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

Winter Blues And Some Good News

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

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

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

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

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

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

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

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

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