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 ...

What we did this summer 1, 2 & 3

Last Saturday Andrew had a trial ride with our local Riding for the Disabled Association at Wythenshawe Park Stables.

I first came across the RDA when they were the recipients of a Blue Peter appeal back in 1987. At the time I was a young girl myself whose horse riding experience was one pony-trekking break, so I was intrigued by a charity that helped others to ride.

I put our son on the local waiting list nearby two years ago - given his diminutive size, we figure he'll either be a jockey or a Formula 1 driver (Daddy's preference!)

Andrew rode Stitch, their smallest pony, led by instructor Shaun and assisted by two volunteers who I suspect are girls from the Pony Club. And other than getting bored when stood still to receive group instruction, he really enjoyed the experience! He's now on the list as a casual rider (when regulars cancel) and will hopefully get a permanent ride soon.

Whilst we were playing horsey, Daddy was busy constructing the new garden swing. Bought over a year ago from grant money, we have an adult-sized frame to suit Andrew for many years to come, and a cradle swing on a spinner so he can choose whether to rock, spin, or both. This means that Andre can now play outside in 10 minute bursts of activity to suit his behaviour, and he gets fresh air every day even if Daddy is tired.

Yesterday we took Andrew to Play Factore, a huge soft-play near the Trafford Centre. It's expensive and probably value for money for older children, less so for Andrew who had had enough within the first hour - somewhere we will bookmark for the future.

Laser quest and a zipwire (addnl. charge) supplement two separate play frames for under and over fives. The older generation seemed a little too boisterous for our son's comfort so we came off the large frame quickly, unfortunately without experiencing the mega slide. However given his learning delay, Andrew can pass as a 3/4 year old so he climbed happily around the younger area without any other parents questioning his presence.

If I could make two suggestions to Play Factore they would be to invest in a separate baby area, as mixing wobbly one-year-olds with bouncy four-year-olds will always end in tears; and to darken the sensory den, white is not really a sensory experience.

Things my son loves ...

Bit of a random blog this one, but I'm writing it to give some ideas on how to entertain your SEN child without necessarily spending a fortune - which I'm sure would help all of us!

Rubbish!

Our son loves texture and noise. He may not yet be able to construct model rockets out of old Fairy Liquid bottles, but this doesn't mean that everything simply gets thrown away. He adores empty milk bottles - rinsed so that they don't smell - with the lid screwed back on, they make a delightful  hollow noise when hit and when hit against things. Wooden coffee stirrers and ice-lolly sticks get tapped against his teeth. Egg boxes have a strange texture that he likes to stroke. Bubble wrap ... well, who doesn't like bubble wrap!

Musical Instruments

He's progressed from ELC style drums and tambourines, these don't make enough noise. So his drum is now a proper set of bongos purchased from Lidl; and he has a sleigh bell stick and maracas, all found in our local Charity Shop. These all seem rather more robust that the children's toy versions, the bongos are in their third year with no damage yet.

Sensory input

We haven't bought vibrating toys from any of the Special Needs suppliers - have you seen their prices?! So he has a vibrating cushtie cushion, a bluetooth pillow to play music while he sleeps, and two hand-held massage devices. We have recently retired his large bubble lamp, which came from a water features company (I think it was intended for office receptions!); but he still has the small bubble lamp that we sourced from Argos. A colourful spinning light-bulb came from Maplin, and ball lights from Ikea.