What a difference a year makes…

CASANA-Apraxia-Awareness-FB-2-e1425303741268 Tomorrow is the 14th of May. To some it might be just another date, just another day; but to those of us with children with a certain type of speech disorder, it’s a big thing. It’s Apraxia Awareness day! The one day of the year when we get to go all out and tell the world about our children with apraxia/verbal dyspraxia –  those little ones who are trying to find their voices – and the struggles that they and their families are facing every day.

This time last year, Monty was three years old and nine months. He only had a handful of speech sounds, and another handful of single words on the side. Much of his communication centred around the sounds ‘eeh’ and ‘eh eh.’ We were panicking. Every appointment with a professional left us with more questions, more worry, more concerns over the future. We poured ourselves into researching the internet, and doing speech therapy, and doing yet more speech therapy, and testing Monty for every type of mineral and vitamin deficiency that we could get our hands on. And it was tiring, and repetitive, and sometimes, a little bit negative.

When I knew that Apraxia Awareness day was coming last year, I decided to do something positive. I wanted to spread the word that my little boy was suffering with something more than just silence. I wanted to tell the people we saw everyday what life was really like for Monty, rather than just say ‘we’re fine’ all the time. I wanted to inform people, so that if they ever met anyone else with verbal dyspraxia, they would know what it was, and what the parents of that child might be going through. So how do you do all that? You have a coffee morning, of course, and you provide a lot of cake.

I had so many friends offer their help and support. Some brought beautiful home-made cakes. Many paid over the odds for raffle tickets so that we could buy Monty’s nursery the Nuffield NDP3 computer programme and a heap of resources for parents going through the same thing. Looking back, it seemed a relief for friends and family to be able to do something to help, in their own little ways, in what was at the time a helpless situation. And I was so grateful. Out of the sadness came something so positive, where people were so receptive and understanding, that it was one of the things to inspire me to start this blog. Apraxia-Awareness-Day-2-300x300 This morning I told Monty that tomorrow would be Apraxia Awareness Day. He’s used to seeing the little blue  symbol, like a little pair of crossed fingers for hope.

He looked at the pictures on the internet, and then he said, ‘Is for me, Mummy?’

‘Yes’, I said. ‘It’s for you, and all the other children who are finding their words this year.’

Monty looked at them again, studying them harder. ‘I like the blue best. Actually, little star best.’

What a difference a year makes.

Sam x

A little snippet … ‘Communicating the Problem’

I’ve started to pick out a few short sections from my book that I think might be useful for other parents struggling with different issues concerning verbal dyspraxia and their own child(ren.) Here’s one on how we as a family try to approach telling others about Monty’s condition, and how it has worked best for us to get the message across. The following is from pages 20-22 of Waiting for a Voice: The Parent’s Guide to Coping with Verbal Dyspraxia (Emerald, 2015.)

How do I explain that my child has verbal dyspraxia to other people?

I have found, over the past year or so, that people sometimes just don’t seem to get what we tell them about Monty’s verbal dyspraxia. My husband and I normally say something along the lines of ‘Monty has a speech disorder, which means that sometimes the neurological pathways from his brain don’t pass the message on properly to the muscles in his mouth, and the words come out a bit scrambled.’ Sometimes that can be sufficient, however I often add that that it is a motor planning disorder, and that Monty is not ‘behind’ or ‘delayed’ (perhaps because I am a protective mum and I like to get the correct message across!). I think it can be hard for onlookers to process exactly what Monty’s difficulties are, and the limitations of his social skills in some situations. Of course, I don’t go around telling every shop assistant what we are up against, but if the woman in the supermarket is expecting him to say thank you for something that they’ve handed him, or to answer their friendly questions, and he won’t speak or make eye contact, it is then useful to have a short sentence prepared which tells them that he has difficulty in answering them and he’s not being rude or difficult.

However, I think there is a point when too much information is, well, too much information. I remember the first time I felt uncomfortable about talking about verbal dyspraxia in front of Monty. We had gone to a theme park, where you can apply for a ‘fast-track’ pass to help with queuing if your child has certain additional needs. I was telling the man behind the desk, probably in long-winded detail about Monty’s verbal dyspraxia and the challenges it produced, when I suddenly became aware that Monty was looking shyly at his feet. Was he fed up of hearing me talk about it to people? Did he feel embarrassed and uncomfortable? I decided then that I would try to avoid making a ‘big deal’ out of it in earshot of Monty, and to have a short sentence ready to quickly explain things without the lengthy detail.

If we’re talking to children about Monty’s condition, we tend to say that Monty is ‘finding his words’ and that his brain is working very hard to help him learn how to speak, and that we’re sure he’ll get there very soon. Children don’t need to know the detail (not only will they switch off after the first sentence, it is also likely that the more you say, the more confused they may become.) And, let’s be honest, it is a confusing subject for anyone to get to grips with, let alone a child.

The following is the basis of an email that I recently sent to the parents of Monty’s new class at school. You might find it helpful when looking to offer your own explanation of the condition to family, friends, or new people that you meet. I tried to focus more on the positives (i.e. what Monty can do, rather than what he can’t), and the fact that to all intents and purposes he is just like his peers and doesn’t really need any ‘special’ treatment. Keeping the message short and cheery isn’t likely to cause any offence, and the feedback I had was really positive from the other parents, as they then felt prepared for any questions that came home from their own children about why one little boy in the playground didn’t talk very clearly and seemed to have his own language.

Here it is:

Hello all,

Sorry for the mass email but I just wanted to tell you a little bit about our son, Monty.

You might already have seen him doing a little bit of sign language in the playground, or chattering away to his classmates. Monty has a condition called severe verbal dyspraxia, which in a nutshell means that his mouth is often unable to process the messages that it receives from the brain, which in turn often means that his speech is unclear. Nothing else is affected, such as his understanding or his intelligence.

Monty has speech therapy and we really hope that his condition improves. He obviously finds communicating a struggle, and can take a little longer than others to engage his brain to ‘find’ his words.

  On a happy note, Monty is a very social little boy – he loves play dates and parties, and is very happy to be at school.

    I just thought it would be useful to give you a heads up, in case your little ones have any questions – let me know if I can answer any! (I’ll try!)

   Best wishes, and thanks for reading!

   Sam

I hope you found that useful in some way, in helping to determine the different ways in which you can attempt to explain such a difficult explanation!

Sam x

My book is published today!!

 

Book cover

Hello,

I have some exciting news today. For the last six months or so, I’ve been writing a book about Monty’s ‘journey’ with verbal dyspraxia, and how we have coped with his diagnosis as a family.  I found a publisher who was interested in publishing a book of this nature, as they deemed it to be an interesting topic and one which has not, until recently, been well publicised in the UK. The book is called Waiting For A Voice: The Parent’s Guide to Coping with Verbal Dyspraxia (Emerald Health, 2015) and it’s available in all good bookshops.

It can be purchased on Amazon via this link:

http://www.amazon.co.uk/Waiting-Voice-Parents-Coping-Dyspraxia/dp/184716482X/ref=sr_1_1?s=books&ie=UTF8&qid=1422289855&sr=1-1&keywords=waiting+for+a+voice

Writing the book was an interesting process, to say the least. Going through the pages of notes that I’d kept as some type of unintended, disorganised diary, and the reams of reports concerning Monty’s speech therapy, his many assessments and those reports on his general development and well-being over the last couple of years was both saddening and inspiring. There had been dark days that I’d forgotten about (or subconsciously let go of?); there had been good days when the sun had shined, so to speak, and life hadn’t seemed so bad in the grand scheme of things. And there had been a whole heap of days where apparently nothing had happened apart from the constant, and sometimes mundane, repetition of singular speech sounds, often to (seemingly) no effect.

What amazed me in the end was how late I felt I needed to leave it until writing the concluding chapter of the book. Monty’s little spurt in progress over the last few months of last year came out of nowhere, and suddenly I found myself going back over chapters to add bits in, to update information that was now out of date. When I first set out to write the book, I had no idea how I was going to end it, and indeed if I would have anything at all positive to say about the direction in which Monty’s condition was heading, which was quite scary. Suddenly it struck me: the process of writing the book was much like the condition itself – it was unknown territory; a vast emptiness of knowledge (or blank paper, in my case) that needed filling in, and no content that could be guaranteed. It required the persistent ability to look deep within to get the correct words out, in the way that I intended for them to come across, and a general commitment to communicate with the reader/listener and provide some sort of meaning along the way.  This is what I perceive life is like for children coping with a diagnosis of verbal dyspraxia, and how challenging every circumstance can be for a  child experiencing life without the ability to produce clear speech.

I don’t use the word journey lightly here (it brings to mind stories of X Factor wannabes) however it is the best description of the process that I can think of. Any family finding themselves with a child with such a diagnosis suddenly ends up on this new road, with little or no idea on how they are supposed to get from A to B – all they know is that they must keep driving forwards and hope that somehow, someday, something slots into place along the way.

If you happen to read the book, and are experiencing some of the same things that we did as a family, then I hope that it helps you in some small way, as that is why I wrote the book in the first place.

Sam x

 

 

Food, Gluten-less Food… Is there a link between gluten and verbal dyspraxia?

wheat What’s the link between some of the foods we eat, and the impact they have on our bodies, in particular our brain function? This was something I set out to find out about last year, after researching the link between gluten and verbal dyspraxia/apraxia. There wasn’t that much in the way of scientific study (not in layman’s terms that I could understand, anyway!) but there was a lot of anecdotal support by parents on the internet, and in various children’s nutrition books and cookbooks for removing gluten from the diets of children with certain neurological conditions, including verbal dyspraxia.

Gluten is a strange ingredient. It’s a type of stretchy protein naturally found in wheat, rye and barley. It’s present in many of the foods that we eat, for example flour, cakes and pasta, and is used/added by manufacturers to various foods and drinks that might seem surprising such as breakfast cereals, ice-cream and beer. People with Coeliac disease – whereby their immune system reacts with gluten and damages the lining of the small intestine- need to remove gluten completely from their diets to avoid a variety of symptoms and discomfort. In any event, it’s not ideal for any of us to eat too much of it, but for some, it can have a damaging effect on the body.

Dr Natasha Campbell-McBride writes in her book Gut and Psychology Syndrome -Natural Treatment for Autism, ADD/ADHD, Dyslexia, Dyspraxia, Depression, Schizophrenia (Medinform, 2010)  about the issues that can occur within the human body if there is an imbalance of the gut microbes (flora and fauna), and puts across theories that many conditions like autism and verbal dyspraxia originate as gut disorders. Briefly put, she feels that if you can heal the gut, and stop a potential ‘leaky gut’ from allowing toxins that should have been disposed of within the intestine to enter the bloodstream and clog the brain, then there can be numerous benefits to children living with those types of conditions. I know from the urine tests that Monty had done that he had results consistent with a ‘leaky gut’ analysis, and it seemed wise for us to cut gluten out, to see if it had any effect on his symptoms.

The paper written by C R Morris and M C Agin, Syndrome Of Allergy, Apraxia, And Malabsorption: Characterization Of A Neurodevelopmental Phenotype That Responds To Omega 3 And Vitamin E Supplementation (Alternative Therapies in Health and Medicine, July/August 2009) suggests that there is a link between apraxia/verbal dyspraxia and nutrient malabsorption, and a possible sensitivity to gluten. On the advice of our nutritionist,  we decided about ten months ago to give gluten a miss for a while, to see if it had any effect on Monty’s ability to produce clearer speech.

I have to say, when I thought about making the changes to our diet it seemed a little scary. I then thought if I was going to do it properly, then we would all of us have to do it. I was already cooking various different foods for the people in our household – I’m a vegetarian but everyone else eats meat – so it didn’t worry me too much about cooking extras or swopping some ingredients. And actually, I found that once you get used to it, it’s actually ok. You just end up checking every label, eating some odd-sounding things (lentil crisps, anyone?) and having a whole shelf dedicated to gluten-free items so that you never run out! The coeliac website  http://www.coeliac.org.uk/home is a good place to start, with shopping lists of ingredients that have been deemed gluten-free.

And the benefits? Well, I was very surprised. Within a week of going completely gluten-free, Monty’s helper at nursery had told me that she had noticed a difference in the clarity of his speech sounds, and his ability to sit and concentrate, and that she wondered what was going on and what we were doing differently! At home, Monty’s behaviour started to calm down, and he had less frustration tantrums. He also was more willing to concentrate, sit still, and make eye contact. Weird, we thought. We’d better keep going with this… And so we have.

It’s one of those things that I can’t really explain, and I don’t know exactly how and why it works, but for Monty it has done something beneficial, and that’s good enough for me.

Now where are those (quite nice) lemon-flavoured lentil crisps that were lurking in the back of the cupboard…

Sam x

The Importance of Being Honest… Telling a few home truths about verbal dyspraxia

I’m going to be honest here. Sometimes, just sometimes, I haven’t always told people the truth about Monty’s speech disorder, be it for ease on my part, or maybe to stop them from feeling sad.

In certain situations, and in the darker times of ‘no progress,’ it didn’t seem right to burden some people, for example elderly family members who tended to get upset about the uncertainty of the prognosis. (By the way – we’ve never actually had a prognosis, because with a condition such as verbal dyspraxia, there is no magic way of knowing what the outcome will be. In Monty’s case however, I think over time he will get to the holy grail of spontaneous, interactive and clear full speech. All fingers and moveable body parts are currently crossed.) That was hard, in a way, to be protecting other people, even though there was no visible protection for us as a family…

However, I’ve tried to stop all of that. Ok, sometimes I don’t want to be going on and on about the what ifs and the whys  (If I feel like a broken record on continual play then goodness knows what everyone else must be thinking); and I certainly don’t want people to think I am playing down Monty’s progress (If you saw us doing the conga round the kitchen after hearing a little voice say ‘I don’t like cheese now, Mummy’, you’d see just how excited we are as a family!), however we need to be able to put this into perspective. One group of sounds successfully realised does not mean that children with severe verbal dyspraxia will be able to say all sounds. One sentence uttered does not necessarily mean that others will come naturally, nor that that sentence will be achieved again without prompt. And that is the difficult thing to get across to people that ask about Monty’s progress – that this is not resolved, nor is it close to being so. But we are getting there.

A friend made a good point the other day. We were discussing Monty’s chattiness whilst he chased his friends around the playground (a lot of what Monty was saying (or SHOUTING) was understandable, some was not) and I said my usual, ‘Yes, he’s getting there.’ The ‘go-to’ statement, which covers all angles…

‘Emerging, then’, she replied, ‘That’s great to hear.’

Emerging. What a great word. I thought about it on the walk back home, and I came to like it very much. It suggests a sense of moving forward; of springing forth from the unknown. According to the online dictionary (dictionary.com) it means ‘to come forth into view or notice, as from concealment or obscurity:’

I can’t think of a better way to describe Monty’s current speech progress so that’ll be my word of choice from now on. Emerging.

Sam x

Super speech work – what’s the best formula?

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One size doesn’t fit all, that’s for sure.

After assessment and subsequent diagnosis, usually a child with verbal dyspraxia (especially if it is a severe case) will be offered speech and language therapy on the NHS. However, the type of therapy, the frequency / length of the sessions and where it will take place is often out of the hands of the parent, which can be very frustrating. Even though we were told that Monty was a severe case, we were initially put on a six-month waiting list for speech therapy, until we kicked up a bit of a (polite but firm) fuss, and this was brought forward.

Home work will need to form a large part of the overall approach – that’s a given. I don’t think in the beginning I was quite prepared for just how much was needed to be done at home! My advice would be to get yourself organised from the very beginning; keeping copies in a folder of everything used in sessions by the speech and language therapist is important, as is ensuring that the most relevant worksheets that you need to work on are at the top. In my experience, spending the first five minutes trying to find this week’s sheet only leads to everyone getting either frustrated or bored, and by the time you are all sorted your child has wondered off and is now fully kitted out in fancy-dress, and engrossed in a re-enactment of Room on the Broom. And once the attention has gone, its gone! I can usually keep Monty going for about fifteen minutes at a time, with another five with his head laid on the table at a push…

To a certain extent, the greatest control you have is over the work you put in at home – so make it count.

School or nursery will need to be involved, to ensure that practice is continuous, and fully integrated into the child’s different environments. I see the therapy/home/school practice as a ‘triangular’ approach. It is important to ensure that everyone involved with practising with your child is working from the same place – including how to pronounce the sounds correctly, and how to interpret and use the therapy sheets or cards used. Get the communication going from the very beginning, so that everyone knows what they should be doing. You could have a ‘home/school’ book that goes with your child, that people can record progress/difficulties in each day, or new ideas to try.

Below are some key points you might like to bear in mind in relation to the therapy provided by the speech therapist you are given (or have chosen, if you go private.) If a detailed assessment has been undertaken by a qualified speech and language therapist, the diagnosis should be correct, and therefore the correct approach to treatment for this particular speech disorder will be established. Not all speech disorders are created equal, and therefore the type of therapy needed will differ.

*  Continuity – of the therapist, of the way in which the session is undertaken, and the therapy programme used

Regular changes in terms of Monty’s speech and language therapist (five in less than a year!) were not beneficial to Monty’s progress in my opinion, in enabling him to feel settled – each one needed to take the time to get to know him, and this I felt was in some way ‘wasted’ time in terms of the therapy he so badly needed.

* Regular review of the child’s abilities and progress, their speech targets and ways of keeping things ‘fresh’ to keep the child engaged

Boredom and apathy can set in quite quickly, especially if the child may not feel in themselves that they are making any progress. It is necessary to change things around once in a while to keep the interest going – even if this means going back a few steps to sounds or words that a child has already mastered – as this will only help to build self-confidence too. The same can be said of trying something a little more difficult now and then – just to see…

* Experience of working with children with verbal dyspraxia

It is a multi-faceted disorder, and therefore different elements present themselves at different times. As well as the age of the child, any co-existing conditions, and their ability or willingness to do speech work, there is also the fact that the disorder tends to naturally change over time. Your  speech and language therapist needs to be able to change tact or direction, if things are not working, and also be able to spot where new difficulties are emerging, for example with sentence structure, or ‘dropping’ words.

All in all, it take a delicate balance of regular practice, fun and engaging exercises, and the willingness of the child to participate, in order for speech work to be productive. (Just hide the fancy-dress box before you start!)

Sam x

Doom, Gloom and all that Jazz…

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Sometimes, the glass is half-full and things seem a little rosier. Sometimes, however, along comes a day that drags you through a hedge backwards and punches you square in the stomach.

We all have those types of days now and again, but when they involve your children, it makes it all the worse, especially if you think a child is upset, or hurting in some way.

Recently, Monty has been able to communicate his feelings to us – his family – a little better, and whilst that has been an amazing achievement after so many months (years, even!) with that comes a new recognition, a different  perspective on the problem – because now I know how Monty feels about his condition, and the things that happen to him. Beforehand, I had to second-guess what Monty was feeling and thinking, in amidst the foot-stamping and exaggerated hand gestures. Instead of having a little communicator of my own, I listened to the children walking home in front and behind us when exiting the school gates, to extract a small glimpse into his daily life, into who did what in class, and what was eaten for lunch. I asked him questions that would only require a ‘yes’ or ‘no’ answer, to make it easier for him, whilst getting some small snippets of information, which really meant that the whole conversation was guided by me; by things I needed to know, or thought important. But now, Monty is able to offer his own views, and they are not always what I might have expected.

‘Can you say umbrella, Monty’, I asked, not long ago. ‘I can’t do it’, Monty said, taking his time over the words. ‘I can’t do it…with my mouth. Not… work.’ When had the realisation come, that it was a problem with his mouth? Had he always known, even though we had explained it in the terms that he was ‘learning to find his words’? I don’t know why this startled me so much – it seems obvious, really – but this was the first time Monty had been able to say for himself what was going on with his body.  Another time, Monty came out from school, and whilst we were walking I asked the obligatory question – ‘So, how was school? Good day?’, and rather than just nodding and putting his head down, Monty replied ‘(Boy) hit me. I fall down.’  I’m sure a lot of kids come out of school saying things like this, but to me, this was the first time I had a personal glimpse into what actually  happened in his day, and unfortunately, some of the sadness that came with it.

I am so grateful for the progress that Monty is making, but I didn’t prepare myself for the way in which his new speech would affect me, that’s for sure! It’s like each new phrase or feeling communicated by him is a little jolt of electricity running through me, some of which fire straight at the heart, and some of which hit the head. I know I just need to adjust, to get used to it, and to appreciate the glass for being more than half-full at this time in terms of Monty’s progress.

Sam x