So Tell Me What You Want What You Really Really Want
I have a lot to say so grab your coffee and settle in. Actually, Aidan has a lot to say and I think you’ll want to hear it.
First, I wasn’t entirely sure how successful Aidan would be with the Speak for Yourself app when he started using it just four months ago. With the buttons being so small I saw two challenges for Aidan. First, his fine motor skills are less than stellar. Sure he has a pointer but it’s not well formed and he sometimes needs to be reminded not to knock or hit his ipad. Second, he’s never been very visually attentive to the ipad. He just doesn’t look at it for very long.
Even though I completely bought in to the idea of motor planning for a talker (all the words stay in the same place just like your qwerty keyboard) and I earnestly watched Maya’s progress and celebrated (go read Dana’s blog now if you’re in any way part of AAC world), I still hesitated. Sure Maya could do it, but Aidan is too...disabled. There, I said it. I’m saying it because I know there are people saying, good for you but not my kid.
Here’s where I’m giving myself tons and tons of grace. I’ve learned that I can only make the decisions I can make at any given time. I wish I didn’t get Aidan a pimped out stroller when he was five and instead got him his first set of wheels. I just wasn’t ready. I wish, oh gosh I wish, I had gotten this talker when it first came out a few years ago, but I just wasn’t ready.
Here’s what I’ve learned about Aidan’s success. First, what greater motivation is there to get his little pointer finger working than communication? I’ve seen great improvement and tremendous effort on his part to isolate his index finger. Second, Aidan is a visual scanner. He does this with driving as well. It’s somewhat disconcerting but when he backs up, he really knows what’s behind him even though he’s not looking. Now he just glances at the talker and knows what’s where. Also, he relies heavily on auditory output. If he touches the wrong button and it doesn’t say what he intended, he’ll go back and correct himself.
Ok, so here’s all the amazing stuff you’ve been missing if you haven’t been following me on Facebook (obviously you should be doing that). Aidan has been having such great success that I can’t help but add words to his talker. I added the word BATHROOM and started modeling it, just pressing it when I would normally use the word. It’s a word that’s behind a word so I thought it might be challenging for him.
Here was our conversation after just three days of having that word available (ALL CAPS indicated word spoken with talker):
Aidan: EAT TOAST
Me: Are you kidding me? You just had a huge dinner and dessert. (ok, slightly exasperated) Do you really want toast?
Aidan: NO. BATHROOM
Off to the bathroom he went and he really needed the bathroom. So, he used a new word after just three days of being exposed to it and he answered my question and he corrected himself.
Are you duly impressed yet because there’s more. I added the word WANT just to give him the building blocks of sentences, because who knows. Now all of my prompts start with a Spice Girls song, “So tell me what you want what you really really want….” I got excited and started modeling the word PLEASE as well. It had actually been open for awhile but we didn’t use it because, I don’t know, we’re jerks. So today for lunch he very consistently and very precisely started saying CRACKER PLEASE. I upped the ante. “Aidan, you can tell me you WANT the CRACKER PLEASE.” So he did. He’s building sentences.
Did you catch that? My non-verbal child is building sentences.
This is the other aspect of Speak for Yourself that I love but thought would also be a challenge – each word has it’s own button. No more of the one button one complete sentence of my choosing business. He’s going to have to work for it now. And he is. Maybe at some point he’ll tell me he wants to throw the cracker or that it’s gross or maybe he’ll even tell me where to shove it. They’ll be his words and I’ll welcome them all.
And now your living proof:
This is a screen shot of Aidan’s talker at the moment. The word BATHROOM is behind the word IN and CRACKER is behind EAT so you can’t see them on this page. The black indicates spaces where words have not been opened yet:
This first video is him clarifying what he wants because he pushed both WALK and DRIVE (also my bed head is brought to you by 87gazillion snow days so whatever)
This video shows you that mistakes are part of learning. He pushes TIME because it’s near PLEASE. Garreth helps him get to PLEASE.
This video shows him almost making a sentence. Note how close WANT and MORE are and how hard he works to get it right. Also, bonus points if you can spot the seizure. I’m including it so you can see both that seizures can be difficult to diagnose and even though they seem innocuous, they can steal steal your words.
Not sure how to wrap this up because I’m too stunned with gratitude and hope. Any questions?