Speech Update

Aidan has been using his Speak for Yourself App with keyguard for two weeks now. We went into this knowing that Aidan understands cause and effect, can isolate his pointer finger and shows intention to communicate.

To get Aidan started, we’ve used his most motivating activity. Can you guess what that is?

Yes, driving. We’re using a core word (on) in a totally functional way. He actually needs someone to turn his wheelchair on.

Check out this video:

This is what the screen looks like to him:

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Notice that he takes my hand at the beginning. That’s intention. He’s using my hand to stabilize his. I did help him touch the button once he got close to it. We’re in the learning phase.

Aidan’s other hugely motivational activity is eating. Here is what I love about this video. Aidan clearly didn’t want a drink so he goes back to ask for more. He’s learning to distinguish. Check out the video:

He’s so smart. I knew that. So glad I didn’t stand in his way.

In other news, Grover digs AAC too.

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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.

It’s Just About Getting the Words

“It’s just about getting the words,” my chorus director said. She had 200 deer in the headlights faces looking at her as we were attempting to learn a new piece of music. We were singing in an unfamiliar African language. For the most part we had the tempo and tune. That was actually enough to covey that it was a joyful song. But about what exactly?

I think about all of the ways Aidan communicates – facial expressions, gestures, vocalizations, eye gaze, driving his wheelchair. Because Aidan is non-verbal and has had limited success with AAC (Augmentative and Alternative Communication), I pay closer attention to him. I do a lot of guess work and deduction. I have a good idea when he’s happy and sad and in pain and frustrated and tired and joyful. But about what exactly?

“It’s just about getting the words,” my chorus director said. She was excited when she spoke. It was clear that the tempo and tune counted for something; an important part of the music was already spilling over without words. My director also has confident expectation that we will learn the words before our concert. Through modeling and repetition she has committed herself to helping us learn them.

“It’s just about getting the words.” I’m not even sure her comment would have struck me had I not been at the end of a long day without my own words. In another small attempt to see the world through Aidan’s eyes, I chose to be non-verbal for the day. I was both thankful that there are many other ways to communicate and frustrated that they are so limiting.

“It’s just about getting the words.” I want the rest to be enough; I want Aidan to be fully heard and understood without them; I want others to take time to listen to what is not being said.

“It’s just about getting the words.” But sometimes that is everything.

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Video – Not of my group but this is one of the songs we’re learning. Check out how many levels of communication are involved.

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I will be writing more about my day of not speaking. In the meantime, check out this mom who was braver, better prepared, and more articulate than I and gave up her voice for a week.