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/