We’re familiar with these figures: Approximately 1 in every 1,000 children is affected, and the incidence is 2 (or possibly 3) times more likely in boys, than in girls. What we have only just realised is that these statistics not only relate to our eldest sons clubfoot, but they also represent a motor speech disorder our almost 3 year old son has been diagnosed with. It’s uncanny!

Tommy is a happy little man, most of the time. Content, and very quiet. He never made babbling baby noises, and as he became mobile we realised how stealthily he would manoeuvre unheard around the house. As time passed it became obvious that he wasn’t developing speech like children his age typically do. At first there was no reason to be concerned. Believe it or not I had been a late speaker, and we all know children learn and develop at different rates. We assumed that at some point – when he was good and ready – Tommy would begin talking.

A few months after he turned 2 years old and with only 3 verbal words, I took him along to a community speech therapist. I mostly did this out of curiosity. Having done nothing special to “teach” our elder son how to talk, I had no idea how to encourage little Thomas to become more verbal. Even back then I could talk to him in long, complex sentences containing two or three requests, and he would follow through on each of those requests. His receptive language (i.e. what he can understand) has always been incredibly advanced.

Time passed. All of us worked together, and Tommy made very little verbal progress. In the eight months he has been going to speech therapy he has gained an extra 6 or 7 words. So some progress, but very slow progress – that we all worked very hard for. He relies heavily on a little “kkk” noise, and sometimes when he uses it, it looks like he truly thinks he is speaking comprehensible words.

Tommy’s speech therapist began to warn us that she suspected he was in for a marathon, not a sprint, in terms of learning to talk. She thought it was highly unlikely he would have a language explosion and suddenly start talking. He simply does not have a big enough range of noises to even begin to form many words. We began some of the early stages of assessment and intervention, ruling out issues with his hearing and any other developmental concerns. You only need to spend a few minutes with Thomas to see that his challenge is purely an expressive verbal one.

Last month our Paed informed us that Thomas has ‘Development Verbal Dyspraxia’, or DVD. I’ve since learned that DVD is quite a dated term, and that this particular motor speech disorder is now known as Childhood Apraxia of Speech, or CAS.  In a nutshell, that means that something in Tommy’s brain is “not allowing messages to get to the mouth muscles to produce speech correctly”.

He may never speak very well or much at all, but with intensive and appropriate treatment there is hope.

Banana CollageFor now, we consider Tommy extremely communicative. He uses more and more gestures, noises, sign language and variations of the few words he does have to communicate effectively with us. His big brother enjoys learning key word sign language and we have noticed that they are beginning to have more opportunity to play together as they can communicate more.  This is Thomas selling a banana to his big brother for $1 – all communicated with gestures and key word sign language.

This is not to say it is plain sailing. It can be upsetting and frustrating – even heart breaking – when he cannot get his message across to us. I have started to realise some of the little things I am missing from Thomas, and wondering when or if we will ever hear them from him. The “I love you’s”, for example.

I am grateful for the journey into parenthood we have had so far – for the resilience, patience and perseverance it has taught me – but in all honestly I am also angry that our family has once again strayed from the more typical path.

I feel immense hope and faith that Thomas will communicate with the world – perhaps verbally, perhaps not – and excruciating sadness that he may have to work very hard for that right.

I feel overwhelmed at the thought of the therapy it is predicted that Thomas will need, and at the same time I know with complete certainty that we are capable of being strong advocates for our gorgeous, loving and intelligent little boy. We are privileged to be surrounded by willing and knowledgeable cheerleaders, and I will continue to find ways to support him.

So…if you want to learn sign language alongside us, let me know. You are welcome to join us in learning to communicate with our second 1:1000, legendary son!

With love,

Lans

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