A year ago Peter was at a different school. He had a fabulous teacher; a true expert, but that alone was not enough. He needed the care staff (many of whom we were very fond of) to understand his needs. He needed a continuation of his specialist psychological therapy that was started when he was in hospital too but the senior staff, in their wisdom, and without reference to his specialist reports, disagreed.
Not enough about this school was right. He was 2 hours from home, scared, and unwell. Having lived through hell in mainstream school he thought that ‘special school’ would be better. That people would be trained to understand autism and know how to predict and meet his needs. He was slowly realising that this wasn’t the case and it frightened him. After all, if a specialist school can’t get it right for him what hope is there? If this is as good as life can get what is the point in having one? He was 11 years old.
I tried desperately to communicate with the school leaders.
Apparently, they didn’t need to listen to me or to read his expert reports because they knew ‘Children with Autism’. To vent my frustration is what I wrote at the time:
The staff know “Children with Autism*.” They know “Children with Autism” really well. The trouble is, I don’t know who Children with Autism is? I have never met him or her and I don’t understand why the staff keep talking about them to me? They keep telling me that because of Children with Autism they know how to help my son. My son is called Peter, not Children with Autism and since I don’t know Children with Autism, then it is impossible for me to know how similar he or she is to Peter. The senior staff who are talking to me about Children with Autism have only met Peter a couple of times but because of Children with Autism, they say know exactly what Peter needs. They know about his needs better than me in fact because of Children with Autism. I am really angry and I want to check that they know they are talking to me about Peter… that my son is Peter, not Children with Autism.
It turned out that there was no talking to the senior staff. They already knew it all as it happens. A little while later Peter, who never before had expressed his distress through disruptive behaviour was becoming hysterical and desperate. This incomprehensible change in his presentation led to restraints and property damage.
We had a meeting. The senior staff insisted that his behaviour was ‘normal’. I went cold. I knew that if he stayed there a day longer this behaviour and level of distress would remain and that eventually, with no other option available to him, it would be expressed through severely destructive behaviour. This would become his new normal. They would be right of course, it would be a self-fulfilling prophecy and in a year’s time, we would all be talking about how heroic we were to live with such difficult behaviour.
Peter never set foot in that school again.
It took him months to recover.
Not all specialist schools are equal it seems.
Choosing this school was impossible. I had no idea what to do, what to look for, what Peter needed (he had changed so much during his prolonged and severe dissociated regression) and not one professional would help. For more on this click here.
*Of course, autism isn’t detachable. Peter is autistic. He isn’t Peter with a side order of autism that he can take or leave, or grow out of, any more than he can the colour of his skin. He doesn’t suffer from it either; just like anyone else, he thrives when he is in an environment where his neurotype is the predominant one. I am learning that the language we use is important and trying to adjust from the popular and misguided ASD / ASC / person with…, to simply describing the way he is. Peter is a brother, a son, autistic and just fabulous.
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