The man with tape on his face. (verbal dyspraxia and its impact)

My eldest sons speech was completely lost on everyone but me until he was nearly seven years old. I remember as a very small child in a montessori classroom a teacher was unable to understand him. She got down to his level and apologised and asked him to repeat what he said but again she was lost. On the third time of asking she shook her head and looked pleadingly at him and this little soul took her in his arms and hugged her, as if to say 'its' Ok, don't feel bad'. I knew right then and there that I was mum to an exceptional human being. I was right, but much of his brilliance is lost on those who do not appreciate the complexity of the difficulties he is living with. One of those difficulties is with speech and language.

Developmental Verbal Dyspraxia (DVD) is a contentious diagnosis but it is recognised as a condition and it is worth talking about. It is sometimes referred to as childhood apraxia of speech.

2.5 million people in the UK have speech, language or communication needs (SLCN) but DVD is a relatively  rare condition and it refers to difficulties in making and coordinating the precise movements (articulatory) required in the production of clear speech (P. Williams)  Children with DVD find it challenging to make speech sounds correctly and to join sounds together in words and sentences.

Oral dyspraxia on the other hand refers to the challenges in co coordinating the movements of the vocal tract (larynx, lips, tongue, palate), when not producing speech. Children with oral dyspraxia have challenges carrying out oral motor tasks such as blowing and licking. It would seem logical to think that if a child has verbal dyspraxia they must have oral dyspraxia too, but research suggests otherwise. Some children have both but not all. 

It may exist on its own or be diagnosed in conjunction with motor dyspraxia (and other possible co existing conditions).

Speech and language difficulties per se are the most common form of difficulty seen in schools, perhaps because we easily recognise when a child's speech is not developing as expected. In an ideal world it will diagnosed early and appropriate and intensive intervention will offer the chance of very meaningful improvement. Sadly though these difficulties are often met with a 'lets review in six months' approach and these are extremely important months in language development and subsequently in the acquisition of literacy.
If a child is lucky enough they will receive the appropriate help but then people think it has been corrected totally and forever. The truth is that as with motor dyspraxia this is a lifelong disability. Individuals just learn to cope with it better and adopt strategies to overcome the difficulties they experience.
My own son was not one of the lucky ones, therapy was a very rare resource and his therapeutic input came rather too late. He didn't learn to read until he was 16 years old!
It did allow humour though. We watched the 'terrible vision' and he jumped on the 'bouncealine'. His words were often so much more appropriate that those in the dictionary. I can remember at his school (which was for children with speech, language and communication disorders) being sincerely welcomed to the 'Harvest Testicle' service! 

In reality most people with dyspraxia (with or without a diagnosis of DVD) can have language issues because they process information more slowly than most other people and when they have a thought or idea, their memory issues mean that they have to get the idea out NOW often causing them to interrupt others or to speak  hurriedly and with an ever increasing volume. This is not intentional, just a manifestation of the difficulty being experienced.

It may be difficult for the individual to keep up with a conversation at speed, or to change topics rapidly. It may be that spoken language is reasonable (my son can talk the hind legs off a donkey), but receptive language is impaired meaning that the individual is not really understanding what it is being said to them. This can make them look like they are lacking in intelligence because it takes them so long to 'get' things. They are in fact not lacking in intelligence at all, just differently wired.

Observing my own son recently I watched him as he tried to follow and contribute to a conversation being held by people he knew and was comfortable with. When he interjected he stuttered and stumbled in his efforts to compose a meaningful sentence, and the other contributors often finished his sentences or tried to second guess his contribution rather than giving him the time to be part of the conversation. Eventually he fell silent, lost his place in the conversation and returned to playing a game on his tablet, and his isolation. He was excluded by people who had no idea that they had excluded him.
Joe once said to me It is no good just explaining something. I have to feel the words. A wonderful explanation of how it is for him.

I watch him as he says 'eh?' to everything that is said to him and whilst I completely understand that it is his way of giving himself a little more time to process things, even I find it irritating at times to constantly repeat everything I say.

He also indulges in a lot of verbal rehearsal, planning and mouthing what he hopes to say next. This means that he is no longer really listening to what is being said to him, and that he looks rather eccentric as he madly mouths away to himself as he is walking down the street or in a crowded room. He is also unable to enjoy free writing as he cannot get the words together to both make a meaningful sentence AND write them down. He adores the theatre (and comes alive on stage) but learning lines is ridiculously difficult for him.

I often consider that if I sometimes am irritated, the person who knows him better than I have a right to and who absolutely 'gets' dyspraxia/DCD and what it means to those who are living with it, how must it seem to others, those that are newly acquainted. What it usually means is that he rarely indulges in conversations with people of the same age as him as he tends to gravitate to those who are older and less demanding or much younger who have less expectations of him, or others with difficulties., and that condenses his world. Developmental verbal dyspraxia cannot be seen but is very disabling in the fast paced world in which we live. I guess a reasonable analogy for those without it is to drop them off in a foreign country where no one speaks their language and ask them to navigate their way through the day. It is tough, frustrating, embarrassing and oh so lonely.

Joe tells me that it is like living with tape on your face. It is for the rest of us to peel away that tape and give him and others like him their voice.

What we might do to help?

• Give more time. Allow people to answer in an unrushed way. Perhaps use a bean bag or someone's wallet for the person who is speaking to hold until they have finished. Then pass it on.
• Encourage them to be honest. 'Please give me more time to listen and answer, I have a speech difficulty'
• Talk to them about something familiar or that they enjoy so they can feel comfortable.
• Help them to organise and plan their responses.
• Be compassionate.
• Include them.
• Use facial cues, visual prompts or body language to express yourself.
• Business cards with essential information will save the person having to remember and verbalise routine data.
• Be informed and help to raise awareness.

For further information please see...

www.ican.org.uk/help
www.talkingpoint.org.uk
www.dyspraxiafoundation.org.uk
Supporting children http://blog.optimus-education.com/supporting-sen-pupils-speech-and-language-difficulties-classroom-strategies-teachers-and-assistants
www.afasic.co.uk
Apps for speech and language can be found at  https://www.afasic.org.uk/resources/apps-for-speech-and-language/


Ref. Williams P. Developmental Verbal Dyspraxia (Dyspraxia Foundation Information sheet).