continue to take my vitamins. And to laugh. Somehow that makes everything a lot easier.

A Dog Day Morning

2010-10-30T18:11:00.000-07:00

Early this morning I went to drop the puppy off at the vet. He’s six months old and is officially ready to be neutered. There was a woman behind me with a French bull dog, her eyes squinty and red. She smiled meekly and said,

“I’ve been crying all morning about bringing Midge in here for his neutering. I was supposed to do it 3 months ago but chickened out. I feel just terrible.”

I smiled weakly and tried to sympathize with her and her dog Midge, who clearly had no idea what was in store for him, his tongue sticking out and his tail wagging. “It will be fine.”

I was glad she wasn’t there earlier when I was questioning the billing.

“What’s this extra amount for right here, this $140?”

“Well we can’t seem to locate his second testicle. It hasn't descended. It may be in his abdomen.”

“And that’s going to cost an extra $140. Do I have any other options? Does the testicle need to come out if it’s lodged in his abdomen? If it’s in his abdomen can he still be a dad?”

“He can still get a female dog pregnant.”

“Really? It’s just, it’s a lot of money and I have a lot of expenses. I have kids and all. Can I get a second opinion?”

“Well, you are on a wellness plan and you’ve already made payments toward the neutering. Another vet will tell you the same thing and it will cost pretty much the same. We can’t move forward unless you consent and it’s in your dog’s best interest.”

As I talked I noticed the dog nurse getting more irritated by me and my questions. Don’t get me wrong. I like the puppy. He’s oodles of fun and companionship. And I’m all for the neutering – it’s the responsible thing to do and if it means less humping and marking his spot I’m totally game. But learning that he has a unique situation that may require more invasive surgery? The odds once again not in my favor? The puppy’s situation not typical? Seriously?

As my girlfriend, who has two disabled children said,

“When they start with, ‘the chances are minuscule,’ I always have my guard up.“

We are moms who have the one child in one hundred and ten that has autism. We have the one boy in seventy that has been diagnosed with autism. We are part of the statistic. We are not the lucky ones nor are our boys who have to fight everyday to try to feel part of this world.

I sign the papers of consent and hand them to the dog nurse and give him the leash.

“Do you need anything else from me? I need to split and get my kids off to school.”

His arms folded in front of him, he takes the leash, his face still in a frown, “Would you like to say good-bye and good luck to Duncan?”

I must look flustered, my reading glasses perched in my messy hair, sleep still in my eyes. Its 7 a.m. and still dark outside. I wave at my puppy who is more interested in the dog nurse’s shoes and pant cuffs and bend down to scratch his floppy ears.

“Be good, Duncan.” I say, confirming the dog nurse’s suspicion that I’m a crappy pet owner.

“When can I pick him up?” I ask, getting ready to leave.

“We’ll call you when he‘s ready.” He says curtly.

“Yeah, but I have a class tonight and so could I get him by 4 p.m.?

The dog nurse has picked up Duncan, cuddling him and letting him lick his arms and face. I want to tell him that Duncan eats dirt with that tongue and licks sidewalks, garbage cans and curbs but I stop myself.

“I couldn’t possibly tell you right now,” he says exasperated with my line of questioning. “We can call you when he is in recovery. “

“Okay, well my class gets out at seven and I have to pick my son up from hockey so if 4 p.m. doesn’t work I can come by around 7:30 p.m.?”

“We close at 7. We'll do our best to get him ready before 4 p.m. But if it’s later than 4 p.m. you’ll have to make other arrangements.” He says leaving me with the tear stained lady and Midge.

I have somehow offended his sensibilities. What I want to say is,

“I’ve got bigger fish to fry. Yes, my dog is great. The kids seem to like him and aside from his marking the bathmat and Sean’s stuffed animals with his stinky pee, he’s a good dog. But he’s a dog, a family pet. He is healthy except for the hidden nut. And I have a child who has limited options. If I’m going to spend money it will be with my child’s best interest first. It’s the least I owe him. So be patient at my mulling it all over, please.”

I want to tell him that just yesterday at an appointment for my migraines; I told my doctor that I couldn’t do a colonoscopy. He told me I am at a higher risk and that I need to get screened at age forty. I told him if I have an extra four grand to spend it will be on my son. I feel fine and I don’t have time or money to worry about cancer. He told me my insurance would cover it. I said,

“Yes, maybe, once I meet the ten grand deductible which after today I’m looking at only $9800 left.”

He told me to save up for the procedure. I smiled and said,

“Treat myself to a colonoscopy. Sounds like Christmas morning.”

He laughed and said, “I’m serious. Get one in the next year.”

So, dog nurse, forgive me if I seem a little high strung over the billing. Life is about priorities and sometimes we have to say unpopular things that may not go over well with others. We are just trying to do the best we can with our resources and our situations. Yes, I’ll pay the extra money, of course I will. But just because I’m not torn up like Midge’s owner and I balked over the extra $140 doesn’t mean I am a bad pet owner. Just because I didn’t drop to my knees and take my little puppy into a kissy embrace and whisper with tears in my throat, ‘be brave, little one. Mommy loves you,’ doesn’t mean I lack affection. I happen to be a pretty good pet owner and that says a lot considering the pets we owned when I was a kid roamed the neighborhoods and slept in the garage and ate scraps from the table and drank out of the creek.

I just have a different perspective. That’s all. My dog has a charmed life. He eats yummy puppy food, sleeps on a pillow, runs and is joyful. My son, on the other hand, struggles everyday to fit in and to be happy. I can’t muster up the tears for my lucky dog who is getting a fairly normal procedure done. It’s my boy who I cry for when I see how much of life he misses out on because of autism. To me, that’s my worry, that’s my true sadness.

Forgiveness

2010-10-18T10:01:00.001-07:00

The past few weeks have been a whirlwind. My husband and oldest went to China together for a trip of a lifetime. They travelled to Shanghai and took a train to Beijing and made visits to many of the ancient wonders -- The Great Wall, The Temple of Heaven and the Forbidden City. They went to a tea ceremony and visited the World Expo back in Shanghai (my oldest desperate to visit the Canada Pavilion to see some hockey. He was equally impressed with the Czech Republic which built part of their pavillion out of of hockey pucks -- travelling all the way to China to see hockey? Go figure.)

After nine days they returned home for a day, each of them heading out the next day for different trips. My husband was travelling to Las Vegas for a trade show and my oldest was going to Outdoor School at a camp in the Columbia Gorge near the Sandy River. Another week without the anchors at home. Another week feeling adrift.

Meanwhile, Sean seemed to struggle more in their absence. He liked having me to himself but I was becoming worn down and less patient than usual and that made him frustrated and unsorted.

There was one day that was particularly difficult. I went to get Sean from the bus and he seemed to be in good spirits. We took the puppy for a walk and stopped at the park, the weather was unusually sunny and crisp. He seemed happy.

When we left to go back home he started to unravel. I don't know what it was but he became anxious, his body going limp in places and his mouth twisting. He started to pull at his pants and lose his arms in his sweatshirts, caving at his knees and hitting the ground followed by whining, then yelling and screaming. I went to him, the puppy pulling in the opposite direction, but Sean rolled away in the middle of the park driveway, coming up to his feet and running into the street. I panicked. The puppy wanting to go the other way, my left hand engaged with a leash and only my right hand free to reach Sean.

"Fine," I said, "you have your fit. I'm going back."

I thought he'd follow me, shrug off his sticky thoughts or whatever was making him so upset, and turn to catch up with me but he started running after a car. I could feel people starting to watch us, his bare bottom peeking out of the top of his pants, his arms lost in his shirt, and his sleeves wagging like wind socks. I rushed back to him, dragging the puppy with the leash, and righted his pants and tried to grab him with my arm, pulling him into me. He was thrashing and scratching, his eyes not his own, but wild and flecked with yellow, watery with tears. I pulled him as far as I could toward the parking lot where I had parked the car. He continued to scream, scratching my shoulder and I could feel the burn and the sharpness of his nails (I meant to trim his nails the day before) and dragged him to the car.

Any body walking by might have thought I was abducting this child. He was hitting me and snarling and I was strong-arming him into the car, pushing him down into his car seat, my shoulder and arms chalky white from scratches, dotted with blood. I couldn't talk because I was holding back my tears and anger and disappointment.

I buckled him in and got into the car. I was certain people were writing down my license plate numbers reporting me to the authorities -- kidnapping of some sort. I couldn't drive right away. I was trying to take deep breaths, blocking his arms and legs that were forcing there way past the head rest of my seat.

"Stop it!" I yelled. "I can't do this, Sean. I can't do this anymore," and I felt the tears come, my voice hyperventilating and my body shaking with fear.

I drove a bit down the street and called my husband.

"What's going on?" he said hearing the shrilling yells.

"He's out of control. I don't know why. What am I supposed to do? Do I take him to the hospital? Should I take him to a police station? What am I going to do!?"

My husband was in Las Vegas, unable to do much and only imagining the chaos.

"I'm sorry. Can you make it home with him? Just make it home and try to calm him down when you get there?"

"I'm tired. My arm is bleeding. I am so tired of this. We have to come up with something else. This isn't working."

In the back Sean screamed, "I hurt my Mommy! I hurt my Mommy!"

"I know, I know. Just call me when you get home, okay?"

I drove further and Sean came up between the front seats and plowed his small fist into the side of my nose. The pain so sudden and unexpected that I stopped the car and pulled over to cover my face. More noise and rocking from the car. Surely somebody is calling the police. I took another minute to get him back into his carseat and drove the rest of the way home, my nose and arm flaring with pain.

When we pulled into the driveway, he softened. He was muttering over and over, "I am sorry I hurt my Mommy. I am sorry."

I brought him into the house and hurried over to my neighbor's. She has a lot of experience in social work and knows our situation well with Sean.

"What do I do? He was out of control and loud and screaming. I think someone called the police. I don't want them to come and take him away. I don't want any problems."

She assured me that that would not be the outcome. She told me to call his teacher to see if he had a rough day. Follow up with his doctor to see if I needed to take him in. I did both -- leaving messages with the school and the doctor's office while he lay in a heap on the floor.

When he settled down I ran him a bath and fed him. He seemed hungry and tired. He thought he left his backpack at school but he didn't. "That is why I was so sad, Mommy. I thought I left my backpack on the bus or at school."

When I tucked him in I sat down on his bed and said, "Sean, you can't be like that, do you understand? You could have hurt yourself or somebody else. You hurt me, Sean. You scratched my arm and you hit me hard."

"I scratched you?" he said, surprised. How lost he had gotten in his rage.

"Yes, and it hurts." I showed him my arm, dotted with scratches and cuts, swollen at the top.

"No more, Sean. You can't be like that. You have to control yourself better."

"Yes," he said sleepily.

The next day after school he was stimming, going through his routine questions,

"How do you spell Brad? Is there a P in Brad? How old is Duncan?"

I went about putting dishes away, robotically answering the questions. Then he became silent and I looked over at him, his eyes big and doughy staring past my shoulder,

"I am so sorry I hurt you."

I tried to get his eye contact and moved my head into his field of vision,

"Are you talking about yesterday? Is that what you are sorry about?"

His eyes locked with mine, and I saw real pain and compassion in his eyes,

"Yes, Mommy. I am so sorry I hurt you." Then he turned away sharply and began hopping and continued with his questions.

For a brief moment, I saw what keeps me connected so tightly with this child. I clearly saw the boy that is locked inside under layers of tangled brain wire, impulses and neurological storms. I heard that boy calling out from underneath it all, telling me that he didn't want to be the way he was and for that, he was sorry.

"You know I love you, Sean. And I am always going to love you. That's why it made me so sad. If I didn't love you so much I wouldn't care. Do you understand?"

He looked up, his eyes unfocused and said, "Duncan's a baby?"

I stayed with him, "You understand, Sean that I love you, right?"

He was looking at the ground, his fingers moving and he said, "Yes. Yes. I love you, Mommy."

That night when I tucked him in he ran his hands over my arm.

"What is that?" he said, over the edges of the scrapes.

"It's from the scratches when you were upset the other day."

He was quiet, I could hear his breathing and he said firmly, "I will never do that again. I won't."

I pulled his covers up, and brushed his mop of hair from his eyes.

"I know you don't want to be like that Sean. You just have to keep working hard, okay?"

With that I kissed him and turned off the light.

A friend, who has a child with autism, said to me once,

"If I was married to somebody who treated me like my son does I would leave him. I wouldn't stay. But he's my son. And he's autistic. What choice do I really have?"

Thinking back to that I realize we do have a choice. We can run and carry our hearts over our heads, protected and safe from being smashed into a thousand tiny shards, or we can make peace with what it is and stay. Like so many parents in similar situations, we grip our hearts with hands of armor and we hold our children with our achy, scratched arms and we love them the best we can, the best we know how. We learn to let go of the darkness, to release grudges and to not take it too personally. We have to search for love and forgiveness and bathe their tired souls in what we can tap into on those particular days. And in the end, we amaze ourselves at our ability to stay steadfast with our love. We don't run, we stay. Everyday we make that choice. To stay and fight for our kids.

A Thank You to Dad

2010-10-06T17:49:00.001-07:00

Two weeks ago, my husband and I headed out 84 East toward the twist and turns of the Gorge, the Columbia shimmering and the firs stacked along the hills, swaying in a fall breeze, shoulder to shoulder like a church choir. We had a suitcase and a backpack and we were leaving it all behind. By it I mean responsibilities, parenting and worry.

We passed over the Bridge of the Gods, a steel and wood bridge stretching across the river from Oregon to Washington. We drove past the Honey man who sells raw honey and candles out of the hatchback of his ancient VW Rabbit. Then turned left into Skamania Lodge, our destination.

A good friend of my husband's was getting married and had chosen this beautiful spot nestled along the river. The wedding was held out on the green sprawling lawn -- the sky electric blue and a sun so fierce, that they seemed to melt against the thick forests and turn the river a silvery black.

All and all, we had so much fun. To be able to eat good food, dance and laugh without the worry of Sean, was a gift we had been given. No 2 a.m. wakeups -- we could sleep until our bodies felt rested. And for me that was 10:12 a.m. the next morning! The person so gracious to offer this to us was my Dad.

Now this is no easy feat for my dad. For starters, he's a busy man. He still works part-time, he also tutors children in English, he manages to make it to most of his grandkids activities (counting my kids - he has been a grandfather to twelve children and one more is on his way this month.) He is a good and dutiful husband and spends time with friends (still manages to make breakfast once a month with a group of guys he went to Catholic Grammar School with -- Hello? He was born in 1933!!) He is seventy seven years young and luckily he swam out of a robust gene pool (you should meet his 90 year old sister!) and looks and acts much younger than his years.

Not to mention, he doesn't like to fly, his hips get stiff and he's a worrier (I can thank him for that.) But when I asked him he didn't stammer, he didn't say, "Ahhh, let me think about it." He said, "Yes." This gracious, good man said Yes.

When my sister booked his ticket I felt a rush of gratitude. It is no easy feat to watch Sean. But my dad would rise to the occasion. When we picked him up from the airport his eyes were red and tired. He was on Midwest time and it was almost 11 p.m. west coast time. And yet, he managed to light up when he saw the kids and me. Oh and how happy my boys were! They had anticipated this day and now it had finally arrived.

The first day he helped me get the boys off to school and then we went out for breakfast and a long walk. My husband was travelling so my dad filled in and when the kids came home he took them to the grocery store for all of the illegal contraband that they only get when they are with their Papa -- frozen chocolate chip waffles, Corn Pops cereal, Rainbow Go-gurts and Keebler graham cracker cookies. My oldest was a bit sheepish about the splurge but Sean was ecstatic -- he'd been holding out since his summer visit waiting somewhat patiently for his Papa to let him scavenge the grocery aisles.

My dad took us for dinner insisting that I take a break from cooking and encouraged me to have a martini with my meal (it didn't take too much encouragement.) He helped me get Sean ready for bed and he and my oldest stayed up a little later talking and reading.

When my husband came home we made steak and baked potatoes and when Sean seemed sluggish my dad tucked him into his bed. I went to check on them. I saw Sean wrapped in covers in the bottom bunk bed, his head peeking out and my dad, on his knees, gently stroking Sean's hair off his forehead. When my dad turned to me I could see his eyes were wet with tears and he said kindly,

"I want Sean to know how much I love him."

Sean's eyes were closed, the hum of the fan and the violins from his music softened the room.

"I think he knows, Dad," I said and I went back to the table and wiped away my own tears.

"Are you okay?" my husband asked, stacking plates.

"I'm not sad. I just want to remember something really sweet and wonderful. I want to hold onto this perfect memory of my Dad with Sean."

And I did. I still tear up thinking about how tender my father was to my boy. My oldest is easy to love. He is fun and kind and interesting but Sean isn't easy. And my dad has always made every effort to let Sean know how much he loves and cares for him. He calls the boys at least twice a week and he always talks to Sean.

"Papa, what does Jimmy Neutron start with?"
"You get me a Justice League toy?"
"Papa, may you take me to Target?"
"Papa, when's Clare's birthday?"

It's never a two-sided conversation, however, my dad doesn't dismiss how much this actually matters to Sean (and believe me it does). I listen to Sean rattling off his questions while I try to get a few things done and then take away the phone from Sean (it's always a struggle -- "I talk to MY PAPA!")

I usually say,

"Thanks Dad. He really likes to talk to you. And I got a chance to put the laundry away!"

My dad always says, "He sounded great." or "I'm glad I got to talk to him."

He sees Sean as a whole person who has the same wants and needs as my oldest. In my Dad's eyes Sean is not broken but rather a boy full of life and potential. And that means everything to me.

So for this post I give thanks to my Dad. Thank you for sharing your heart with so many. And thank you for loving Sean for the boy he is. Thank you for always teaching me how to simply love free of conditions through your actions as a friend, son, brother, husband, father and grandfather. And thank you for being remarkably kind and good.

Oh, and thanks for flying 1800 miles to Portland and letting us get out for a whole weekend. We really needed it and we couldn't have done it without you.

You rock, Dad. xo Squirt

Early to Bed, Early to Rise

2010-09-25T06:24:00.000-07:00

The activity level at 5 a.m. this morning was far too high for such a time of day. Sean went to sleep early with a low grade fever and cough. He missed dinner and dozed off as the sun was slipping off the horizon.

The evening was quiet, the soft tin whistle of the Irish music Sean likes to fall asleep to, drifted down the hall. We had the evening all to ourselves knowing full well that the morning would not be ours.

And here lies the problem. If we were smart we would have cleaned up dinner, talked for a bit and turned into bed early, knowing that the morning would come painfully early. And yet, the opportunity to open up a bottle of wine, let the dishes camp out a bit on the dining room table and just lounge on the sofas talking and laughing was too much to pass up. So we did.

My husband was out of town all week for work and had arrived home in the evening. My dad had arrived into town Wednesday night. The luxury to have all this time to ourselves, to spend time together without the interruptions ("What does Knock Knock start with?" "Papa, you take me to Target?") was like a saucy piece of fruit dangling in front of our hungry eyes. So we ripped it off the aching vine and gobbled it up with feverish hands.

Falling into bed, joy bubbling in my veins from my husband's return and my dad's visit, I fell fast asleep. A hard, heavy sleep, like a mallet hitting me square between the eyes. An hour later, I was jolted awake by the cries of the puppy in his "crate" (really more like a jail cell.) I lumbered out of the bed, the kind jailer that I am, and took him outside to relieve himself.

The idea of putting this bundle of licks and fur back into his "crate" seemed unlikely. He crawled up in my embrace, his ears pinned back, eyes swimming in devotion and affection -- all this just for being alert enough to hear him and help him. How I longed for 1/10th of that appreciation from Sean during the nighttimes of holding him after a bad dream,reassuring him that Batman isn't real, his face wet and hot and his angular body like a bag of hangers in my arms, poking my ribs and knees.

The puppy was a present for my oldest, a reward for good grades. He promised he would take the best care of him, he would keep his grades up and he would limit himself to one hour of television. He's held up part of the bargain but the part where the puppy goes for a nice long walk, leaves a mess on the street and the person has to take a baggie, gingerly pick it up and do the walk of shame until a garbage can presents itself -- that role has been assigned to me. I used to secretly mock those people. Now I am one of them.

So after I bring the puppy in from the crisp middle-of-the-night air, I settle back into bed, the puppy curled up against me, his hot breath on my neck and give into sleep.

Three hours later the familiar, squeaky voice enters the room, "Hi Mom,"

The puppy's ears pop up like satellite dishes and I rub my eyes and try to make out the squiggly red lines on the digital clock -- 4:45. My husband turns over and edges toward the left side of the bed and Sean climbs in between us and begins his talk, burying his elbows, chin and feet into our sides. The puppy growls as Sean tugs his tail and I will myself awake.

"I'm hungry," he announces to no one in particular. I get out of bed and take him to the kitchen to make him some breakfast, the puppy whining in my absence.

While I am making him breakfast my husband peers into the kitchen with tired, small eyes.

"Go back to sleep," I say, "it makes no sense for both of us to be up."

"I'm awake. I can't fall back asleep. Why don't you go back to sleep." he says, rubbing sleep out of his eyes.

"I can't go back to sleep either. I'm totally awake."

We make coffee and try to keep Sean upstairs. He constantly tries to break for the downstairs to shake awake his Papa. We take turns slugging down coffee and detouring Sean as he bee-lines to the stairs.

When I am finished with my mug I go to wash it and read the fading gold cursive writing on the inner lip. It's a coffee cup I got at Target after Christmas, a glittery holiday-ish cup that was on clearance. It had little shiny stars glued near the handle (which have since fallen off -- guess it wasn't dishwasher safe) and glittery curls of salmon pink and tangerine orange licking up the sides. And inside, written like fading ribbon reads,

"Gratitude leads to joy which fills our hearts with love and peace."

I stood there a moment, my eyes aching from lack of sleep and my lower back stiff and then smiled. Sometimes I need to be reminded of all that is good and tasty in my life -- whether it be seeing my dad, my husband returning from a week of travelling or the coffee warming my insides, keeping me alert for the moment.

My boy runs back and forth, a flash of red hair and pale skin and muscle, his eyes bright and laughter spilling from his handsome face. The puppy chases him, nipping at his heels, his tail wagging like a windshield wiper in a storm. The mug from Target stays in my hand, almost like a held prayer, and I am reminded of all that I have and I can't help but to keep smiling, tiredness lifting like fog from my head, my heart.

And So We Tumble Into Fall

2010-09-13T10:31:00.001-07:00

It is that time of year - the hustle of school buses, the morning air so crisp that I shuffle into my robe pulling it tightly around me as I wait for the coffee to brew. Coldness settles on the windowsill and the box elder bugs are starting to huddle on the screens searching for warmth. Even the bees are flying slower and stinging more impatiently.

Another summer has gone by, slow at times and other days passed with the quick, focused speed of a bullet train. My boys wake earlier, sleep in their eyes trying to adjust to the inky morning darkness, their limbs and eyelids heavy.

I scramble eggs and make toast and cook bacon, feeling my life coming back to me, my time returning. And perhaps I do this too greedily, forgetting how quickly this time does pass and how even the rough days will somehow be lost to me and I will probably miss it. It is the hard days that make the good days taste that much sweeter.

The summer was tough but I shouldn't let that put an overcast on the entire season. We did have some family fun. We camped at the central coast of Oregon near Florence surrounded by mountains of sandy dunes that led to the tumble of ocean. Sean scurried up and down the dunes, sand spraying like silver glitter.

We went to the high desert and slept in cedar cabins and ate corn and flank steak with friends. We hiked a dormant volcano, trudging and balancing up the sharp edged and polished black obsidian rocks.

We went to the Cascade mountains, and set up camp right next to a fresh, clean alpine lake. At night the sky throbbed with fat, electric stars, our faces sparkled in starlight as we tucked into the tent.

These were definitely glimpses of grace and beauty, reminding us that we live in splendor and that if we are still and far away from the noise and bustle, we can bear witness to the movements of angels and hear the hushed whispers of earth and sky. And although the moments were fleeting, when I close my eyes I feel I can see those stars as they were, unreal and pulsing, and pick them one by one like fresh, dewey apples, a bushel of stars to hold in my heart.

Losing Sean

2010-08-26T19:50:00.000-07:00

Today I felt numb. Sad and numb. The reality of our situation over the past month has been on my mind, gnawing at me periodically during the day.

I am losing Sean. I always seem to notice this in summer, when the heat pours in and stills the days. When the summer is coming to a close and my husband and I look at each other like runners on the last lap, our hamstrings locking up, our bodies falling forward and our knees and elbows bursting with scrapes and pain. It's as if we have fallen to our knees trying to make it to the end -- not concerned anymore about our time or placing but only about being able to stay in the race and cross the finish line. It's the very least we can do for our son.

I am losing Sean. I am with him all day. I try to finish laundry, sweep the floor, make a phone call, clean up the dishes and he is there, next to me, his big eyes staring up at me and his voice, always a stammer, "Y-y-you talk to me, Mom?"

I try to let go of the heat and mess and stress and give him my attention, slowly I answer, "Sure, Sean, what do you want to talk about?" knowing full well what our conversation will be.

"Is there a Pixar movie that starts with a T?"

My mind scrambles and answer Toy Story.

Then he asks, "Why don't I have an L in my name?" I tell him he just doesn't but tears spring to his eyes, "But I want an L in my name."

We've gone as far as "renaming" him as Seanly -- he also desires a Y very badly, too.

He goes on and on about his favorite topics.

"I can kayak in the deep blue ocean?"

"Remember that stupid time in Kaneeta?" (how could I forgot -- it was Mother's Day weekend and he had a meltdown because it was too crowded.)

"I can like the Justice League?"

"Is there a person's name with a Q?"

"What's your favorite sea creature?"

I have answered these questions and others like it probably over 1,000 times (Yes, you can kayak. Yes, I remember Kaneeta. Sure you can like the Justice League. Quentin, Quinn, Quimbley, Queenie. Dolphin, I guess.) And so it is that I find myself losing bits of my son and bits of myself, swirling quickly down a dark drain with no hope of stopping it.

My neighbor stopped by to check on us. Kind and discreet. She came up my back porch steps, her eyes tender and I felt my own wet.

"How are you guys doing?" she asked.

I felt my heart tear a bit. She has been our neighbor for five years, ever since we first moved to Portland. Her daughter, older than my kids, played with Sean, outlined his hands and feet with chalk at the block party, helped him carve his pumpkin at our first Halloween and went swimming with us in the summers.

I said to her, "I didn't know it would be this hard."

I am lucky to have such kind good neighbors who try to rally around us. Some of Sean's behaviors are really intense and hard to contain. She let me know that she loved my kids, loved hearing Sean playing earlier that morning with his Superman cape chasing the cat around the yard. She told me that whatever we needed that she and her family were always there for support, help or an ear to listen.

"Thank you," I said. "Thank you very much."

And yet I still feel like I've let everyone down.

Yesterday, Sean wanted juice and I told him no more juice. He threw a bottle at me and I found myself boiling with rage, my back throbbing from where the bottle hit. I grabbed him by his shoulder and pushed him into his room. He thrashed and yelled, opened his window and tossed a couple of books out onto the lawn. I ended up having to subdue him by getting him on his back, sitting over him to pin his legs and holding his hands down above his head. I just held him, watching the wildness leave his eyes and face.

"I will let go, but you can't hit me, you understand?"

He nodded, "I understand."

He went to touch his hair and I thought he was going to hit me and I felt my whole body flinch and I covered my face. When I took my hands away, I saw him for the little boy he is, flushed cheeks, damp red hair, bright eyes, "What's wrong?" he said, his voice soft like butter.

I tucked him into bed that night and when he drifted off to sleep I held his hand and prayed to somebody, anybody to release him from all the struggle and pain and frustration that he has had to deal with his entire life. His small, sweaty hand, the pads of his palms swollen with blisters from the monkey bars, so small and full of promise and I couldn't understand why he had to carry such heaviness in his lifetime.

"Give him a chance," I whispered over the hum of the fan. "Please, he's my boy and I can't bear losing him."

Check Engine Light

2010-08-15T19:16:00.000-07:00

The other day my husband came home after driving the beloved loser cruiser (powder blue mini-van -- a model of car I swore I would never own let alone drive...) was in peril. It had smelled funny for a few weeks and was leaving sweaty spots on the driveway. We kept putting more oil in it realizing that there was a leak of some sort. Finally, the light came on to tell us to cut the crap and take the car into the mechanic.

Luckily, my husband prefers to ride his bike to work so being down a car wasn't a major problem. And luckily it turned out to be a minor problem -- a crack in a gasket and a sensor working improperly. The loser cruiser, with its 110,000 miles and counting, would continue to roll forward. Paid off, covered with Cubs, Blackhawks and In and Out Burger bumper stickers, a generous dent on the back door, and riddled with scratches along the sides, the van would continue to be a part of our family life -- toting kids to school, weighed down with rafts, tents and coolers in the summer, and dolled up with snow tires chugging up the mountain passes for skiing and hockey tournaments.

I thought how nice it would be if we humans had Check Engine Lights illuminate in our chests, reminding us to take it easy, slow down and mend the cracks. I think our family has been sailing along most of the summer with our invisible Check Engine Light on and yet we haven't pulled off the road, popped the hood and let the cloudy steam rise off the boiling engine to get a better look at why we feel so out of sync. It's a luxury we really haven't had.

Summer has been hard. I am feeling lost in the long days. I spend most of my day with Sean trying to keep his moods even, his body regulated and his thoughts happy. Meanwhile, I have neglected my writing, chores and most sadly to me, my friendships. It's as if we have to put so much on hold. Our child doesn't do well in crowds, doesn't like to be in public much, can't socialize well and even trips to the pool or parks have ended disastrously with Sean being out of control or yelling or hugging strangers.

My older son is struggling with this. Sean is getting bigger. He is harder to manage. And he's quick and fast and can't control his impulses. We take turns watching him but inevitably he gets away from us, whether its jumping on a person sitting on a bench or hugging a woman's knees, most trips out can end badly.

My husband and I have grown thick skins -- practically Teflon. By my oldest is getting to a point in his life where he is much more aware of the dynamic and struggles with the love he has for Sean and the embarrassment that he often feels at how his brother behaves. It breaks my heart sometimes. I know my oldest is kind and good and tolerant, mostly because he has had to be in order to be a part of this family, but I can't help thinking how some days must be very tough for him and how I wish I could make it all better.

So I guess we all continue down this bumpy road, our Check Engine Light beeping and blinking and yet summer doesn't afford us the time or opportunity to fix ourselves. We have to keep making little quick mends until fall when school begins and we have the luxury of time. Twenty seven days and counting...

The Dream House

2010-07-20T12:53:00.001-07:00

I had a dream again about the old house. It was the first house we bought after we were married. It was the house we brought the boys home from the hospital after their births. An old dutch colonial that was previously a barn back in the 1850's. It was cut horizontally and moved across the street in the 1920's and made into a home. We bought it in 1996 and lived there for eight years, replacing windows, a boiler, a water heater, the roof, plumbing and God knows what else. We had an invasion of digger bees one summer and worried about flooding after the grassy lot across the street was filled in with expensive town homes.

In my dreams of the house I am sneaking in the side dutch door, swinging open the top window and unlocking the door from the inside. I move about the house, the hickory floors scuffed but shiny, past the knotty pine walls and the built in maple shelves. I creep up the old staircase and down the hall to the baby room, the walls still a tender celery green, the wicker rocker chair facing out but there is no crib. The boys have grown and moved on. I am sad for a moment but then out the window I see the current owners coming in the front door. My heart races and I am in a panic and when I move down the hallway the floorboards creek and I shrug into a closet. "I shouldn't have come back," I think to myself and then I wake up.

It's not surprising I had the dream again. I had been back home and our first house was a mere ten minutes from where I grew up. I drove past the house. The new owners pulled out the evergreens and shrubs in the front and put in an above-ground pool in the small backyard. They kept the wooden blinds, the front door green and added only tiny improvements to the screened in porch. I felt strange driving past it, sneaking looks like I was casing the place. It was an old house sold "As Is" and I didn't want to meet the new owners and be regaled with the improvements they needed to make. I also wanted to keep the memory of it frozen like I had remembered it. A simple, loving home where my two boys spent their earliest years.

I drove past it twice and then went past the train tracks, the commuters waiting for the 7:25 a.m. to Chicago, newspapers folded under arms, briefcases slung over shoulders and coffee balanced in hands. I had done that commute for years. I couldn't help thinking where did all the time go?

I often think how little we knew back then. We had the world at the tips of our fingers. We had two healthy boys within a 19 month span. I had quit my job and my husband had started his own business. I had so much to be grateful for. I had no idea that there was anything wrong with Sean. He was strong and handsome. He walked early, moving nimbly around the old house. His huge eyes always met me before the rest of his taut little body caught up. My boys posed for Christmas card pictures in the front room sofa, my oldest hugging his little brother, their smiles wide and beautiful. They tumbled in the silver maple leaves in the fall, piled snow from the driveway into forts during the winter and followed me to the train station to see their dad come home from work during warm summer nights.

The house holds all that for me. The early days before life got complicated, before needing to learn so much about autism, before knowing how our lives would forever change. By the time we had put our house on the market, I had known, deep in the belly of my soul, that my son had changed. He was no longer the happy, engaged, laughing baby. He had become a more serious, less flexible and easily agitated toddler.

The year prior to our move he qualified for early intervention under the developmental delay category -- his speech was behind and his social skills were impaired. He had done a year of special education and a summer camp for children with delays. I had known what was to come. I wanted to come to terms with it all privately, to absorb the impact without neighbors, friends and family with me. I wanted to leave Illinois and to start over with what I knew was to come. I had to say good-bye to the home that held such hope and dreams and promise for us. I had to walk away to a wider, open space where I could start from scratch.

I have always known that I was to live here in Portland. Maybe not forever, but at least for part of my life. The first time I came to the Northwest it was like walking into the arms of a lovely, good friend who I had missed for too long. Strangely, I felt I had come home.

The hardest part was leaving my family and friends behind, saying good-bye and moving forward. And saying good-bye to the innocence of that life, to the bliss that moved like purposeful and easy breezes, in and out of our daily lives.

So I dream about the old house on Center Street. The silver maples and birch trees dotting the street, the lawns shaved into green postage stamps and the baskets of petunias swaying on the light posts. And the winters where the snow caked like creamy frosting on the roofs, the paper lanterns burned peacefully on the front porches during Christmas night and the mournful whistle of the last train out of the city echoing through the bare arms of cold trees. I keep my baby boys there, remembering their sweet red cheeks and pale eyes peering out at me through the crib bars, the old floors creaking as I walked toward their outreached little arms, pulling them into me, safe and warm.

Road Trip (From Hell)

2010-07-07T09:33:00.000-07:00

I suppose we might be gluttons for punishment. Or perhaps really disillusioned people. But somehow, after weighing our options, we decided that it made most sense fiscally and pragmatically to DRIVE to Chicago from Portland, Oregon for our summer trip to my hometown.

As the day drew near, we began to rethink our launch strategy. Should we just toss the kids in the car after dinner and begin our trek? Would they sleep in the car and allow us to cover more ground? We had planned to make the trip with two full sixteen or so hours a day of driving. It may be the equivalent of swimming in a tank of sharks or particpating on the show Fear Factor and having snakes dumped over us while we lay in coffins protected by goggles and a lycra body suit (Lycra! god help me - maybe worse than the snakes?)

We decided that was our best option. The boys were excited. School was out and the highly anticipated trip to see all of their cousins and grandparents had finally arrived. My husband drove the first 6 hours stopping in Ontario, Oregon near the Idaho border for gas and coffee. All three of our heads popped up like jack in the boxes -- my oldest spying the Arby's at the gas station and Sean asking, "We are in Chicago?" It was maybe 4 a.m. but the idea of the boys falling back asleep was quickly fading.

The ride continued through Idaho, the landscape greener than most summers due to a rainy spring and wet summer. And then we crawled into Utah, followed by Wyoming, every few minutes a chirpy voice asking, "Are we there yet?" or "Can I hop?"

We made it to Rawlings, Wyoming around 3 p.m. and exploded out of the car like a trick can of cloth snakes. My husband took Sean to the pool and my oldest and I brought some luggage up to the room and melted into the hotel funiture.

The next day we ate a quick breakfast and headed back onto Highway 80, heading east, with half of Wyoming and all of Nebraska and Iowa and most of Illinois in front of us. Day two seems to always be the hardest. When I was younger I did a bike fundraiser with a gal pal. We had biked sixty miles the first day. We felt proud and strong, but after we ate dinner we were sore and started trolling the little town we had stopped in for industrial size Ben Gay. We almost cried on Day Two when we mounted our tired and sore bodies on our bikes and headed out for another sixty miles. I can't even remember Day Three but I know we smelled very minty and our bodies were fairly numb from the pain and the loads of Ben Gay.

This is exactly how Day Two on our Road Trip from Hell felt. Our bodies were like parenthesis, slouching in the car (we took the small hybrid to save on gas -- left the roomy, gas guzzling loser cruiser van @ home in the garage), never free of the sun's steamy glare.

We drove forward, the land like wet slick quilts, softly billowing into gentle ripples, jeweled with fences, crops, ponds and livestock. We had come from the mountains, from the muscle of the intermountain west, sliding down into the placid and predictable heartland, where we could see for miles with no surpises.

By evening thunderstorms had moved down from the north and the radio warned of tornadoes and flash floods. My husband white-knuckled the drive, navigating through sheets of rain, over swelling rivers, thankful for the lightening that would light up the inky darkness, and the boys shuddered from the shaking thunder.

By 1 a.m. we made it to my parent's home. Sean hopped into the house, hopped onto my parents and laughed, so excited to see them. After hugs and talk we fell into beds, so happy to arrive safely. To think of the journey back home sent chills up and down my spine so I tried to remain in the present, to enjoy the sight of my mom and dad, to relish in their laughter and smiles and to let go of the stressful ride and the "what can go wrong on the ride home" thoughts. I just wanted to be in this moment, to frame it with hope and happiness, to keep that feeling frozen into a tight cube, to save for another day when I needed to find joy.

Making the Cut

2010-06-07T03:54:00.000-07:00

It was time. When I looked at him it was getting tougher to see the big round eyes under the haystack of red hair. I had been putting it off. A quick toss in the shower or matting it down with "No More Tears" could barely hide the nest that was growing on top of his head.

After his last haircut, we left without being completely finished. Amanda, the gal who cuts our hair, had battled Sean fairly effectively while he slouched and pulled and yelled as she tirelessly worked the clippers and sprayed water on his head. But the battle was too heated and when the comb snagged hard on a large knot it was time to call it quits. Besides, his sides were shaved clean and neat and some of the top thinned out so I waved the white flag and unleashed Sean from the plastic cape, an unappetizing sucker covered in red fur clutched in his sticky hands. We'd have to learn to live with the swath of red hair that spilled like a waterfall down his forehead.

When my husband got home that evening he remarked that Sean looked like he was the lead singer from the Flock of Seagulls. I thought it was less retro and more faux-hawk. After three weeks, when it became almost a backwards mullet, I went for the first pair of scissors I could fish out of my drawer -- a pair of rusty old poultry scissors and followed him around as he hopped and swatted away my hand. I gave it my best shot with the dull, worn poultry scissors -- a clean snip across the front. I tried to thin out some of the top but the blades were dull and I didn't make much progress. When it was done, the backwards mullet was somewhat more tamed replaced by a jagged curtain of red bangs across his forehead. I thought it didn't look too bad but my husband, who wouldn't notice if I painted all the walls of our house magenta and replaced the dining room table with lawn furniture, noticed my handy-work and said, "I didn't think it could get worse."

After another three weeks, when his hair poofed like an atomic mushroom cloud on top of his head, I knew I couldn't put it off any longer. I had failed to make an appointment with Amanda, who I thought could use a break after the last appointment. Besides, she cuts my husband and older son's hair and does a heck of an eyebrow wax on me -- we couldn't chance ruining that relationship. She was too valuable to the rest of us.

So on Saturday, while my husband was up in Canada playing rugby and my older son was down the street at a lacrosse tournament, I gathered up what little courage I had to take Sean to a random barber shop that I had no intentions of EVER returning to.

When we walked in, the bells on the door was the first noise to irritate Sean, followed by hairdryers, clippers, a loud television and barbershop talk. Luckily, there were two chairs open and the only woman cutting hair there, pretty and small, motioned us over. I whispered to her that Sean had autism and could be squirmy. After that I sat across from him and held my breath.

She went to work, slowly at first and then, seeing panic in my eyes and hearing Sean's growls and at one point, he pinched her wrist, said "I should make this quick, huh?"

I nodded and said "Thank you," over the drone of clippers.

The barber next to Sean did a running commentary on Sean's behavior.

"Guess he doesn't like haircuts?"

"Stay still, son, or you'll get clipped and it will hurt."

"We can do this the easy way or the hard way."

"You're just making it longer."

I glared over at him. Behind him displayed proudly on shelves were Star Wars and Lord of the Rings figurines entombed in boxes. He wore a wrinkled t-shirt half tucked in and pants that could sure use a belt. I did my own running commentary of him in my head beginning with,

"Nice toys, Man-Boy."

The barber on the other side was kind. He was cutting an older man's hair and kept looking over at Sean. Several times Sean tried to make a break for the door and I leaped out of my seat and wrestled him back in the chair. The nice barber said, "Maggie is great with kids. She'll do a good job."

I waited anxiously and could feel the heavy stares of other customers on Sean and me. I didn't care so much as I saw gobs of hair fall from the clippers and gather into little mountains on the floor. I would never be back here. Another bridge burning in flames behind me. It's all part of being a mom.

She did the best she could and even tried to make his sides completely even. I told her it was fine, that his hair looked great and paid her.

"Let me get you change," she said.

Which I replied, "No, keep it. I can't pay you enough for this haircut."

We hustled out the door and into the minivan. I let Sean know that his behavior was lousy and unacceptable to which point he said, "Could we go to Target?"

"Really?" I thought to myself, "Are you KIDDING me???" I didn't even respond and when we turned away from the barbershop and passed the larger than life Target bulls eye sign he said with utter disbelief, "But why we not going to Target?"

Clearly, he missed the main points of my little talk. I explained it again, "You need to sit and be good for your haircuts. You yelled and even pinched the lady. That is not okay."

His eyes went wide in the rear view mirror, the tears slowly filling in and he said with shock, "I didn't earn it?"

I didn't know if I should laugh or cry but I opted to shake my head no and turn the radio up to drown out the impending tantrum.

When we arrived home I had a message on the home phone. It was from the irritating barber who was doing the play-by-play of Sean's haircut. He wanted to let me know that I left my cell phone there.

I hung up the phone, had a silent scream in my head, got Sean back in the car and began the ride of shame back to the barber shop.

I parked the car and told Sean to wait a moment while I ran into the barber shop.

"Remember me?" I said walking in and laughing but really on the verge of a nervous breakdown.

The woman who cut Sean's hair grabbed the phone from the other barber's station (maybe he was blowing his tip money on the new Shrek toys at Target)and handed it to me. I was relieved that he wasn't there and that I would be spared a lecture on raising children or the dangers of leaving my cell phone behind in random stores.

"Thank you again. You were very patient and I really appreciate it," I said securing the phone in my back pocket.

"You can bring him in anytime," she said with a generous smile affirming my belief that there are some really good people in the world.

As I left, I bit it on a parking curb -- ass over tea kettle and fell in front of a parked car with a couple of teenagers. I scrambled back to my feet and headed to the mini-van that was shaking up and down. Sean had decided to hop in the car, his laughter spilling out of the back vented window.

My palms were scratched and bleeding and my pride was a tangled heap at my feet but I manged to say a simple prayer of gratitude -- "thank you" into my aching clasped hands. I had finished what I had set out to accomplish, as little as it might seem to a stranger. Sure it didn't come without a lot of aggravation, not to mention my wipe-out in the end (at least I didn't knock out any teeth) but it was complete. Done. Finished. Yey!!

Searching

2010-05-24T19:27:00.000-07:00

Where is the boy? Where did he go? Sometimes he is with me -- certain and complete. Happy and smiling. Running with wind on his bare shoulders, outstretched arms and muddy fingernails, his head rolling back in waves of laughter, his eyes closed and his mouth wet with drops of spring rain.

He is not here today. He is gray as if pillowcases of storm clouds are shaking out above him, his eyes squint with anger and his fists are curled, like unripe apples from branches.

I walk carefully -- my back holds onto tension like a heavy sponge and my throat is dry and sore. I want him back -- free of anxiety and anger. Free of autism.

But not today. He pulls away from me like the skin of an onion, translucent and vulnerable, falling to the ground. I keep close but some days it is impossible to put us back together and I hold on to what is left and what I can actually keep in my hands and feel with my fingers.

I haven’t looked at the baby book in a long time. It cradles memories like held breath, suspending time and pain for only so long, until I am dizzy and my lungs shatter. I wish it didn’t have to be this way. For him. And for us. I wish he could live without the diagnosis. It is a lot for such a small boy.

I watch his brother grow into a young man, strong and kind. He ties his shoes, packs his lunch, brushes his teeth, puts on his coat and smiles at me, his freckled hand waving to me as he runs to the bus stop. And Sean is near me, unable to put his shoes on correctly, unable to put his lunch in the backpack, unable to brush his teeth well, unable to zip his coat or to ride on a bus with his brother. There is only a mere 20 months between these boys and yet I feel the gap growing greater with each passing day. Their hands can no longer touch - the distance too great.

There is a picture of my boys, together in a moving box, laughing and falling into each other. It should make me happy but lately it doesn’t. I hastily tape my heart back together. Sometimes it breaks when I think of what we had then. We had hope and energy and love, bubbling like water from fountains, spilling with abundance. Did we know it at the time?

I try to remember that life is so much more than what I can even imagine. Sometimes it’s crucial to let go of the past and leave it behind in the photo albums that collect dust in the bookcase. And sometimes I need to remind myself that each day is full of new, budding moments and that I need to hold still and watch the future unfold, like a fresh flower, each petal unfurling into a silky, damp blossom holding out beautiful possibilities to the child playing alone in the fields.

A Break in the Clouds

2010-05-17T16:31:00.000-07:00

There seems to be some room for sunshine lately -- both figuratively and literally. The heavy rains of April and May have lightened up, turning everything a dreamy green and making the roses pop with rich reds and creamy yellows. The dogwood, lilac and magnolias are heavy with flowers, spilling over fences, tumbling down branches.

And Sean has gotten better, too. His meltdowns riddled with anxiety have lessened and he is sleeping more, pillow scooped in arms, covers kicked to the floor, breathing steadily in and out.

I’m afraid to talk too much about it. Afraid that I will jinx it and Sean will fall back into the hour long crying jags or inconsolable meltdowns or the anxiety that keeps him imprisoned. But it has been ten days now of a happier child.

I am not only happy for us -- my husband, older son and me but I am happy for Sean. He was struggling so hard in thick of it. The littlest noise or sudden surprise or unhappy moment would send him into a tailspin. He doesn’t want to be like that. No child wants to feel like that. And all we could do is survive. Keep our patience and strength and love for him constant, even during the days when it felt like we could give no more.

The notes from school have gotten better, too. He’s not perfect but he is doing better. And for now, we have to accept that and remember how much better it is this week than a week and a half ago.

It’s also a reminder that we take this life one day at a time. We vow to experience it, under no set conditions, and we trust that we will do our best to make the most of it. A child like Sean reminds me everyday of this -- to take each day generously, to hold onto it in my heart and to always hope for sunshine, even a peek during the cloudiest days. And if the sun doesn’t budge behind a curtain of clouds then let me remember to bring my umbrella in case it pours!

A Bad Day, A Bad Week

2010-05-04T19:44:00.000-07:00

How does one define a bad day? And a bad week? Sometimes words can fail me but I will give it my best shot.

Sunday
Dad is going to China. After track we head to the airport. Sean starts asking about the library.

“Can we go to the library? Can we?”

“Airport first, then swimming and then library.” I say slowly.

“No swimming! I hate swimming. The pool is closed! No swimming!!”

This goes on until we arrive at the airport. My oldest has smartened up -- he is wearing headphones and singing off key to some song that I don’t know and that makes me feel really, really old. My husband hands out hugs and goodbyes. I know how much I will miss him. Not for the man he is or the husband he is (he is both a fine man and good husband) -- but mostly for the dad he is. He is the relief pitcher -- quick and steady, especially on the days when I’ve given up the lead -- he jogs onto the mound and throws brilliantly -- gets the save and my oldest and I carry him shoulder high off the field.

The tantrums keep coming, although once we get him into the pool with his teacher he is happy again. My oldest son and I walk to the Dairy Queen -- to self-medicate -- I go with the regular vanilla cone and he orders something that looks like nuclear waste with a plop of ice cream in the middle. We sit in the sunshine and let it warm our bodies and melt our ice cream to that perfect texture. We agree, “No library” and brace ourselves for the fall out. We remind ourselves that he has to earn the library. Clearly he hasn’t earned a trip to the library.

When his swim lesson is done I wrap him in a towel. We have hidden all signs of DQ -- even checked my breath and wiped my mouth (he has a great sense of smell.) My oldest gave up on the lime green sludge and tossed the rest in a garbage can. We get back into the minivan and head to the house -- thankfully no mention of the library (that will come in the evening before bedtime when he will cry, “But we forgot to go to the library! I didn’t earn it!!”)

Monday, Tuesday, Wednesday
A blur. Like letting your windshield slowly bubble up with raindrops -- seeing how long you can go before putting on the wipers -- a modest thrill like a game of chicken with yourself. Sean wakes up early -- hops and yells so loudly. I try to let his brother sleep while luring Sean downstairs with the promise of PBS Kids. Make note -- PBS Kids doesn’t begin children programming until 6:30 a.m. At least that’s the case here in Oregon. UGH. Nick Jr? “NO!” Sprout. “That’s for BABIES!” I find a DVD, it is shiny and I’m drawn to it like a castaway is to a rowboat. “Please FAST FORWARD THE PREVIEWS!” he yells, his ears covered with his trembling hands. I catch my reflection in the television - honestly, I can see the sheet lines on my forehead or are those worry creases. Who cares.

Thursday
Bad day at school. He has started to destroy his classmates food -- squashed kiwi, smashed banana and spilled yogurt and applesauce. When he comes off the bus he is pacing. The tears are standing on his bottom lids and he runs to stomp in the flower bed. I try to stop him as he charges past me like a bull.

“I forgot my lunch box!! I left it at school. I didn‘t take care of it!!” His lungs are on fire.

“It’s okay. We have another one in the house,” I say calmly feeling my own heart rate building, feeling the sting in my throat and eyes.

“NO!!!! I want MY lunch box!” He turns and runs straight down the street, his arms wind milling and screams spilling out from his open, angry mouth. I nearly tackle him and try to wrangle him in the car. Thursdays is gymnastics. This ought to be interesting.

I can’t stop myself. I am crying telling him that he is being unfair and making bad choices -- by this time he has scratched me and his body is flailing like a trophy fish reeled up onto the deck of a boat.

“We can stop by the school on our way to gymnastics,” I say once I have calmed him down.

“Okay,” he says quietly. He is breathless. It’s off to gymnastics. Clearly, this has taken the fight out of the dog.

Friday
I take him into school and talk with his teacher (the loveliest person possible. Sean’s luck is that he has had three really great teachers - Miss Rebekka, Miss H. and now Miss Judy). Before I know it Sean has taken a 32 ounce water bottle and turned it upside down, the water pooling in the middle of the class.

I take him to the sink and make him grab paper towels and wipe up the water. One of the para-educator’s gets the mop, an indication that this isn’t the first time. He does wipe up some of the spill but keeps saying, “Get out of here!”

Not too long after, he grabs the big bouncy pilates ball and hurls it out the door. His school is up on a hill, a steep mount that spills down into a fairly busy street.

“I’ll grab it,” says his kind teacher who is recovering from a pulled hamstring.

“Absolutely not. I’ll be right back,” I say running, too fast, toward the hill and almost falling down the slope. My clogs dig into the wet earth -- clogs -- how impractical. What was I thinking? I should live in track shoes.

A nice man who has put the brakes on his Volvo comes out of his car and chases and catches the ball.

“Thank you,” I say, my voice desperate. “You have done your good deed for the day,” I am almost out of breath. I have an urge to hug him and then secretly beg him to drive me far, far away towards California and then across the border to Mexico. No one will find me there.

“No problem. I saw it coming down and I was like, what??” he said handing me the ball.

Now it’s up the hill, the clogs slipping and my ankles nearly touching each other. And yes, a huge, muddy, round ball under my sweaty armpit.

I give it to Miss Judy, her face so kind. “It will be okay,” she says with such heart I feel the tears aching behind my eyeballs. I don’t say anything to Sean. At this point, nothing I can say can translate the hurt and heat in my heart. I give him a flat, stern look that is completely lost on him.

As I exit out the door I feel the itchiness in my eyes and throat -- moving as quickly as I can to the car so I don’t lose it near the student drop-off line. Please don’t let me see anyone I know. Please don’t let anyone stop me. I just want to make it to my car, to the familiar, faint smells of sweaty hockey equipment and Burgerville wafting through the vents. I am desperate to get into the car and jack the radio up loud to drown out my own crying. I hate the sound of my crying. It is mournful and some how sounds like it is crawling up from the depth of my belly. I make a note to look into a tinted windshield and tinted driver/passenger side windows. I just have to make it out to the main road which minutes earlier I was chasing after a gigantic ball. At last, I drive away, Natalie Merchant singing “These Are the Days” and my achy moans like a dog howling at a full moon are hardly audible. Thank God.

I try to clean myself up in the rearview mirror -- rub my eyes, pinch my cheeks. It’s on to my oldest son’s school where I somehow managed to volunteer to drive some students and chaperone them on a visit to the junior high school that they will be attending. My oldest is growing up and I can almost feel him pulling away. I push the thought out of my mind and race to his school, muttering under my breath and criticizing all of my fellow timid drivers. Pedal to the metal. I hate being late.

Saturday
Early. Sean is up. Loud. My oldest has a friend sleeping over. I dress Sean and quickly get him outside so the older boys can sleep. We drive to the market and Sean picks out a doughnut that he tears apart like a wild animal. When he is done he has an uneven chocolate mustache and goatee.

It is not even 7 o’clock. On the bright side there is no wait at the Starbucks so my double tall extra hot latte is ready in no time. We cross the street where there is a nice two mile path and begin our walk. The air is perfumed with wet earth and creamy blossoms that gingerly fall from the branches with the slightest breeze. We hit two parks -- do the tire swing, slide and monkey bars. I check my cell phone -- it is after 8 a.m. We head back to the house where the boys are just waking up. I make pancakes and cut up strawberries.

Sunday
Early again but this morning Sean is sleeping in a bit. I creep out of bed and check Delta’s website. My husband’s flight is not only on time but twenty minutes early. The kids wake up and we head to the airport.

My husband emerges -- I feel the relief instantly. He stands like a tall glass of water and I am a camper lost for days in the desert. Together at last! He gives the kids t-shirts that he has picked up at the Shanghai Expo. They pull them over their heads smiling - they are happy to see Dad. And I am beyond thrill. He takes Sean to track and I mange to go to church with my oldest. I haven’t been to church in ages but am hoping that a friend and teacher will be doing mass. He is not but I am surprised at how much I enjoy the service, mostly the music and the homily.

While we walk toward the minivan I am starting to think that the bad week has passed and maybe there is hope for a turnaround. The dread starts to lift and I reach for my son’s hand as we walk. He doesn’t pull his hand away. I know this gesture is fleeting (he is almost eleven) so I walk hand in hand and feel hopeful and savor this simple, joyful moment.

Keeping on Track

2010-04-28T16:43:00.000-07:00

Sean runs track through Special Olympics. He just started a couple of weeks ago but my husband couldn’t imagine a better fit for a boy bubbling over with energy. The team meets on Sundays at a high school track near our home. We didn’t know what to expect. Sean did soccer through S.O. and we were extremely happy with the outcome.

The first practice was unusually sunny, the grass was bright green cut short in the middle of the track. We decided that Sean would run the 400 and do the long jump. My husband stayed close to keep Sean focused.

They broke up into groups and Sean was paired with Jeff, a man probably in his twenties who had Downs. The buzz about Jeff is that he was clearly the fastest. He had a strong pace and good form and he was proud of his reputation. Sean and Jeff ran a practice run of the 100 and the 200, Sean’s pace strong, keeping in his lane a bit of struggle but full steam ahead. Jeff finished first followed by Sean. He waited for Sean and gave him a high five. I was near the fence waving madly at Sean, clapping and telling him that he did great. Sean gave me a quick smile and looked back at Jeff as Jeff placed his hand on Sean’s shoulder and said kindly,

“Let’s get back over to where the rest of the runners are.” They walked off together.

I wanted to hug Jeff and thank him for taking such tender care of my boy. Would this happen in a typical situation? Would a typical peer put his hand on my son, a gesture of friendship and kindness, or would a typical person not really know what to make of Sean? It didn’t seem to matter to Jeff. Sean was a little kid with fast legs and big eyes and he was looking out for him.

Later my husband and I waited by some benches near the track. A young woman, maybe twenty years old or so came up to us with her hand out and introduced herself,

“Hi, I’m DJ,” her hand searching for mine.

She wore an “Oregon School for the Blind” t-shirt and she had a tick disorder, maybe Tourettes syndrome and possibly had high functioning autism. We talked for a bit. She was going to do the shot put and the 200 -- these were the events that she felt where she excelled. At the end of our conversation she said simply,

“I enjoy enjoying life.”

My husband smiled at her and said, “We should all have that attitude, DJ.”

I couldn’t respond. I was falling through her words, lingering in the peacefulness that she brought to us. She was legally blind, had a constant tick and social impairment issues and yet she took nothing for granted -- the sunshine warming her bare arms, the rush of wind against her skin when she ran and the weight of the shot put in her arms. Life was not going to be wasted on her. She was not going to sit in darkness and loneliness. Absolutely not. She was grateful for the life she had been given as imperfect as it might have seem to others.

Sometimes I think our definition of success is too narrow. We translate success to the houses we build and lavishly decorate, the imported sleek cars we drive, the expensive vacations we take, the country clubs we join and the jewels that hang on our wrists and fingers. In our culture this symbolizes success -- we have arrived. We have made it.

And yet that Sunday, on a high school track field, I saw achievements that are intangible and often forgotten but are so much more important and valuable. I saw a young man take Sean under his wing, his generous feathers protecting and guiding my child. A man who some may feel sorry for or think how lucky they are to not be him never knowing how beautiful and kind he was.

I saw a girl, who many would guess carried the world heavy on her shoulders, but instead walked with the lightness of an angel, spreading her smile like wings and offering up hope and happiness. She said it perfectly, she “enjoyed enjoying life.”

How often do we ask ourselves this --- are we enjoying our lives? Do we work too hard for stuff that we think will make us happy; forgetting to slow down and to spend time searching each other’s hearts where happiness is truly housed.

I learned more from these two people on a Sunday in April then I have learned in a long while. Driving past this track meet, some may laugh at, make fun of, feel pity for or be frightened of my child and the other disabled athletes. But the members of that track team will have the last laugh -- they get it. They know that life is what you make of it regardless of limitations. That life is a present, wrapped and hidden deep in our souls. A present to be opened and cheerished.

Four Days at the Beach

2010-04-20T22:13:00.000-07:00

A good friend and fellow writer invited me to getaway for a few days. She had rented a house down in the central coast of Oregon, a stone's throw from the beach. We would make the most of the time, our own little writer’s retreat. It was a trip I was looking forward -- no alarm clocks, no children, no responsibilities -- only my computer, a New Yorker mag, a book I had wanted to start reading, and a couple of rented dvds.

The house sat on a spit, the Pacific coast in front of us and the Alsea river behind us. I remember my first trip to the coast with the kids back in the summer of 2005. I had told a friend that I was going to get up early so I could get to Cannon Beach (north coast) before it got too crowded. She laughed and said,

“Oh, Katie, it’s not the Jersey shore. It never gets too crowded.”

And that is what I love most about the coast -- solitude is ample.

The further south you go on the coast, the less populated it is. There is so much seashore in Oregon -- gorgeous coastline, where often the sea meets the forests -- dramatic cliffs, colossal rocks bearing a pounding from crushing waves and the giant old Douglas firs spilling down the coastal mountain range, punctuated by frothy and fast waterfalls. The first time I ever went to the Oregon coast was in 1991 and it cleanly took my breath away.

We headed down on Thursday after getting our kids off to school. I left the worry and heartache behind me, my husband assuring me that everything would be fine and to go and enjoy the quietness. And that is exactly what we did.

I wrote a few poems and journal entries, went for long strolls on the beach, the weather mild and windy and read out on the deck. At night we talked and watched movies and one morning we managed to get in yoga, my mind restful and no longer knotted in worry.

Below is a poem I wrote at the beach. I tried to capture how I felt being there away from the noise of everyday life.

The Good Darkness

Today the sky is burdened
With thick scarves of battleship gray
The ocean is erratic
Absent of rhythm
And music.
Pounding it’s foamy fists
Against the surf.

Even the seagulls are gone today.
Perched on cedar shingled roofs in town,
Scrounging in the parking lot of Ray’s Groceries
For crumbs.
Or on the rusty high school field bleachers
Foraging for spilled chips and popcorn.

I like it best,
When the coast is readying for a storm.
The scrub pines sway,
The wind tickling their thick fur
Finding tempo and cadence
And even laughter
In the bedlam.

I chip away in this gloomy space,
And discover how good it can feel in darkness.
To move my hips and limbs freely
Without contempt
Or judgment
Safely tucked away in obscurity.

My skin is stretching
Like warm taffy pulled between a child’s fingers.
My soul can no longer be contained.

Delight bursts at the seams --
A tiger swallowtail
With spun silk still wet on her wings
Emerges from a shadowy cocoon
Into startling morning light
To float and drift
Generously
Among the willow and alder trees.

katie donohue April 2010

Flying High

2010-04-09T20:38:00.000-07:00

The lobby of the Hilton Waikiki is pristine -- creamy tile, orchids and hibiscus spilling out of pots, palm trees dotting the entrance, and kind faces with colorful leis resting on shoulders and chests. Our seven days of vaction had passed and we were leaving. Night was spilling over the resort, the ocean lit by tiki torches and the stars dazzling above. We waited to collect our luggage from the bellhop as the soft music of ukulele and steel guitar floated in the warm air.

Moments later it was shook up by Sean’s stimming. Hollering, squealing, hopping, clapping and slapping his legs. He was happy and yet the crashing of his body erased the serenity. The bellhops, tourists milling in the lobby, the employees at the front desk and the doormen all stared at him. I could feel the heaviness of eyes on us. Some with wonder, some with irritation, some with surprise and shock and some with pity. We couldn’t move fast enough to get our luggage (Sorry, it must be in the other closet. Just take a minute.)

Sean’s stimming kept building as he looked at his father and me and saw our discomfort and frustration grow. His brother went to him and tried to calm him but he just pulled away hard and began hopping and slapping the tile while squealing in a loud shrill.

“I’m sorry,” I said to the men at the bellhop stand. “He can’t really help it.”

They were kind and smiled, young men who were somewhat mildly entertained at Sean and impressed with is ability to leap so far. I turned away, my cheeks flushed and my nose and throat sweating with tears. The luggage finally showed up and we were hurried off in a taxi.

Once inside the taxi, the tears came. I looked out the window to hide from the kids’ faces but my oldest knew why I was looking away.

“Are you okay, Mom?” he asked sweetly.

“I’m fine, bug. Tired and ready to just get on the plane.”

The rest of the ride he entertained his brother playing an alphabet game. Even the taxi driver marveled at the kind boy who played so nicely with his little brother. He continued occupying Sean while we waited and waited at the airport.

When we came home I reflected on our trip (my first trip to Hawaii). It was a trip that I was completely excited about as I often forget how much work it can be to travel with a child with autism. I did a quick recap. I didn’t want the last memory to take away from the good moments.

Each morning we took turns taking Sean for a walk -- he woke up early and would get loud in the condo.

“You need to walk, Sean?” we’d ask him.

“Yes!” he exclaimed, his need to move and hop hardly contained in his little body.

We walked along the beach, stopped and watched the black footed penguins get fed, looked at the koi in the pond, and the flamingos, their bony legs like sticks, balancing on one foot.

We did so much on the trip, all credit to my husband who did all the research and planning and driving all over the island. We explored gorgeous, desolate beaches with smooth white sand and blue green water. My husband chased Sean out of the truck as he headed straight toward the waves, his arms and legs stretching forward, a smile thick on his lips.

Sean was happiest in the ocean, the pressure of the waves on his body providing great comfort. He wore his tight snorkel mask, his sunburned body floating over coral, watching the zebra fish chase in and out. He was delighted.

He didn’t do well at the resort pools. Too crowded, too much noise. My husband would take him back to the beach and I would stay with my older son who was tired of the sand in his shorts and the salt in his eyes. He was ready to chill in the hot tub or go down the water slides.

I’d be lying if I said there were no tough moments. There always are. Meltdowns, tantrums and stimming are a constant reminder to us that we live with autism. Sometimes we think what it might be like if Sean was neuro-typical. Would are boys be good friends and play together on the beach and at the pool? Could they roam a bit on their own? Would my husband and I be able to have freedom to sleep in and do what we like? Sean is nine years old but requires the supervision and care of a boy much younger in years.

And then I remind myself that it is what it is. I love him. I wish he didn’t have to struggle so much. I wish it could be easier for him, for all of us. But it is what it is.

I love the picture of Sean above. We were near a crowded lagoon and he was becoming increasingly uncomfortable. He began to hop. I snapped a quick photo in the throes of his stimming. But why I love the picture is because if you look closely you can see the world behind him was moving with color and noise, heat and energy and yet you get a still sense of release and freedom from his body and happiness in the movement.

His body is often out of sorts and stimming is the way he regulates. As a parent, stimming is something difficult to manage. I don’t want my boy to hop and squeal, his hands clapping loudly. People see the stimming and don’t get to see the boy inside -- the tender child who knows that he is different but can’t stop himself because when he stims his body feels right and the movement regulates him. This picture reminds me that there are moments during his stimming that are a flash of beauty. In this photo my boy is more than a spectacle -- my boy is soaring, above all the pain and distraction in his world. He soars, his fingers tickling the blue sky.

A Muddy Fine Boy

2010-03-19T22:25:00.000-07:00

Last night I heard a knock on the door. I went up to get it and found Sean standing there. He looked like a boy dipped in chocolate -- the white of his eyes life soft marshmallows peering up at me.

“What happened?” I asked, stifling laughter and holding the door close to me, not letting him run through and track wet mud all throughout the house.

“I fell into the water,” he said matter of factly. “I come in?”

“In a sec. Let me start the tub,” I said closing the door, pulling the knob, the hot water and steam pouring out of the tap and grabbing my camera.

Back at the door I asked him to stand still for a picture. He was slightly annoyed but complied and then I stripped off his wet, muddy pants and shoes and guided him toward the tub. The soapy water turned slick and dirty quickly, his body and face streaked with grime.

I shared the pictures with my husband and older son. They had been outside playing lacrosse as Sean hopped around the railroad ties near the shallow creek. Sometimes the creek swells but mostly it’s just a little stream running off from a slightly bigger creek. We laughed at the photos and I felt nostalgic for the old house where I was raised.

When I was growing up our house backed up to a cornfield (rotating crops of corn and soy.) There was a creek, too, filled with tadpoles and insects, a rusty bike and weeds. It was there we would find salamanders and capture them and bring them to keep in the rusty silver milk box in the front of the house. If I close my eyes I can see it all clearly. The muddy path to the creek, the sounds of dirt bikes, like angry wasps, buzzing in the distance and the stalks of corn dwarfing us as the mice scurried in the soil.

When Sean showed up at the front door I thought of my mother who let us run like feral cats in the field -- dirt and mud caked in our hair and fingernails. It took me back and made me thankful for having a mother who gave us freedom and space to grow. We were happiest there, the field stretched like an endless dream, lilac bushes, wild blackberries and the farmer’s crops spilling without corners or edges. And yet the backyard with the concrete patio and scattered baseball gloves and clothesline was always within view.

I helped Sean pick out pajamas, combed out his hair and went to scrubbing the tub, mud and pine needles circling the drain. He was squeaky clean, smelling of soap and apricot oil. He cuddled up in my lap, his arms and legs growing, spilling over me.

I have been struggling with him, our bodies tense and sore from swimming against the current. I’m trying now to let the waves carry me, to stop fighting the pull, to let it just be and see where it might take me and to just be okay with that. I’m realizing that maybe I don’t have as much say in this whole matter as I thought I once had. Now it’s time to stop walking into the wind but to let the wind be on my back instead.

My boy needs me to smile more, to not fight it so hard because he is tired, too. And not to think for one minute that he doesn’t have as much invested in this as I do. He is the one who has to live with it. I have to let him run, too, softening the borders, opening my heart and letting him stumble into the boy he needs to be regardless of how hard this can be to watch sometimes.

On a separate note, I have to give thanks to those who read my writing and who think of Sean and send warmness and goodness our way via kind thoughts and emails. In life it’s not about the square footage of the house or the car we drive or the size of the diamond. It’s really about the people in our lives, the relationships that keep us connected, that buoy us during the storms. It’s the mountains made from comforting shoulders of others who selflessly hold our words with sacredness and grace. And for the moment, that is all I want and need.

Coping and Hoping

2010-03-10T20:09:00.000-08:00

We are still in the storm. I am fighting the hopelessness of it all. I had thought by now we might have made it through to the other side -- basking in the sunshine after the long rains. Sean seemed to come out a bit but then tumbled back, taking our hearts with him.

I try to remember how hard it is for him to feel so unrooted and vulnerable. I struggle to keep my own frustration in check and to not add fuel to the existing fire. He is all over the place right now.

“Make better choices,” I tell him, almost pleading after reading a report from school.

“I will be good tomorrow,” he says, the doubt is heavy in his own eyes. “I will,” he says for good measure as if he says it enough it will happen. But then his eyes look scared and he says through a cry, “I am going to be bad tomorrow.”

“No,” I say, “you won’t. You’ll be good. You are good, Sean.”

His eyes lift up a little bit, “Everyone has bad days?” he says, his small voice desperate.

My desperation matches his, “Yes, everyone does.”

“Even you, Mommy?”

“Yes, absolutely Sean. I do have bad days, too.” More than I’d like to have really. Especially lately. I need to remember that he feeds off of my moods sometimes. If I’m feeling down and lost he picks up on it and he becomes harder to access, to get through to.

Lately, I find myself clutching my cell phone, fearful that I’ll leave it behind and will be unavailable for the school if I’m needed. But really, it has always been like this with Sean. When he was three I’d leave him at the little daycare at the fitness center. I’d begin my workout and not too soon after hear my name being paged over the intercom system,

“Katie Bevins please come down to the daycare.”

I’d have to go retrieve him. He’d be in the throws of a tantrum or shrinking in a time-out corner. I thought he’d grow out of it. I couldn’t imagine my life being like that forever. Right?

The cell phone, like the literary albatross around my neck, adrift in the sea, thirsty but surrounded by only salt water. I would become like the Ancient Mariner in the poem, “Water, water everywhere but not a drop to drink.” Argh.

I sometimes wonder if Sean gets better or if we just get better at living with autism. I don’t like to abandon hope, but in stretches like this, I sometimes wonder if I am fooling myself. If I need to keep this idea in my survival pack -- next to my waterproof matches and rain gear and pocket knife. Because without it the days might seem too long and dark.

Good friends remind me that I have been here before and that there is sunshine and hope waiting on the other side. Parents who have children like our son exchange war stories with me, commiserate and reassure us that peacefulness is within grasp.

So for now, I just need to keep swimming. Keep my head and heart strong and hope to feel land on my fingertips soon. He will come back to me. He always does.

Under Construction

2010-03-03T19:47:00.000-08:00

While I was driving home from dropping off Sean at school I hit some unexpected traffic. The bright orange cones ahead alerting me to slow down and that the right lane was closing for construction. The sign 200 yards in front of the cone read:

“Roadwork Ahead. Expect Delays.”

The brake lights lit up the early morning, burning through a thin layer of fog and I put on my blinker to merge with traffic.

And then it hit me. You see, it has been a difficult past few weeks with Sean. He has been out of sync lately, making his small body disregulated and his actions completely impulsive. He also has been eating like a horse and sleeping longer than usual. My boy is growing. His brain and body are maturing and changing. His pants, which for most of the year, had been rolled up at the bottom to keep from dragging on the floor now brush above his ankles. His teeth have been falling out like leaves from trees during the fall. And his language has been expanding– more useful sentences being spoken.

There is work going on within my son. And with that progress comes some slow down – some delays. He is so sensitive to change that his body is reacting to it and sometimes the responses are frustrating and disheartening. But in order to smooth out the bumps, to help the traffic in his mind move more evenly and productively, other parts need to shut down and be put on hold. He is trying his best to cope.

So there I sat in traffic, my engine idling, and time ticking away, eating into my plans when I realized that maybe the same is true with Sean. Our life with Sean is dotted with peaks and valleys and right now, we feel like we are nearly crawling, our shoulders and knees pressing into a blinding wind, fighting the exhaustion. And our fear is that we will never be able to get through it and that Sean will remain frozen in the valley, no chance of climbing out, no clear sky above it all just the chaos of wind and dust.

I don’t give up hope though. I have been here before with him. Many sleepless nights and worried thoughts cluttering my mind, difficult conversations with my husband – our fears hung out like wet clothes on a line with no breeze in sight. And yet, slowly, he comes back to us – the tantrums lessening and his conversations more lucid. He is not gone to us forever.

But when he is in the valley, it is lonely for us. We miss his laughter and silliness and feel helpless watching him suffer. We try our best to dig deep down in the well of patience and give him tenderness to rest his tangled thoughts and weary head. As hard as it is for us, it is so much harder for him. We have to remind ourselves of this to keep our energy and love for him constant. If we can’t hold his pain then who will?

He is only a nine-year old boy who sometimes carries the weight of this world sqaurely on his shoulders. He just needs to be assured that it won't be like this forever.

A Winter Poem

2010-02-23T15:09:00.000-08:00

I have been working hard in trying to live in the present and not dissect the past or ponder the future of my life. So many people have their lives mapped out -- this is what I will do, when I will do it and when I will move onto the next stage of life. I have never been much of a planner but I wasn't prepared to have a child with a disability.

I had assumed that you marry (for me at 26) four years after that you have your first child and the second one 18 months after the first child. You love them and care for them. Take them to their practices and lessons and save for college.

But in our case, it didn't exactly work out like that. Coming to the realization that there was something amiss with our youngest child triggered the brakes and brought our lives to a screeching halt. We were stuck. What we had taken for granted was not to be. In order to move forward, to get through the day to day, we needed to focus on the present and not get lost in the past (grieving for the baby he once was) nor explore the future (what is going to happen to us?)

I tried to explore this with a poem. I don't know if I succeeded but I felt better after I wrote it.

Winter Sunshine
(nothing is forever)

Frail empty birch tree branches
Cradle a cold February sun

An offering of hope,
Like a warm child
Hugged in tired arms

Days run together too quickly,
My legs are sore from chasing
The day
When he comes back to me.
And he is the boy I once held.
Newborn head nuzzled into my shoulder
Ginger hair like fuzz on my neck
Lips puckering
A guppy
Waiting to be fed.

In my dreams
He comes back,
That baby
With the sleepy eyes
And pale cheeks.

I should’ve held him more,
Lingered in the bliss of not knowing.
But nobody knew.
Nobody.

I am unsteady at the precipice.
The volcano dormant
Calcified in ice
The bottom echoes like a hungry belly
Rocks rattle under my feet
Freefall into blackness.

I know better than this.
I need to turn around
And go back.

I carry clouds like gauze in my fingers,
And walk toward the sun.
To trust it.
To hold it.

To let worry
And heartache
Fall like snow
From overburdened clouds.

To spill over treetops,
And lawns,
Eyelashes
And stoplights.

The sun hangs
Like a Florida orange
Against a backdrop of porcelain blue.

I will peel back the skin
And embrace the fire
If only for a moment
Until it softens
Like butter sizzling in a hot pan
Melting into
Western sky.

katie donohue 2010

Disconnected

2010-02-16T11:48:00.000-08:00

I have been overwhelmed lately. A feeling of disconnection has come over me and I am struggling to make sense of it and to feel connected once again. The irony is that this disconnection evolves from our modern world with its sophisticated and savvy technological advancements that are intended to keep us connected at all times. I have texting on my cellular phone, email retrieval on my I-Pod Touch, voice mail at the home phone, internet on my laptop and wireless throughout the house. So much information is coming at me -- bombarding me at all times reminding me to check my Facebook account or text a fellow mom about coffee or reply to a volunteer email or a beep from my I-Pod alerting me of new email. At times I just want to turn EVERYTHING off and hide. Shut it down. Be free of the constraints of it all. I want to disconnect.

On a much smaller scale, I think it gives me a glimpse of what Sean must feel many times throughout the day -- a lack of connection and belonging -- snowballing into a feeling of isolation and a need to be alone. I think my son isn’t unaware of his feelings or input from the world, but rather, he is overwhelmed and scared from the amount and the constant activity. He wants nothing more than to belong and yet the rules of the game require so much commitment and knowledge that it is just too much for him bear. I guess what I’m trying to say is that it’s not that he is sometimes alone in his own world entirely by choice but maybe more because it’s his only sense of wholeness, it’s a tactic for survival.

My sister said to me the other day on the phone, “Perhaps Sean is a reminder to all of us to slow down, to take a deep breath and to just be.”

I think that’s true. I sometimes find myself wide awake at 3 a.m. torturing myself with all that I haven’t accomplished, deadlines that I have missed and paperwork that remains undone. And then I think about what I am going to do the next day and began to make mental lists in my head, meanwhile robbing myself of any sleep or peace. By morning I am a shadow of the person I need to be and I’m trying to operate in a fog as the demands keep growing. Check the email -- 40 unread messages. Voice mail on home phone hasn’t been checked in days and I can’t even find the cell phone.

Maybe Sean has it right. Maybe he and other children like him are shouting silently to the rest of us to Stop! Take a step back. Give ourselves a fresher perspective. Hold in our hearts the things that really matter (and which are not things). Life shouldn’t feel like a dizzying merry-go-round, our feet kicking up dust and our hands chasing after something to hold onto, to pull us aboard so that we can move in circles. Maybe the secret is only to simply be still and let the world unfold in front of us, to slowly drink it all in and to just be. Maybe the bells and ringtones and alarms are distracting us from what matters, deafening us from hearing the strong, almost silent beat of the heart.

So today I am trying to rise above the noise. Who is to say that this world we live and work so hard in is “normal.” Maybe Sean’s approach is normal and it’s the rest of us that could use some help. Now wouldn’t that be ironic!

Have You Met My Cold Sore Yet?

2010-02-09T16:12:00.000-08:00

Last week started out rough. On the heels of the biking meltdown on Sunday, it was followed by a “driving Dad to the airport” nightmarish tantrum. We were happily on our way. Sean had the day off of school and was free to accompany me on the drive. As we drove over the Morrison Bridge, the Willamette River running steadily underneath, Sean realized he had forgotten his DVD player.

“Oh no!” he said, his hands busy looking all over for his bag that held the DVD player, “Where did it go? Oh no, I forgot it! We have to go get it! We have to get it NOW!"

“Sean, we are not turning around to get it. You’ll just have to wait until we get home.” I said firmly, bracing myself for the fallout, my knuckles whitening on the steering wheel.

And then it came -- screaming, tears, kicking the back of my seat, shrieking and mumbling. We were ten minutes into a twenty-five minute ride -- fifty minutes if you count the ride back.

“So much for getting some work phone calls in,” my husband lamented.

One of his employees called and he answered amid the nuclear meltdown and told her he’d have to call her back. Luckily his two employees know the situation and weren't concerned that our son might be on fire in the backseat.

Sean finally calmed down at the airport, his breath still shallow and his face wet with angry tears. We said good-bye to Dad and headed back home. I could feel a migraine starting behind my right eye and thought, “Oh just perfect.”

The next day, Tuesday, I had to drive my older son to his hockey clinic. Since my husband was out of town, I had to bring Sean with me for the thirty minute drive. Five minutes into the drive Sean said in sheer panic, “Where is my DVD player?!”

Oh hell, here we go again. I had put the DVD player in his bag, along with the Finding Nemo DVD he was crying about minutes earlier (“Where is my Finding Nemo DVD!! I am never going to find it!”) I found it and told him to bring it with him to the car. For some reason, unknown to me, he took out the DVD player and carried his bag with only the Finding Nemo DVD.

“WE HAVE TO GO GET IT!” He screamed, my older son covering his ears.

“No, Sean, we are not going back. I told you to make sure you brought it with and you took it out of the bag. God knows why. Besides, you won't even watch the movie anyways.” This was true. Sean's need for the DVD player was not so much associated with him wanting to watch the movie. It was just an unexplainable desire -- a need that he have his DVD player with him regardless if he were to watch a movie or not. And this made the argument that much more illogical and difficult.

The screams, the kicking and now the “getting out of the car seat and trying to sit in Mom’s lap while she drives in the bad traffic” began.

“Sit down!”, I said loudly, trying to push him back into his car seat while steering the car. At a red light the car jumped up and down matched only by the ear splitting screams.

His brother tried to calm him. He made up a story about a DVD player fairy who was at this very minute delivering a new DVD player to our house. This didn't calm him down. He wanted HIS DVD player and he wanted it NOW.

“That’s enough!” I said, “You are going to break the window. Stop right now!"

After about five more minutes he calmed down. We pulled into the parking lot to let out his brother and I let Sean play in the snow piles that were left from the zambonie clearing the ice rink. When both boys were out of the car, I collapsed my face into my palms and had a good hard cry. I was scared and tired and sad and I was at my wit’s end.

I went to check on Charlie and saw a couple other mothers who smiled. I smiled but then felt the tears cluttering in my eyes and hurried out to get Sean. He came sprinting from the snow dunes, smiling and happy. How quickly his mood changed from one moment to another. It was exhausting.

So the next day, Wednesday, I woke with that tingling feeling on my lip -- that dreaded, “make room for a big, ugly cold sore” kinda feeling. And sure enough, by Thursday, it had made it’s entrance, a large, puffy sore on the top left of my lip. No makeup could cover it. Unless I was okay with wearing a fake mustache (I wasn't) there was no hiding this monstrosity.

On Friday I went for a check-up with my doctor. She immediately noticed the cold sore and said,

A cold sore? That's not good. Are you worn out? Are you stressed?” I laughed (because laughter can often mask tremendous sadness.)

“Is there anything you can give me for it?” I asked desperate.

“There is something. It smells like charcoal and it’s supposed to help clear it up a little sooner but I think you should just wait the 7 to 10 days and let it clear up on its own.” She’s a good doc and well aware of my lousy insurance. My guess is that the ointment was spendy and it made more sense to just live with it an extra couple of days.

So, now it is Tuesday. The sore is still here -- lovely as ever. In addition, I also got a painful pimple in the corner of my mouth. And I can’t forget this little bump on my chin that periodically sprouts a wiry blond hair that is as thick as dental floss. I’m calling it my Bermuda triangle.

Getting old is no fun. Having a child with autism has sped up that process. Worry and stress are everyday occurrences in our lives. Some weeks are tougher than others. And last week was a particularly tough one.

Hopefully by next week, the cold sore and pimple will be gone and I’ll have a chance to pull out that whisker (what am I, a cat?) Even when I try to keep the worry and stress inside it has an odd way off getting out, of sharing with the world that sometimes life isn't very pretty.

Sunshine, Biking and Meltdowns

2010-02-02T20:03:00.000-08:00

Sunday, the last day of January, the sun hung high and warm in the sky and the mild wind smelled of damp earth and wet grass. Living in the Northwest for the past five years I have learned how critical it is to seize a sunny day. Sun rarely makes much of an appearance during the winter months so when it does make a show it’s “Carpe Diem”.

My older son was tired from an earlier 6:30 a.m. hockey game and bailed on us. Sean had swimming class -- a ½ hour of swimming, floating and kicking -- rewarded by cannonballs and leaps from the diving board -- however, not making much of a dent in his bottomless energy tank. A bike ride? Heck yeah. He ran to put his shoes on and scurried out to the car while my husband loaded up the bikes in the mini-van.

We arrived at the trail, clicked on our incredibly tight and odd feeling helmets and headed out toward the trailhead. What a gorgeous day! The sun melted in the blue sky, cottony almost cartoonish clouds moved lazily resting on the shoulders of budding trees and red cedars and firs. The creek lingered over the pale rocks -- the sun making them sparkle, erasing the grayness and the northwest tree frogs croaked in the wetlands. Sean pedaled furiously, his small strong legs and calves flexing. I could see a smile underneath his helmet, happiness and sunshine making his eyes squint.

I was happy, seeing us together and moving along, soaking in the goodness of it all. Our moods had clearly matched the perfect day. But then it happened. Maybe around the five mile mark -- a mile short of the parked mini-van. The chain on Sean’s bike came off and he came to a stutter and than a complete stall. I called to my husband ahead of us to stop. Sean pushed down his bike angrily and began pacing, each step tighter, firmer and tenser.

My husband turned Sean’s bike over and began working on the chain. It’s an old bike. It was his brother’s bike that we got from a yard sale years ago. The chain was old and rusty. Sean’s pacing turned to muttering. The chain wasn’t cooperating -- stiff and stubborn -- mimicking Sean. Then Sean fell apart. He started hopping and flapping his arms and hitting his helmet.

“I want to go home!” he screamed, drowning out the whimsical music of the frogs, birds and the children at the adjacent park. “NOW!” he screamed.

And then he threw his head back and let out shrilling screams -- like a person being mauled by a cougar or someone falling into a campfire.

"Stop it.” I said firmly and calmly, “It’s not a big deal. Daddy is fixing it. See?”

But he was gone. Lost to any logic or common sense.

"Hurry,” I said to my husband the panic building in my voice, my head throbbing from my tight helmet and the stress of the situation.

My husband had pinched his finger, he was shaking his hand but went back to it steadfastly. Meanwhile, people passed us -- an older woman walking her collie, holding the leash in one hand and a small blue bag of poop in the other. She stared at me hard, gave me an eye roll as if to say, “You are useless.” I didn’t respond. I didn’t engage. I silently laughed to myself and thought -- “At least I don’t have dog crap in my hands.”

Two women power walking came from the other way -- big sunglasses covering their eyes but there mouths formed into horrified arcs -- similar to Munch’s portrait “The Scream”. Again, I said nothing and looked away from them. But inside I was devastated. I couldn’t calm Sean down, he was lost to me -- he was stuck in his world where his bike was broken forever and that he was never going to make it home, EVER. No words no gestures, no simple touch could comfort him. He was unreachable.

His screaming scared me. I was afraid someone would call the police. This is a common fear for parents of autistic children. A person watching from afar, afraid to ask if everything is okay but rather calling the police to report an out of control child or possibly an abusive situation. I have friends who have greeted police officers at their front door -- a complete misunderstanding and yet the pain and humiliation still heartbreaking.

“Just push the bike. What if somebody calls the police on him? On us?” There are houses that back up to the trail -- I was quite certain my son’s meltdown echoed in their yards and homes -- maybe someone thought a child was hurt or being attacked. Who would think that this child was so completely upset and angry and frightened just because the chain fell off his bike? But that was all it was. Welcome to our lives.

Finally, the chain linked on and my husband right-sided the bike. “Come on, Sean,” he said tenderly. My husband is kind and patient -- much more than I am. I had been saying over and over, “Stop it! Calm down. You are overeacting It’s not a big deal.”

My husband smiled at me and said, “It’s okay now.” I tried to smile and managed to eek out a small one -- our secret code that we are in this together.

For once in my life, I didn’t cry in front of strangers who looked at me with such disgust and disappointment. I didn’t mutter out, “He’s autistic. What’s your excuse?” I just let it all go -- for me, for my husband and mostly for Sean. It didn’t matter. Some people will never get it. And some people don't want to get it.

What Sean will have to learn is that the chain comes off a lot in life. Things seem to be going smoothly and then suddenly the chain slips off and no matter how hard he pedals or steers he won‘t be able to move forward. He will have to pull over and take a deep breath and realize that it can be fixed -- with effort and concentration. And then he can get back on his bike and move forward again -- a little wiser and more confident. It’s not the end of the world. Setbacks are temporary and not forever. I just hope someday he will understand that.

Don't Worry, Be Happy.

2010-01-26T15:28:00.000-08:00

Sean started a gymnastics program. He won’t let his brother or me come watch him yet. Only Daddy. He has a lesson every Friday for forty-five minutes. My husband told me he is good. It’s no surprise. Sean has some big deficits but on the flipside he has some great strengths. One is Sean’s agility, strength and power. He is small but he is mighty.

A year ago, I stumbled across gymnastics rings at Ikea. I bought them and had them installed in the basement ceiling. Sean loves the rings and plays on them daily. He is magical on them -- his muscles bubbling and his laughter echoing as he swings and climbs and knots his arms and legs together. -- a mini Cirque-de-Soleil performance. He spins through space, the basement air turning windy against his ears.

When my kids were small and the diagnosis “autism” was not part of our lexicon, I had let myself dream of what my boys might become -- what they would make of themselves. But after living more of this life, I have come to let go of those ideas and wonders. Because in the end, what we want most for our children, is to see them happy and peaceful.

When I would observe Sean in occupational therapy or social skills groups I would watch him through eyes of a therapist -- clinical and observant. Is he being appropriate? Is he responding? Is he regulated? It was exhausting, really. Forty-five minutes of running and swinging and throwing bean bags and I’d be rushing through a checklists in my mind. Had I forgotten to see the little boy’s tender smile, his lips peel into laughter, his eyes shining with excitement or was I too busy looking for clinical and critical responses, forgetting that sometimes the most important thing we fail to notice is subtle delight glowing in our children’s faces.

Some days I just want to see my child content. That’s all. I don’t want to analyze or discuss or interpret. I just want to see him joyful and see it for what it is. Nothing further. I don’t want him to feel the pressure either -- to see me in the corner sitting in a folding chair, arms crossed and face edged in worry. I want him to know that he is loved for the boy he is -- not the boy that he is “supposed” to be or should have been “if not for the autism“. I want him the way he is, spinning in his rings, his delicate, pale eyelids shut tight, and his beautiful smile spreading softly like angel wings.

Sean has autism. It is not who he is. He is a boy first. My boy who works so incredibly hard to feel a part of this difficult world-- to somehow fit in. And hard work shouldn’t go unnoticed.

Skydiving and Petting Cows

2010-01-19T15:16:00.000-08:00

The boys and I were hanging out in Sean’s room, winding down from the day. Sean was getting into his covers and his brother was sitting at the end of his bed. I turned off the lights to get Sean ready for bed and he said sweetly,

“Can you talk to me, Mommy?”

I sat down on his bed, the room dark, and he said quietly,

“Sometimes I have good dreams.”

“You do?” I said, surprised. Most of the times, when I ask him what he dreams of he says quickly, “Nothing.”

“Yes,” he whispers.

His older brother, curious asked, “What do you dream about, Sean?”

He pulled the covers over his face and said happily, “Farms. And petting cows. And sometimes I am skydiving.”

His older brother laughed kindly and said,

“Yes, Sean. Sometimes I dream that I can fly, too. It’s so awesome. Maybe you’ll have a dream that you are skydiving and you land in a barn and you can pet the cows.”

“I love petting the cows in my dreams,” he said, his voice softened with the memory of his dream.

His brother said, “Yeah, I love the good dreams. I don’t like the bad ones. Sometimes I dream that someone is chasing me and I can’t scream for help. And one time I dreamt that a bad man took Sean and I couldn’t stop him and he took Sean away from me.” his voice scared.

Sean said, “I have bad dreams about zombies.” his voice shaky. “I don’t like those dreams.”

I smoothed his hair and kissed him on the forehead. My poor little guy is like me -- frightening images are tattooed in his mind, constantly interrupting thoughts. When I was a little girl I was so afraid of the movie Cybil. I covered my eyes but couldn’t get the horrible mother’s voice out of my head and the little girl’s fearful voice. I still can’t watch that movie.

“No bad dreams tonight, pumpkin. Think of skydiving. Dream of the cows.”

I stood up and took his brother to his room, his hockey posters and medals hanging on his walls. I pulled back his NFL covers and tucked him in.

“What are your good dreams, Mom?” he asks, burrowing his body into the covers.

Do I dare tell hin that everyday I dream that Sean will come to me, with promise and hope in his eyes, words like honey dripping from his lips, his conversations on-topic and his body free of the impulses and hopping and the strange noises that he sometimes makes. That he will be the boy I have always dreamed of -- a boy who can run and play easily with others, who can read books and comics, who doesn’t cry or scream when things don’t go his way and who can live in a world that doesn’t feel like it is swallowing him whole.

But I don’t. I tell him that my favorite dream is that I am flying, my arms stretched, scraping clouds and blue sky with my fingers, looking down over green hills and pastures of wheat below, and my heart beating electric.

And I don’t share with him the nightmares I have had either. The one where he and I are playing with Sean near a river, the water clear, cold and rushing with purpose. I look away for the briefest moment and when I turn back, Sean is falling into the river, his body disappearing, the river water turning muddy, almost black. I frantically reach my hands, my arms into the freezing water, searching for his little fingers, a shoulder, a hand but pull out only smooth rock and silt. I yell at my oldest to help me, his small arms, shaking and panicked, hot tears on his cheeks and his hands surface with nothing, nothing but river water and sticks and pebbles.. And I cry, my fingernails digging into the earthy riverbed and yell until I am sitting up in my bed, a scream caught in my throat, my armpits damp and I finally wake. It’s not real. He is sleeping soundly in his bed. It is not real. I haven’t lost him.

But I cry anyways because this nightmare (and I have had it several times) seems too real to me. And because the metaphor of this dream, that I’m losing my child to autism, haunts me, not only during the daytime, during the tough moments, but also the fear stays with me at nighttime, penetrates my sleep and plays itself out in my dreams. Sometimes this dream takes place at the ocean or a swimming pool, but it always ends the same, my oldest son and I are crying and searching for the little boy who has been stolen away from us, trying to touch his skin, hear his voice, trying so hard to keep him with us, in our arms, our relieved sighs against his sweet red hair.

I don‘t share this with my oldest. I am sad that he is even in this terrible dream, that he is standing next to me, frightened, doing his best to save his brother, doing all that he can to save me from such despair and not being able to do so.

Then I am reminded that my favorite dream is realized. It’s the luck of a good husband, of two little boys who teach us everyday that all we can do is just love them simply and kindly. So I try to push the bad dream out and I try to replace it with the one where my beautiful boy is laying in the hay, the sun warming his shoulders, his cheeks and he is with the beloved cows, petting their soft coats. He is happy and he is laughing and he is safe. Yes, he is safe. And yes, he has dreams. My boy dreams.

A New Year

2010-01-11T14:33:00.000-08:00

Lately I can’t sleep. I can fall asleep but I can’t stay asleep. Around 4 a.m. my eyelids peel open like shades snapping against the tops of windows. Hello world, it’s me and I’m wide awake. But it is January in Portland, and the darkness is inky blank, my own fingers invisible in front of my eyes.

This time of year is tough. Not only because January always seems a cloudy hangover from the holiday celebrations of December, but also because January marks the start of a new year, a time to reflect on the past year and take inventory, another tally mark -- my life getting shorter and my children growing older.

Sean’s birthday is also in January -- a bittersweet reminder that time marches on even if my child’s development continues to lag behind. Of course a child’s birthday is a happy occasion for any parent, that is any parent with a typically developing, healthy child. Another birthday for Sean can sometimes be a lonely reminder that progress is slow, painful and often times below eager expectations. It’s as if I’m losing valuable time -- as if my boy is falling further behind me -- no longer within my grasp.

I have to constantly remind myself to live in the present. The future, like the past, is equally if not more so, painful to ponder. To go there is to go to a dark swimming hole, the water freezing and murky, my skin prickling from just a touch, but knowing I have to build the strength to plunge in, to tread, to keep my head up above the choppy water, because if I can’t, who will?

Sean’s birthday came and went, complete with frosted cupcakes and balloons and presents. He is nine years old. Wow. Last night he came into our bed around 3 a..m. -- his musclely, taut arms and legs wrapped tightly in thermal long johns like sausages. He flung a leg over me and an arm over his father’s shoulder. I reached for his face, cheeks, and touched them sweetly and then I buried my lips into his messy ginger red hair, breathing him in and my tears dampened his bangs.

It is the time of night that I am wide awake with my thoughts, my worries. There he was, sleeping, his breath almost a snore and I let myself remember when he was a perfect, sleeping baby. Where did the time go?

I wish I had the energy or maybe it is the hope to dream on the cusp of a new decade. The last decade was full of movement, of highs and lows -- of babies growing stronger, taller to little boys -- of a diagnosis that not only changed my son but changed us all. We are much more tentative. We balance hope and reality delicately -- holding on to a better tomorrow and yet trying to keep our hearts whole.

Happy Birthday, Sean. I’ve made my wish and now it’s time for you to make a wish.

A Winter's Dream

2009-12-29T21:50:00.000-08:00

The Christmas season came and went -- a blur really. I had hoped to slow it all down -- to relish in the simple, spontaneous moments but got caught up in the whirlwind. December started out quickly with a trip my husband had planned to Shanghai, A short trip, really -- only seven days -- there and back in no time. No time to brush up on his Mandarin or much sight seeing -- just business. He has been to China many times. He first went to China during a college overseas program. After China he moved to Taiwan to teach English for a year. Since I have known him (more than eighteen years) he has been back and forth many times. At one point, before autism entered our lives, he had hoped to live there with the boys and me for a summer at least, maybe longer. But like many plans that at one point seemed so reasonable and logistical, it soon became unlikely. But who knows for sure.

We headed out to Chicago for the holidays to catch up with family. Ten days that came and went like wind -- fast and furious and never enough time to see all those who we want to see. It snowed, my parents’ front lawn looking like sheet cake -- smooth and white glinted with sparkles. The boys joined their cousins for sledding and snowball fights, Sean running and laughing his cheeks burning red with chill, his boots wet with melting snow. The days peeled by like Christmas wrapping paper torn from boxes and toys -- the anticipation building and peaking to an ear-splitting crescendo, leaving my mind ringing with echoes days after.

And today, back in Portland, I watch the snow lingering in the dusk -- like feathers from a torn pillow, floating carelessly. The flakes tangling in the empty branches of the elms and maples, like diamond bangles on bony wrists, like silver spider webs in the giant firs, like melting starlight spilling on the ground, the swingset, the lattice in the garden. For an evening, my backyard looks like a postcard -- a winter wonderland and I catch my breath every time I look out the big picture window.

It slows me down, reminds me to take a moment to drink it all in, the reflection of the Christmas lights twinkling off the glass, the sounds of the sleds being pulled into the garage, my childrens’ excited breathless laughter and the wet puddles at the door. This is the gift I have wanted most -- this present with its dreamy bow on top, hugged in ribbons -- a snowy memory swimming in tissue paper.

Tomorrow it will probably all be gone -- the marine layer working it’s way in, the colder winds shrugging off to the east and the snow warming to rain, washing it all away like a shaken Etch-a-Sketch. And tonight will seem only a dream, the branches losing their coats of silver and crystal melting to a swirl, the miracle of it all so fleeting.

Brothers

2009-12-02T22:32:00.000-08:00

It was going to be a long afternoon. Sean wanted to play basketball outside which is fine -- the weather, albeit cold, was unusually sunny. He ran to put his high tops on and grab a ball and he headed out to our neighbor’s basketball hoop. The first try, arms between his leg, the old granny-style toss, proved to be unsuccessful, the ball floating through air, touching no net, not even rim or backboard and sailing straight down in front of him. He started muttering. Second attempt was worse. It actually went over the backboard and landed in the neighbor’s June berry bush. His hands began slapping against his legs and his voice got angrier,

“Don’t watch me, Mommy. Go inside!”

“Sean, you are not going to make every basket. You have to be a big boy. No yelling.”

“ No!” he yelled, his voice edged in hysteria, “No! You go inside!”

Sean’s big brother appeared at the door, “Why is he mad?” he asked.

I walked toward him and explained that he was frustrated that he wasn’t making any baskets.

“I’ll help him,” he said and went down to the street. Sean was still angry as his brother tried to steady him, telling him to calm down and aim for the net.

I watched from the porch as each shot missed the intended net and Sean became more out of control.

“That’s enough,” I said walking to Sean and grabbing his arms and shoulders. He twisted and screamed, his body stiff as I tried to carry him into the house.

“It’s okay, Mom,” his brother said. “He’ll be fine when he makes the basket. I know. He does this.”

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You're stuck with the one you've got.”

Charlie came back in the house, bent down to Sean and said, “Come on, Sean. You can do this.”

I reminded Sean that he needed to be a big boy and no screaming.

“But I am frustrated,” he said, his face tear stained, even his ears were flushed red.

“I know, Sean, but you need to find a better way to deal with that. Screaming and carrying on like that isn’t going to make it any easier.”

“You stay inside, Mommy. And don‘t watch me.” his voice starting to calm, his order declared.

His brother went out with him and after the third try Sean made it. I watched secretly through the blinds and although my view of the basket was obstructed by the giant red cedar, I could see Sean’s body relax, his fists unfurl and heard no yelling -- every indication that he reached his goal.

The two brothers came back into the house, with the older brother saying,

“Good job, Sean. That was awesome. I can hardly make that shot either.” The last sentence he spoke was untrue -- he could make that shot blindfolded.

Sean was still breathless and anxious. He had built up so much anxiety over making the basket that it took him the rest of the afternoon to calm down and to lose some of his edginess.

By evening he was better, although he was tired and cranky.

“Listen to my music with me, Mommy,” he asked, toothpaste on his chin and his pajamas inside-out. I sat down on his bed while the music floated out of the CD player -- the flute and violin softening the night.

His older brother came in a few minutes later and said, “I will stay with him, Mom.”

“No, that's okay. Thank you, though." I whispered.

Then Sean piped up, “You stay with me, C?”

“Sure, Sean,” He said.

I tucked them in and said good nights and went to my room which is directly across from Sean’s room. I listened to them talk. They do not talk like brothers who are only 19 months apart. Sean talks about things that matter to him and only him,

“Who do you want to be in Monsters vs. Aliens? “

His brother plays along, “Can I be the Missing Link?”

Sean thinks it over and says, “Okay. You are the Missing Link. Is Shrek Pixar or Dreamworks?”

And then, like he always does when he goes through his litany of questions answers his own question, “Dreamworks. Yes, it is. Dreamworks.”

I am about to leave my room when I hear his older brother say kindly,

"You are a really good basketball player, Sean. Maybe someday we can play basketball together. What do you think?”

Sean doesn’t answer. There is just silence for a moment and then Sean says,

“Yellow is my favorite color.”

More silence. “I like blue. Good night, Sean,” his brother says softly.

I really wanted to hear, and for the briefest moment thought I might, Sean answer,

“Yes, I do want to play basketball. That would be fun.”

But my boys don’t have conversations like that. My older child is incredibly patient, but I couldn’t help think that sometimes he must long for the brother who can shoot hoops and talk football and tell jokes with and share stories.

My mother would say, “You never miss what you never had.”

Maybe that’s true. This is the only brother he knows -- a little brother that he has always protected and loved. They are not rivals. They hardly fight. They don’t have a lot in common. But at the end of the day, they are brothers -- and I don’t think either would be the boy he is without the other. They make each other better.

A Letter To My Oldest

2009-11-23T13:25:00.000-08:00

Dear C,

Where do I begin this letter to you, my oldest boy. Sometimes the things that are the most precious to us, the most loved also happen to be the most difficult to write about authentically. But I will try anyways.

First, thanks for being such a good son and a great brother to Sean. When your little brother was born, a snowy, blustery January day, the streets running thick with snow and ice, you came to the hospital with Papa to see me and meet your new brother. I was holding Sean in a worn, cotton receiving blanket, a swirl of red hair peeking out. You were not even two years old and you smiled, your sleepy eyes thick with lashes. But then you saw this tiny baby, and a hint of betrayal stung in your eyes as if to say,

"But how could you replace me?” (as if that were ever possible)

Your little body stiffened and you pulled away. I missed you so much when you left and felt terrible watching you go, your small hand wrapped in Papa’s big hand, the back of your head soft with tousled hair.

It took you some time to get used to this little intruder who seemed only interested in eating, pooping and sleeping. Once at Target you hit him with a Barney VHS tape, your face burning with anger and frustration. I scolded you and told you how disappointed I was. But soon after you became more than just Sean’s brother -- you were his guardian, his protector.

Sometimes, you would climb into his crib and sleep with him, a gentle arm around him, your chin nestled in his hair. It was as if there was an unspoken promise between the two of you -- a pact made,

“I will take care of you if you have to carry this -- I will share the load and cushion your falls. We will get through this, little brother. I promise.”

You were always soft with him. I never saw you hit him or scream at him. There was constant tenderness in your interactions with him as if you knew way before your dad and me.

It wasn’t easy. It was never easy. The first time I took Sean to a summer program for disabled children you helped me, holding my shaking hand, fighting back tears as I handed him off to the teacher. We had to move past another child having a terrible tantrum in the hallway -- her body thrashing and frantic hands grabbing at us. When we got to the minivan I cried and you said, “Don’t be sad, Mommy. He’s going to be great.” You were only five years old.

When you grew older you were the one who Sean would go to when he needed peace and safety. You knew how to redirect him and entertain him and make him feel whole.

Once you asked me if you would have a child with autism some day. I felt my mouth go dry and the tears clutter in my eyelids and said,

“Maybe. There’s a strong genetic link to autism so there might be a chance. Does that make you sad?”

You looked at me incredulously as if you didn’t understand why I would ask that.

“Sad? No. I think I’d be an awesome dad to an autistic child.” Sean’s diagnosis to you was more of trait like freckles or blue eyes and not something to be afraid of or dread.

When you overhead Dad and me talking about our future and our worries for Sean you said quietly to me at bedtime, “Don’t worry. I’ll always take care of Sean.”

For such a young boy you have always had such old soul responses. Your ambition is admirable and your concern for your brother is unparallel. I want you to know that we don’t expect you to take care of your brother when we go. You will grow and be a man someday with your own life and family and with that comes your own worries. Besides, Sean may surprise us all in the end. He may be our soft place to land.

I’m writing you this letter so you will always know that Sean wouldn’t be the boy he is without the love and kindness that you have always, unselfishly given him. You make such a difference in your brother’s life. We couldn’t ask for a better son and Sean couldn‘t possibly have a better big brother. All I want is for you to always keep that place for Sean in your tender heart. There is an undeniable connection between the two of you -- something larger than this lifetime.

Love, Mom

When Did You Know?

2009-11-08T09:44:00.001-08:00

Often times, people will ask me, "When did you know that Sean had autism?" I have been thinking about that a lot lately. When did it truly sink in, down to the bone; when it could not be ignored any longer. I thought it best to look through writings and journals that I had kept, in order to answer the question as honestly as I can.

From all accounts, he was perfect. His skin was the color of gleaming ivory contrasting against his bursting red hair. His blue eyes were surrounded by long, thick reddish-blond eyelashes, like petals on a flower. People stopped me all the time when I took him to the grocery store or the post office, “Look at his hair. He’s gorgeous.“ Yes he was. My little angel. He was simply a beautiful baby, my pride and joy.

So I guess if you ask me honestly, when I realized something was amiss, I would have to say I don’t know exactly. There was not one clear moment. It happened over time, like lint collecting in a dryer, little moments accumulating over time to produce something bigger, something too hard to ignore.

I kept a journal for Sean. I had imagined that it would be filled with all these wonderful stories of him as a baby, then as a boy and finally a young man. It would be a gift I would give him when he left for college or the night before his wedding or the birth of his first child. I imagined the surprise in his eyes, the smile spreading across his face as I handed it to him.

These are things I took for granted. I made assumptions never realizing that life didn’t always unfold the way I had imagined. I wrote in it until it was just to difficult to write any more.

There are sweet moments like November 8, 2001 when Sean was nine months old-- “Sean you are officially walking."

In August 2002 it says, “we are having such a great summer, spending lots of time @ the swimming pool…I took you for your first haircut yesterday. You were such a good sport!”

On March 27, 2003, two months past his second birthday I wrote, “You are currently in the 20% for weight and height. You are a feisty little rascal.” I glued a picture of him underneath the entry. He is wearing a sea foam green sleeper, his cheeks apple red, and he is smiling, his eyes holding onto laughter.

By the next month in April of 2003 he started to talk. He said, “bye-bye”, “yellow”, “Mommy” “Da-dee” “dog” and “Papa”. But in the same entry I wrote “You were kicked out of Mom’s Day Out for climbing, pushing and hitting other kids. Oh, I so hope this is a stage! When you are angry you bang your head on the floor.”

There it was. I was beginning to lose him. Even in my writing I can sense my own worry and I hear the panic in my voice. It was the first entry where I had begun fearing what was to come. I was beginning to brace myself for what lie ahead.

Still, I wanted to believe what everyone told me.

“He’s a boy. They talk later.” or “He’s your second. His older brother talks for him” and, “You’re spoiling him -- he needs more discipline. A good hard swat.”

But all I can remember is thinking, “Tell Mommy what is wrong and I can fix it“. How could I fix something that I didn’t even understand?

The last entry before the final entry was in July of 2005 when Sean would have been 4 years old. Simply put I wrote, “You are lots of work. You have a very quick temper and you get very upset at least twice a day.”

That time period is blurry. I stopped writing in his journal. It became too hard. There are no entries for two years. The final entry was intended to be the last -- a couple of paragraphs trying to wrap it all up, the squashed bow on top of the crushed box.

On August 22, 2008 I start with, “Wow, 2 years slipped by and I’ve been afraid to write in your journal -- I am sorry for that. My heart is heavy with worry and sadness. My precious little guy -- what I had imagined for you years before did not really pan out. Since moving to Portland, Oregon (not too long after) we were told by a doctor that you have Autism (it was a fear hidden far in the caves of my mind). We’ve watched you struggle and fight. We haven't always done right by you. We didn't understand…Oh Sean, I wish I could make you all better, make the world an easier place for you to live in.”

The page in my journal is riddled with spots, dried salty teardrops that fell from my chin and free-fell onto the paper. It is a painful reminder of how much sadness a person can hold.

Although I can't say is has been smooth sailing ever since, I can say, honestly, it has gotten better. As a family of four people there are rules we follow -- stay in the present and try our best to be kind and understanding to each other, even during the toughest moments.

So today, Sean ran past me quickly, his soccer cleats leaving pine needles and grass on the floor, his body tumbling forward in delight and his smile, like a life saver, keeping me afloat. It doesn't really matter when I knew for certain ; it only matters that we take each day like a gift and make the most of it. Life is really precious and so is Sean.

You Are Not Alone

2009-10-25T11:28:00.000-07:00

About a year ago I attended a support group for parents of children with autism. It was in a therapy gym and we sat among mats and swings and exercise balls -- we looked like overgrown children spread across the floor trying to make ourselves as comfortable as possible. It was casual. The person running it was an Occupational Therapist who worked mostly with kids on the spectrum. The topic was somewhat general -- basically how to deal with the diagnosis.

At this point, Sean had been given his diagnosis for about three and a half years. I had come a long way, thanks to the help from some really great parents I had met who had been on similar journeys and a doctor who made us see the light and helped us come to terms with what having a child with autism really meant. Her philosophy was to treat the entire family -- we were all affected by this disorder and Sean couldn’t thrive unless we all understood why Sean did the things he did.

She reiterated what my father had said, “No child wants to feel like this. No child wants to behave like this.”

And from that point forward, we stopped taking it all so personally and started regulating ourselves in order to create peace and balance in our home.

Each parent took a turn standing up and telling his or her story, sharing what they felt comfortable sharing. We were all at different places and we all had children spread across the spectrum. No story was the same and yet similar words came out of each story: grief, sadness, fear, overwhelmed, struggle and loneliness.

There was a young mother, with light reddish hair and pale skin, her eyes rimmed with redness, tissues bunched in her hands and I couldn’t help but to watch her taking it all in. I could see that she was in a lot of pain and guessed that she was new to the diagnosis. I saw in her what I had seen in myself -- a confused and sad person who’s world was blown apart and who was overwhelmed of where to begin to pick up the pieces.

When it was her turn to talk she took a deep breath, her shoulders shook and the tears began to slide down her face. She had a three year old boy who wasn’t talking, wasn’t making eye contact, having terrible tantrums and obsessed with lining up his toy cars. She had received the diagnosis from a developmental pediatrician a month ago and although she knew something wasn’t right with her child she wasn’t prepared for the diagnosis of Autism. She was afraid. She was sad. And mostly she was lonely.

I wanted to move across the room and sit with her and tell her that she was going to make it through this. I wanted to tell her that she was going to amaze herself at what she was capable of doing and that she would surprise herself at how much she would come to completely love and adore this little boy who built so many walls around himself. I wanted to tell her that it was horrible and difficult and completely exhausting but that, in time, she would make a life for herself and for her family that would make more sense.

It’s like when you have a cut on your hand and it is tender and sore, but over time it heals and maybe leaves a small scar to remind you of how much it once hurt and how far you have come. It doesn’t go away but it doesn’t hurt like it initially did and it might not look pretty but it’s part of your history, and it tells a story of how you got where you are now standing.

I wanted to hug her and tell her that she was not alone, to look around the room and see all those who had been where she was and to see how far they had come and that they were still standing and sharing and, yes, they were sometimes laughing.

When the meeting was over, I walked over to where she was standing, a table with punch and pretzels and Chips Ahoy cookies and I smiled warmly and said, “Hi.”

She looked up, a paper cup in her hand, her eyes swollen and smiled back. I waited a beat to see if she wanted to talk -- I remembered how I felt at that point, exhausted and not ready to share everything and embarrassed to cry in front of strangers. I wasn’t sure where she was in the whole grieving process and I didn’t want to overwhelm her nor did I want to say, “It’s going to get better.”

The truth is, I didn‘t know if it would get better. It sometimes gets harder. But what I did know is that she would get better. In a few weeks, months, maybe even years she would cry less at night after tucking her child into bed, she would mourn less at the playgrounds and the school yards where the children ran freely and happily, and she would get stronger.

She had an older child, like me, who needed her and she would be there for him. She had an autistic child, who would teach her to love more freely and to find kindness and forgiveness and especially patience in the toughest moments. She would make it.

When I drove home that night, I couldn’t get her sad eyes out of my mind. I wanted to make it better and reassure her but this was her journey and nobody could do that for her but her.

I often think of those who smiled at me, touched my arm, gave me a knowing look (been there and done that) and sometimes that was enough for me to put myself back together, to give me hope that I wasn’t alone and that I could survive this. I sometimes wonder where I would be if it were not for the kindness of those who took the briefest moments out of their busy lives to notice me, struggling and disheartened, and to quietly give me some small gesture to know that I would be okay.

Wishing and Hoping

2009-10-18T17:32:00.001-07:00

I had spent most of this week, organizing fall/winter clothes, cleaning closets and thinning out toys and books -- a nesting feeling that always hits me in mid-October -- when sunlight is fierce and quick and my tired knees ache with the promise of rain. While cleaning out a bookshelf, I came across a journal that I had kept for awhile. I had always loved the feeling of pen against paper, the measured, slow translation of mind to notebook but easily replaced by quick typing skills and the easiness and portability of a laptop. I had filled several pages with my thoughts exactly a year ago, and one page was titled, “My Wish For Sean”.

I was curious what I had wished for, a year ago, in a seasonal setting so similar to today -- the trees changing in a fury of colors, leaves freefalling from brittle branches and wallpapering the lawn. What had I wished for? This is what I wrote:

My Wish For Sean

To smile
Freely and often
Pink lips framing chicklet teeth.

To bite into the goodness
Without hesitation
And not hide in the backseat of the mini-van.

To be happy
Free of encumbrance
And at peace
With a brain
That runs and hops
Ahead of thoughts and words.

To find love
In safe arms of another
A flower with tender petals
Blossoming open
An umbrella of color
Keeping him safe
And warm.
Holding him tight.

I’ve never been greedy with my wishes
I only want for him
a window left open
A suture
A sling
To help make it possible
To share in the simplest moments
To be more than just this
Diagnosis.

A year has passed. Another candle added to a frosted cake, a little boy’s new wish (for me, the same wish -- help me help him be all that he can), fall, tumbling into winter, melting to spring and bursting into summer and now back to fall. So much has changed and yet, here I am, holding onto wishes that haven’t changed or been modified.

The other day Sean asked me,
“Mommy, will I be married someday?” his eyes bright, his mouth speckled with grape juice.

I smiled and nodded and said, “Yeah, maybe, Sean.”

I had an overwhelming need to nod my head, to keep the pain and sadness at bay, to not betray him or to let him know that those thoughts never enter my mind concerning him.

If it were my oldest son I would have laughed and said, “Yes if you decide to one day. But not until your at least thirty. You have your whole life in front of you.”

I have always assumed that whatever he might want to pursue he will be able to do so. But I guess I don’t share this assumption when it comes to Sean. Will he find love and marry? Honestly? I can’t even imagine it. And yet, he has this thought, like anybody else. Isn’t he entitled to think it and if so, why does it hurt so much? Am I fast-tracking the rejection that he will encounter in life, the isolation that often comes with autism. And what if he has the desire to belong and to be loved but is too impaired by his disability? Then what?

I try to remind myself that if he can love his dad, his brother and me, then surely he will learn to love others and he will be loved back. Right? But sometimes my heart breaks to think of him heartbroken and alone. Autism has robbed him of so much already.

I think I still need to hold fast to this wish of my boy being happy and loved. We all face heartbreak and sadness and by suffering we learn to appreciate the good in life. I cannot protect him any better than I can protect my oldest son. All I really can do is just love my boys and hold onto hope. And for now I think that's enough.

He Shoots, He Scores!

2009-10-11T18:41:00.000-07:00

My oldest son and I drove across the bridge connecting Washington to Oregon, the Columbia twinkling like diamonds as the last of the sun fell into the horizon. The river was flanked with trees that are changing -- the birch tree leaves have turned golden and the maples are flushed with feverish red. The early night matched my good spirits -- a shift in the air. You see, tonight I saw my oldest son score a goal in hockey. He has done this many times, but this was a first for me.

I wrote about this in a book I have been writing. A chapter, that happily, will need to be revised. Here it is:

It was hard on his brother. There was a time that Sean would hit him for no apparent reason or yell at him. We were grateful that our oldest boy was such a patient and kind little boy. He felt bad for his brother and sad that his brother didn’t always seem well. He loved Sean. When Sean would cry at night his brother would grab his pillow and sleep next to him. So many mornings I found them rolled up like crepes, together, their sweet faces touching. When Sean would yell and cry it was his brother who after looking at my tired face would go to his brother, rub his shoulders and say calmly, “It’s okay, Sean. Don’t be sad. Do you want to watch cartoons?” When I would lose my temper with Sean, his brother would look at me his eyes pleading, “Don’t Mommy. He’s just going to get more upset.” At times he understood Sean more than I did.

As our son got older, it was harder for him to get along with Sean. Sean would bother his friends when they came to the house, poking and pinching them. It was embarrassing. When I would go to my older son’s soccer games I spent the whole time keeping Sean from running onto the field. At hockey games I stayed with Sean in the parking lot or the car, the loudness of the rink too much for him.

“Did you see my goal, Mom?” he asked. His face flushed and his body overtaken by an enormous green and black hockey duffel bag.

“Sorry, bud, I didn’t see it.” I said sheepishly, grabbing his stick.

“Why not?” his smile slowly fading.

“Sean didn’t last in the rink. I had to take him outside. He was getting too loud and he kept covering his ears. Let‘s go. He‘s out in the car.”

“Oh,” he whispered, “Well anyways, it was awesome -- a one-timer shot.”

To this day I have never seen my son score a goal in hockey. He’s a heck of a player -- I know that because that’s what the coaches tell me. “Plays with so much heart.” I would do anything to see his next goal, to see him windmill his stick, skate on one foot, high-five the other players.

He took it all in stride. No complaining or whining. He understood - a boy wiser than his years. His brother spilled his paints, left the caps off of markers, tore up his baseball cards, hid the Wii controller and peed in his bed -- they were all forgivable offenses. No grudges were held. Maybe he’d be frustrated, sigh loudly but he would always end with a soft, “It’s okay, Sean.“ All was forgiven in his brother’s eyes.

And that made me feel worse. I wanted him to tell me that it wasn’t fair. That he was sick of Sean ruining everything. I wanted him to shout, “Enough already!” But he never did. He remained loyal to his little brother. He protected him and made every attempt to love him in spite of the time and attention that Sean took away from him. He would never look at it like that. In his mind, Sean had been dealt a heavy blow and it was up to the rest of us to make adjustments.

So tonight, my son and I smiled all the way home. I am so proud of the boy he is. I am so happy to be his mom. I am beyond thrilled to see him score a goal, his arms pumping over his head, his stick waving in the air.

Grandma and Papa's Boy

2009-10-04T10:46:00.000-07:00

It is early Sunday morning and I am alone with only the sound of last night’s rain dripping from the trees and roof top. It’s cold, too, cold enough where I actually turned the heat on to 65 degrees! October 4th and the heat is on? Not how I was raised. My dad and one of my cousins would see who could hold out the longest as far as turning on the heat. We lived outside of Chicago and my cousin lived in an old restored farmhouse in northern Illinois, in the middle of the plains with only corn stalks to buffer the winds. Sometimes we made it to mid-November even December one year. My mother would command us to “put on another sweater.” Or we would crowd by the fireplace in the family room, going from flaming hot skin back to seeing our breath. In the end, my cousin or my father would break, and the heat would flow through the vents, however, our bodies seemed to be in a perpetual state of numbness. I swore that I would never be cold like that again. Then I married a man, who like my father and cousin, is no fan of turning on the heat.

So why today did I muster up the bravery to rise above hard-wiring reinforced by a husband who thinks similarly? Because he is in Chicago. And because he took Sean with him. So, I am alone with a giddy sense of freedom and even recklessness. Who knows what I will do next? Maybe watch Bravo and eat nothing but bowls of cereal the entire day.

My older son is home. He had football and hockey practices and school. I am determined to make this time with him fun and stress free. Most of his life he has had to be amazingly flexible. Plans that we make as a family sometimes never come to fruition. This is the reality in a household where there is a child with autism. How many movies have we had to leave at previews because something spooked Sean? How many restaurants have we hurried for the bill, asked our food to be wrapped and headed to the car with a screaming boy in tow? The truth is, this is my weekend to be with my oldest son, without contingency planning or nervously carrying the ripcord in damp palms.

I tried to talk with Sean on the phone last night when they arrived at my parents home. He was too excited and wouldn't come to the phone. He was with the two people, outside of his father, brother and me, that love him with such fierceness, free of conditions or judgments. If he wants to hop from one end of the library to other, than by God let him. This is how my father thinks. He is a man who said to me once,

“I don’t love Sean in spite of his autism, I love him more because of it.”

My father has a great big heart. He is a fan of the underdog, a champion of the one that others have walked away from and written off. He operates under the belief that “no child would choose to behave that way.” So when Sean shouts for no reason, or pinches a stranger or hops up and down at a store, my father doesn’t condemn him or yell at him. He redirects him by taking his hand and leading him to an area where Sean can be alone and move and feel comfortable. He recognizes that Sean is not trying to be mean or cruel or ill-behaved but that Sean is overwhelmed and scared. I find great comfort in this. He has always recognized that it is not a parenting issue and he is never once blamed my husband and me for the way Sean behaves. He only supports us with kindness and love and always offers to help us in anyway how.

My mother has Sean’s “back". She, herself, a strict disciplinarian came around quickly to the fact that this little boy was just more than determined or stubborn but something else was at hand. When Sean runs through their house, my mother’s china and crystal shaking, she says,

“It’s replaceable, Sean’s not.”

There is nothing Sean can break or bump into or knock over that my mother will ban him from the house. The keepsakes that she has brought from Ireland or given to by family are put up high (not only for Sean, but she has had eleven other grandchildren run through her home during her lifetime) and everything else is replaceable.

“Oh relax. I can get another.” she’ll say, as I hold up a broken Belek vase that Sean has knocked off of a table, his arms swinging and his feet jumping. As a mother, who is always in frantic mode around my child in other’s home, it is the one house outside of my home that has always given me an overwhelming sense of comfort and belonging.

The funny thing is, I do miss the little guy. His big eyes always reach me before the rest of his taut body catches up -- and I miss that today -- not seeing him coming around the corner. But at the same time, I know that he is in the best hands, that he is being loved and spoiled by his grandparents and that although their time with Sean is finite, the love they give him will last his lifetime. I know that when I pick them up on Tuesday, he will have missed me and I him. And we both might feel more relaxed. I know for certain I will. We do need breaks from each other. Our mother and son relationship can be exhausting. I am his soft place to land, an extension of him, really and he is my lovely boy who makes me (as well as my husband and older son and those who know and love him) better people with each passing day. This does not come easy, but anything worth having is never easy.

Send In The Clowns

2009-09-27T18:35:00.000-07:00

I've always loved to watch my children sleeping. Their soft faces cradled underneath prayer hands, cheeks flushed and hair damp with warmth -- to me, there is nothing so beautiful as that. Sometimes, when Sean is asleep, I will lie down next to him and hold him close, my palms on his beating chest and I will try to transfer as much love as I have to his heart -- to make a connection that transcends everyday affections. A love that will wash over him, that might provide some comfort, even healing. I have always put a lot of faith in love -- and now I have to believe that it could possibly save my son from retreating further into autism.

As silly as it may sound, it’s not nearly as silly as all the promises floating out there to cure autism and to recover our children. There was a time I believed in a lot of it. I removed all the gluten and casein in his diet for 9 months. It didn’t save him. I removed soy products for 3 months. It didn’t save him. I gave him enzymes. It didn’t save him. I gave him high doses of vitamin B-12. It didn't save him. I fed him only organic. It didn't save him. So I gave up on the notion of rescuing my son from the tower of Autism -- from donning my suit of armor and lugging battle axes over my weary shoulders and I climbed off my horse and fell to my knees and refused to move one tired muscle.

Truth is, I am no longer a warrior mom and I am okay with that. I have retired -- a five star general no longer pouring over maps and planning invasions. I needed to gather my strength for things that matter. No more birthday cake made out of potato flour and rice milk (hear the chorus of Woo-hoo from my children), no more sneaking vitamins into juice and no more selling my kidney and corneas to shop at exclusive grocery markets for expensive, hard-to-find items. It was time to find out what I was good at doing. And you know what? I discovered that the simplest things, holding my son while he sleeps, whispering in his ears that his Mommy loves him and is so proud of the boy he’s become, seems to work.

Autism is not a one size fit all disorder. It’s a spectrum that presents itself very uniquely with each diagnosed child. So why should we believe that there is a blanketed cure? This may work for some children and help alleviate symptoms and I am happy for those who find relief. There's nothing wrong with giving it a try. But, unfortunately, these cures often don't work for most children with autism. Why put that perception out there, anyways? This idea that autism is “curable.” It’s counterproductive to most of us who are doing all that we can and finding that solutions are not so easy as a vitamin supplement or diet change.

It’s dangerous to push this message out there into the public. What’s not to stop people from thinking,

“Well why don’t you just cure your child?”

Wouldn’t we all if it were that easy? As a community, we already feel stigmatized. This message that as a mother we have the power to cure our children just isn't realistic nor healthy.

There is a lot of pressure to be the Mom who not only can iron her Super Mom Cape with one hand but also peel potatoes and help with homework with the other. And it’s okay to not be that mom. Heck it’s close to impossible to be that mom. It’s perfectly fine to be the mom who puts on the red nose and rainbow colored wig and acts silly and lives in the moment. I can no longer join the ranks of the warrior mother. Instead, I am a clown mother. I want to pack myself into a mini-cooper with a bunch of clown moms and head out for a night of fun. I don’t want to obsess over how to "fix" my child but instead learn to accept him for the boy he is. I don’t want to sit in a chair with a Kleenex box in my lap anymore. I’m opting for a night with friends, a pitcher of margaritas and karaoke. Life is hard. Why make it harder than it already is?

I used to laugh a lot. I used to be so much fun. I want it back. I want to be happy -- in the moment -- unafraid of what my future holds and content with the life I have led so far. So for now, no more extreme changes in diet or supplements. Happiness, love and laughter seem to be the best medicine at the moment.

One Stone in the Pond

2009-09-20T16:37:00.000-07:00

The Balinese people do not let their babies’ feet touch the ground until 105 days have passed. During this time, they believe that babies are still pure and close to heaven and that grounding the child’s feet could leave them prone to evil spirits penetrating their bodies and souls. They perform a baptism after the three months have passed by blessing the child head to feet and letting the baby’s feet touch the earth. At this point, the baby is now born and no longer attached to heaven.

I have always had a soft spot for this belief -- the idea that babies are still secured to the heavens -- not entirely our own but a sharing between the spiritual and natural worlds. When my boys were babies they would stare intently at nothing, their eyes peaking with purposeful gaze and I often wondered if their tiny eyes were fixed on the ghosts of ancestors.

The older I get the more I am curious about my own spiritual development and what there is to learn in this lifetime. Are both my feet firmly planted into this world or could I possibly unearth myself and float freely into another realm?

Sometimes, when I am alone with my own thoughts and weighted with concerns and worries, I try to imagine that this life of mine is a starting point for something else. What that is, I’m not quite certain, but I often think that everyday I have opportunities to explore, decisions to make and I have to be aware of the implications and consequences -- how my choices affect not only my life but the lives of those who intersect mine. I want to challenge myself to think in these terms -- the ripple in the pond -- that every action has an equal and opposite reaction.

I’m not sure where I am going with this but what has me on this path is seeing a bumper sticker on a car -- a large, gas guzzling Ford F250. It read,

"Why Should I Pay For Your Health Insurance?”

I became quickly incensed. I am bothered that somebody might think this let alone shop around for a bumper sticker to declare this. Most people, like me, who have someone they love that is uninsurable aren’t looking for someone to pay for their insurance but rather compassion and understanding and options. I don’t expect anything free. Those in similar situations like me don’t either.

But those words hurt because they sounded like the shouts of a bully on a playground. “Why should I? Huh?” You know, the boy hurling the volleyball at your head or knocking you off a swing. As evolved, mature people, shouldn’t we demand more from ourselves and others -- to be more human and kind, not to behave in a perpetual state of arrested development?

We often talk about moral responsibilities and doing the right thing -- a popular chorus in politics. And yet when the rubber meets the road, some retreat and care only about how things affect them and don’t take into consideration how their actions impact others.

This truck also had a Jesus fish. Seriously, the irony there almost made me careen off the road. How on one hand can you say you’re a Christian and another place a childish taunt on your bumper -- a selfish, whiny and inaccurate holler? Why should I pay for your health insurance? Well, first, if you had been listening you’d realized that nobody is asking you to pay for my health insurance. Truth is you pay already every time an uninsured person shows up at an ER for medical treatment. If you pay taxes then your dollars go toward Medicare and state insurance programs -- which is health care. Nobody is asking this angry man in his truck to pay more -- what we want is reform -- to make insurance companies accountable and competitive and non-discriminatory and if they can’t be then they should be put out of business.

People rail about death panels -- walk a mile in my shoes and you might think that the death panels are actually the private health insurance companies who aren’t interested in health care but in profits and pleasing shareholders. An underwriter who sees Autism on my son’s application reads no further and reaches for a rubber stamp --the red inked DECLINE tattooed across the top of his application. In the eyes of private insurance companies my son has a scarlet letter sewn onto his chest -- a scar in the shape of an A = Autism = not worthy of insurance.

I am exhausted by the misinformation that is out there. When I am driving my autistic son to school and see a bumper sticker like this, I can’t help but think,

“Who will you answer to someday? How will you explain your anger? Your selfishness? Your ignorance?”

I want to stop that driver and introduce him to Sean. I want to tell him my story, that I am a mother who is trying my hardest to take care of my child -- to help him be all that he can. I want to tell him that what he so smugly sticks on his bumper affects me and others like me who want to believe that we live in a country that reaches out and pitches in and cares. I don’t want a penny from this man. What I want is something bigger than that, more valuable than coins or paper. It’s the currency of compassion and kindness and the generosity of spirit.

These Are The Days

2009-09-13T21:39:00.000-07:00

Sean had a good first week at school. I don’t want to get too excited. He often has these “honeymoon” phases -- everything is new and fresh. But somehow, picking him up from school, his shirt collars poking near his ears, a backpack slung over his growing shoulders and his freckled arms outstretched toward me, I felt that maybe this time might be different. He seemed happy and even content -- a boy that I had not seen in a long time.

The other night I was talking to a very close person to me, filling her in the boys week at school. I told her about Sean, about how he seemed to be adjusting to his new school quite well. But then I got overwhelmed with sadness and heard my voice crack. For some reason I couldn’t help but think (and say to her),

“What if these are the best days I am going to have with Sean? What if this is as good as it gets?”

Then I sobbed. I know it is foolish to try to look into the future -- there is no glassy orb of what lies ahead. But sometimes I have these thoughts and they weigh me down -- cut me at the knees and I’m rendered completely helpless and immobile.

She reminded me that all I have is today. I have no control of the future. And yet, sometimes I forgot that raising a child with autism probably won’t get “easier”. All the work and sweat doesn’t necessary pay-off. My husband reminds me that sometimes we just get better with dealing with this disorder and managing our expectations.

There was a time that I thought Sean would outgrow a lot of his autistic tendencies. He would grow older and begin to read cues better and respond more appropriately. Life would be easier. The truth is, he has improved greatly but he continues to get older and he appears more different as each day passes.

When Sean was three or four or five others just thought he was “acting out” or “being a brat”. But now that he is eight, most people realize that there is more to it and that something is amiss. In some ways, I am glad -- so tired of the looks and comments and the eye-rolls. And in other ways, I feel a great amount of sadness as I am starting to see my son through the eyes of others.

We are so used to Sean’s quirks and behaviors that we forget how truly different he is. I sometimes see how other children look at him -- the younger ones find him fascinating, they smile at him and try to imitate. His peers and children older than him sometimes look at him oddly, strangely -- they don’t know what to make of him. Some laugh at him while others seem to avoid him completely. I don’t know if this all registers with Sean. I hope, for the most part, it doesn’t make him feel bad about himself. I don’t think it does but sometimes if I laugh at something that he says because I think he’s being funny he will stop, his eyes narrowing and say,

“Don’t laugh at me.”

I will explain that I am not laughing at him but at how clever or funny he is. Still, I don’t know if knows the difference.

My very dear friend is right -- all I have is today, the here and now and it’s futile to try to predict the future or imagine what life will be like down the road. Maybe right now are the best days with Sean. Maybe the best days are ahead. Maybe it will be much more difficult down the road and maybe it won’t. Nobody really knows. What I know for certain is that I want to savor the good moments, the bricks of the school shining in late summer heat and the smiling boy running toward me and swimming in my arms.

Life's Lesson Plan

2009-09-08T19:36:00.000-07:00

The boys went back to school today. The ritual begins, seasoned with nostalgia -- a bittersweet reminder of my own childhood, crawling out of the covers into morning darkness, the air thick with the end-of-summer-almost-fall feel. It’s the passing of time; filled with anticipation and new beginnings and heavy with memories fading like poloroids left out in sunlight, bleaching out the familiarity of smiles and eyes.

My oldest wondered about his new teacher. What would she be like? Would she have a quiet voice or loud? Would she give a lot of homework? Sean didn’t seem to share in any of those concerns, although he did say quite firmly that he wanted “hot lunch.“ The last week before the start of school had been like the last couple miles of a marathon -- my patience growing thin, almost threadbare, muscles snapping and mind melting. So today felt like my body leaning into the finish line, the ribbon falling at my feet and arms raised triumphantly.

Another year has passed. Another year begins. And soon another school photo will be placed in the frame in front of last year‘s photos and the school photos before, (smiles with missing teeth, cowlicks and button noses) becoming distant glimpses of another time. My boys are growing, you can see it in these pictures, losing their softness and doughiness -- their features becoming sharper, more angular.

Last night the darkness creeped in, the moon hung high and fat, like a ripe peach waiting to be plucked from the sky. I pretended the moon was a lucky poker chip and slid it into the ante and thought, “I’m all in so let it ride.” I’m hoping this might be the year that I find Sean cuddled up in his bed reading a book or receive an invitation in the mailbox for a birthday party from a friend in his classroom. Maybe it will be the year where he looks at me plainly and kindly and says,

“It’s been hard inside here. But now it’s going to be okay. I’m here and I’ve missed too much.”

That’s the downfall to this time of year. The air moves like whispers, full of possibilities and magic, frosted in a sliver of impending cold. And yet there is only so much magic and often not enough to spread around. But I don’t want to give up hope. I am practical. I have played out the saddest scenarios in my head, hoping to build up permanent body armor underneath my aging skin. I don’t want to break too badly -- disappointment and expectations crumbling in my fists, rubbing dust from finger tips.

So today, I watch the army of yellow busses moving in teams to the schools, the exhaust like white hot steam and the sun struggling to crack the morning like the glossy golden yolk from an eggshell. And I can’t help but hope (or maybe dream) that this year might be a good one.

To Health With It

2009-09-03T22:39:00.000-07:00

I received another rejection letter from a health insurance carrier today. It reads, “Regretfully, the following applicant cannot be approved for coverage.

Applicant: Sean Bevins Reason: Autism”.

Sean has insurance now but anything associated with autism (doctor visits, therapies, medications) is not covered nor do the costs go toward our deductible. Worst of all, we don’t receive an R&C rate -- this is the reasonable and customary rate that insurance companies and doctors/clinics/ hospitals negotiate and put into contracts. This rate is substantially lower than the published rates at physicians’ offices and hospitals. So if a doctor visit costs $225 (and Sean’s visits do) we pay $225. If his autism was covered we would have an R&C rate, and we would pay that rate. Add to that, the $225 does not go toward our family deductible which is quite high. Each month we pay a premium and very little is covered. Our out-of-pocket costs and uncoverable expenses can be staggering. Speech therapy and occupational therapy (not covered) can run as much as $125 an hour. But for a child who struggles to communicate and/or has fine motor impairments these therapies are necessary.

It is strange to me to think we live in a country that allows insurance companies to discriminate against people, particularly children. My son didn’t elect to have autism. It is to no fault of his that he has this. It’s a difficult and trying neurological disorder that not only exhausts us physically and mentally but also financially. And yet it’s perfectly legal for him to be denied coverage because he is autistic. Clearly, we wouldn’t deny somebody coverage due to their gender, race or religion, but it’s acceptable to deny them due to a disability.

The next step is to apply for a state plan that pools together high risk candidates. This will most likely be very expensive and have a high deductible but at least he might have basic coverage for autism. We are keeping are fingers crossed that he will qualify.

It’s interesting to me to hear and read about the current healthcare debate. The people opposing it don’t want government in their healthcare. They say this loudly and with such certainty. And yet I am completely baffled by the irony. Currently, there are nearly 40 million people in this country who have health insurance through Medicare (a government run plan). The nearly 40 million people covered under this government plan are mostly those who are 65 and older. I am glad that I live in a country that takes care of it’s aging population. However, I would like to see more of an effort to reach out to everyone, at the very least the underprivileged and/or disabled and I cannot fathom why this is such a contentious debate.

Also, the idea of a public option is exactly as it sounds, an option. If someone doesn’t desire it he/she doesn’t have to choose it. But for those of us who don’t have options, a plan that doesn’t exclude somebody due to a pre-existing condition -- in our case, our son’s autism, might be an option for us to consider purchasing. Also, it could extend options to those who have no health care benefits through their employers or are self-employed. As health insurance costs rise, less employers are able to offer affordable and inclusive healthcare benefits.

I know many families that cannot provide proven therapies for their disabled children because insurance companies deny them coverage or exhaust them in the fight. For some of these diseases, disorders and illnesses valuable time is ticking away and the window is closing for their children’s success and well-being.

We live in a country that really has taken the care out of healthcare. There is little money to be made in preventive care -- my current policy not only denies coverage for Sean’s autism but it also doesn’t cover immunizations, breast exams or pap smears. It’s much more lucrative to treat cancer than it is to conduct physicals and well-being check-ups. I don’t think that bodes well for a civilized country. I understand that financial costs need to be weighed but at what price do we write off children, particularly those who face adversity in their young lives everyday.

Sometimes it‘s important to tune out the noise and the scare tactics. Let us not forget how critical the art of listening really is. Most times it’s the calmer, more rationale voice that makes the most sense. Take out the my and the me and replace it with the us and the we. Life is not an individual sport -- it’s a team effort.

Keeping the Faith

2009-08-28T13:49:00.000-07:00

I have a picture of Sean in his baptism gown -- silvery white with puffed capped sleeves and lace trim. We took him to the church, waited in line with the other parents, to have him blessed in the cleansing waters, bathed in God’s benevolence. It was not so critical for me to participate in the sacrament but more about keeping a promise to my Irish mother that Sean would receive the sacrament -- God forbid he die in infancy and succumb to living out eternity in limbo caked in original sin. She had already administered her own baptisms of sorts on each of my children. When seeing her grandchildren for the first time she wet her fingers in holy water that she had brought back from Ireland. She did the blessing herself. It was no harm to me or the boys and I am a sucker for tradition and ritual. Besides, my mother’s brand of Catholicism fascinates me -- a mix between scripture, mythology, superstition and folklore.

As a child, if I lost something, my mother would say confidently, “I’ll pray to St. Anthony.” If it was a small miracle needed she would pray to St. Jude. If someone was having trouble selling their home then it was an appeal (and a statue burial) to St. Joseph. Saints were housed like a spice rack in my home -- sprinkle one to flavor a moment in our lives. I am drawn to stories, real or not. This idea to explain life’s mysteries through religion or mythology, literally or metaphorically, from a literary standpoint is appealing to me. It is a part of who I am. It is the core of my imagination.

We were raised to go to mass every Sunday unless the Chicago Bears were scheduled to play a game. Then my brothers were allowed to miss or go on Saturday evenings -- for them God ranked right behind the Bears. My brothers, sister and I would try to attend the mass with the priest who chain-smoked. His masses were quick, succinct, his nagging nicotine addiction hurrying things along and we were out in no time. We also would go to mass over at the chapel in the Catholic hospital. Afterwards, we would go to the hospital cafeteria and get donuts and orange juice.

As we grew older, we found ways to cheat out of church. One of my brothers would drive us to the parking lot of St. Julian’s Church. My sister or I would get out of the car, take a look around to see who was at 11 o’clock mass, check which priest was scheduled to say mass, grab a church bulletin and head back to the car.

“It’s Father Stephen and the Driscolls and Pat Edson were there. Let’s go get breakfast.”

Back at the house, we could hand over the bulletin (our proof that we went) and pass our mother’s quiz about mass. My mother used to go to mass everyday. When her mother died she stopped going pretty much all together.

There is no St. Kathleen, my given Christian name. Obviously, I won’t be filling those saintly slippers anytime soon -- I'm certainly not vying for the title. Not to mention no one could confuse me for a Saint, that’s for sure. There was a St. Catherine of Sienna who, for three years in her youth, received celestial visitations and had conversations with Christ. She later went on to care for the sick and dying. I don’t know much else about her butI know for certain that I am not named after her nor created in her likeness.

What I do know, is that from an early age, Sean has been drawn to water -- whether it be the highly chlorinated pools, rocky rivers, muddy lakes or the salty ocean. When he swims, his arms slicing in out of water, I imagine the sacrament of baptism, that he is drenched in enlightened waters, bathed in God and Mother Earth’s mercy and grace, immersed in healing, and his disability, for a moment, shedding from his skin and mind. Then I imagine him emerging in new light, in a new day, a new world where he is not thought of as a broken child or a throwaway, but rather a sage of sorts, a boy who can teach us to be kind and tolerant and loving -- to really capture the essence of Christianity that is so often missed in organized religions -- to be understanding and charitable, to practice tolerance and compassion, without judgment and to love freely without conditions. Leave the fire and brimstone in the hearth where it belongs, not in the minds and on the tongues of the angry and misguided. I'll take my faith sunny-side up.

I Don't Like Mondays

2009-08-24T19:07:00.000-07:00

The Boomtown Rats got it right when they sang “I Don’t Like Mondays.” For most of my life, Monday has been a hurdle -- a cyclone fence topped with barb wire -- not the beginning of a new day or at fresh start to the work week. I have started and failed many a diet on a Monday. In my twenties, I pulled myself, completely unwilling, out of bed to catch the 125 city bus in the park for work on Mondays. I have ended most vacations on a Sunday only to wake Monday to the discombobulating racket from the alarm clock getting the boys dressed and fed and out to school by 8 a.m. still in a complete fog.

Mondays my husband gets an early start -- his cell phone alarm buzzing and ringing on the windowsill -- my oldest son, sleeping on the floor after having a bad dream mid-night, and Sean wide-awake, sitting on the back of my legs saying over and over, “Mommy, wake up.”

I can’t hand him off like a baton to my husband, he is not running in this race today. He’s participating in a different race, better known as the rat-race. On early Monday mornings, it’s just Sean and me, getting ready for an intense sprint.

Even when I was a kid, I despised Monday. My sister and I, still to this day, laugh about the ticking sounds emanating from the old Zenith on Sunday evenings -- my parents Pavlovian response to the tick-tocks -- clearing dishes from the table just in time to collapse into the sofa and watch 60 Minutes the Newsmagazine Show. For my sister and me, it was just a painful reminder that the weekend was closing -- all work and no play in front of us. Time to finish up homework and get our clothes ready for tomorrow -- for Monday. Time to start the cycle all over.

Mondays stretch out for me like the vast wilderness, the landscape perilous, the geography problematic and the dangers uncertain. And yet I have no other choice but to journey ahead, picking my feet up and throwing them forward. Mondays can set the tone for the whole week -- a difficult Monday can mean a difficult week. And Sean, he is the Magic 8 Ball who can determine what the future holds -- Ask again later or Not likely or Yes. I don’t think he wants to have such power, but the truth is, he does. Our lives are often mingled together -- a good day for Sean equals a good day for me -- an equation that relies wholly on the parts equaling the sum no margin for error, no rounding up. I say this with math not being my strong suit -- disappointing since my father is an accountant and one brother is an actuary.

So today was bumpy. Some fits and crying that didn’t make much sense. I let Sean ride his bike, careening across a large expanse of black asphalt, his legs pumping with purpose and power. He became whiny shortly after.

The afternoon we went to the swimming pool at a nearby college. Sean flirted with the pretty young co-eds and said to one of them, “I am going to marry you.” His brother turning scarlet behind him. They laughed and let Sean splash them. Not long after, he asked to leave because the water was cold, his body pimpled with goose bumps. In the car ride home, his brother practiced his guitar and Sean made up songs and then complained that he was too hot.

So now Sean and I are in the kitchen and he is talking about strawberry season,

“It’s over, Mommy. Strawberry season is over. No more strawberries.”

He is commenting on the empty strawberry patches in our and our neighbor’s yards. Truth be told, there hasn’t been any strawberries since late June, but this hasn’t stopped Sean from mentioning it everyday since. It’s blackberry season. Tomorrow on our walk we will pick the wild blackberries, careful of the thorny branches. I can’t wait to see Monday in the rearview mirror. Welcome Tuesday.

All The World's A Stage

2009-08-21T18:37:00.000-07:00

The other day I called my husband at work, my nerves frazzled. Sean was having a tantrum for no reason that I could think of. If I don't know why Sean is upset there is no way to talk him down, to give him the peace of mind he so desperately needs. He spirals out of control until I can't discern any useful language. He grunts and screams, his arms and legs flailing, completely frustrated. I sent him to his room where he stormed off, yelling and crying and falling to a heap on his floor like a pile of laundry.

Add to that the toilet in the kids' bathroom wasn’t working properly. It kept running and filling up with water and the shut-off valve was intent on ripping off the skin on my palms as I tried to wrestle it shut with not much success. I couldn’t keep it together. It was Sean’s third tantrum and it wasn’t even noon. I was afraid that I was going to lose it -- scream and cry just like him and knew that if I did anything like that, the situation would be completely unmanageable.

After I sent him to his room, I began shutting all the windows to keep the hysterics contained to our home. I went down to the laundry room and paced back and forth taking deep breaths and covered my ears in an attempt to block out his yelling and screaming.

Then the thoughts came to me, crawling in my head, making the sadness almost unbearable. What is the point of this? Why does he have to suffer? Why do we have to live like this? I realize it’s pointless. It’s entering that dark black hole, circling the rim, then spreading arms wide open and falling forward into nothingness -- and who knew nothing could feel like a thousand pin-pricks. I called my husband and said plainly,

“I cannot do this anymore.”

My husband is having a stressful time with his work. His only employee gave him notice and he’s scrambling to fill a vacancy that he really can’t operate to long without. His wife can’t hold it together anymore and he can hear the not-so-faint sounds of his hysterical son in the background.

“Hang in there,” he says but he knows whatever he says will not be the right thing to say. In fact, he can’t win for losing.

“Hang in there?” I say, quietly seething. Not so much at him but just at everything. “I have been hanging in there for the past six years. Something is going to have to give.” '

Days like that are hard to balance in my weary hands. Like a heavy pane of glass, teetering in my tight grasp, every muscle cramped holding it steady so it won’t crash into a thousand tiny silver shards.

Sean eventually calmed himself down. He has gotten much better at this. When he came out his eyes were swollen from crying and his breath was quick and shallow.

That evening, we headed to our neighbor’s home. She is lovely and kind woman who has offered to have Sean be a part of a childrens’ theatre group that she teaches during the summer. This group is made up of seven neuro-typical kids and Sean. It was the debut of their play that they had worked on most of the summer.

I had put on some mascara and lipstick, pulled my hair back trying to hide the stress of the day. The room was packed with kids and parents and I was soaking with sweat, so afraid Sean wasn’t going to be able to do it.

He did it. Just fine. He had two small parts where he danced with the other children. His excitement was palpable. He do-see-doed with another little boy and he was perfect. My eyes were stinging with tears and I couldn’t stop them once they started. I have never felt such a surge of love for him as I did watching him with the other children. In the last song he danced with a red scarf, tugging it through the air, the gauzy material floating like a dream. He knew what to do and he was doing it. He had transformed in front of me -- not the autistic boy in his own world but any boy in a bigger world. He was accessible. It was a beautiful sight.

When the play was over I met up with my husband outside. He smiled at me and I could see he was overcome by the moment.

“He did great.” he said. It was the same look he had when our older son outplayed an opponent in hockey or lacrosse. He was proud.

I must have looked crazy. My face all red and wet with tears, I had an uncanny resemblance to Alice Cooper--my mascara puddling on lashes and cheeks. I should’ve known better than to put on mascara. When I found Sean, he grabbed my hand and he was back to his usual hopping and pinching the other kids. When we walked home he looked up at me and said,

“You sad, Mommy?” worry creeping into his little voice.

“No, Sean, not at all,” I said, my breath choppy, overcome with such a great deal of emotion. “I’m just so happy. So happy that you did so well. You were awesome, little man.”

The truth is, I saw my child in a different light. He was brave and eager, not afraid. He kept asking, “Is it my part, yet?“ his heart thumping against my hands as I held him back.

"Almost, Sean. Almost," I said rubbing his tight shoulders.

Earlier that day, in the heat of the battle, I questioned what was the point of this life and what lesson was there to be learned. By evening, my face still flushed, I came to the realization that despite all the challenges, this life of mine, these children of mine, this family of mine are meant to be. They are all that matter. It’s not something I can put into words. It was a profound and certain feeling -- something that makes me less afraid and hopeful for better days ahead.

Off We Go...

2009-08-17T17:11:00.000-07:00

I found a picture of Sean and me at the Cliffs of Moher in County Clare. I am hugging him so tightly, his hair whipped by the heavy winds, his pink lips bent with laughter, behind us, the Atlantic Ocean pounding against the cliffs. The swollen clouds above us lingered, spitting rain and coldness on our necks. Sean was two years old, feisty and unpredictable. I am smiling but I know how scared I was that he’d be swept away by an indiscriminating current of air. I showed it to my husband and said,

“Remember when we took him on that long plane ride, when he was just two, to Ireland? What were we thinking??” We weren’t.

It was a family trip --my parents and all my brothers and sister and their families were going to the wedding of our cousin in Galway. We didn’t think twice. When we arrived at Dublin Airport Sean was a mess. His big brother, only four years old, trying to calm him as we waited for what seemed days in line at immigration. He cried, screamed and squirmed, too much for us to handle with the luggage and car seat. We ended up abandoning the car seat in a corner near the baggage claim area in order to free up our arms to help contain him.

We took a bus that dropped us off too far from our hotel. We were like the walking wounded, jet-lagged, strapped down with too much luggage, carrying one child and pushing the other in a stroller down the uneven streets of Dublin looking for our hotel. When we did check-in, we collapsed, exhausted while Sean, still wide awake, ran around the room, climbing on chairs and jumping on the bed. The three of us managed to sleep through it all.

We took Sean and his brother all over Ireland by bus. Up to the north, to the county of Donegal -- a little town called Drumkeen where my mother was born and lived for a time. We stayed with cousins who adored the boys, especially the little red-headed leprechaun that never stopped moving. We caught another bus down to Galway to stay in a little carriage house we rented in the neighboring town of Clarenbridge. The boys loved it but my husband and I felt that we were living in the Keebler Elves’ cottage, with tiny beds and chairs and a mini-stove. The rose bushes spilled over the fences and the boys ran up and down the gravel with a soccer ball. We went to the Galway races, hung out in the pubs and had lunches with family and old friends of my mother’s. Finally we took yet another bus after the wedding back to Dublin where we caught a flight to Chicago.

There is something completely innocent and blissful about not knowing. Sure Sean was a handful, but he was so clever and bright and beautiful. We had never suspected that he might be autistic. In a way, I’m glad we didn’t know. We might have never taken that trip. My children and their cousins played on the same land that my mother’s ancestors lived and loved and died. What a gift to share with them. We made the trip, unsuspecting of what was happening on the inside to our lovely child, not realizing that little by little, he was slipping away.

He remembers the trip. Or maybe it’s just the stories we have told him, creating pictures in his mind as real and alive as anything. I show him photographs of us in the hills of Donegal, where the land comforts the sea, the hills thick with heather.

“That’s me,” he laughs, “that’s me where Grandma’s people come from.”

Once the Druids and Irish pagans roamed those same hills, chanted around stone circles worshipping elves and fairies; and in the glossy pictures my children tumbled through those ancestral lands, carrying the humid wet winds on their shoulders, unaware of the sacred ground beneath their tender feet or the sweet breath of earth-gods rising up from the holly and hazel.

Tree Boy

2009-08-14T20:01:00.000-07:00

Wednesday night I tagged along with my husband and Sean on their hike. Usually twice a week or more, my husband takes Sean over to Tryon Park -- a state park located in Southwest Portland. It was raining (unusual for August in Portland) and the trees and ferns were damp and the trail had turned muddy. Sean set off -- running and then stopping suddenly to climb into the arms of a tree. Sean knows each of these trees as he has hiked this area numerous times. He pulls himself up against the slick tangle of branches, careful not to crush the giant sticky slugs that are parked all over the trunk and arms, and he finds a sturdy bough. He climbs onto it and affectionately hugs it, his body one with the tree, camouflaged in moss and wet leaves, tickled by raindrops that make their way through the forest ceiling.

It is tender to see this. A boy happy with nothing else but the dependable muscle of a tree, embracing it like an old friend, his cheeks wet and dirty and a smile peeling across his face. I have to stop myself from wiping his face, pulling his wet, damp shorts up, tying his shoes or shouting after, “Careful, watch out for the tree roots!” I think he could navigate this forest in the dark, alone. There is a connection between him and this lush secret garden, a force pulling him through, the familiarity of the trees and the paths -- he feels more at home here than in the rest of the busy world.

He finds the little trails that bring him down to the creek, branches slapping after him. He immediately jumps into the water, a baptism of sorts, his gym shoes filling with the creek, and bends his head down to swirl his hair, his head soaking wet and water running into his eyes and smile. My husband watches him closely; he and Sean have done this probably a hundred or more times. This is their place.

“Daddy take me but you can come.” he said to me when we left. I’m a visitor by invitation only. I am grateful to have come along.

When we come home I scoop him up in my arms, burying my face into his tummy, cautiously, like the belly of a kitten. He is mine. He commands me to dance. “Dance mommy.” he says laughing, twirling in hypnotic circles, his arms open wide. I twirl with him, letting go of the day, just me and my boy, laughing and spinning.

Being Present

2009-08-10T14:19:00.000-07:00

Sometimes I carry fear between my throat and the back of my tongue, like orange safety cones slowing me down, reminding me to be cautious but making my breath sluggish and my lungs overworked. The panic catching and closing my throat. Hope for me is sometimes like floating soap bubbles, glossed with rainbows, but far too tender, easily popped between careless fingers or a wayward branch or just simply out of my reach.

My son can’t read. He can’t write legibly. He can’t tie his shoes. Or wash his hair. Many times he puts his clothes on backwards or inside-out. What I fear most is what will happen to him, down the road. I can’t imagine my life without Sean but I also think he couldn't imagine life without us. We are a house of cards, each needing the gentlest support from each other. If one of us falls then we all do.

Sean is teaching me to live in the present by example. The past is in the past and the future is a luxury that I can’t afford. What is certain is the littlest moments, the ruffled red hair peeking out of covers in the morning, the boy spinning on the wooden merry-go-round, back arched, laughing or little sunburned arms and cheek smelling of chlorine. This is what I have. Today.

I've spent a lifetime musing about the future or over-analyzing the past. Taking so much for granted. Moving with speed and greediness, forgetting that life is finite, wishing it away or letting it slip through my fingers like wind -- until it is gone, distant memories that make me incredibly nostalgic.

I recently wrote this poem about Sean when I was thinking about how much he enjoys life without caution or concern. He swims in the ocean, rivers and lakes without much thought. As a toddler he climbed high up in trees or over fences, balancing his small body with perfect ease. I want him to be safe. I can’t bear to think of him hurt or scared or alone. And yet I admire his bravery and how he embraces the moments -- without over-thinking the past or future. He only knows how to live in the present, unencumbered and free.

A Bird in the Hand

I held him tenderly
a ruby throated hummingbird
his racing heart too quick
and impatient for this world.

He begged me to unfold his gossamer wings
Tucked gently behind angel bones
To lift him into humid air
Toward flowers drenched in nectar
His body growing restless

In my palms he thrashed and scratched
His escape futile.
I am far too selfish
To ever let him go.

Katie Donohue 2009

Belonging

2009-08-07T09:15:00.000-07:00

The weather has changed sharply. Last week it was topping out at 107 degrees -- Sean and I scrambling for relief in the public fountain park and the local pool -- and today the thermometer is struggling to make it to the seventy mark. It has just passed mid-summer, as far as the school calendar goes, and the school year is less than five weeks away. And honestly, I am worn out.

Sean needs constant movement so we have taken advantage of going for long walks in the cool mornings, just the two of us and the incredibly irritable scrub jays arguing in the treetops. During our walks, Sean skips and turns and breaks out into full-on sprints. He loops back to me and asks me more of the same questions,

"Why you have a nose?” “

What was your Grandma’s name?", and

What cartoons did you watch when you were a little girl?”

Sometimes, exhausted from this, I don’t answer him and he says to himself, “God gave you your nose. Margaret is both your grandmas and you used to watch Felix the Cat.”

Over and over this routine goes. We stop at a park in the middle of the path and Sean heads to the monkey bars, his arms and shoulders already showing signs of muscular development as he effortlessly pulls himself back and forth across the bars. He swings on the tire swings and goes down the silver slide. It is early enough so we have the park to ourselves. He starts his questions again.

"What is your Papa’s name?”

“How many people are named Mike?”

“Where is my Grandma from?”

I answer him (“Tim, Lots of Mikes, Ireland”) although sometimes to myself I think, “Please stop talking. No more questions.” This thought is quickly followed by a dose of guilt. He is my child. Clearly, it gives him comfort to go over and over with this routine. Be a good sport and play along.

Sean does not have much in the way of friends. Most children don’t know what to make of the boy who is clapping and hopping, making odd noises. There are few, if any, camps and activities for children like mine. He wants friends and he wants to play sports (“Daddy, what sport can I play?“ He asks when his brother is dressed in equipment for hockey or football or lacrosse) but he struggles to do either. Sean has to work twice as hard (if not more) than his typical peers. He is wired differently. Things we all take for granted are hard work for him.

As a parent, it can be extremely sad to see this -- a little turtle trapped lying on it’s shell, it’s small arms and legs kicking up in the air. I wish I could “right” it for him (and I wish it were that easy) -- place him correctly on the ground and watch him scatter away with an army of friends or onto a baseball field with teammates. What comes so naturally for my older son is a complete puzzle for Sean. He wants it but he's not quite sure how to get it.

It can be a lonely world for him. When I am annoyed with his questions and feel crowded by his constant company I will remind myself that he has the same needs as any of us -- the comfort of others, the need to be listened to and the desire to belong. It’s really that simple.

Locked Out

2009-08-03T22:08:00.000-07:00

Lately, Sean has been removing the knobs off of the kitchen cabinets, dresser drawers and door handles. I don’t think he’s intentionally trying to make us go mad, but nonetheless, we slowly are. He is also locking doors; the doors to our bedrooms, to the bathroom, the sliders to the kitchen and the deck, the front door and garage door. We find ourselves constantly stalled -- grabbing a knob that catches on the lock and keeps us from moving forward.

My older son has put pennies underneath the trim of all the doors.

“Look, Mom, if you get locked out there’s a penny right under the door.” he says removing the penny and sliding it into the lock to unlock it.

He grins, impressed with his solution. He is such a flexible boy -- laid back and forgiving. He tries to work around it, while my husband and I bubble over with frustration.

“Sean! Why is my door locked?” I yell, my arms filled with laundry that needs to be put away.

He hustles up the stairs, grabs my thigh and says breathlessly, “I’m sorry, Mommy. I love you.”

“Sean, do NOT lock my door anymore. Understand?”

He nods his head but his focus is waning and I know that it is a struggle for him to manage these compulsions. I know, at that moment, he means it. He will not do it. But minutes later, he has given into the compulsion, his promise lifting like fog and my door is once again locked.

When my husband parks his car in the garage and cannot enter the house, he bangs his fist and shouts, “OPEN UP!” He has had a long day, the weather is unbearably hot and his entrance to our home has been hindered.

I open it up and he looks frustrated. “Why are all the doors locked?”

I look back helplessly, “Don’t get upset with me, I didn’t do it.”

He lowers his head, wipes his brow with his hand and says quietly, “I know. It’s just so annoying.“

We both know this. We are always having to manage our stress -- like ice building up on street curbs, we have to remember to spread the rock salt, lower the temperature, melt away the hazards. We have to work as a team. There are the moments, “You’re blaming me!” or “I can’t be responsible for him 24/7.” But at the end of the day, we are on the same side -- we just want our boy to move forward -- to unlock his potential.

This will fade. He will move onto something else. Last month it was switching the lights off and on and off -- our house looking like a European disco at nighttime. Before that he refused to use his fingers to carry things, he pinched his toys between his wrists. And before that he used to lick his shoulder every couple of minutes.

When I told him not to do this, his eyes grew wide and he said, “I don’t have to do it?”

It took everything in me not to cry in front of him. Poor little guy. When he said that it was like passing me a decoder ring or showing me on a map the strange place where his mind roams.

I have to remember this. It isn’t deliberate. He is just a boy with small shoulders and a heavy sack strapped to his lean back. He does his best to carry it but sometimes he needs a break. He needs somebody to lift the burden, to put it on her stronger, larger shoulders and to occasionally lighten his load on this journey.

Back Back

2009-07-31T16:36:00.000-07:00

I often think how much less our parents were in our lives than we are in our children. They preferred to watch us from a distance, offer us independence early on while we stand so close, anxious and eager to smooth every little bump and stumble for ours. It’s not a criticism but more of an observation.

We seemed to run free in our neighborhoods. There was no such thing as a “playdate.“ That would have seemed absurd at best. We would play in the corn fields all day. The field mice running quickly near our feet and the flies buzzing against our sunburned faces. We didn’t have sunblock, of course. (Add to that, no hand sanitizer, either.) If it was around it was far too precious to spend money on. The word “proactive” wasn’t part of anyone’s vocabulary. Instead, we had Palmer’s Cocoa Butter or Noxema to slather on our burnt necks and legs. Or cold baths with vinegar. “Reactive” was a word and that’s how most incidents were handled.

My older brothers collected beer cans (can you imagine today, letting your kids collect empty, dirty beer cans and letting them display them pyramid-style in their bedrooms??) and my sister and I would catch salamanders and trap them in the steel milk box. We never went into people’s houses to play -- we played outside mostly, unsupervised. I couldn’t tell you what the inside of our neighbor’s house looked like -- I do know that all of their kids’ birthday parties were done in the garage and the mom used to hand us windmill cookies out of her screened door.

My parents also had a cottage on a small lake in Wisconsin. On the summer weekends we would hustle into the VW bug and head up old Route 12 to the lake. Seven of us piled into a tiny VW bug. My youngest brother and I would call “back back”. It was the tiny boot behind the small backseat -- really in modern terms, a death box. No car seats, no airbags to decapitate the heads of children weighing under eighty pounds, only the sudden rear-end crash that would clearly end us all (at the very least, my brother and me). We squished in the back back, with hardly any room to breathe. the growl of the engine blocking out any dialogue and yet we were delighted. Yet, somehow, we seemed to always remain unscathed. We were a lucky bunch, weren’t we?

It's one of my favorite memories -- the red VW bug, all seven of us squished together, heading to the cottage, a weekend of swimming and playing at the park. Up until Sean's diagnosis, my life has been pretty carefree -- for that I am grateful. When I think of my life before Sean‘s diagnosis I laugh sadly to myself and say “back, back.” During the tough moments, when Sean can't be soothed and we are all exhausted, I wish I could, for the briefest moment, go back back. I want to ride carefree and happy, hot wind knotting my hair, not knowing what is about to crash into me.

Good Grief

2009-07-27T13:40:00.000-07:00

When the diagnosis was definitively made, it felt like falling through time and space, my arms stretched wide open and my chest burning red. I had known it was coming. I had put Sean’s “symptoms” into a Google search engine, like a vacationing retiree stuffs quarters into a slot machine, hoping to come up with stacks of golden bars or ripe red cherries but walking away with only empty pockets.

When the words were said out loud by a doctor it was like being punched in the throat. I could hardly breathe. Once the words were spoken it all became real. It had breath and muscle. It was not going away. This was nothing that I could fix.

I still remember that day. I can still see Sean playing on the floor with stacking rings. I remember seeing my husband reach for my hand but I could hardly feel his, my fingers numb and my palms damp. I knew the words were coming like a commuter knows the time of his morning train. But when it arrived I remember wishing I had put off the appointment, covered my ears or left. It hurt so much more than I had anticipated.

Sean's official diagnosis is PDD-NOS Pervasive Developmental Delay - Not Otherwise Specified. Somehow the NOS part always makes me chuckle. PDD-NOS -- the acronym sounds so definite and exact. The Ah-ha! When the reality is that it's incredibly uncertain and vague. That's the tough part of autism. There's so much ambiguity. The spectrum is large, a vast sea of symptoms and degrees. It's the holding cell where you are initially placed.

It took a long time for it to really sink in -- the diagnosis. I would watch my older son at the park or on the soccer field, his face salted with freckles and his cheeks flushed, laughing with his friends, and I would feel such sadness in my bones. I would walk past a park full of little kids on swings, their small feet tapping the sky and my heart would catch in my throat, my eyes stinging. Why? It wasn't the end of the world. We would make the best of it, right?

I couldn't understand it until a friend explained to me that what I was feeling was grief. I was grieving for the life I thought Sean would have. For the life I thought all of us would have. I was sad for my older son who wouldn't have a brother like I had promised him when Sean was born. A play mate. A best friend. And mostly, I was grieving for the boy Sean might have been if it were not for autism.

In time, I learned that grieving was actually good and normal. I had to dry out the wounds, let go off the heaviness and to love, completely and fully, what I had and give thanks. I had to not only for me but for my husband and children. I had to grieve and I had to move forward. I couldn't remain stuck. The diagnosis already took away so much from me and I couldn't afford to let it take anymore. My family needed me. I needed me.

Life is tricky. In a blink of an eye, everything can change. One moment your course is set for one direction and in an instant, it breaks like a thick vein of lightening bolting you in the opposite direction. Is the lesson not to become too comfortable or to live in the moment or take nothing for granted? Maybe it is all three. Maybe it is none of these.

I used to think I had much more control over life's outcome. The older I get the more I realize how complex it all is. I've learned to take each day as it comes -- peel off the skin and head in teeth first and eyes shut. In the end, it's all a gamble. There are no guarantees. There are no sure bets in life. I'll take my chances.

Poetry in Motion

2009-07-23T15:10:00.000-07:00

Some days I like poetry best. It's powerful, yet can be wrapped tightly in the fewest words. Poetry can be impatient -- I like how firmly and smartly it gets to the point -- it doesn't have the luxury to "talk it out". It is certain and yet dreamy. Good poetry is a sliver of the best chocolate that melts slowly and the memory of it stays with you all day, all week and even a lifetime. It might be a handful of lines on a napkin and yet the dimensions and shapes of the words can be potent and limitless. It's the McGyver of literature really -- the fewest odd words can be constructed into a bomb that can tear an enormous hole in my heart.

Sean is poetry to me. He is limited in how he can express himself, and yet when he does, sometimes it is the most lovely observation. My favorite is on a rainy fall day when he started sniffing the air, a trained bloodhound it seemed and said simply,

"The clouds smell good. Can you smell the clouds, Mommy?"

It was the scent of cold damp earth and wet evergreens - it was simply the smell of clouds. I would have never thought that clouds would have a particular scent, but after he said this, I was completely tickled. He also loves the smell of sunshine.

On a warm day in June on our way to school he stopped with sudden purpose and said simply, "Smell the sun."

I took a deep inhale and smelled the ripe strawberries in the patch, the bloom of rhododendrons and azaleas, and the musky leaves of the Japanese maple. Where would these all be without the sun's warm caress? This was not lost on Sean.

When Sean dances and spins and hops there is rhythm to his movement, there is poetry echoing in his ears. His smile is large and eyes bright, the look of an old soul surfaces and I wonder if he is much more a part of this world then I and/or others give him credit for.

The first poem I wrote about Sean is one of my favorites. Mostly it is a favorite because it is a reminder of how far he has come. I wrote it in third person because I needed to find safety in distance -- we were new to the diagnosis and unfamiliar with what it would mean to us as a family. At the time, it was too hard to write in first person -- I needed to buffer myself from the sharpness. I sat outside of myself and looked in and this is what I saw and this is what I wished for.

Broken

Flapping arms,
a flightless bird
perched
in a nest of wooden train tracks.
He stops for a moment --
Small fingers curl around a tank engine.

He pulls away from her like
a cheap iron-on
or the peel of an apple
freefalling
into the sink,
sticking
to the drain.

She wishes on
fallen eyelashes,
other children’s’ birthday candles,
pollen that she catches
like a whisper
in her fingers
that he will wake with words
wet on his lips
like shiny drops of rain
spilling from his tongue.
She will ask,
"Where have you been, my boy?"

katie donohue
2005

The Climb

2009-07-20T17:41:00.000-07:00

This past weekend my husband, two boys and I headed to the Mt. Hood National Forest to camp. The mini-van stuffed full with a tent, blow-up mattress that had a not-so-slow leak, a grill, propane, swimsuits, food, pots, pans, cooler...

We got a campsite along the Salmon River, an icy tributary of the Sandy that meanders down the mountain, tickling over rocks and fallen trees. Sean knows this spot well. He has camped here almost a dozen nights. He gallops down the trail, over uneven rocks and splashes his feet into the water, throwing his arms back and squealing -- his balance certain.

"Careful," I tell him, in the middle the current runs quick and the rocks get larger, more intense. He puts his arms into the water and then dunks his head -- his red hair slick and dark. This is where Sean is the happiest -- away from asphalt and traffic, people and expectations. There is nothing here except thick firs and cedars, blackberry bushes, lush ferns and the rush of the river, his body keeping time with the rhythm of water.

At night, we sit around the campfire, Sean roasting his marshmallow over the heavy flames, the fire licking his melting glob, turning it to a black bruise. He doesn't mind. His lips and fingers sticky with sweetness and ash. He is delighted.

The sky turned into inky blackness. We could see very little but shadows from the fire and the citronella candle burning on the picnic table. The kids and I made our way into the tent, the mattress slowly depleting of air, a mushy sheet of plastic covered in velour, not protecting us from the rocks and sticks underneath the tent floor. My husband slept in the mini-van -- his hip sore and the sight of the dying mattress completely unappealing. We slept soundly, the river rushing with fury and muscle.

In the morning we drive to Lost Lake, a gorgeous alpine lake, crowned with gigantic firs -- the jewel in the middle -- a perfect view of Mt. Hood. My husband and the kids rent a canoe and I went on a hike around the lake.

What I like most about Mt. Hood is the snow that ices it's edges and points. The glacier is resilient, not giving in to the unrelenting heat from the sun. Never surrender. I wish I could have such perseverance, that I could hang on so tightly, the proverbial David battling Goliath. How does it remain so undisturbed by hot, piercing sunlight? In the valley the weather tops ninety degrees, but the mountain remains frozen like held breath.

When I am tired and feel like giving up, I want to remember that view -- the north side of Mt. Hood -- like rippling muscular shoulders with the brightest white snow -- sturdy and dependable.

I Couldn't Sleep...

2009-07-16T06:08:00.001-07:00

I couldn't sleep. I fell asleep quickly. But I woke up, the morning still dark but some early light spilling through the blinds. Sean was up, too. He was switching his light off and then on, off and then on again. I got out of bed and led him back into his bed. He was half asleep, his eyes barely open and his his cheeks red. I covered him up, kissed his eyelashes and turned off his light. He turned to his side and tucked his hands under his chin. I waited until he was sure asleep and went back to lying still and thinking. Once I am up thoughts rush through my mind like freight trains passing dusty fields, stirring up thoughts and ideas that have no business being explored at such an hour. I tried willing myself to sleep but it was no use.

I like the early mornings best. I move like a ghost through the house doing laundry or catching up on reading. I know by 2 p.m. I will have the inevitable crash but for now it is quiet, the morning air cool and first sunlight filtering through the leaves of the Dutch maples.

I wish I could be witty or have something funny to say. I feel like I've been a bit of a "debbie-downer" lately. I will leave with a poem today. Not a "laugh your shorts off" poem (I wish) but one I wrote a while ago when I was struggling to make sense of my situation with Sean. Here it goes -- another untitled poem for Sean.

There was a decisive
Moment when
You were all of me,
Nestled near a thumping heart
Keeping time with your breaths.

Your body a starfish
Reaching out
Eyelashes wet with tears
And amniotic fluid
A tender foot
Brushing against my ribs.

Now
We sit in separate rooms
No cord to keep us together.
I lost you somewhere between
The delivery room lights and today --
Time drifting
Into swift peaks of salty meringue
An allusion of sweetness
Betrayed in an instant.

katie donohue
2005

Holding Patterns

2009-07-15T10:04:00.000-07:00

The security lines at airports must be exact replicas for the waiting rooms of hell for parents of autistic children. The lines snaking like an impossible maze, luggage and elbows swinging every which way, my child squirming and yelling and telling the nice old lady behind me that he does not like her and trying to pinch her(for no apparent reason other than his sensory system is on full-tilt).

Now it’s time to take off shoes. No, keep your shirt and shorts on, just your shoes. Don’t cry. Just shoes. Yes, you have to. Get up. Be good. Please cooperate.

Behind me the line grows longer and impatient, sighs from business travelers, constant wrist-watch and blackberry checking. Others give me the stink eye --"Get it together, lady. Who's in charge?" I am so screwed. I try to remain calm. Pulling his shoes off, grabbing his elbow, pulling his shorts back up, shoving him through the x-ray walk through, pushing backpacks and luggage through the x-ray machine and doing my best not to cry -- like a novice waitress carrying a tray of crystal goblets up an uneven staircase, each step away from the crowd a small victory and yet the steps ahead seemingly endless.

And it doesn't end there. It’s onward to the gate area, where crowds are thick with people waiting to board or to change seat assignments. If there’s a magic walkway this means at least twenty minutes of riding it back and forth and back and forth, a pack mule loaded down with the luggage chasing Sean. God forbid the plane hasn’t arrived or the winds pick up, thunder roars and lightening tears up a cloudy sky. Did I mention how screwed I am at this point??

Delays are a cruel joke for anyone but especially for a parent with a disabled child. It means the tunnel stretches further ahead, with no light or end in sight. Take the worst case scenario and make it even uglier.

Once on the plane, Sean becomes more regulated. He sits quietly and looks out the window.

"What does plane start with?" he starts. This usually continues for most of the ride. If I am lucky, I can get him to watch a movie. Occasionally he will stop from watching Spongebob, his eyes growing serious and ask, "Is this show real?"

I look at the screen. Spongebob and Patrick are miles under the sea sitting around a campfire (huh?) and it is snowing (double-huh?).

"No, Sean, it's not real. Spongebob is a cartoon, remember?" I say, my hand on his soft hair. For a moment, I have a glimpse into his world -- a world where a starfish (wearing funky beach shorts) and a sponge (dressed in a tie and pants) are under gallons of ocean water doing the impossible (talking, starting a fire, eating chicken.) I have to remember this - -how he can't always understand the difference between real and pretend. I feel an overwhelming need to protect him -- sometimes his world is a very scary place.

I understand that my child’s autism can make others uncomfortable. I realize that there are those that feel that my child shouldn’t be at airports or other places where he sometimes acts badly. I can’t say that I don’t understand their reactions. There are many places we don’t take Sean due to his autism. Rarely do we take him to restaurants, ballgames, church or shopping malls. He doesn't enjoy the level of activity or noise. It's sensory overload. We do this not only for our sake, but also out of consideration for others.

But I wish people could know that my son is eight years old. He has autism. He is traveling so he can be with his mother, father and brother -- the only three people that matter in his universe. We can’t leave him behind. We are all he has. And we can’t live our lives shut-in, away from everybody and everything. We can’t remain forever suspended in air, a 747 circling the airport, in a holding pattern, waiting eternally. At some point the fuel tank will empty and we won’t last long on fumes. What choice do we have? We’d rather land than crash. Isn’t that true for anyone?

Use Your Words

2009-07-14T13:24:00.000-07:00

Ever since Sean was a toddler he struggled with language. I constantly reminded him to "use your words." He'd point, stomp his feet, grow restless or simply cry. How disappointing it was that I wasn't a mind reader. At that time, I convinced myself into believing that he was going to be a late talker. He was 2 1/2 years old and had some words -- Mom, Dad, Papa, dog, cat, yellow, bus and hot. And a few others words that were tough to decipher but were still words. But for the most part, he was without spoken language. My other son had talked late so I assured myself that this, too, would be the case with Sean. Besides, he had babbled like a fountain as a baby, and although his eye contact became sluggish, he still had meaningful expression and could meet our eyes. At some point, on his own terms, he would speak and life would move forward accordingly.

Looking back I realize that sometimes we shield ourselves from the information that is plainly there. I'm not sure if this comes from fear or just a mechanism of survival. By the time Sean was three he had been evaluated by an Audiologist, Speech Therapist and an Occupational Therapist. The audiologist ruled out a hearing loss. The two therapists both concluded that Sean was developmentally delayed and had Sensory Integration Dysfunction. Not too long after, it was confirmed that Sean had autism.

Sometimes life takes us on a journey that we weren't expecting. We've packed for the sunshine and the beach and when we arrive it's snow and mountains. Either way, we make adjustments. Looks like no margarita, beach chair and a swim but rather a hot toddy, a pair of skis and fresh powder. What choice do we have but to make the best of it?

Today Sean had his second day of camp. It's a program for disabled children that uses art and music therapy. The people that run this camp ought to be canonized. Saints, really, who have decided what they truly want to do in life is to work with disabled children. We line up to sign in and drop our kids off on a carpet square. Sean is jumping and saying hi to the teachers.

One teacher smiles at me and says, "Boy he sure does have a lot of energy!"

I put his bag into his cubby hole, "I know," I say, "and I swear he's not chugging Red Bulls for breakfast."

We laugh. It is true. Sean is constantly moving -- a blur sometimes. Hopping, running, laughing, climbing and yes, crying. He feels things so much more than me. When he is happy I need a crowbar to pry him off the ceiling. When he is angry I'm ready to assume the tornado position in the hallway. There is not a lot of middle ground -- mostly enormous highs and bottomless lows.

Some of the other children spin and hop, while others sit alone, pulling on a loose thread in the rug or lining up blocks. Others talk while a few have little or no words. Some are more impacted than others. Most of the children are on the Autism Spectrum. There is a child with Downs and a couple other who have chromosomal abnormalities. I am part of this community. As is Sean. I am so happy that Sean is able to carve out a little space in this giant world to laugh and play and be with other children like him. And yet I am sad to think that the rest of the world may not be prepared for my son or my son won't be ready to be part of the bigger world.

As I leave he smiles and waves his hands, his little fingers marked with paint and marker from yesterday. I wave back, "Bye, little man. Be good." He is my little man -- squirming on a carpet square his eyes steeped in mischief. "Be good. And safe."

So today I am using my words -- following the advice that I gave my child so many times. If I don't use my words than I am nothing, but if I do, I am everything. My words are the tiniest bubbles, making their way through the cold waters and popping in sunshine. If I can't find the words than I can't find myself in all of this. I need to use my words.

A Fresh Start

2009-07-13T14:32:00.000-07:00

Today I begin to blog about raising a child with Autism. My son is eight years old -- ginger red hair and grayish green eyes. For the past five years my husband and I have carried his diagnosis on our shoulders like backpacks brimming with rocks. It is not the life we thought we would have, eight years ago when he entered our lives -- a beautiful baby, slick and wet, a seal pup twisting on a scale -- a healthy 8 lbs 14 oz boy. He is our second child, all arms and legs and a flash of red hair.

It hasn't been an easy road but it's certainly been an adventure. I have had way too many sleepless nights and crying jags in grocery stores, airports, post offices, bathroom stalls -- you name it, I've cried there. Today, I don't want to be so overwhelmed by the sadness and the work. I want to be able to laugh, freely, without fear of what's ahead of me. The sad moments are too heavy. I want to explore the happier moments, the funnier moments and the tender moments.

Tender moment today. Sean is stimming in his room. I can hear him clapping and hopping. Occasionally he hollers out "Mommy?" If I don't answer him, I can hear the notch of panic in his voice, "Mommy?!"

"Yes, Sean, I'm in the kitchen."

His pressing question?? "What does January start with?"

"J", I answer. Already today I have answered that question fourteen times. It's stuck in his "loop" (for lack of a better term) and he will probably ask me this another fourteen times before bedtime.

When I open his door, he is sitting cross legged with a marker. He has managed to write squiggles all over his arms, legs and face. "What does June start with?" he says without missing a beat.

"J", I say, "Now hand over the marker."

"What does marker start with?" he says handing me the marker.

"M," I say placing the cap back on.

"M like Mommy," he says pleased to make the connection.

I nod and smile. All roads lead to Mommy in my son's world. I am his GPS who helps navigate him through this tricky world. He needs me. And, frankly, I need him. He is my compass directing me toward what matters -- what really matters.

Maybe not all people will value this little boy who has tatooed his alabaster skin with green marker. I don't know how to teach others to see how valuable he is.

But what I do know is that I don't want to be the mom that everyone feels sorry for. That is not my life. There are terrible days, indeed. But the good days? They are like nothing else. How hard he has to work and how willing he is to make the effort. He has no agenda or hidden motives. He doesn't know how to manipulate. He is a boy. A lovely boy. M is for Mommy.

M is for Mommy.