Tuesday, 6 May 2014

Story Fifty One - Routine

A quote from the independent psychologist's report on 16th August 2010 (This is the one the council didn't want me to see and sat on it until 25th October).

"Minimal attention has been given to Steven's autism".

Routine is the foundation stone of Steven's life. It keeps anxiety to a level he can manage and allows him to enjoy the things that form the routine. Take away the routine and his anxiety rises to such a peak that the very same things that play a part in the routine are no longer enjoyable but a source of threat.

Take for example, the Mencap Pool. Steven has been going there every Friday evening and Sunday morning since he was 11. So, the routine of going to the pool is the foundation stone. The building block on top of the foundation stone is the swimming - Steven likes swimming and that keeps him calm and settled. The block on top of the swimming is the people Steven meets at the pool. Steven likes his friends he meets there and that provides the enjoyment from the trip. But without the familiarity of the routine, the swimming and the meeting of his friends becomes problematic.

The Unit could never accept this. There were hardly any routines in the Unit and this must have made Steven's anxiety unbearable for him. How could there be routines? Steven never knew from one day to the next, who would be working with him and what he would be doing. Whenever he tried to instigate his own routine, he would have to negotiate with the staff and other residents. And all his old routines from home - the things he did with me, his mealtimes, bathtimes, the things he liked doing (his dvds and his computer) were all suddenly thrown up in the air.

I kept trying to point this out to the Unit as a reason for his difficult behaviour. But they turned it around so that I became the problem. I "pander" to Steven too much. I let him "control" the homespace. They couldn't see that it was not about pandering or being controlled but creating the space for him to feel safe.

I kept being told that Steven "had to adapt". He had to learn to be more flexible. He had to learn to negotiate his wants and his time with others. All good life skills, they claimed. They couldn't see that, no matter how worthy those goals might have been, they were pointless without the basic foundation stone of a routine in place. Steven's stress levels would be so high that he wasn't in a place to learn something new.

This impasse persisted all the way to court. Despite my protestations, the psychologist's report, the IMCA's report, the court expert's reports, nothing changed the professional view. Scary.

No comments:

Post a Comment