This will have to be a quick post, with apologies for not blogging sooner.
We are still going through the mill with littl'un. Things are not as bad as in the previous blog, but he is still only sleeping fitfully and is awake from 4-5am onwards - which means we are not getting much sleep either. Daytimes are much calmer.
But we think we know the cause - teeth! At the end of week one, he lost his first baby tooth, and an adult tooth is coming through. He now has a second wobbler. Because he is so sensory seeking and is used to banging toys onto his teeth for input, we think he's distressed at the sensations he is now feeling.
Life with a child - now almost an adult! - with 2 spectrum disorders - autism, and auditory neuropathy.
Tuesday, 29 September 2015
Thursday, 10 September 2015
Six days that we never want to repeat ...
This isn't going to be a nice post.
My original plan was to write a wonderful post towards the end of last week, regaling all the fun that we had on holiday in North Wales - caravan, the Rhyl air show, climbing castle walls. But I didn't get any time last week, and haven't stopped to breathe until today.
Thursday - after the first day of term - our son came home and had a meltdown. Not a tantrum, a full-scale meltdown. Screaming, throwing things, scratching himself, banging furniture, banging doors.
Fine you may think - many autistic children do this, even the most placid ones. However this meltdown has lasted from Thursday afternoon until Wednesday morning, even through the nights, and he is still only calming down, not out of it completely. Six days from hell that we never want to go through again.
Was it school? We doubt it, he loves school, has no problem with transitions, and in fact school reported that he wasn't misbehaving terribly. Nothing had changed at home - no food changes, no clothing changes (he still fitted last summer's uniform), no environmental changes.
By Sunday, with no let-up, no sleep, and worried about the self-harm, we took him to the GP. We were hoping that our son had an infection, some reason for being completely out of character. The GP found nothing, but prescribed penicillin in case of an underlying virus; and asked us to monitor for any improvement. There was none. On Tuesday, we took our son into A&E. Now, we're not hypochondriac parents, we hate medical intervention - but something was distressing our son to this extent. We had a fantastic doctor, he ran all the tests under the sun, but ultimately found nothing. It eased our minds to know that various illnesses had been ruled out, but we - and the doctor - were left puzzled.
On Wednesday, we let our son return to school, warning them of his behaviour. (That's not as unfair as it sounds, he attends an ASD school so they are trained in handling challenging behaviour.) And whilst he was at school, we repaired the chest of drawers and spun it round so it faced the wall. We removed all hard toys from his bedroom, and provided only soft toys. We added a foam pad to the back of the door where he was hitting it. The replacement of the curtain rail will have to wait, a blackout blind will suffice.And we started breathing again.
Today, he is calmer. There are still short bursts of distress, but nothing compared to hitting the door 40 times repeatedly with clenched fists whilst screaming unintelligibly. Short bursts we can cope with.Hopefully we are on the other side of this horrific episode. But without knowing the cause, how do we stop it happening again?
My original plan was to write a wonderful post towards the end of last week, regaling all the fun that we had on holiday in North Wales - caravan, the Rhyl air show, climbing castle walls. But I didn't get any time last week, and haven't stopped to breathe until today.
Thursday - after the first day of term - our son came home and had a meltdown. Not a tantrum, a full-scale meltdown. Screaming, throwing things, scratching himself, banging furniture, banging doors.
Fine you may think - many autistic children do this, even the most placid ones. However this meltdown has lasted from Thursday afternoon until Wednesday morning, even through the nights, and he is still only calming down, not out of it completely. Six days from hell that we never want to go through again.
Was it school? We doubt it, he loves school, has no problem with transitions, and in fact school reported that he wasn't misbehaving terribly. Nothing had changed at home - no food changes, no clothing changes (he still fitted last summer's uniform), no environmental changes.
By Sunday, with no let-up, no sleep, and worried about the self-harm, we took him to the GP. We were hoping that our son had an infection, some reason for being completely out of character. The GP found nothing, but prescribed penicillin in case of an underlying virus; and asked us to monitor for any improvement. There was none. On Tuesday, we took our son into A&E. Now, we're not hypochondriac parents, we hate medical intervention - but something was distressing our son to this extent. We had a fantastic doctor, he ran all the tests under the sun, but ultimately found nothing. It eased our minds to know that various illnesses had been ruled out, but we - and the doctor - were left puzzled.
On Wednesday, we let our son return to school, warning them of his behaviour. (That's not as unfair as it sounds, he attends an ASD school so they are trained in handling challenging behaviour.) And whilst he was at school, we repaired the chest of drawers and spun it round so it faced the wall. We removed all hard toys from his bedroom, and provided only soft toys. We added a foam pad to the back of the door where he was hitting it. The replacement of the curtain rail will have to wait, a blackout blind will suffice.And we started breathing again.
Today, he is calmer. There are still short bursts of distress, but nothing compared to hitting the door 40 times repeatedly with clenched fists whilst screaming unintelligibly. Short bursts we can cope with.Hopefully we are on the other side of this horrific episode. But without knowing the cause, how do we stop it happening again?
Saturday, 22 August 2015
Hearing .. but not listening
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 ...
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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