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. 

Shutting down this blog

Note from 2025: I’ve left this post as it was—written during a time of deep fatigue and quiet disappointment. It marked a pause, not a full stop. Nine years on, I’m revisiting this space with fresh purpose and a clearer sense of what connection can look like. If you’ve found your way here, welcome.

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Blogging hasn't really helped me to cope, and hasn't really achieved anything (for example, despite a direct mention in the NDCS Families magazine, I have not been contacted by any other parents if children who have both ASD and ANSD).

Bye bye.

I'll probably just leave the blog to fade away, I won't actively delete it. You never know.

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!!