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.

13 thoughts on “What can’t be said

  1. Orli D

    I’ve been thinking of how to say that and keep you liking me, but then I figured – we haven’t met yet, you can not-like me already so I’ll just say it – I think you’re SALT advisor is rushing. I mean of course I might be wrong, and I am usually the first to believe doctors and such, but I also know that some advisors, they love the gloom and doom. Nothing is set in stone yet, he is still so young, you managed to get him to do so many things you didn’t think you or he could, you’ve just started working with him on this issue, and so I think she’s rushing. My kids didn’t know what a helicopter was, what a tractor was (for some reason very important in Israel) and Ron was a late talker. So? The first time I went with Ron to a hearing test the tester couldn’t make him move his head towards the sound. Not because he didn’t hear but because there was an interesting painting on the wall. I left the room with a fat and deaf baby. I did not go back. Don’t despair yet. In my opinion (and really you don’t have to take it, because what do I know, and even I usually hate other people’s opinions) – You don’t have to envision a life with no speech yet. x

    1. mrboosmum Post author

      Thanks, lovely. I feel this must be right, too. He is still so young. And yes, he has cerebral palsy and yes that can manifest itself in the ways she is envisaging, but there must be lots we can still to help him while he’s still young. I will try to hold off the despair. Like you say, he’s doing things that 12 months ago we thought would never happen.

  2. amy

    It sounds very premature of your SALT to be making such judgements or possibly that her own parent communication needs some work! I guess it is good they are proactive in trying to enhance communication, but it sounds like they are not looking at the real Boo but making a lot of presumptions based on diagnosis or other areas of development. Understanding is such a massive area of speech it actually sounds very positive. When we started signing, it actually was as much as trying to develop Alice’s fine motor skills as the signing itself. It turned out to be so useful-when aged 2+ she did start trying to speak it was so jumbled we needed signing to translate and also I do think constantly having to use her hands was useful from a skill point of view! With us, around her third birthday she made a huge leap in speech but it was very up and down until then. Now she doesn’t shut up and there is a running commentary on EVERYTHING. I would never have envisaged it even a year ago. It sounds like you are doing all the right things, and Boo will work out his own way no doubt. x

    1. mrboosmum Post author

      Thanks so much for this. I think you’re right. I don’t mind hearing the worst case scenario – Lord knows we’ve had lots of that since Boo’s birth – but he’s too young to write off, surely. I’m struggling with the signing because Boo’s arm/hand function is not great (they’re the bits of him most affected by the CP) but they can’t hurt. He has never shown any interest in TV/DVDs at all (not that I’ve tried him much) but I did watch about 10 minutes of Something Special with him last night and he went crazy. So maybe there’s something to work with there too.

      I am always inspired by Alice”s progress. And it is lovely to hear from you. I hope you’re both doing well. xx

  3. Giggler's Mum

    Have you tried apps that respond to & echo sound? We used one with Giggler & his friend called Talking Ginger cat – the cartoon cat miaows & if you make a noise make it repeats your noise in a funny cat voice. If you giggle, cat giggles back.

  4. Joanna

    I am not qualified in this area but did accidentally do some work in it. My suggestion might be something you could discuss with an actual professional or just ignore it! Sometimes working the mouth muscles helps in speech therapy, e.g.blowing a whisle to get the sound, through a straw to make bubbles in liquid, through a child’s toy trumpet to get a sound with more force, etc. The reason it helps is that often the muscles that are needed to form sounds verbally are not fit enough to help the mouth form the right shapes and push out the right sounds.

    1. mrboosmum Post author

      This is great advice. Thanks so much. Our speech and language therapist has suggested a particular cup with a straw to get him to drink out of for precisely this reason, but it’s not going too well.You can pull the straw out with your teeth and so he thinks that’s a fun game. But I hadn’t thought about blowing. I have whistles and recorders, I’m sure. And bubbles. I’ll dig them out. Thank you.

      1. Joanna

        Over Xmas when you have loads of Roses wrappers left you can make a game of blowing them with straws across a table.

  5. Jen

    I don’t know much about this area, but as a mum, I think your instinct is right. It is FAR too early to assume he’ll never speak! He already IS speaking!
    I do know that Makaton is AWESOME! I used it with my boys when they were tiny, to communicate with them before they developed speech. My 5yo was signing ‘milk, yes, no, bird, train, plane’ before he said a word!
    At work, they use Makaton with the special school pupils, and I see pupils with very little speech communicate brilliantly. The key with Makaton is YOU never stop talking whilst you sign. Boo may not verbalise to start with, but when he does, the signs will help you understand. It’s not as fiddley as BSL, and you and Boo can develop your own signs/versions of signs that he can manage. Just don’t stop talking! If you don’t give up, he won’t either. Have lots of fun with sounds and signs.
    Good luck. Xxx

    1. mrboosmum Post author

      Thanks so much. This is really encouraging. I have a bit of a mental block about Makaton. I know a few signs and use them, but I worry that because his arm/hand function is not great, it’s not much use to him since he can’t do them back. But of course, you’re right. He could adapt them. I’m still optimistic about his speech emerging at this point, even if I’m also worried. Thanks so much!

  6. steevbeed

    My son is 14 and has never spoken a word, the speech therapists who warned us this may be the case were right to prepare us for this possibility.
    However….he does communicate. His Makaton is imprecise, but he rarely stops talking with it. Once he got the hang of using it to swap information there was no stopping him.
    When Boo finds his chosen form of communication you will be rushing to catch up. It is different but beautiful.

    1. mrboosmum Post author

      Thank you so much for this wonderful comment. I’m afraid for some reason WordPress put this in my spam folder and I have only just seen it. I’m so delighted to hear about your son’s communication skills. I am starting to learn Makaton myself now, too.


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