Standing in the Way

Aidan communicates in many ways but using words formed by his mouth is not one of them. His iPad is one of his primary tools of communication. He has long understood cause and effect and has shown intent to communicate, or he reaches out to push buttons. Buttons that say what I want them to say. His app is easy to use and allows him to participate in class and make requests at mealtime.

Here he is telling his dad what he did at school today:

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Since knowing Aidan, really knowing him, what he’s thinking, how he feels, what he needs, has been one of my greatest sources of grief, I’ve always felt a bit uneasy about putting words in his mouth, or limiting what he can say.

I’ve had my eye on a different speech app for Aidan for quite some time. It makes sense to me. All of the words stay in the same place, just like the keyboard I’m typing on, so the body and brain remember where they are. It comes chalk full of words already so I don’t have to choose words for Aidan. But it also leaves space to program new words that might be special or specific to him, like the names of our family.

It makes sense to me. It was half price last spring and I almost bought it so I could learn how to use it and possibly introduce it to Aidan.

Almost.

But I didn’t because in the end I thought it would be too complicated for Aidan. There are just so many words and it might be hard to learn. The buttons are so small and it could be a challenge since Aidan already has fine motor issues.

Do you know what else is complicated and requires complex cognitive function and decent motor skills?

Driving a power wheelchair.

When Aidan first tried a power chair, he clearly understood that he was operating it. However, he had to figure out how to steer it so he wouldn’t bump into walls and run over his friends. It took time to learn. Of course it did.

He drove it for three months before we had to make a purchasing decision. I came very close to NOT choosing a power chair because, though he was learning, I wasn’t convinced he could master it.

I shiver even as I type this.

Aidan drives his chair like a boss. He goes in and out of small spaces without a scratch (mostly). He follows his teachers’ directions (sometimes) when it’s time to change classrooms. It gives him the independence he deserves. His chair allows him to participate in his community and even communicate about where he wants to go.

Without it he couldn’t explore at the beach:IMG_3563

Or go for a walk with his dad

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Or shovel the driveway (whatever with child labor laws)IMG_6509

Or, um, operate a chainsaw?

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I was almost a stumbling block to all of that freedom and adventure because I didn’t believe in my son. Because I almost didn’t have the patience to watch him learn.

Everything with Aidan just takes so much time and effort and belief and energy. I want instant gratification probably more than he does. But I’ve seen how work pays off.

So I won’t stand in the way again.

I bought Speak for Yourself last week. It will take time for both Aidan and I to learn it. Of course it will. Like driving into walls, he may miss the buttons at first. Like steering in big open spaces, he’ll have the chance to press lots of words that make no sense. Like being redirected when driving too close to someone, he’ll have pay attention while I show him where specific words are located.

It’s a process and I have no idea how long it will take to make any strides at all. But I know that Aidan is smart and I believe in him.

I’ve been surprised before and it changed all of our lives.

Food for Thought

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Food for Thought – October 21, 2014 Edition

To Siri, With Love - In the New York Times. If you read nothing else this week, read this.

Gus: “You’re a really nice computer.”

Siri: “It’s nice to be appreciated.”

Gus: “You are always asking if you can help me. Is there anything you want?”

Siri: “Thank you, but I have very few wants.”

Gus: “O.K.! Well, good night!”

Siri: “Ah, it’s 5:06 p.m.”

Gus: “Oh sorry, I mean, goodbye.”

Siri: “See you later!”

Maybe if You Ask Me – What Color is Monday

I need you to see him. I need you to help me bring the pieces on the board to life so I don’t reduce him to a match of gains and losses, forward steps and backward slides. He’s talking he’s talking now he’s stopped sleeping he’s riding the big bus but he always sits alone he decided to wear a costume only he wants to dress up as a woman.

What I Want to Say Isn’t There – Independent Living Centre

If you could be doing anything you’d like right now, anything other than sitting here reading this blog post, what would you like to do? Ponder that thought. Pick something. Anything. Now scroll down….

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So what have you been reading this week?

Night Rider

Aidan drove in the dark the other night.

Fast.

With wild abandon.

Garreth and Aidan had just picked Liam up from a school event and instead of heading inside for bed, Garreth decided to let Aidan roam. Aidan looked back once as if to say, “Are you sure you’re ok with this because I’m not afraid to hightail it outta here?”

Garreth stayed close for safety, of course, but always out of Aidan’s line of vision to let him feel alone.

Much giggling ensued.

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Sometimes I feel like I’m driving in the dark on Aidan’s medical journey. I’m a researcher and a note-taker and question asker so I don’t quite drive with wild abandon. Sometimes I have to work hard to shed myself of guilt. I give medical decisions the weight they deserve.  The darkness is less fear these days and more wondering. What’s out there and where exactly are we going and who will we meet along the way?

There is also, if not outright giggling, then at least deep gratitude. It may seem weird to others what makes me happy. I’m very excited to be on the cutting edge of science and to have if not a name than at least a gene to possibly explain Aidan’s medical issues. Something big is happening here. I’m incredibly grateful that our orthopedic surgeries are behind us and Aidan is using his new body well. I’ve learned that my marriage has a sweet spot and it’s during a medical challenge. Strange, I know, but I’ll take it.

And when I think about Aidan’s mobility, well, there probably is no greater joy for me than that. Damn that kid is smart. I believe there is a game of flashlight tag in our very near future.

And the laughter will be contagious.