Today was a testing day, trip to the vets, subsequent dead hamster, school visit and a sick child- all by 9.30am
The pace of the afternoon was similar- dig hole for hamster grave, collect child from school visit, hold brief but poignant hamster funeral, attend meeting at school.
The evening involved an epic journey to track down a suitable pair of trousers for the eldest child, the eldest child who had earlier come stomping home from school, his first day in 5th year, said he’d had a “frazzled” day, threw his new partial timetable at me, said there’d been some sort of problem and stomped off again.
The problem is all sorted out and we’re friends again.
I don’t mention my eldest child much so with his permission here is a little about him.
He is 15, very nearly 16, has his own Twitter following of almost 200, great with computers (prefers Linux), almost fluent in German, over 6 foot tall, currently listening to Kraftwerk, draws excellent pictures of trains and has an autistic spectrum disorder.
My fight is a similar fight to the one I’ve been having for almost 13 years, to get help, services and support on his behalf. He is probably the reason my expectations of local services are so low (and being met), my experience as a parent of a child with a disability is that you’re on your own.
As he approaches adulthood the services and support seem ever more distant and I’m not sure I have the energy to fight for us both.
All I ask for him is that he is able to have the same opportunities as other kids his age but to date this has been too big an ask.
Very soon we’ll both be fighting for help within the same service yet our needs are completely different. I need services to meet my needs quickly so I can get back to meeting his. He needs services to enable him to gather the skills to ensure he is not reliant on those same, woefully inadequate services.
He and I face many of the same difficulties but mine can be largely medicated away. Perhaps the reason I am not so scared of the stigma of my mental illness is that he is more stigmatised than I will ever be and he has no escape.
I emailed him a copy of this post as he is in his bedroom (opposite the room I’m in) and he OK’d it, there’s nothing he wanted to add or take away and that I suppose is art imitating life.