September 13, 2009
Life as I Know It
I help Jon with the snap on his too-short jeans and give him some juice. When he’s done, I shoo him outside to play soccer with Steve and Kate as I watch through the dining room window. As he runs down the yard, just for a moment, he’s my 2-1/2 year-old boy again. I don’t know why. Maybe it’s the short jeans and the golf shirt hanging down loosely that make him look like my little chubster once again. Maybe it’s the baby envy that’s been creeping up on me all year, a longing that biology has decided will not be satisfied. Maybe it’s just the longing for a simpler time, before the autism diagnosis.
I can’t get the images out of my head. Jon, just barely able to sit up, laughing with me about nothing, a full, rich laugh. Jon running around Golden Gate Park in pure joy, climbing up and down stairs in the Conservatory of Flowers. Jon running ahead of me the full mile to the playground, hitting the equipment with all his might, and passing out face down in the sand. Jon running circles around Kate’s bouncy seat, and Kate squealing with delight everytime he came into view.
Then came the autism diagnosis that rocked our world. All of a sudden, we’re stuck in the house for 30 hours/week while Jon receives intensive ABA therapy. That means that Kate is in, also, and rarely interacts with other typically-developing children. Kate and I try to hide away from the therapist so as not to cause a distraction, but it’s a small apartment. We pretty much permanently move to my bedroom, where there’s not too much to do but watch TV. My energy is drained at this point, anyway, and I’m not a great playmate. We’ve already been trekking across town for speech therapy once per week, but now we squeeze in another session.
Then Jon starts preschool, and for four hours per day Kate and I are free to be us. We window shop, playground hop, and eat cookies at our favorite bakery. But Kate is still shy around the typically-developing kids, and I’m still tense and on edge about everything.
Things do improve. Now we’re back in Maryland, in a great school district, with Jon in 1st grade and Kate in Kindergarten. I have more time to work on JonsRoom, write, attend autism society meetings, volunteer at school and PTA, and to look for some type of “gainful employment” after eight years at home.
I can’t help but long for a life without autism for Jon and for my family. But since that is not a possibility, I try to enjoy what I have: a beautiful family, home, friends, and an accepting community. A husband sitting next to me who doesn’t question why I sniffle as I write this, but supports and helps me every step of the way. Children who love each other and try their hardest at everything they do.
My mother was right in her comment on my last post, Apology to My Mother. The good memories linger.
You know what? Screw the autism. My life is pretty damn near perfect, and I need to remember that.
asdmommy said,
September 13, 2009 at 8:15 pm
It always comes down to what you wrote in the last paragraph, doesn’t it? Life is pretty near perfect.
elise said,
September 14, 2009 at 8:39 am
Sometimes it is hard to remember our blessings, but great blessings they are and that is what gives us our strength.
Shea's Mom said,
September 14, 2009 at 6:09 pm
Very sweet post.
Yes, we all need to step back a bit and appreciate what we have.
You are doing a great job! Keep it up!
OX
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September 14, 2009 at 10:34 pm
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