Tag Archives: SALT

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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Good News Catch-up: Good News Friday #47-49

Today is Boo’s first TAC meeting. TAC stands for Team Around the Child meeting. We have 10 of the cast of thousands involved in Boo’s care meeting at his nursery to talk about him face-to-face. It’s been a long time coming. 12 months, nearly. And the organisation has been shambolic, to put it mildly. But it is finally happening.

I am grateful. Very grateful. Grateful that busy healthcare professionals are taking the time to meet with us in this way. Grateful that Boo will, for once, be at the top of people’s agenda rather than mid-way down yet another waiting list. I am grateful that The Grumposaur will finally get to meet Boo’s developmental consultant, speech and language therapist and ask them questions I have asked many times before.

And I feel sick. I feel really, really sick. Because the agenda is a tough one. Education and statementing, or whatever the new acronym is and the process that no one seems fully to understand, are high on the list of talking priorities. It has the potential to be overwhelming as we discuss a little boy people are starting to describe as a ‘square peg in a round hole’. A little boy who is severely disabled physically, but seems (for the moment at least) to be cognitively age appropriate. You can’t pigeon hole, Boo, I was told last week. ‘He doesn’t fit the common profiles for disabled children.’ This is going to make a difficult process more difficult, I’ve been told. ‘I don’t think the county is provisioned for kids like him’, I was informed. This stuff is not fun. But it has to be said. We need to start thinking long-term soon. Oh crap…

I have had a big wobble about all of this over the past few days, hence the Twitter and blog silence. I emailed my friend over at Tough Little Cookies about it all. She said a lot of lovely, smart and sensible things, because she is lovely, smart and sensible. One thing really stuck in my head, however. ‘Remember, you know him best of all’. She’s right. Whatever is said about Boo this afternoon will not change how I feel about and dream for him at all.

So, instead of adding to my long list of questions for the TAC meeting, I decided I would finally get round to writing a Good News Friday post, by way of a bit of a catch-up for all of you about all things Boo, and a reminder to me of all I have to be grateful for on a day I really need reminding.

Motoring On: I confess, physio can feel like Groundhog Day. Sometimes I think if I spend another 30 minutes trying to teach Boo to roll I will explode. How much harder must it be for him than me, though? And he never gives up. What right have I to want to do so? The problem is not just the repetitiveness of the exercises (although I try to find new and fun ways of doing the same thing for the 500th time). It’s the fact that doing it every day means that you often can’t see the incremental progress and feel you are banging you head against a brick wall. We’re all about the increments here, I reminded myself yesterday. So I took a step back. I looked at the 100s of photos I have of Boo on my phone and took stock of his achievements. This is what I realised

Boo can sit with diamond-shaped legs (straight legs cause increased tone and his back to curve) for up to 2 minutes unsupported. Did I really just type that? 2 minutes? How did I not notice what an amazing achievement this is? He has to prop with one arm or he topples as his trunk is so wobbly. But he can do this and his saving reflexes, while not totally reliable, are improving all the time.

Last week I took the first ever picture of Boo while I was sitting from in front of him. Usually I have to sit behind him (his bum steadied by my crossed legs) and flip my iphone camera round. This is a huge milestone for us both and the photo is now officially one of my favourite pictures of Boo (and there is a lot of competition let me tell you).

And also yesterday, whether by luck or judgement, Boo rolled once from back to front. He has never done this before, peopleNot without help. Not in 2 years. I had left him on his change mat on the floor in the dining room, to get the change bag from the living room, 5 feet away. Sissyboo was in the same room with him, but sat on her chair finishing a drink. I heard a noise. I could see Sissyboo through the doorway and heard her scream, I thought at first with fear. But it was actually a squeal of delight followed by a bit of fear when Boo donked his head on the wooden floor.

He had rolled off his change mat. He was on his tummy. Neither of us could believe it. He had done it. Neither of us had seen it, but he had done it. We then spent 30 minutes trying to get him to do it again. Of course, he didn’t, but he found our efforts to make him do something he didn’t see any need to completely hilarious. We were late to visit a friend as a result.

The roll may have been a one-off. But it might not. Independent mobility might be coming. It is one of the things I wish for most for him. Please let this be the beginning. Please.

Speech: Progress in this department is still very slow, but I feel that his cognitive skills are pretty good, backed by an encouraging Portage assessment last week that identified him as having entirely age appropriate skills except where his physical problems impeded his progress. It’s becoming clearer to me, his Portage teacher and speech therapist that Boo’s problems seem to be oral motor (muscular) rather than necessarily cognitive, although we can’t be totally sure. We are getting very clear ‘yeahs’ from him now, ‘hiyas’, lots more ‘dads’ and the odd ‘mum’, not to mention various other sounds and odd words. My homework for this month is to work on ‘m’, ‘b’, ‘d’ sounds, blowing (he has no clue how to do this as yet), 10 basic verbs on flash cards (and I have finally bought a laminator to make them) and colours. That’ll keep me, I mean us, busy.

Clapping: Clapping was put on Boo’s target list by his old Portage teacher when he was a year old. I wasn’t happy about it being on there. It’s not that I don’t want him to clap, but his arm function is severely challenged. Moving his arms in the necessary way was and is tough for him. Doing it without closing his hands into fists almost impossible. Of course, he kept failing this target. Our new Portage teacher took it off his list. I like his new Portage teacher. And then last week, I said ‘Mummy clap’ after Boo done something well in physio. He copied me. His arms moved well, if not quite symmetrically, so one hand was raised slightly above the other. One hand was open, the other was fisted. But he did it. He only bloody did it. And now whenever you say clap, he has a go.

Conductive Education: Boo loves his conductive education classes. He is worked so hard there, but he has so much fun. He loves his teachers and his little friends. We are so lucky to have found this wonderful place. And he is making such strides there. I know that the School has helped him to achieve all of the things I’ve described above. His propping on his tummy has come on in leaps and bounds. He can hold his head up with nearly straight arms now much of the time. I never thought this would or could happen. He is trying, not very successfully, but nonetheless, to crawl. He can do four-point kneeling easily with splints on now, and without them. This is harder, but he tries, nonetheless, with some success. His supported walking is amazing. He is stepping, folks. Stepping! And he is ahead of the game. His teachers think it’s hilarious, but Boo is always starting the next thing before the class moves on. So when we arrive and everyone is sitting in their chairs, he picks up his name card to give to his teacher, because he knows that’s the next bit. Then he raises his arm in preparation for the vocal exercises. He rolls before the bell is rung for them to do it. He knows the routine. He’s ready for what comes next. He wants to show them he can do it. He mostly can.

So whatever happens in today’s TAC meeting, this is what Boo is like: tenacious, happy and living life with no sense of his own limitations. Nothing can change that. And if I need to re-read this post this afternoon to remind me of this. I will.

Good News Friday #42: The First Straw

Well, we’ve nearly done it. We’ve got through the first week of our new routine with my two long commutes and a different work pattern. It hasn’t been especially easy, at times, not least because nursery called on Wednesday (when I was 65 miles away) to say Boo needed to go home as he had been vomiting. There was nothing wrong with him. His anti-seizure medicine makes him a bit nauseous and if he eats too close to having it (they gave him a second breakfast without telling me they were going to do that), he spits up. They still excluded him for 2 days even though there is nothing wrong with him and dealing with that has been difficult. But we coped and having had a rough start means we know that we can deal with things when they don’t go to plan, which is good news, in a perverse kind of way, I guess.

But I won’t say it’s been great. Bearable mostly. But very good in places, and there have been some very, very good Boo moments that I just have to share and which have made it all so much better.

1) New sounds: We have ‘Wuhs’ and ‘Bs’ here now. And most people seem to be called ‘Bob’ (which makes a change from ‘Dad’). (‘Bob’, by the way, is not as random as it sounds. It’s a version of one of his good friends’ names at nursery). We also have had a lot of in-context ‘yeahs’ this week and Boo even showed them off to his developmental consultant on Wednesday, which proves that sometimes, at least, he is happy to play the part of performing seal.

2) Appointments part I: Our first physio appointment for a month wasn’t great. I had hoped Boo would show his physio (one of his favourite people – and mine, I might add) some new tricks. No deal. He just sobbed uncharacteristically. We had no idea what was wrong with him, except that his OT was there too. He likes his OT, so it wasn’t anything personal, but he is a stickler for routine and context and I think, in his head, she wasn’t supposed to be there and he was confused. And then she pulled bandages around his middle in an attempt to see if they improved his trunk tone. It didn’t make her any more popular with him, that’s for sure, but it did improve his trunk control and with it his arm function in quite startling ways. So we have been referred for orthotics with a view to getting Lycra garments. The funding needs to be approved first and then we go on the waiting list, but this is a very positive step, I think, for Boo.

3) Appointments part 2: Our other appointments this week (Portage and the consultant appointment) went much better. We hadn’t seen the consultant for 9 months (she’s three months behind on 6 month reviews). She is lovely. She has this wonderful knack of accentuating the positive and was full of praise for all the things Boo could do. These are some of the only appointments we have when I walk through the door and feel happier than when I’m standing outside it. And I think it the good vibes rubbed off on Boo. The appointment was at the most rotten time of the day (tea time) and he went in 30 minutes late. He was starving and grouchy. He had been sent home from nursery and (like us) couldn’t really understand why as he was perfectly well. But once he was in the consulting room, he showed off right royally, as if to repay the faith the consultant had put in him in her positive take on reading through his biblical sized file before seeing us. I was so proud.

4) The first straw: And then we went to conductive education, which Boo loves. He had a great time as usual and participated in all the activities enthusiastically, watching his older classmates show off their new sitting and crawling tricks. Boo’s not there with either of those particular skills yet, but he doesn’t like to be outdone. So at his favourite times of the session (snack and lunch time) he decided to show what he’s made of.

He’d worked hard and he was thirsty by the time juice and biscuits came out. For once, I had remembered to take with me the therapy bottle his speech and language therapist had suggested we try him with to encourage lip closure and tongue retraction (although the latter isn’t really a problem for him). I must confess, I don’t use it at every meal and haven’t got one yet for nursery. You see, the bottle has a straw in it, and learning to use a straw is tough if you’re Boo. It’s a non-collapsible straw, which helps, but it’s also not fixed in the bottle, and Boo learned in about 30 seconds that the best game in the world is not using the bottle to drink out of, but to pull the straw up to irritate Mummy.

But we keep trying. A little and often, as is our way. But I was beginning to give up after 3 months of trying. I was using it at fewer meals, keen to get fluids in him and prevent constipation. But I said last week that I would take it to conductive education this week, so I did.

Boo walked over his seat (with a ladder back chair and arm splints and a bit of help, but you know, still, he walked) and sat down. He enthusiastically chose grape juice when offered that or water by his teacher. And then we sat down to drink. I held the bottle and was in the process of asking if we could have cup of juice made up too so he could get enough liquid inside him to hydrate him for the next set of activities when the usual 3 seconds of unenthusiastic straw sucking ceased.

And then I started talking to Boo and one of the other children before absent-mindedly saying ‘Gosh, Boo, you are a thirsty boy today, you’re wolfing that down’. What had I just said? I paused and did a double take. The liquid level had gone down an inch. An inch! And not down his front. He was sucking effectively through a straw. And it wasn’t a fluke. He did it again at lunchtime and tea time. He has learned to use a straw.

And once again, I realise that for all my research and my efforts as an amateur therapist, it’s Boo who does most of the teaching around here. It was as if he were saying don’t give up. Keep plugging away. Things will happen if you just keep trying. Noted, Boo. Noted.

OK, so those are our highlights from this week. I hope your weeks have been filled with good news. Do feel free to let me know what nice things have been happening in your worlds in the comments below. We love to hear from you!

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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.