This Tuesday, May 14th is the first annual Apraxia Awareness Day. This has been set up by CASANA (American organisation) to promote awareness about Childhood Apraxia of Speech.
Here in the UK, it is more often referred to as Verbal Dyspraxia or Developmental Verbal Dyspraxia (DVD) but it the same disorder and whatever country we are in, it’s important to raise awareness!
My second child has Verbal Dyspraxia (alongside other conditions). It’s not a condition that many people seem to be very aware of unless they have a child or know somebody who is affected by it. Verbal Dyspraxia is a speech disorder, not a speech delay. It is not something that children will just grow out of – it requires frequent and targeted speech therapy. This is something that not everyone is always aware of, and sometimes dangerous advice is thrown around by well meaning friends or relatives – “such and such didn’t speak til 7 years old then just started talking in sentence” “they will all do it in their own time” etc as if to say just leave it. For a child with verbal dyspraxia you can not just leave it.
With my son, his communication is already affected by his Autism and by having verbal dyspraxia on top of that, it makes it even harder for him. Children with DVD have difficulties in producing the sounds, so any words that they attempt to say can be really unclear. This is because of difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate that are necessary to produce clear, intelligible speech. Naturally this makes it so hard for them to make themselves understood and can be so frustrating for the child (and the parent, when you really do want to understand what your child wants to tell you but you just can not!)
Think how irritating and difficult it would be to go through life not being able to express yourself to others and make yourself understood. This is what our children go through and the Apraxia Awareness day has been brought about the recognise their struggle.
My little boy is amazing he is always smiling and he is so friendly even without speech, he manages to win people’s hearts without any words, but as he gets older it is more and more difficult for him as the gap between him and his peers widens. He is now 3 and a half and in nursery, but he is not able to tell me at all what he has been doing during the day. The other day after coming out from nursery he saw some of his classmates, he pointed to them eagerly to show me, but not able to say anything. It’s the first time he ever showed me an interest in the other children like that, so I was so pleased to see this. Then he ran up to them but he isn’t able to say anything, and they didn’t want to play with him because he can not talk and interact like them. It breaks my heart to see.
Speech is such a major thing we rely on day to day, our main method of connecting with any other human being. To grow up without speech is such a disadvantage, effecting every part of a child’s life from their ability to make friendships, access education, and develop their independence. It’s something many of us just take for granted.
For a child with a speech disorder every new word or sound they say is a milestone and a big achievement! My little boy has improved massively from where he was, although he still has a long way to go, and we have a lot more work to do. I am really proud of him and the determination he puts in to keep on trying to communicate in whatever ways he can. One of the things that has really helped his communication is signing (using signalong) which I really recommend and will do a separate post on in the future!
If you want to read more in depth information about this condition click here, for a very thorough and useful article by Pam Williams of the Nuffield Centre. You can also look at Afasic a UK charity for speech disorders, which can give more info and support, and Dyspraxia Foundation which covers all forms of Dyspraxia.