Monday, December 1, 2014

Why today is Thanksgiving Day, too


Thanksgiving this year was significant not just because of the amount of sweet potato pie that Max consumed (approximately one-third of the casserole dish) but because he stayed at the table for the entire meal. This was the first time he'd done that.

I'd decided, years ago, that I was fine with Max hanging out in another room while our family ate. That was how he felt comfortable; the din of conversation was too much for him. Dave or I would bring a plate of food to him and help him eat.

This year, though, Max came to the table when everyone else did. As Dave said, "He not only sat, he wanted to sit." He talked about his upcoming firefighter-themed birthday party and joy trip to Chicago with Dave in March. He fed himself (well, mostly, because when he sits next to Marshmallow Daddy he figures Dave will feed him). He laughed at jokes. He was fully present. (Along with the Fire Chief hat, of course.)

"He's articulating words so beautifully," my mom told me afterward. Her compliments about Max always bliss me out, because she's not one to dole out meaningless props.

When Max was little, and we were in the thick of his sensory issues, it seemed like things would always be that way. It was impossible to envision a life in which tears, meltdowns, sitting at tables for any significant stretch of time, mingling with other people, doing errands with him and participating in activities would ever be possible. Ghosts of Thanksgiving pasts appeared as I sat at the table Thursday night. I pictured how I'd regularly excuse myself to peek in on Max sitting on the couch in our family room, alone, watching Disney Jr. I felt sad for all of us.

Over the years, people have told us that Max would "grow out" of his sensory issues. I fully realize they only wanted to make us feel better but the truth is that, like Max's cerebral palsy, the sensory stuff wasn't something we could ameliorate. It's part of his neurological makeup. The best we could do was work around his sensitivities, use noise-blocking headphones, generally try to keep his surroundings calm, stay home at lot with him—and accept that this was the way it was. That finally happened a few years ago, when I realized that if Max was perfectly content to watch TV, away from the crowd, I needed to be OK with that, too.

One of the biggest challenges of special needs parenting is acceptance, and there is a whole lot of it. There's accepting, in the beginning, that this isn't the child you expected. There's accepting your child's unique challenges, accepting that your life is not like your friends' lives, accepting that whatever your child needs to enable him and keep him content is perfectly fine (see: Fire Chief hat), accepting all the extra effort your child requires, accepting how emotionally draining it can be and that there's no shame in sobfests, accepting that your child is on his own timeline and nobody else's.

Acceptance arrives in bits and pieces. Sometimes it just doesn't. Sometimes it's a work in progress. And it is is all sorts of amazing to have more or less accepted a particular challenge or situation with your child—and then have him get past it.

Max still has his sensory moments. Like an infant, he startles at unexpected loud noises. Busy restaurants can unnerve him. He still needs to be coaxed and cajoled into places he's never been, such as museums. He has this high-pitched screech he lets out when he is freaked that could likely be heard in galaxies near and far. But he is now able to push past many disturbances that used to unravel him in the past.

Dave and I know just how hard-won that is. Yesterday, Dave took Max to Home Depot to get an extension plug and when he came home he said, "Max was amazing! We walked in together, we got the plug, we left. It was that easy. Who is this kid?!" I don't think we will ever take Max's holiday table presence for granted. A few times, I caught Dave's eye on Thanksgiving night and I knew just what he was thinking: Can you believe it?

I'm still giddy about that dinner. And so, today is Thanksgiving, too.

11 comments:

  1. Good for you Max! May Hanukah go as well.

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    1. There's no big dinner and there are lots of presents so I suspect it will!

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  2. Max has graduated to the big boy table. Yay Max :) PS. I startle too it used to bother me it doesn't anymore.

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  3. I still have sensory issues with food. My sound issues have decreased, but they are still there. I try not to let them get to me, but they are still there.

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    1. So do I. I have SPD plus hearing loss and wear a hearing aid so loud noises are even louder and more disruptive. Yeah one teen to another I get you. And the last line is totally something I would say. :)

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  4. This brightened my whole morning. Thanks for sharing this huge triumph, Ellen and way to go Max!!

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  5. Way to go Fireman Max! You rock, dude!

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Thanks for sharing!



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