Tag Archives: PECS

What can’t be said

There are all sorts of things I never thought would happen to me. At the age of 15, when I overwore my contact lenses out of sheer vanity to the extent that I gave myself an eye ulcer, I never thought I would ever wear glasses in public. (Oh to be 15 again…) I never thought I’d get excited about a condensation remover or a steam cleaner, although i did just that at a friend’s house yesterday. I don’t think I ever thought I’d have two kids, if I’m honest. And when I did start to imagine that that might be possible, I never thought they’d be so beautiful or so funny.

I certainly never thought, after having one healthy, term baby that I would have a little boy at 29 weeks gestation. I never imagined that he nearly wouldn’t make it. I never imagined myself with a disabled child. Now, of course, I can’t imagine my life without him and all the joy and worry he brings. And I contemplate without fear all sorts of things I couldn’t bear to consider just a few months ago: that he might need a wheelchair or that he might not be able to attend mainstream school, for example. Of course, I would love him to be able to walk. I would love it if he could attend his sister’s infant school. But mostly, I just want him to have a life that is safe and exciting and that lets him grasp every opportunity to achieve his hopes, dreams and his potential, whatever those things are. Of course, he can do these things in a wheelchair and having attended a non-mainstream school.

But there are still some things I don’t like to contemplate and one I have had to face head on in recent weeks: Boo might never talk.

This is something that, honestly, had never occurred to me before we started Speech and Language Therapy in September. But his therapist wants us to be prepared for all eventualities. And she has talked to me a lot about communication devices, learning Makaton (not easy with Boo’s hand function as it is) and PECS. She has mapped out a non-verbal future for Boo, with communication frustration and behavioural problems, and I don’t like it at all. I feel as if a little piece of me has died.

You see, words are so important to me. I am a great talker and writer and when I’m not talking and writing I spend hours analysing the conversation and writing of others. When Sissyboo was young, I longed for the day that she could speak. Now, she rarely stops, and while this can be frustrating when you are trying to get her to do something other than talk (like eat, drink, go to the loo or brush her teeth), I never want to shush her. I will never tire of hearing her beautiful voice.

It never occurred to me this might not be possible with Boo? That we wouldn’t be able to talk like I talk with his sister

Why, I keep thinking? Why didn’t I entertain this possibility (no matter how unwelcome it might be)?. Well, a bunch of reasons, I think. First of all, he’s still so young. At 20.5 months actual, Boo is still only 18 months old. And although he hasn’t got a conventional babble he has had a range of sounds and vocalisations for months and months now. His sister was a talker from an early age, but lots of children his age aren’t reciting the Gettysburg Address, are they? Boo is a noisy bear and he has odd words: he says ‘egg’, in homage to his favourite Fisher Price toy; ‘dadda’, although this comes and goes and a version of his sister’s name. He isn’t totally consistent in his use of these words, but they are there.

And I suppose I haven’t worried about his speech much because I don’t feel I ever don’t know what he needs or wants. He smiles for ‘yes’ and turns his head for ‘no’. And he understands everything I say to him. I’m sure of it. If you ask if he wants a book, he looks where his books are. If you ask if he wants milk, he looks at the microwave for it to be heated. If you say the names of family members his ears prick up and his face lights up. He knows what’s going on even if, as I wrote on the blog the other day, he doesn’t know what a helicopter is (an occupational hazard of playing with physio- and sensory-friendly toys that a little boy with a four-limb motor disorder can hold).

I don’t want to dismiss the therapist’s concerns. Far from it. I have really taken them to heart in the last few weeks and have been quite depressed at the thought that I have failed him in spending so much time on physical therapies that I have neglected his cognitive development, although I read to him every day and speak to him constantly.

But I am not giving in on this. Us Boos don’t, as a rule. And we may be down, but we’re not out yet. I am prepared to accept now that a non-verbal future may await Boo and I am starting to learn more about what that might be like and how other parents support their children in communication when speech is challenging. But I am also trying to incorporate as much speech therapy into the day-to-day, bearing in mind all his other therapies and appointments and the fact that a day is inconveniently short at just 24 hours. (Sleep is such a nuisance, don’t you think?)

So here are some things we’re doing as well as reading to him:

1) working towards a communication board. We use laminated cards with symbols for yes and no on and several times a day ask Boo to make choices of the cards to communicate sentiments to us. This seems to be going well. The next step is to think of other things we want him to be able to communicate (drink/more etc.) to make a bigger board.

2) using various iPad apps to communicate understanding of where certain objects are etc.

3) using flashcards to broaden his vocabulary (yes, I will have to get a helicopter one) and to get him to demonstrate one-word cognition when showed three pictures

4) singing songs and pausing before the last word of a line to encourage him to join in (a favourite routine of his conductive education sessions, although one more liable to instigate giggles from him than actual words).

5) talking, talking, talking

Is this enough? I don’t know. But it’s a start.

I’ll let you know how Boo progresses in his communication on the blog. But in the meantime, I would be very pleased to hear from any of you about any tips or tricks you have to encourage your child’s speech if they have additional needs. This is an area I feel I have at least as much to learn about as Boo himself.

Advertisements