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/