Oh my goodness, the blog is still live!

Well that was a little surprise - I thought about blogging or vlogging about Andrew's transition to adulthood and it's taken a few weeks to remember the name of the original blog - and it's still live (and my password still works!) But it's been almost ten years so where to start?

Andrew is still autistic. Still deaf. Still a double-spectrum child. But his diagnosis is now PMLD - profound and multiple learning disabilities - alongside autism and deafness. And he's just turned sixteen. Where have the years gone? (I blame Covid for stealing more than one year!)

I obviously need to catch you all up. So posts going forwards will be a mix of news and reflections from the last ten years, and updates on our progress towards adulthood. Things like navigating the move from DLA to PIP, does he need credits-only ESA, what about the annual learning disability health checks, accessing his Child Trust Fund, why do HMRC and DWP both need to know that he's staying in school ...

One thing I have learned during the last ten years is that, to successfully parent a child with special educational needs, you have to be very good at life admin. 

Demonstrating his disabilities ...

For various reasons, I had to take Andrew into the office briefly this week. My work colleagues all know about Andrew's disabilities, but they had recently expressed a desire to see how he was growing.

Knowing that I wouldn't be able to keep hold of him all the time, I used his disability buggy. They immediately asked if he could climb out of the buggy to play with them and, given the size of the group, I let him sit on the floor with them. He played quietly and intently for a few minutes, firstly with an ID badge on a lanyard (a favourite) and then with a discarded birthday balloon.

Seemingly before anybody could blink, he got to his feet and ran halfway across the huge open plan office.  Chasing after him, my colleagues quickly learnt three things:

1 - he is not physically disabled and can run very fast

2 - he doesn't care where he runs, and

3 - shouting after him to "Stop!" doesn't work because he's deaf.

Their reaction was mixed. Some thought it funny, until I pointed out that he can behave similarly in a supermarket ... Some were sympathetic but you could see they were thinking "Thank goodness my child isn't like that" ...

Now if only he'd had a meltdown when eventually caught, they would have seen how bad life can get ... But maybe, given that the office was busy (200 people on my floor!) it was better that he didn't!!

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 ...

Accidental sensory deprivation (Silly Mummy)

Sometimes I forget that our son is sensory-seeking, and expect him to behave like an NT child. Four a.m. is one of those times. My brain doesn't work well at 4 a.m.

Andrew is going through an annoying stage of waking up early, we've had a run now of 4:40am wake up calls. We don't generally have problems getting him to go to sleep, it's just staying asleep that he doesn't understand, he thinks it's time to get up and play. It's not a noise that wakes him, I was in his room from 4:10 a.m. this morning and the house is silent. It's not a toileting issue, he's still in nappies. But it is getting light earlier, so maybe he's just waking up and thinks it's morning already.

Silly Mummy takes herself off to the shops, and buys a blackout blind. (Have you seen the price of those things? And don't get me started on the shoddy manufacture, I've emailed Gro about that.)

Result? Instead of playing at 4:40 a.m., he's screaming.

A few hours later (not all screaming hours, thank goodness) when my brain begins to work again, I figure it out. It probably already bothers him that he cannot hear anything when he wakes up. And now I've removed another sense - he cannot see anything, because his room is pitch black. Sensory deprivation times two.

Andrew now has a blackout blind, and a night-light. (I'm determined to get my money's worth from that damn blind!) It won't stop him waking up, but it will stop him from getting distressed.

Now if only we can work out why he wakes up in the first place ...