Most of the posts so far have revolved around our son's Autism, as this (coupled with learning delay) affects most of his behaviour. Time to talk about his deafness ...
Andrew has Auditory Neuropathy Spectrum Disorder. It means that the mechanics of his ears work, but his brain doesn't get the message. The breakdown can lie with the hairs of the cochlea, with the auditory nerve, and/or with the receptive areas of the brain; and in Andrew's case, it looks like the latter.
When he was still a baby - and we didn't really understand his hearing loss - it was positively useful that he was deaf. We could clean and hoover the house around him, and it wouldn't wake him from his baby sleep. We could have normal level conversations without having to 'shush' people. He could go to sleep anywhere and everywhere.
As he's grown up, it's become increasingly apparent that our son does have some hearing. He finds reassurance in listening to music, and is rarely seen without a musical toy clutched to his left ear. (When he gets fed up, he'll switch it to his right, but the hearing loss is greater on that side.) He'll go to sleep listening to tunes, and it's the first thing he wants when he wakes. It's as though the music can drown out or cut through the static created by his auditory neuropathy.
We've had one successful run of VRA (visual reinforcement audiometry) testing with the ever patient Dr Rachel Booth, which resulted in diagnosis of a sloping severe to profound loss of around 80dB. The testing is difficult. How on earth do you explain to an autistic child with the attention span of a flea, with a learning disability that means he still eats with fingers, that he is to indicate when he can hear a sound? He has no interest in puppets that dance in boxes - the successful testing involved a revolving orange light.
But the more we watch him with his musical toys, the more we are convinced that he has hearing in a wider range than testing suggests. It's as though he 'tunes in' to music - single tone testing wouldn't interest him as its not melodic. He can also hear when we speak to him, normally we do have to shout but sometimes he appears to hear even if we don't raise our voices. What he doesn't do is interpret our voices into words that have meaning - possibly again a sign of a brain injury rather than loss of hearing.
I attended the NDCS weekend about ANSD in 2014 but there - as online - I felt swamped by the suggestion that the solution is cochlea implantation. All I can find online are successful ANSD / CI stories, and never any negative ones; and yet I know they must exist. CI isn't appropriate for our son because if we cannot measure his hearing loss accurately now, how could we measure any improvement? Some of the best improvement stories I've heard about CI are about the non-implanted ear beginning to hear better, which makes me wonder about surgical alternatives. Stem cell treatment is in its infancy, and is a possibility for generating damaged nerves and brain cells.
Our son can hear, but cannot listen. I'm sure there must be therapies out there to help improve his listening, but they are probably designed around children with neuro-typical behaviour and not those with Autism and a learning difficulty. So we will continue to plough on, as parents, trying to encourage our son to listen by playing him different kinds of music ... Guns n Roses followed by Vivaldi ...
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