I am a journalist. I communicate for a living. My husband is in marketing, which – no matter what you think about it – is all about communicating a message. The sermon at our wedding was about communication. We live and breathe communication.
When Deane was a baby, the focus was on his mobility. Could he roll over? Could he combat crawl? Could he support his own weight? Does he need orthotics to help keep his heels down? Could he take a step? What sort of seating device would work best? These were the questions that were front and centre when we saw therapists and doctors.
Like most babies Deane made noises – cried when he wanted something, laughed when we tickled him – so we didn’t think too much about his communication. We knew he had weak tone in his mouth and jaw because he had had trouble learning to breast feed and drink from a bottle.
I’m not sure when the penny dropped. Deane was four, maybe five. We came to the realization that there were some pretty cool wheelchairs and walkers that could help Deane get around. What dawned on us was that it would have a greater impact on Deane’s life if he couldn’t communicate his thoughts, his desires and his fears.
We had already been to speech pathologists and had binders full of painstakingly created pics (Picture Communication Symbols) on 2″ by 2″ cards that could be velcroed on to pieces of carpet or bristol board to give Deane the ability to point at what he wanted. It was rudimentary, but gave us the first glimpse into Deane’s thoughts. The problem is Deane was limited to the symbols that someone else put in front of him. From our perspective, lugging around binders and carpet was cumbersome not to mention, you seemed never to have them handy when you really needed them.
The reality is that the majority of communication with Deane is an endless game of 20 questions. He is able to say “yeah” and slightly move his head side to side to side to say “no.” It is generally easy for those of us who live with him to guess the right questions to ask. Of course, we’re not always right. When we don’t guess the right question, it can become a painfully frustrating experience for us and especially for Deane.
In a print edition of Canadian Family, I wrote about one of those experiences:
Shortly after I said good-night to my son, he started to cry.
I went into his room and asked what was the matter. But he kept crying. I sat down, gave him a big hug and held him. I asked if something had happened at school. No. On the bus? No. Was it because Daddy was out? No.
He would calm down a bit and then start crying again. He seemed inconsolable. As I was running out of ideas for what could make him so miserable, I asked about the story I had read that night. It was his little sister’s choice: Curious George and the Puppies.
“Yeah,” he said, dissolving again into tears. “Is it because you want a puppy?” I asked. “Yeah.”
This was the introduction to an article I wrote about our communication journey. It demonstrates the agony we can both go through to remind me something I already knew – that he wanted a puppy. For Deane to tell me such a simple thing, he needed me to stop thinking about all those boring adult things (dishes, laundry, bills etc.) and put myself in his shoes, in his thought process.
Most parents of disabled children do this to some extent. We know our children – their routines, their likes and dislikes and even their opinions. The speech therapists say we shouldn’t do it. We should ask questions to get them to use whatever method they have to give you a full answer.
I know that the goal is to get Deane to learn how to express his own ideas and not be dependent on any of us. So the therapists would have us push Deane to use his communication systems, to ask him to answer in a full sentences and to ignore him if he doesn’t comply.
That’s great in theory but you don’t do that with other people. Real world conversations consist of single word answers, sentence fragments and understood attitudes. Why should Deane have to go the extra mile? There is a very important place for functional – and not formal – communication.
Coming soon part 2: Voice output communication aids (VOCA). In the meantime, check out this link from a U.S. local government site to see a VOCA in use.
Sigh. This has been one of the most difficult things for us as a family to deal with as it pertains to our daughter, who is non-verbal. Frankly, we don’t know WHAT she understands, so we always assume that she understands everything, but I always feel like I’m failing her — it’s one of the most frustrating aspects of dealing with her disability for over seventeen years.
We also assume that Deane understands everything. He will react if he hears us talking about people or places he likes so we know he hears what we say. Beyond that, we don’t know but talking to my 14-year-old son like a baby is insulting to him and mind-numbing for us. Deane has developed a sign to tell us that he has a question. We still have to play 20 questions to figure who his question is for and what it is about. It has been interesting to see where he takes us with his “questions.”
Oh boy. That’s all I can say. Oh boy. That story about the puppy made me so sad. We’ve had so many instances like that. Where after a long period of detective work we’ve FINALLY figured out what Ben wanted. But sometimes we’re not able to. And I always wonder how that sits in his mind. Being silenced in a way. Unheard. It’s been 18 years for us and I still agonize because Ben cannot generate his own ideas fully with a voice device or sign. The teachers want D and I to go back to taking sign language, which may be a good idea because we don’t know enough. Re voice devices. I feel like our kids have been robbed of having easy-to-use, intuitive voice devices that use the kind of software you’d expect today in business. That the ones out there are so clunky in the way they work that a kid like mine who can usually get his point across either through sign or by showing what he wants isn’t going to put in the effort. I look back at the massive efforts we have made — with pictures, voice devices, sign — and it makes me really sad and makes me feel really apathetic, even though I know there is more inside him he can’t get out. I’ve been saying it for years, but I’m let down that the Bill Gates of the world and Apple and others haven’t dedicated their energies to this. Look forward to Part 2.