One year ago, I wrote a blog post about my eldest son. I had spent the evening before googling what it means to be 16, and comparing it against what it means for him (as an autistic child) to be sixteen.
A lot of the points I made are still relevant today, though several of them have changed since.
Of the four points I mentioned (Crime related issues, Sexual activity and relationships, Medical care, and finally schooling) We’ve experienced the most change in the last two.
Medical care, and funding for a child over the age of sixteen with a disability is an absolute joke. We’ve so far filled out four seperate multi-page (20+) forms. I say we… my OH filled them out. She’s well aware how bad I am with forms. Of these forms, if you make the slightest error on submission, they reject the claim, and that’s that. We missed a tick box on the 50+ questions, and as a result, have had to resubmit. The amount of trick questions asked are ridiculous, and the entire form is geared towards physical disability, rather than mental. From speaking with friends, it also seems like the staff processing these forms don’t understand mental illness, which doesn’t help.
You’d also think that once you’ve been evaluated by a government employee, that this would go on record, and be shared between teams. Nope. Every single team involved wants a seperate report.
I don’t want you to think I don’t understand why there is the need for all this documentation, and investigation. I completely understand. The amount of people claiming disability for minor ailments is ridiculous. A friend of a friend used to claim disability for epilepsy. She’d had a few minor fits, but nothing major. Both her and her partner were receiving both Disability living allowance, carers allowance, and a number of other payments. This enabled them both to travel quite extensively to conventions and on holidays. Yet they weren’t able to work. I’ve worked alongside a number of people with Epilepsy, and there was always an understanding of how to deal with fits amongst those who worked around them.
Rant over on that one though. Its a deep rabbit hole to stumble down.
Schooling though, this one has made me incredibly happy. Until July, my son attended a local school. It was specialised for dealing with children with special needs. He was in a class with 6 other children, and taught by two members of staff. Rather than teach at multiple levels, they taught to the lowest common denominator, and as such, half the kids were releasrning the same things term after term. We’ve always said that our son knew more than he let on in class, but they never really had the capacity to challenge him, so he carried on as he always did.
In late August, after lots of chasing, we received confirmation of his place at college, though they were placing him in a life skills class, in much the same way that they’d done at School. We challenged this, explaining that he really wanted to be studying Arts & Media. We managed to get him signed up for a mainstream course, with support. They tested him, and confirmed that they believed he should start working towards a GCSE in both Maths and English, as he had the capability for this. SEE! Bloody told you! Ahem.
Since September, we’ve made huge leaps. He now travels by himself on the bus each day, walking by himself to the bus stop, nad from the bus stop to the college. Its bloody terrifying, but its a massive step for him. He controls his own dinner money, and is responsible for getting himself in to school on time, and to each lesson. He gets homework now, and completes it without chasing, in plenty of time for its hand in. Since last year, he’s matured a huge amount, and continues to do so on almost a daily basis.
His sense of humour shows a lot more now too. Earlier, he came down to grab some fizzy. Its his major weakness. We’ve got a bundle of snacks in for him, and along with that, 3 different bottles of fizzy drinks. My OH turned to him, and said, “You can have whichever drink you like! Dr Pepper, Fanta, Cherry Coke…” He grinned, and said “But not Wine!”
He grinned even more when we said “you’re seventeen now, you can if you want!”