Janey's speech is a mystery to me, and to many who know her and work with her. It's hard to describe how it is. I use the term "minimally verbal", which I am not sure is an official term. Janey says a few things readily. She asks for food and TV shows by name. She asks to "snuggle on the bed" and for a shower. She says "want disc" when she wants to hear music, in any form. That's about it, for communication type talking. However, she CAN say almost anything, in echolalia form. She can recite movie or TV lines with precision and expression, for hours on end sometimes. She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to. So it's not a matter of a problem with forming words.
Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either. She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home. She has no interest in sign language. She doesn't like to point out things, or gesture. She can't hold a pencil well enough to write, and shows no interest in doing so. She isn't able to type. Overall, her communication of any kind is quite limited.
And I don't accept that well. I want her to communicate with me. I want it very much.
|This picture captures the look I'm talking about pretty well.|
What if I accepted Janey is communicating just as much as she wants to? That would be a radical thing for me to accept. But it might also be a realistic thing to do. Janey's speech has never really improved from the time of her big regression, at age 3. It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better. And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate. No matter what I've done, she communicates just about the same amount as she ever has. So what if I just decided to stop pushing her to do more communicating?
When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly. That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer. What if I respected what she's told me? What if I gave her credit for communicating just as much as she wants to? She CAN talk. She CAN use an iPad. If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it. So maybe it's time to listen to her, and stop pushing her. Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message. Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.