"Professional Support" and the Book Trade

I had a strange realisation today.  My latest bruising encounter with the education system (more later) led me to mull over all sorts of things today, sifting through experiences and discoveries to try to find a way to communicate more effectively with "them", to be taken seriously.

I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital.  We left with a recommendation to see a speech therapist and little else.

I went home that night and got on the computer, looking for information.  Where did I look?  Amazon.com.   Today is the first time that I have wondered why on earth I did that?  Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked.  I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman.  I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.

As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information.  So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son.  Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help.  Instead there was fear, fear, fear, and grief, which there would have been anyway.  But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.

I feel a surge of activism coming on.  More next time on my experience today.

Pushing and shoving

The meeting with P's classroom teacher and the early years co-ordinator has come and gone.  Monitoring my own performance, I'd have to say I'm finally learning.  I did push my agenda yesterday, probably got too involved with my own thoughts at times, but at crucial points where I would normally feel uncomfortable about being "pushy", I didn't back down.  I don't think I've changed the face of the education lanscape, and with the benefit of hindsight realised I missed some opportunities to make more concrete demands, but I do believe I have made some fundamental alterations to their understanding of what P needs to be included and extended at school.  I was still strongly receiving the message that it mustn't be "extra" work for his sake, so that he is not stigmatised, but I feel fairly sure that this was their strategy for avoiding extra preparation on the teacher's part, as was the ever so nonchalant suggestion that feedback on some of what was discussed could be fitted into the school report (thus avoiding these apparently dreadfully onerous face-to-face meetings).

Q and I have had a crazy few days and so have not had a chance to debrief properly.  He did, however, tell me he thought I had "thrown" the co-ordinator.  Once upon a time I would have been disconcerted by the thought that my attempts to share information and work together had caused someone discomfort.  This time, I felt like that was a little independent confirmation that I had shifted the agenda a bit.  It is a big learning curve that the staff there are not really willing to embark upon, so I hope that my persistence has gotten through to them just a bit.

"Supporting" the AS child at school

Since P started school, I have battled my own anxieties about being insistent and making demands.  Nearing the end of the second year, I have come a long way, but I have certainly not mastered the art of advocacy.  A meeting is scheduled next week for which I am assiduously preparing, hoping not fumble yet another opportunity for supporting my son, by making those in charge of his education understand what he needs.

At the beginning of this year such a meeting was held, at my instigation. Everyone smiled at me. The new teacher seemed nervous; she had clearly never had an AS child before. She was handed a book by the teacher who co-ordinates the disability kids; no-one asked us if there were any materials we would regard as helpful.

There was lots more smiling, laughing, praise for my boy, how well he was doing. Whenever I tried to say, "that's great, so perhaps we could start extending him further", and gave an example of an area where he had difficulty, I was politely told by the person in charge, repeatedly, how many kids have that problem, how he doesn't stand out. This same woman talked to the new teacher about teaching him to recognise facial expressions. I tried to point out that he can do that fairly well; it's relating those expressions to internal states and other relevant connections that he needs help with. But she insisted on talking about him as if he were a little robot needing to be programmed with bunch of discreet emotional tags which he will somehow miraculously be able to employ just as his NT peers do. Actually, I don't think she thought that; I think she assumed that he, as any ASD kid, just has no hope of getting that far, so pictures of angry faces is about as far as it is worth going; more would be a waste of the teacher's time.

We got nothing that counts in that meeting. It took me back again to that first workshop, how revelatory it was to see my 2-year-old for the first time surrounded by little boys with short attention spans and emotional volatility. I can't blame them for not understanding; the teachers really need to have their eyes opened as I did that day. But since I can't drag them off to a group like that, they could at least have an attitude of professional curiosity. I am so tired of feeling like I am being tolerated. I know a lot, I have a lot to offer, I can and want to work with them for my son's betterment.

At a subsequent meeting, I thought I'd learned my lesson and was a lot more forward in specifying what I wanted for P. An arrangement that I regarded as ideal for regular informal communication between the teacher and myself was organised, with the blessing of an autism specialist from within the education system.  Once that overworked specialist was out of view, however, the school attempted to renege almost immediately.  I was told that it was unfair for a teacher to devote so much time and energy to one student.

If I've learnt anything, it's to turn down the emotional volume as much as I can when they pull this kind of stunt.  So instead of sleepless nights, tears, helplessness, I've tried hard to focus on what they are not getting, how I can make them understand, and how I can push myself to keep asking even after I've been told "no, something that I am very bad at.  This is not to say that I've banished all emotion; anger and frustration are particularly hard to keep at bay.  I did realise though that all my attempts to do things in a placating, submissive kind of way are failing.  At the next meeting, I will make sure that they know that I will keep asking extra support for my son, all the way through his time at their school.