Speak for Yourself

I took a pretty big step today. My 5 year old daughter Ruby has Childhood Apraxia of Speech, which I think of as the most challenging element of her global apraxia, a developmental impairment that makes motor planning and coordination of movement very difficult. There’s a lot I mean to say here about apraxia and about Ruby’s special needs, but for right now– It came as no surprise that Ruby would have a very hard time speaking. She had a very hard time learning to crawl and walk, and it’s always seemed that physically, nothing came naturally to her. For quite a while as a toddler she didn’t know how to sit down. Now she is comfortable on her feet but the physical complexity of speaking has left her with very little expressive language: This is Childhood Apraxia of Speech.

Ruby has done a lot of speech therapy ever since she was 18 months old. In the last year, and particularly the last 6 months, she’s made progress that makes me excited and hopeful. She’s gone from saying single words to request something, to saying “I want juice,” etc, to putting together meaningful novel phrases such as, most recently, “Excuse me, feet coming!” (This as she steps carefully out of the bath.) Still, her ability to express herself by speaking is very limited, particularly with people who are not used to hearing what her words sound like, and I know there is stuff going on in her head that she cannot share. She uses a bit of ASL and quite a lot of gesturing and miming.

Augmentative and Alternative Communication has been on the table for a while, but it wasn’t until this summer that I felt like she was organized enough and directed enough for it to help her. I had imagined that learning another system to communicate, separate from speech which she was working so hard on, or ASL which was fun for her, would be frustrating and distracting and likely to fail.

After reading a book called Schuyler’s Monster, written by the father of a little girl who also had a severe speech and language disorder and started using an AAC device at around Ruby’s age, and seeing Ruby begin to try to tell stories (that  is, report on something she had done by pointing, using words, and showing– rather than just describing the here and now and what she wants to eat), I was convinced it was time to try. I spent a few slow months waiting on an evaluation by an SLP who specializes in adaptive communication, and then rented a device for a 4 week trial.

In the days before the very expensive PRC device that I had selected to rent (because I had read that the language system it uses is more complex, teaches proper grammar, and basically is better than AAC apps for iPADs) arrived, I was freaking out because I was studying for my Certified Neuroscience Registered Nurse Exam. I was leaning hard on my brand-new husband for childcare, the domestic practices I had joyfully adopted during the first month of our new life in Brooklyn had disappeared, we were eating pizza and inferior Chinese take out all the time, and I had no patience for getting Ruby to dress herself or brush her teeth. So– bad timing, the trial seemed bound to fail and that’s my fault. My mother brilliantly suggested that I contact the company and ask them to delay delivering the device til after my test, but it was already en route, to be delivered that day.

Ruby certainly didn’t take to the device on her own, but I had never expected that she would. Quite honestly I know that I didn’t put in the necessary time and effort to give it a fair trial, but we did have frustrating moments with it. The main problem was that I never got her to use the device to say something that she couldn’t say with her mouth, so she didn’t see the point of it, and neither did I. I know there’s more in her mind than the words she can say, but maybe a lot of those ideas aren’t quite on the tip of her tongue.

So, for example, when I’d finally gotten her attention directed to the device, she said, “I want stroller,” and she watched as I told her great, stroller, let’s say stroller, and then I looked for the word stroller, and she repeated, perfectly clearly to me, “I want stroller,” and then she went off to play with her dolly stroller while I became annoyed to discover that the programmer, who’d come over to set it up for us, hadn’t enabled the word “stroller.”

Similarly, when Ruby very patiently asked for “skirt,” using both her mouth and ASL, and watched her mom fiddle with the box instead of going to the drawer and getting her a skirt to wear, I found that the only clothing he’d enabled was shoes.

So of course, I unlocked the device and tried to play around with the settings, to get more words, and wound up freezing it for a few days…

I shipped it back to the company with a relieved sigh and a guilty shrug. Ruby’s doing really well with speech these days, and I figured we could keep working on what we’re working on and perhaps try again later.

Then I stumbled upon this blog, Uncommon Sense, about another little girl with apraxia who has an admirably with-it and devoted mom, and I learned about this app, Speak for Yourself, which uses the principles of motor planning and true language development just as PRC does, and can be had for $200.

So I just went ahead and did it. Today I bought Ruby an iPAD, and downloaded the app (and this is progress in more ways than one– did you read that bit about my being an accidental Luddite?). I’ll be able to select the words that are available myself. I’m not going to present it to Ruby until I get a keyguard, which is made specially for the app (so that little fingers don’t touch buttons accidentally), and an appropriate case. But hopefully there will be much more to say about our foray into the land of AAC.