Tuesday, September 27, 2016

Things only a parent of a child with disability would notice


This video of Ben laughing has been making me laugh for days. Sabrina was entertaining him by dropping ice cubes on the floor. Every single time I watch it, I get a lift. I actually watched it several times in the midst of the debate last night when my blood pressure shot up. 


Besides Ben's hearty and infectious chuckle, I also adore how nice and relaxed his hands are. This isn't something most people would notice, unless you've had a child whose hands were usually clenched as a baby, as Max's were. It totally panicked me and Dave, since we knew the tightness was a sign of cerebral palsy.

Max was likely going to have CP because of the stroke he'd had at birth but still, Dave and I were in between denial and pure terror. When we'd go to a mall, we'd stare at other babies passing by in their strollers and stare at their hands. Whenever we'd spot one whose hands were closed, one of us would excitedly point it out. In our minds, it meant that maybe Max wasn't doing so badly after all and that other babies were going through the same thing.

In our hearts, though, we knew that Max's hands weren't at all like other babies' even though they looked just as deliciously pudgy and dimpled. Mostly his hands were fisted, even as he neared a year old. It made grasping toys and finger foods hard or impossible for him. He couldn't put objects into his mouth, one way babies explore the world around them. Even when Max started crawling, we didn't have to babyproof very stringently because there was no danger that Max would swallow errant objects; he didn't have the fine-motor skills to grab them.

And so, I've marveled at Ben's hands. They seem miraculous. We do not need an occupational therapist to show me how to unclench and massage fingers, and to rub the tight area between the thumb and forefinger. We do not need an occupational therapist to help the baby pick up a ball, a spoon, a block. We do not need an occupational therapist to show the baby how to press a button.

What's strange to me about these thoughts is how much of a disconnect they are from the awesomeness of Max, and how much I revere this boy. I don't sit around thinking that I wish he didn't have challenges with his hands or otherwise—I accept him for who he is. I typically don't sit around wishing he didn't have cerebral palsy, although there are times when I curse it. But we went through a certain hell during the first year of his life, and I don't think I will ever fully get past it. Having Ben is bringing back a lot of those memories, and it makes me grateful that Ben is developing as he should.

Ben is really expressive with his hands. He has a way of wriggling them around when he is excited about something, especially when he's eating.

We call them "happy hands" and when he twirls them, I feel really happy, too.

 

13 comments:

  1. I notice language and communication skills in little ones - just the simple waving hi and bye. I love to be able to smile and think that language-wise things are starting out great for the little one. Last night at OT a little 1-year-old was playing toss the ball with me. Loved it. Never had it with my guy.

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    1. I notice the babbling, too. All the b's and d's and ma-ma-mas I never heard.

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  2. yeah I understand clenched hands ive had my right hand clenched all my life

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    1. Have you ever done Botox? Max has had that several times, it's been effective.

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  3. I hope his hands don't get too relaxed to the point where he gets trigger fingers and nerve pain.

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    1. Ah, I don't think there's any danger of that. His hands are more relaxed now, and they can function—especially when he focuses—but they are not completely so.

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  4. Thank you for sharing this. We just went through two months of autism testing and doc visits and therapy and it was painful. One person says one thing, another says another...everyone wants to fix my boy and I don't see anything wrong with him. Anyway, no diagnoses at one, and we are going to let him be him.

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    1. That is a good special needs parents bumper sticker: "Let him be him." Always trust your instincts. Max wasn't diagnosed officially till he was 2. Still, no matter what the label, we have always just treated the symptoms.

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    2. I have a 3-year-old with autism. As you implied - there is nothing to fix. If he does or doesn't have at this point really doesn't matter. If he is having problems such as language or sensory, then you can explore therapy through your state's early intervention (birth to 3) program. If your school district has a Parents as Teachers program, this is a good thing to get involved with. It is a low commitment type of thing.

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    3. I have a 13-year old! (can't type this morning!)

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  5. Oh that video is adorable! And isn't it funny how we look to other babies to "prove" somehow that maybe nothing's actually going on with our own? I used to be blown away when kids my son's age were talking and always felt relief when I saw a kid who was as quiet as he was (which wasn't very often). Watching Ben laugh during the debate was a BRILLIANT idea!

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    1. Hey, Kristi! Yes, so funny. It was a relief when I was finally able to stop comparing Max to other kids. It was nothing I did—it just happened.

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Thanks for sharing!



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