Wednesday, June 29, 2011

Labels: post- official labelling of middle kid

I've mentioned before that I'm label averse, so what gives with me getting my son an Official Label? It's prompted some reflection, I can tell you.

As well as being label averse, I'm a champion justifier, and I think I've justified this quite well. I don't think I accept that Aspergers is a real label. I certainly don't accept that it's a "disorder". It's a different way of being, one that the world we live in doesn't make much room for. This is, obviously, a description that applies to a great deal of things that are referred to as disabilities. I've been slowly shifting my perception of a lot these issues for a while now, but there's nothing like living with one of them to push you that bit harder.

Charlie needs this label, because the world he lives in is so bloody intolerant and inflexible that spending a morning of kindergarten (prep) class filling a page with musical notes will generally get him a much less attractive label of "uncooperative" or "doesn't follow directions" or some such. It didn't, as it happens, because he has a most wonderful kindergarten teacher, but he's not likely to carry that luck all the way through school. He needs a piece of paper to say "Please let me be me, because I have a label you have to respect". That's a pretty sad indictment of our school system.

I need him to have this label to access some help for parenting a kid like him. His behaviour doesn't fit the standard parenting manuals, and why would anyone want to broaden the ideas presented to cover children with a "disorder"? A parent will clearly need specialist help with that. Of course, kids like him are very common, and always have been, but their parents have largely muddled through, finding things that work by trial and error. I wonder how many kids' parents couldn't find the right path, and how badly some of those kids suffered as a result. I wonder if Charlie's uncle might be one of them, but we'll never know. I wonder how many of them might have been helped if conventional wisdom had included some diversity in the patterns of kids' behaviour.

So I'm seeing this label as a way of demanding respect and caring from a world that finds him inconvenient, but I'm also not really accepting it as a label. It's a diagnosis, or something. It's a means of being understood, until such time as the world moves on and accepts that we don't all think alike, or socialise alike, or even perceive the world alike. Hopefully one day he'll just be Charlie again, not because he's changed, but because the world has.

Monday, June 27, 2011

In which a diagnosis of Aspergers was the highlight of my day

*Cough* Blog? Yes, I haz one. A semester of a Bachelor of Teaching in Secondary Education has buried my poor blog at the bottom of an enormous to-do list.

But today was just so monumentally shit that I shifted some cobwebs just to whinge at you. Feel free to pretend I never came back.

The day started so well, as shit days often do. Ben was organised, did his sax practice and left for school on time. He even took his lunch with him. We'd managed to score a cancellation appointment with a paediatrician before Charlie turned 6, for the purposes an assessment for autism spectrum. We found the place, got there on time and the doctor was truly lovely. She spent a long, long time with us (double the scheduled time) and concluded that Charlie fits squarely into the Aspergers box. She then embarked on the mountain of paperwork that follows such a diagnosis and explained what we needed to do.

I'm not too distressed by all of this, it doesn't change who Charlie is, and it should make his school years a bit easier. Still, it was pretty intense, and Crash and I were both feeling pretty wrung out after it.

Crash was running late for his appointment in the city, so I dropped him off & took Charlie home. We managed lunch before Crash called to say that Bad Things had happened and he needed me to bring him his laptop, which precipitated a meltdown from Charlie and interrupted the paperwork. We'd made it approximately one suburb before smoke started pouring out of the bonnet of the car, at an intersection where there was absolutely nowhere to pull over. In a second high point for the day, the car didn't explode before I found somewhere safe to stop. I called Crash, in the vain hope that everything had fixed itself miraculously and he didn't need the laptop any more. Plan A, not surprisingly, failed.

I called the NRMA, who told me they'd fast track me through the one hour queue because I had a child with me, and so the guy only took an hour to get there. He found the problem - a pinhole in the carefully sculpted, uniquely shaped and in no way interchangeable with any standard part, radiator hose. He also decided that it would never make it home. He helpfully called a tow truck.

Charlie completely lost it around an hour and half after we'd originally stopped, so I called NRMA back to get an ETA on the tow truck. Apparently it was an hour wait, but they could try to fast track it for me. I'm not quite that stupid, so I told them to cancel the tow truck and left the car where it was. It took another 10 minutes or so to get a cab home. Which should have been the end of the drama, but I still had 2 kids to retrieve before 6pm, and it was now well after 5pm. Fortunately we have another car. Unfortunately, it was completely filled with cardboard that would have been taken to the recycling depot if it hadn't been for the day's disasters.

By this time, sheer fury allowed me to ram all the cardboard into the back section of the car and restore the back seats. It wasn't enough to allow me to put in the proper car seat for the 3 year old. However, aforementioned fury decided that a booster seat had been sufficiently safe for Ben when he was 3, so bugger the law, I was picking her up anyway, with just the booster seat. All children were safely retrieved and fed eggs for dinner. They are all in bed, but Crash is still dealing with Bad Things in the city, and won't be home for another hour or so.

And the whole experience was enhanced by the constant sinus pain I've been living with for nearly 2 weeks.