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:

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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Food for Thought

Food for Thought – November 3, 2014 Edition

So here’s the deal: I post just a few things to read each week in case you’re looking for something to read and also because I think they’re important or have moved me in some way. Sharing is caring and all that. I also understand that your time is limited and your reading list may be full. That’s totally fine.

But this week, I’m posting just two articles that left me saying, “Yes. This. Exactly. Preach sisters.” Pretty please read them.

What’s Her Name? – Tanya Marlow at She Loves.

The last time I was at that conference, I came as a speaker. I was the one at the front, and people had looked me in the eye and asked my opinion on matters of theology. This time, even people who had known me for years didn’t recognise me because I was sitting in a wheelchair, and some found it hard to meet my gaze.

False Negatives: Evaluations of Functionally “Nonverbal” Children – Dana Nieder at Uncommon Sense. Make sure you read to the punch line at the end which will leave you banging your head on your desk.

Parents, you cannot believe these numbers….

Not only will believing the numbers send you down some sort of spiral-of-terrible-feelings, but believing them will change your expectations for your child. The numbers will change what you believe your child is capable of, they will plant seeds of poisonous doubt, and they will corrode your ability to presume competence. If you have a child who doesn’t speak, one of your biggest, constant jobs in life will be to advocate for their people to believe in them . . . so if you start to lower your expectations, others will follow.

Plus, really, the numbers are garbage.

And because you took the time to do that for me, I leave you with this bonus picture. Aidan goes shopping with his class and he had to buy himself a snack. He chose well, wouldn’t you say?

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:

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:

Or go for a walk with his dad

Or shovel the driveway (whatever with child labor laws)

Or, um, operate a chainsaw?

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.