05/01/2012

School days, blood pressure days.

It started when he was four. Some days, he just didn't want to go to school. We'd have to carry him kicking and screaming into the school bus, knowing that he'd probably be allright once he got there. The kicking and the screaming was always for us only, with other people, he would be calm.

Then he got a bit older, and a bit bigger. Carrying him kicking and screaming no longer was an option. Once he'd started big school, the screaming would begin at 6.30 in the morning, getting up time, not wanting to put clothes on time. No longer for our ears only, it woke up the neighbours. Some days we'd manage to make him go, some days not, and then, we'd have to make a fast decision as to who would stay at home with him, whether we could get a last minute childminder to come, whether we could afford it. Then we'd have to find time to make up the work we'd missed, somehow, find the money to pay for the extra childcare.

Really not knowing what to do, I contacted a forum for autistic people and their family. What do you do when you child won't go to school? The responses were not helpful. How dare you keep your child away from school, they asked? Would you allow a non-autistic child to miss school? Do you think his education doesn't matter because he's autistic? Why don't you just tell him he's got to go?

I pictured myself telling him, over the screaming. At the time he was just beginning to talk, and mostly in Turkish, at that, a language I had no command of. I felt powerless. Another person advised me to make sure he had an unpleasant day if he stayed at home: no toys, no videos, just work. I didn't even try it out. Max in an worked up, not wanting to go to school state, was a head banger. At the slightest contradiction, he would begin to scream at the top of his voice and bang his head hard, on the floor, on the wall, on the furniture. I couldn't let that happen. I had to pacify him. Just do it, they'd said. Don't let him bang his head, they'd say. I couldn't even begin to imagine how it would be done.

Then in the second semester it stopped. He started to go school every day, or nearly, quite happily. We became used to having our days to ourselves, free to go about our work, and with a little bit of time spare at lunchtime to get together, my husband and I, to discuss strategies for the following day, just in case something went wrong. Often we used that time also to discuss how to help Max in other ways. We decided to keep him from school one day a week, Friday, so he could go to his special ed. classes in the afternoon and not be too knackered. We worked out how to use social stories to communicate with him better and help him deal with his anxieties. We found a way of getting help for him in the school, even though there was no real provision for that kind of thing here.

Over the following year, we had some scares, some nervous moments, he did miss school a few times, but we were able, mostly, to write it off as him not being quite well: a lot of autistic kids aren't great at recognising when they're sick, or communicating it. So we would assume he was and he'd go back the next day. On the whole he had a great year. He changed a lot, he learned a lot.

Then it started again this November. At first, we'd think he was sick. And he was, at least some of the time: we were all plagued by some nasty colds that just wouldn't go away. But, now more verbal, he made it very explicit that he did not want to go to school. He no longer wanted to work, get up in the morning, he was going to stay home, play and draw. A couple of times we managed to drag him to the school bus. Then we got a phone call from the driver saying he wouldn't come out to go into the school building. The teachers managed to coax him out, but Max didn't do much that day, and the next day, he stayed home.

This dragged on until the Christmas holiday, during which he spoke of going back in January fairly enthusiastically. His teachers were very sympathetic. No one told us this time that we just had to make him go. No one accused us of being bad parents, or not trying hard enough. This morning was the first day back. He got up. Reluctantly let me put on his clothes. Complained of tummy ache, so didn't eat. Refuse to brush his teeth, and kept up a low pitch moan while I was putting on his coat. Downstairs, with his dad, he ate a pastry, and waited for the bus, all the time keeping up a monologue in which he told himself he had to go to school. When the bus arrived Max froze. My husband picked him up and carried him, like a marble statue, to the car, slid him in and left. No screaming.
Back home, my first thought was to switch off my phone, so I didn't get the call from the driver telling me things hadn't gone well. I switched it back on immediately, of course. No call came, so I imagine things went ok. Tomorrow is Friday, his day off, so we'll have till Monday to figure how to make him go back. Maybe he'll be fine. We just don't know.

I hesitated to publish this, because it seems too much like a rant about how hard our life is. It isn't. Hard, I mean. We're lucky that we've got jobs that pay enough for emergency childcare when we need it, that we've got a very flexible child-minder, that we live close enough to work that we don't lose a lot of time in commuting, that there's two of us, that our time tables are such that we can box and cox without too much damage to our careers most of the time, and I could go on. But it's taking its toll, on our health - hence the title - as well as our careers. The fact that there is no obvious solution and that a lot of people are unsympathetic makes me wonder how many parents are in that situation and just don't bother talking about it. Talking about it with friends often leads to them saying 'most kids don't like going to school'. If you're in the same situation as we are, you know this isn't the same thing. And if  you want to talk about it, we're here. 

7 comments:

Roberta Wedge said...

You are doing the best you can, with love and patience. I couldn't do it!

Deb at aspie in the family said...

Thankyou for sharing your experiences. I have two autistic children and have experienced very similar challenges with my own son. He is now experiencing his second bout of school refusal and we are now working with teachers, psychologists and doctors to help him overcome his anxiety disorder and access school again.

Sam said...

Hi a mutual friend sent me the link to this blog post. I've got two autistic boys in my crew of five kids. I'm sorry you had such an unpleasant experience with the autism forum you tried. My first piece of advice (if you're still looking for some) would be to take notes on what he does each day so you can look for patterns that lead to the days of refusing to go to school. You can get the teachers at school in on the tracking as well. It will tell you if there are any specific instances at home or school that may trigger an episode of refusing to go to school or if there is something else going on.

I'd love to chat with you about your experiences living in and raising an autistic child in a culture different from my own.

Sandrine said...

Thank you all for your kind words! Max went to school every day this week, and seems to have had a very good time there. We can't rely on it carrying on till the summer, of course, but it's a really good start!
Sam: I'm not sure how 'in culture' we are bringing up our son, seeing as my husband and I have different nationalities, we live in a mostly ex-pat, academic Turkish - English speaking environment and send him to a French school... But I do have a post on raising a multilingual autistic child somewhere on this blog which you might find interesting. Looking forward to getting to know you better.

Sam said...

Sandrine that's a heady mix of cultural influences there that I would love to talk about. I'm very interested in anthropological explorations of autism. Check out Roy Grinker's "Unstrange Minds" for an idea of what I mean. He and his research team in South Korea just published a paper last year that puts the rate of prevalence of ASD as high as 1 in 38.

micheal jhonson said...

Took a lot of time to read but I really found this very interesting and informative, thank you buddy for sharing.
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