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. 

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.

Why blog?

Who are you?

I'm Mum to Andrew. Andrew was born in 2009, eleven weeks early, and weighing just 22oz (around 635g if you're younger than me!) I describe him as a "spectrum" child, not as an homage to the computer, but because he is diagnosed as being on two spectrums (spectra? Is that a word or just a Bond baddie?)

• Auditory Neuropathy Spectrum
• Autism Spectrum

From the reactions of medical professionals and the paucity of information on t'internet, this seems to be a rare combination here in the UK. Andrew is sensory-seeking rather than aversive; he is non-verbal but learning delays mean hasn't yet picked up sign language or symbols; and he has some hearing loss, but determining the extent is tricky when he doesn't understand the testing process.

Why blog?

Because Andrew can't.

No, seriously, why blog?

To let off steam.
To share ideas.
To spare my Facebook friends from my endless rambling.
To pose controversial thoughts in an environment I can control.

But mainly to get thoughts out of my head. Feel free to comment to do the same.