Tag Archives: speech and language

The Word You Long to Hear

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Anyone who reads this blog regularly will know that SALT has left a bit of a bitter taste in our mouth at times. Boo was first referred for Speech and Language Therapy in January 2013 aged only 9 months. That’s rather early, you might think, but the consultant knew only too well how long the waiting lists were. And then there were the brain scans. It was almost inconceivable looking at all the little black dots where there should be white matter on Boo’s CT images that he wouldn’t have speech problems and early intervention, as in all things, promises the best outcomes.

But nothing is straightforward is it? First of all, we got put on the wrong waiting list in error. When I received a letter saying I would be given a parenting class – as clearly I didn’t know what I was doing – to teach my child how to speak at some point in the next 12 months (but not until then as his age meant he wasn’t a priority) I sobbed for 30 minutes before phoning the consultant who realised we’d been put on the wrong list and got us put on the right one.

And then in late September 2013 we met his speech therapist. She is lovely. But it has taken her a while to get to know Boo and us. Many of the things she asked him to do involved complex physical skills, such as sitting on the floor and picking up and posting objects – ‘He has quadripledgic CP and has limited voluntary arm movement’, I screamed internally – and they used up all his concentration. For the first 3 meetings, he barely said a thing. He was working too hard in the wrong ways.

The upshot of all this was that I felt that she, along with the consultant who can’t be named and we only have to see once more (thank God) before being discharged from his prematurity clinic, had written Boo off in the speaking stakes. All of the nameless consultant’s grimmest pronouncements, that Boo wouldn’t be able to do ‘much at all in life’, that he would be ‘immobile’ and non-verbal rang around my head. I dreaded SALT appointments.

But we did our homework anyway, because we’re good like that (and I like to prove people wrong). I even bought a laminator and registered for the TES website, where I have found lots of helpful resources like flashcards and so forth. I have coloured in phonics cards in the middle of the night. I have made exaggerated facial movements and animal sounds in the mirror until my face hurt. I have learned bits of makaton, despite knowing Boo is unlikely to be able to move his arms with sufficient dexterity to sign back at me.

At times, I have been so sad about it all. So sad that I might never be able to have a conventional conversation with my son. I wrote a post about it at my lowest point, and was really buoyed by the kindness and wisdom of blog readers, who reminded me that there is more than one way to communicate. And I knew this, of course. I never feel like I don’t know what Boo wants or needs. He tells me in various ways and his sister, his dad and I know how to read those signs.

But there were the noises, too. I just found it difficult to believe that Boo wouldn’t ever speak at all, although I am quite prepared to believe that speech won’t come easily to him and that his speech will probably never be entirely distinct. You see, he has always vocalised. A lot. He has an impressive range of sounds – m, n, oof, an, ug, ag, w, y, I could go on and on… And he has had some words for some time: ‘dad’, ‘hiya’, ‘yeah’ and a version of his sister’s name for starters.

I found it so frustrating that people weren’t hearing me when I said that he could speak, if only a bit and with difficulty. But as the months have gone on, we have all (including me) come to understand a lot more about Boo and what he can and what he struggles to do. He learned to use a straw in a matter of weeks (this has helped enormously with his speech development). He has been given endless flashcards to look at and had to prove he can find named objects from a choice of 2. (Where’s the ball when showing a card with a ball and a card with a doll on, for instance.) When he had that down pat (which he did very quickly) we moved to asking him to make choices from 3 or 4 objects (find the ball while also showing him a doll, a teddy and drum) and we introduced a simple communication board with 4 activities on so he had to choose what he wanted to do next by looking and pointing at the appropriate symbol and confirming with his now totally reliable ‘yeah’ that that’s what he wanted to do. He proved through all this that he could understand symbols and language at the abstract level. Then we moved onto line drawings of verbs. He has 30 he can identify and find when presented with a choice of three.

All of this proves what I have always known. He understands us. And more than that, he seems cognitively age appropriate. His speech delay, it’s pretty clear now, is an oral motor issue. Placing his tongue and his mouth is as hard for Boo as getting his arms and hands to do what he wants them to when his intractable brain is not co-operating.

And in that realisation I see hope. Boo’s arm and hand placement is still not reliable, but at the age of 2 it is much better than some people ever thought it would be. This is the little boy who once couldn’t lift his arms or unclench his fists at all. Daily physio for 24 months and he can. If he can get over those hurdles to have more control over his limbs, we must be able to do something similar with his speech.

Now having the confidence of his speech therapist and aided by my new enthusiasm for laminating things, we have done a lot of speech therapy in the last few weeks. Since our last appointment, we have been working on 6 phonics cards (he recognises them all) and can say ‘a’, ‘m’, ‘b’ and ‘d’ now. (‘F’ and ‘g’ are harder although he can say them in the words ‘woof’ and ‘egg’). He can also recognise about 95 per cent reliably the colours blue, red, yellow and green (on flashcards or in matching games) and he tries to say ‘red’ and ‘yellow’ when prompted. He has just acquired the word ‘more’, which we have been working on for months. At his speech appointment yesterday, his therapist was impressed by all his hard work.

I left on a bit of a high. It was working. I was helping him. And we got the paperwork to refer Boo for a service that will assess him for a communication device, which I think he will respond to very well.

But little did I know what was to come…Later that day, I got the best surprise ever.

Because for all I love hearing him say ‘hiya’ and his cute ‘yeahs’ or, very recently ‘o’ for ‘no’, there is a word that I have secretly wanted Boo to say more than anything. I didn’t mind that Boo could say ‘dad’ at 18 months. Kids always do say ‘dad’ first, in my experience. I loved the fact he had a version of his sister’s complicated name early on. I didn’t mind he couldn’t say ‘Mum’ and told myself it didn’t matter if he never said it. It’s just a word. I know he knows how to get my attention. I know he loves me.

But it didn’t stop the tears welling up later that day when we were sat down reading stories. I felt Boo’s body tense a little (a sure sign he is trying to achieve some movement that doesn’t come naturally). I wondered what was about to happen. Filling a nappy, maybe? No it wasn’t. For the first time I heard ‘Muuuuum’.

I felt a shiver. ‘Pardon, baby’ I said hopefully, telling myself not to get too excited. ‘Muuuuuuum’ he said. ‘Did you say, Mum, Boo?’ I said. ‘Yeah,’ he replied. And then a tear fell down my cheek and Boo got a fit of the giggles and tried to give himself a round of applause. And then he made like a tap you couldn’t turn off. ‘Mum’, ‘Mum’, ‘Mum’, ‘Mum’.

It is so hard to explain to you all how much this means. All that hard work he’s done. All the time I’ve spent trying to help him. The way he’s flipped the metaphorical ‘v’ again to the consultant who said not to expect him to make any sounds at all or to even respond to us. And you know what? Boo knew what it meant. His smile, his giggles showed that.

Those three little letters spoke volumes about Boo. About his determination, his potential and how much he loves and is loved by us all. Mum is not just a word. It’s another bloody miracle.

(Oh and yes: I look exactly like the woman in the card below.)

 

 

 

 

 

 

 

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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.