Independence Day

So the fourth came and went leaving gassy streaks of firework haze fading into a starlit Oregon sky– the smell from lit cherry bombs and barbecues sifting through the landscape, spilling over vegetable gardens and soccer fields.  Sean and the dog, Duncan took turns looking surprised, frightened, tense, fleeing the deck, hiding in the basement.  Sean said in a breathy gasp, “Who likes fireworks! I don’t!” and the dog barked in complete agreement.

We were invited by dear friends to a cook out but we have tried that in the past and it hasn’t always turned out so well so we declined.  Little kids racked with excitable laughter and gripping Sparklers in their eager hands while Sean falls into screams begging us to leave, to go into the car.  Pretty much describes our past eight Fourth of Julys. 

We usually try to get him to sleep before dark before the skies pop like an electric kaleidoscope and the earth rattles.  We double up the melatonin and draw the shades, put on soothing music and a fan for white noise – create nighttime a bit earlier.  My husband and I make our way out onto the deck to hear the neighbor kids lighting off witch’s cauldrons and M80s taking us back to our own childhoods where we lit snakes and threw snaps and waited for someone to show up with the illegal fireworks that would lick and spit fire into a humid night.

This Fourth of July I thought about the whole concept of Independence.  My oldest son left with classmates on a cross continental flight, floating above the United States, across the Atlantic, changing planes in Amsterdam then onward to France.  He is thirteen, a boy really by all accounts, and yet he carries his independence like a victory flag perched on his shoulder, occasionally swinging it back and forth announcing his entrance into the world. 

He sent no messages, made no phone calls for five days.  Only after a somewhat frantic text from me did he reply – short and sweet: “I made it to the top of the Eiffel Tower.  Ok on money.  I am in Barcelona. Train was great.”   Twenty short words and that is all – he has been with me his entire lifetime, this is the first time he is travelling without family, without someone that swam out of the same DNA pool and he is adjusting fine, no fear or sadness, no missing us.

It’s a good thing, I know.  My husband reminds me this as does my father.  “You wouldn’t want him calling you in tears saying he wants to come home, right?”  Correct, I wouldn’t want that.  I’m proud of his maturity and his ability to adapt and I think he’s glad to get a break from the stressfulness of our household – summers with Sean can be difficult, a roller coaster ride and not the type that you can’t get enough of but more the type where your stomach sits in your throat and at the end the safety harness doesn’t release and you are strapped in having no choice but for another go around, loop after loop, upside down, right side up, stop and go. 

And then there’s Sean, my sweet, freckled face red head who at eleven struggles to turn on the DVD player or toast bread.  He’s the other end of it all, a child who can’t survive very long without us – an eleven year old boy that sees a murky pond in the woods and runs so far ahead of us, kicking up rocks and dust, his voice wet with tears, crying for his bathing suit – my husband and I unable to catch the lightening fast, sure-footed boy who runs deeper into the trees and brush until he falls apart and we follow his screams only to find him completely lost, unable to remember how to get back home. 

He has very little independence, his future weighs heavy on our hearts, we say things to each other like, and “We have to live a long time. We have to take care of ourselves.  We can’t die young.  Who could take care of him?  All he has is us.  Take your vitamins.” 

The summer has just started and yet somehow it feels like it has been an eternity.  Sean is with me, all day.  I am not only his mother but his only companion, his best friend and sometimes I am his nemesis, an angry, exhausted 43 year old woman who doesn’t want to look at a calendar with him for the 100^th time or go over everyone’s birthdays again – didn’t we just do that two minutes ago? 

I try to remind myself that he can’t help it – his obsessive need to repeat things over and over, to ask me the same, silly questions again and again, and the sticky thoughts glued to his head that crawl in and out of his worried mind, making him fall to pieces, throwing himself on the floor, the tears, the screaming and pain so raw you could almost hold it in your hands, arms.  He cries over forgetting his lunchbox on Thursday, April 18^th.  I tell him, ‘but that was so long ago, it doesn’t matter’.  But somehow, to him, it’s the only thing that matters and it breaks him down.  And I don’t know what logically I can say to calm his worries, to make it go away –not in the moment and not forever.  He will bring it up again and again out of the blue and all I can think is ‘here we go again, hang on.’ 

And some days I’m not sure if I can hang on if I can rely on my grip to be steady.  Sometimes I want nothing more than to let go, run and hide, refuse to hold his hand while he stumbles through the tangled forest of anxiety that lurks in his mind and body.  Some days I don’t have enough for him and certainly have nothing left for anyone else or for me.  I want to crash into bed and fall into a coma-like sleep dreaming of a day that might be different but knowing deep in my bones that he won’t be free from all the trappings of autism. 

At the end of a bad day that’s what keeps me going.  If it feels like this for me I can’t imagine how hard it must be for him, to live in the skin of it, to feel so much and have little control.   I can’t fix it for him but I can try my best to make him feel less alone and not abandoned.  It’s the least I can do for him.  He is doing the best he can.  We all are trying our best.

Resources

I wanted to pass along a link to any of you who enjoy finding and reading blogs about autism. Recently, my blog was selected to be on a list for Most Inspiring Blogs From Parents of Children with Autism. What a nice surprise! The website compiled a great list of blogs for anyone including parents, grandparents, friends and family who are looking to connect, understand and learn more about children and families who deal with autism on a daily basis.

The link can be found at:

http://blog.healthism.com/post/20520919101/parent-blogs-of-children-with-autism

Letting Things Slide

I haven't been writing much. At least in the realm of Sean and autism. I've manage to keep up with my writing class and for some reason or another, focused on other topics and even started writing fiction again. For some reason, I didn't know what to write about when it came to my life with Sean and dealing with autism. I felt a need to back burner the topic -- a bit of a break from the microscope magnifying my constant thoughts and worries.

In the three months that have passed since my last entry things have been steady. Sean had a surprisingly good winter. Usually winter and summer are the toughest seasons to navigate for entirely different reasons. Winter, for the lack of sunshine, abundance of rain and darkness,a feeling of grayness seems to overtake us and we move about like tired ghosts, bumping into each other, not careful of each other's spaces or moods. We are selfish and seem to operate in survival mood, carving out bits of good moments and gobbling it up, never wise at saving for the tough days or creating a contingency plan.

We did travel to Mexico and did our best to absorb as much Vitamin D as our frog belly white bodies allowed us. Sean was in his glory when he saw an elephant seal tag a ride on the back of a fishing boat scrounging for throwaway fish entrails. And one evening at sunset on a catamaran we saw an enormous humpback and two gray whales break through the glassy pacific like covert submarines,their huge bodies arched against the fiery sky, and spout a fountain of water into the cooling air. Sean just about jumped out of his skin for joy. The icing on the cake was the next day watching sting rays leap like giant sea birds from the waves at the beach, dozens of them taking flight for a brief moment before crash landing back into the breakers.

And Sean had his big competition for downhill racing at Mount Bachelor in Central Oregon for Special Olympics. I had to take him there solo for the first day while my husband, his ski coach who had been training with him all season, was travelling for work. It had been a few months since I had skied and the last time I had was when I tore my calf muscle so to say I was a bit reluctant was an understatement.

Somehow we managed to do it, although at one point, Sean's ski came loose from his binding, he then fell to the ground, screamed and pounded his fists in the middle of the run for what seemed like forever. Meanwhile I had to take off my skis, hike down to him with another mom, tears bulging behind my goggles and calves burning, get him back into his skis, hike back to my skis and poles and get back into my bindings while being vertical -- this took a good fifteen minutes while sweat and tears poured down my face and Sean went flying down the mountain yelling for me. We decided to make that the last run of the day!

Any time we do a Special Olympics event it always gives me a greater appreciation for those who volunteer and dedicate their time, patience and talent to help people like my child; not to mention the athletes who embody such camaraderie, hard work and sportsmanship. I think of my older son who plays hockey and all of the complaining that can be heard about a child not getting enough time on the ice or a bad call by the ref and I can't help thinking how many of us just simply miss the point and how easily we can be reminded of what really matters. When we left the mountain and headed back to Portland I felt refreshed, my priorities adjusted and checked.

I wanted to include a quick link from the Special Olympics event. There are a couple pix of my little guy Sean in the red ski coat and blue helemt with the bib #68. I couldn't have been happier with my speed racer -- even if, a few times on the mountain he told me point blank, "You go home. Where's Dad?!" I get it. There are things I'm good at and there are things Dad is good at. Remembering sunblock, packing a favorable lunch in his backpack and fast forwarding previews on a movie are mine. Skiing, taking him to the climbing gym and anything that seems to be an adventure is Dad's. I guess we make a good team.

Please check out the link. It's a wonderful montage of pix and helps put most things into perspective not to mention it always makes me smile...

2012 Winter Special Olympics

Leave It To Winnie

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

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

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

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?

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

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

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

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

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

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

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

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???

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

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

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

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

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.