By day: mum of an autistic tot. By night: mum of an autistic tot.
My Little Pwdin is in school and I’m full of coffee and snot debating whether or not to go back to bed. First things first though a good catch up here.
The boy is settling well in his class. They have a nice little routine. Every week they do some cooking and Pwd comes home with a little bag of blobs that I think are supposed to be either biscuits or cakes – the texture is somewhere in between. Not sure how much of a part he plays in making them but I bet he likes getting his hands in the flour. After the first week’s art class we had to give his hair a cut. They’re making a collage of some sort and Pwd had glued bits of his floppy fringe to his head. It needed doing anyway but we’d been putting it off because of the inevitable meltdown that accompanies a trim.
While he’s away I’ve been trying to get on with sorting out this site. There were lots of bits bugging me but now it’s functioning ok and I think it looks pretty too.
Last Wednesday the NAS Cymru and the Wales Autism Research Centre (WARC) held a seminar with John Clements as guest speaker. Seeing as I was going out and about without Cledwyn or his tank of a buggy, I put my hair up (Pwd pulls it down), put on some heels and dangly earrings (Pwd pulls them off) and headed for the university’s psychology department, happy that I’d be meeting up with a lovely friend of mine, another autismum, I hadn’t seen for ages.
The speaker, John Clements is a clinical psychologist and the author of People With Autism Behaving Badly which, I must confess, I haven’t read yet. Addressing the gathered parents, mainly mums, shoeless with stripey socks and one of those leather choker type things around his neck I had little expectation of enjoying or agreeing with anything he said. He actually reminded me of a chubby Harrison Ford. In fact I found him a compelling speaker and although, at times, he was clearly playing to the crowd much of what he had to say not only made sense but struck deeply with me especially that individuals must be celebrated as such. If you haven’t discovered it yet, there is a page here celebrating the diversity and humanity of autism. Autism is too often spoken of as a disease or disorder and often in front of those for whom it is part of who they are as if they are not there or their feelings worth considering. I’ll be honest: that really upsets me especially as many autists are far more erudite and articulate than I or most of us could ever hope to be. It’s beyond me why certain charities purporting to advocate for autistic people so roundly deny them a voice. The Autism Trust’s publication, the Autism Files often wails and moans that those with Asperger’s are too vocal in the autism community. This comes from a group run by a woman, Polly Tommey who was plastered all over bill boards in just a push up bra and way too much Touche Eclat.
Like I said in my last post it’s been busy, busy, busy here in Cardiff.
Pwd’s daddy, my husband, soul mate, joy of my life, reason for my being, light of my life etc, etc, etc (our anniversary is approaching and I’d like a nice pressie)…is Irish: a Dublin boy in fact. We had Pwd’s great Aunt and Uncle come over to stay en route to a family wedding. I think they were a little shocked at just how energetic a Pwdin unbound can be. I think they were also pleasantly surprised at what a joy he is to take out for food. Now, Pwd lives mainly on paediasure – complete meal milkshakes – but there are certain places we can go where he’ll eat a little, sometimes a lot:
Pwdin is disabled. There’s no escaping it. His perceptions of the world and reactions to it lead him directly into danger as does his inability to communicate. Moreover, communicating TO him is time consuming, conveying an urgent message of danger can only be done by physical intervention. Aidan and I are finding that older relatives on both sides of our family don’t really appreciate that these problems are profoundly disabling. From one who asked why he should go to a special school because, “It’s just autism,” to the often asked “but he will speak/get better/grow out of it one day won’t he?” I’m getting weary of trying to explain what autism is, how it impacts on Pwd’s life and how it’s not “just a label.”
Now, on to the important stuff. Pwd has made a minor – major to us – breakthrough with his eating. He never liked to touch food with his hands and refuses to let food laden cutlery into his mouth. Over the last few months he had started to poke his food with a finger and this week picked up some toast, tore a piece off and ate it! Good one Pwdin Bach!
Not only that but he has had two nights in a row where he slept for eleven hours and a couple of nights before that he had a twelve hour night. Now, if only he’d stop painting his room with his poo…