February 6, 2017

Just Do It

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:13 pm by autismmommytherapist

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He sits quietly between me and his father, staring straight ahead as I attempt to engage him. I ask him if he’s happy to be here at the Trenton planetarium for their holiday laser light show, and I get nothing back, neither eye contact nor the glimmer of a smile. I settle back in my chair and deal with his brother who is both cranky and tired, and within a few minutes, the music and magic begin.

And my boy is transformed.

As the first notes of “Rudolph” ring out Justin begins to rock back and forth (we get there early so he can sit in the back row and rock out to his heart’s content), gracing me with the slightest glimmer of a smile. His movements really ramp up as the chipmunk song comes on, a staple of the show. I see him lean over and smile at his grandma as he does every year, and we both swear he remembers this is the first movie he ever saw on the big screen, and that he saw it with her.

So much goes on in my boy’s brain he doesn’t need to use words to express.

As the “Two Front Teeth” song comes on (which for some reason annoys me annually) I let myself think back over the last ten years we’ve been bringing him and later his brother here, how stressful this outing used to be. Some years the show was packed and so we made it a priority to get to the planetarium absurdly early which guaranteed us good seats, but brought with it its own set of difficulties. Back in the day Justin had a really difficult time waiting in line, and with food and drink prohibited even a plentiful array of toys could not often deflect our son’s desire to bolt. Often his father and I would be a sweaty mess even before they let us into the inner sanctum, but somehow once we got inside Justin always calmed down and reveled in the notes and colors of the show.

He’s always not only behaved there, but delighted in the experience. In turn he’s delighted his parents as well.

It being the end of the year and all I’m at least trying to carve out some time for reflection (it’s a goal), and as I think about how far we’ve come in the ten years we’ve made him a Jersey boy I realize how far we’ve come with other outings as well. Back in the day I’d return home bloodied and bruised from a trip to the boardwalk, my son’s aversion to waiting in line evidenced by my colorful flesh. The pool at one point held no interest for him and was regarded as a well of torture. Our first attempt at horseback riding through a family event sponsored by POAC resulted in my boy protesting on that horse for the entire fifteen minutes, his indignation at having to ride the beast apparent for all to see. Trying to get him not to bolt out of the waiting room on a blood draw day (can’t blame him for this one) was a Herculean effort I’d almost fail.

Trying to get him to eat anything that wasn’t a carb was enough to send me to my own chocolate stash.

And yet, almost a decade after we’d attempted all of these outings my boy loves the rides, and will at least do one round around the pool without protest. I’ve been told he’s an amazing patient at Lab Corp, and his horseback riding lesson is the pinnacle of his week.

Hell, the kid even eats lettuce.

The point is, even when it was grueling, annoying, or frankly painful, we kept trying. We kept trying, but not because we wanted him to like the same things as his neurotypical peers. We did it in part because we wanted him to have interests other than playing the same thirty seconds of a movie on his DVD player (which we feel is fine for a while, but not all day). We mostly did it however because we felt if we kept on trying the kid would actually like these activities, that they would allow him to stretch and grow, and most importantly, make him happy.

Eventually, we were right.

And I guess my message to anyone just starting out on this autism path is keep trying. When Justin was really little and we lived in DC our world was so small, as literally just leaving the house would trigger an avalanche of tears. I remember how in the dead of winter I literally could not be cooped up one more day. I began what I dubbed “mall madness “, which began with me just driving to the parking lot and returning home, and ended with my kid after slow desensitization loving being walked around the mall and devouring those devilishly delicious Auntie Anne’s pretzels that became my weakness too.

Even before learning the tenets of ABA I was big on rewards.

So perhaps this new year make getting out a goal, start trying new things even if they suck at first (and many will), and don’t give up on widening both your child’s world, and your own. My son is thirteen and severely autistic, and for the most part he is a delight to take anywhere, and enjoys where we go. It took patience and band-aids and lots of wine but my husband and I did it, and as I see my son’s face light up as he’s trotting away on his horse I know I’ll never regret one moment of our struggles (not even the ones that needed Neosporin).

My wish to you in the new year is plan for your outings (plans b, c, and d are good), and if anyone’s offered you any help take them up on it and bring them along. Remember that neither Rome nor acclimating your autistic kid to the outside world were built in a day.

And as Nike would say, “just do it.”

 

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6 Comments »

  1. misifusa said,

    What an inspiring, lovely post! Your determination, love, strength and optimism (and chocolate stash) have served your sons so well. You are admired by me (and your amazing parents of autistic children public) by your innate and researched ability to connect with your son, to help him to acclimate, to enjoy and to grow through all of the experiences he once endured and now enjoys. You’ve opened your heart and his world to so much possibility in such a loving way. Truly, I am inspired by you. I admire you and I am ever grateful to call you my friend. You are helping so many parents with your posts by sharing your experiences in a way in which we all understand because ‘you get it’ and you’ve been there and through sheer will, you have triumphed with your sons! Here Here! Cheers to you! ♥

  2. Cynthia said,

    dear Kimberly
    I read your article from a Chinese website and got to know the story of your two sons. In the article, it mentuoned the food part. You said you followed strictly with no Gluten, no cheese, no egg. Not sure if I understood it correctly. I have been searching such information about feeding part. It would be really great if you can email me for this food part.
    Wish all the best for your family!
    kind regards.
    Cynthia

    • Hi Cynthia, we removed gluten and dairy from our son’s diet. He now eats dairy but is still gluten free. I hope that helps!

  3. Yinan said,

    Hi Kim,

    I am a social affaires and development journalist with China Youth Daily, a Chinese-language newspaper.

    Last week, I came across an excerpt from your memoir “Raising Autism: Surviving the Early Years” on the Internet. And I’ve been reading your blog posts for the last few days.

    Your story really touched me. You’re such a brave, strong-minded, wise and thoughtful mother. Justin and Zach are lucky to have you.

    I took a course in social work as an undergraduate at Sun Yat-sen University, and I’ve been covering disease topics for newspapers and online institutes since I finished graduate school in UK and began to work as a journalist in China. I know that parents of autistic children in China will learn much from your experiences.

    So, I’m writing to request an interview, wondering if you would like to share some stories with our Chinese readers. You could be an inspiration to them.

    Could we make a voice or video call this weekend? We can use Skype or FaceTime. I expect to need about 30 minutes of your time.

    I’m available all weekend and can be flexible around your schedule.

    I know you must be very busy taking care of Justin and Zach, so if it’s not convenient to block off time for the call, could we communicate by e-mail? If that’s OK for you, I’ll send you the questions later.

    Thank you for your time. You can reach me at this email address, yinancl@163.com.

    Sincerely,
    Yinan Chen


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