Waiting For A Voice

A Parent's Guide to Coping with Verbal Dyspraxia

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• Publisher: Straightforward Publishing Digital
• Year: 2015
• Print ISBN: 9781847164827
• eBook ISBN: 9781847165435
• Topic: Medicine
• Subtopic: Diseases & Allergies

Verbal Dyspraxia is a widespread, specific, severe speech disorder found in children, which prevents the brain from getting the correct messages to the muscles in and around the mouth, which in turn affects the ability to make intelligible speech. The outcome can be traumatic for all and involves trying to get effective support from the NHS, establishing what therapy the child needs and implementing coping strategies to ensure that the child can have as normal a childhood as possible. Waiting for a Voice is a guide for families coping with verbal dyspraxia.

Chapter 1

What is Verbal Dyspraxia?

Verbal dyspraxia. Developmental verbal dyspraxia. Articulatory dyspraxia. Apraxia. Childhood apraxia of speech. What do all of these disorders have in common?

Well the answer is... they are all the same thing. Confusing, right? Why not have just one name for a condition?

It seems there is no clear answer on that one, although it may stem from the lack of standardization in the past on the actual classification of the symptoms and the potential causes of the condition. The first three terms are usually the labels used within the UK, with the latter two those mostly used within the USA. In this book, for ease of use, I shall mostly refer to the condition as verbal dyspraxia.

So what exactly is verbal dyspraxia?

Verbal dyspraxia is a motor speech sound system disorder, which means that children with this type of speech disorder have difficulty making and co-ordinating the precise movements of the mouth, lips and jaw to enable clear speech production. ‘Praxis’ means planned movement, and therefore ‘a-praxia’ or ‘dys-praxia’ means a lack or absence of planned movement. It is a neurological condition, which means that it is linked to the brain and the programmed messages that the brain sends to other parts of the body - in this case, the mouth. It is also not a language or developmental delay, which means that it is not that a child is following a typical route of language development but at a slower pace, or that children with verbal dyspraxia are ‘behind’ with their language and just need to ‘catch up’ - rather it means that the child knows what they want to say, but the messages from the brain to the oral structures of the mouth sometimes get scrambled for (as yet) mostly unknown reasons. It is common for a child with verbal dyspraxia to have typical receptive language abilities (understanding of language) whilst having severely affected expressive language (the ability to speak clearly).

In very simple terms, the child may want to say a word, of which the brain then passes on the message to the mouth and associated muscles, but something happens to make that message go awry, and the wrong movements are made and therefore the wrong sound comes out. I see it as being a bit like a motorway, where cars are busy going from A to B. Sometimes, cars don’t receive the correct instruction from the sat nav, perhaps due to an unclear signal or the wrong information was input into the machine, and that can cause the vehicles to veer off onto a different route, which stops them from reaching the correct destination. If you apply that to the signals sent from the brain to the mouth, it means that in children with verbal dyspraxia the mouth and the neurological pathways do not connect in some way, and the mouth thereby receives the wrong ‘message’. Perhaps it doesn’t happen every time, and that is why some children with generally unclear speech can sometimes say a word quite clearly and correctly, and then appear to ‘lose’ that word for a certain amount of time.

Children with verbal dyspraxia have difficulty in producing the sounds required in speech, along with trouble in blending the required sounds to make words. Often there is also a difficulty with sequencing those words to make sentences. Not all children with verbal dyspraxia have the same symptoms, however, as it is what is known as a ‘multi-faceted’ condition and can present in children with different degrees of severity. At a basic level, the incorrect patterns are stored in the brain, and therapy helps to re-train the teeth, lips and tongue and breathing mechanism to make the correct movements and shapes, and this new pattern is then hopefully stored as the correct method for future use.

Some children may also have, instead of or in addition to the speech sound system disorder, another condition occurring at the same time called Oro-motor (oral) dyspraxia, which affects the movements of the larynx, palate, lips and tongue, and may further inhibit the ability to produce clear speech.

Is it a common condition?

In some ways, yes and no. There are no clear statistics on how many people in the UK have ‘pure’ verbal dyspraxia (i.e. ‘just’ verbal dyspraxia and no other co-existing conditions.) The Afasic website in the UK state in one of their information sheets that ‘most people typically assume SLI [specific language impairment] must be very rare, and are surprised that it affects nearly 7% of children (Tomblin et al, 1997).’¹

It’s hard to put a number on it, but it appears that only a small number of the cases seen by Speech and Language Therapists have actual verbal dyspraxia, although that may be higher in relation to a specialist SaLT’s caseload. It does appear that cases over the past few decades are more frequent, with more cases recorded, although this may be attributed to the narrowed, and commonly agreed, characteristics required for accurate diagnosis, earlier identification methods, and increased awareness by health professionals. What is clear is that much more research and correct data collection is definitely needed. Verbal dyspraxia is, by nature, a changing, multi-faceted condition - indeed, some children find the label of their condition changing over time as new characteristics or difficulties present themselves. Also, it is known that having verbal dyspraxia may lead to other conditions presenting in the future, such as the development of an expressive language delay. All of this makes for a very grey area in terms of the correct numbers of cases.

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

Some common characteristics of verbal dyspraxia

Only a Speech and Language Therapist can accurately diagnose verbal dyspraxia in a child, as they have the expertise and training to identify to the key characteristics that differentiate it from other speech disorders (more on that later.) Due to the fact that the condition changes over time and also presents differently with each individual, and the fact that an accurate identification and classification is also dependent on the age of the child and their ability to undergo assessment, it is widely accepted that it is a complex diagnosis. Some of the common listed symptoms are as follows:

 Having a limited range of consonant and vowel sounds

 Experienced feeding problems as a baby

 Had drooling as a baby, and/or lack of babbling sounds (a quiet baby)

 An inconsistency of speech (can sometimes say a word, and then may seem to ‘lose’ that word)

 Difficulty with sequencing sounds and words

 Missing out parts of words, or substituting them with other sounds

 Problems with tone, pitch, volume and rhythm of the voice

 Weak mouth muscle tone

Often, but not always, there is a family history of speech and language difficulties, and/or problems with reading, spelling and writing. Monty had all of the above list, apart from feeding problems or drooling as a baby, and there is no family history of difficulties with speech. At his first assessment by the Speech and Language Clinic, it was established that he had only three of the five vowel sounds, and only one or two consonants, and only a handful of words that could mostly only be understood by close family that knew Monty well. We also knew that Monty, either then or at some point later, also had the following:

 Quite a bit of grunting in the early months, until the age of about three

 An initial lack of understanding of the concept of syllables

 Very slow progress in speech therapy, to the point that we spent a lot of the first 6-9 months mostly teaching him the same three sounds

 At first...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Foreword-Katharine Tate
• Introduction
• Chapter 1. What is Verbal Dyspraxia?
• Chapter 2. From Diagnosis to Action
• Chapter 3. What to expect in speech therapy
• Chapter 4. A Day in the Life
• Chapter 5. Education
• Chapter 6. A Difference in opinion?
• Chapter 7. The Family Unit
• Chapter 8. Diet and nutrition
• Chapter 9. Looking to the Future
• Chapter 10. Further reading and Information
• Index