Wednesday, 1 September 2010

AA: A's Autism pt.2

Right so that was his first year at nursery and it was pretty much a disaster, a very expensive disaster. So onto year 2. By this time I had begged the SNIP team at the Sick KidsHospital to intervene and propose an alternative for A. The only thing they could offer us was a special needs nursery in the city. At least here he wouldn't stand out there.
As the mother of a child with a developmental disability, it's quite tough seeing kids with varying degrees of physical disabilities in the large numbers as we did during our time there. This new nursery was both a blessing and a curse. On the one hand, the staff were properly trained and the place already had an in-house team of specialists working in tandem with them and on the other, it was run by the local authority so the staff to pupil ratio wasn't sufficient and this meant that the kids with severe disabilities, who quite rightly demand more attention, took up a great deal of the staff's time at the expense of others. Also because a large number of the kids had more pronounced physical manifestations of their autism (Screaming, biting, pulling hair, rocking, repeating themselves, no eye contact,  nappies) A found it really stressful. We benefited from the place for seeing the appropriate professionals and for getting A a pretty hardcore therapy programme. An education would just have to wait for now.

Aside from this we were living in Edinburgh but had to move outside the city to ensure that A got an assisted place at a new school that was being built. Here, he would be in a separate classroom with other Autistic kids and would hopefully over time be able to spend some time in the mainstream classroom with his peer group. Places couldn't be guaranteed if you lived out with the local authority so we packed up and moved. During this year I gave up my jobs to work part time as a counsellor for the YWCA, a job that could let me access the crèche which was handy and I had started an access course at Edinburgh University with a view to getting a degree at some point after. I had to rethink our entire life if A was going to have a successful education.Our access to childcare services in the city had become blocked the minute we mentioned a diagnosis of autism so I had to stop working full time.

Because of that horrendous first year at nursery A had become withdrawn and refused to mix with kids in social settings. His language had become lazy, he would throw tantrums constantly of you pestered him do anything but there was no way I was watching him disappear into a world of his own. I observed him constantly, trying to work out what triggered an episode, what things comforted him, tried to figure out his language shortcuts and wondered what the hell I could do to make life easier for him. It was at this point that I looked into ABA or Applied Behaviour Analysis which is often mistakenly cited in America as a cure for autism.  ABA is the science of controlling and predicting human behaviour. Behaviour analysts reject the use of hypothetical constructs and focus on the observable relationship of behaviour to the environment. By functionally assessing the relationship between a targeted behaviour and the environment, the methods of ABA can be used to change that behaviour. Typically developing children learn without our intervention, the world around them provides the right conditions to learn language, play, and social skills. Children with autism learn much, much less easily from the environment. They  have the potential to learn , but it takes a very structured environment, one where conditions are optimized for acquiring the same skills that typical children learn "naturally." ABA is all about how to set up the environment to enable our kids to learn.

I spent ever spare minute researching this. Much of the literature and studies I read were in French and with the help of a friend who would translate the useful passages, I read everything I could get my hands on. The specialists here at that time, were sceptical of these approaches. The approach meant that every room in the house had to be changed, everything had to be sign posted, visual aids for the day, our routine, his day had to be made.

Without this section of the story turning into a made-for-TV-movie where I would be played by a young Susan Saradon, we worked hard to acclimatise A to our reality, our world and in some respects it worked...

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