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Community Corner

Derby Day

A mother talks about life with her son, who has autism.

Zach walks slowly into his school’s gym, his Cub Scout Pinewood Derby car clutched firmly in his hand.  We’ve arrived a bit early just in case there’s some irregularity with his roadster, and after all the effort he and my uncle have put into making it I’ll be damned if he’s not going to race today.  We register, then walk over to the weighing station where a kindly man eventually deems his vehicle race-ready, and I breathe a sigh of relief.

Zach says goodbye to his creation, then turns to me and asks if his father and brother are coming.  I look him in the eyes and tell him I’m not sure, but I hope so.  He shrugs his shoulders as if he doesn’t care, then runs off to find his friends. 

          The truth is, I know he does care a great deal.  My fingers are crossed that the rest of his family will be able to show.

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          Soon we are all standing for the Pledge of Alligiance, and I focus on the flag while continuing to swivel back toward the gymnasium’s doors.  Zach’s den is called to the forefront as they are first to race, and I glance behind me one more time, seeing only empty space.  I turn back and aim my camera at the top of the ramp (God forbid I should miss a photo opportunity), and just as the Cub Scout leader is finishing up the rules I feel a tug on my sleeve, feel warm breath at the nape of my neck.

          Justin and my husband have made it with a minute to spare.

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          I quickly send Jeff up to let Zach know they’re here, which elicits a squeal of joy from my youngest son.  I position Justin so he can see, and he sidles into me catty-corner, arms wrapped around my waist, eyes staring raptly at the cars waiting patiently at the top of the ramp.  Seconds later the vehicles are released and I see my son’s name in first place, and an accompanying shout of “I won!” resounding throughout the room.

Zach goes on to take first place in his den (I am ridiculously proud) and after trophies and certificates are dispensed I receive my “victory hug,” after which I feel the insistent tug of Justin’s hand in mine.  I look up at my husband as I transfer my son’s hand to his, and smile.  Today, Zach won.

          But the victory was Justin’s.  As I hug Zach one last time and admire the trophy I am certain will be prominently placed in his room I think about what it means that his sibling was here to see his accomplishment today, and send silent thanks to the universe that we pulled this off.

          It seems like only yesterday that taking Justin for a ride in a car was a struggle of Herculean proportions- hell, sometimes just taking him to a different room in our house could elicit a mind-blowing tantrum.  Eventually outings became easier until about four years ago, when my eldest decided that very few places could actually hold his interest.  Most of the time Justin is ready to leave within forty-five minutes of entering any locale, which is daunting to a family trying to do things together. 

          He’s not subtle, my son- Justin makes his wishes known by pulling us toward an exit, picking up his bag, or vocally complaining in a way in which words are not necessary.  Holidays are challenging when we travel, as toys and DVDs my eldest finds fascinating at home seem to lose their allure in anyone else’s house.

Often Jeff and I are tag-teaming for the better part of two hours just so we can eat with everyone and allow Zach to spend time with his family, which we feel is important.  Over time, and by incorporating strategies his teachers use at school, we’ve been able to convince him to stay at events a bit longer, but it’s always work.

          This is one of the things I’ve found it the hardest to adjust to- that with Justin’s severe autism, things that are supposed to be fun are often hard work.

          In just the last year since my boy hit double digits I have however seen such growth in him, witnessed a willingness to relinquish his immediate impulses and comply to our demands.  Jeff and I thought long and hard about whether or not to bring him to derby day, trying to balance both boys’ needs by making the right decision. 

The truth is even a year ago I wouldn’t even have contemplated it, would have told Zach he needed to be okay with just having his mommy there to witness his potential glory.  As usual he would have accepted my pronouncement with grace, but I know he would have been disappointed, would have liked to have his whole family there to cheer him on.

          And for once, he got his wish. 

          I’m so proud of both my boys, Zach for winning with grace and congratulating the other scouts, and Justin for tolerating an experience that in ABA terms was nothing near to reinforcing for him.  I am again reminded that we’re now in a position to take more chances, to stretch Justin out of his comfort zone, to think in a more positive way about what this family can accomplish together. 

It’s taken hard work, lots of repetition, and frankly, the simple fact of Justin’s maturation to pull this off.   But we’re here, dwelling in this place of burgeoning possibility, with our limits being slowly shattered daily.

          And thankfully, we’re here together.







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