Making Decisions

These days Julie attends school most days for a few hours and then comes home again.  The rest of her time she divides between hospital (as a day patient) and home, where she is supported by a cast of characters drawn from medical and social services, family and friends.  But chiefly she is supported by me.  If this support network is a web, then I am the spider, always there in the wings, and scurrying forward to repair it at the first sign of breakdown.

Last half term I worked on helping Julie to build up her time at school from just an hour here or there to longer blocks of time.  This was when most of my web was constructed, so that Julie had a system of support that she recognized and could use when she needed it.  Since half term we have got rather stuck in a rut, and though Julie shows no signs of going backwards, she cannot seem to make the transition to going to school more or less full time.  The level of support at school is probably a bit low for her, and she is still unable to handle working in a full classroom environment with 30 other pupils.

Months ago, when we were still moving forwards, I shared my plans with the hospital, obviously, and  at the time the next step on the moving forwards plan was to stop going to hospital on Friday mornings, and spend them in school instead.  We never made that step: Julie made it plain she had gone as far as she was comfortable; she would not go into mainstream classrooms, and she did not want to spend more time in the school.  I was loathe to split up Friday morning between school and home like the other days because Friday mornings are one of my rare opportunities to go into work and talk to my staff.  Without more support, it looked as if we would have to wait to take the next step when Julie felt she was ready. And rather than more support, we have less, after our outreach services were suddenly reduced without planning or consultation.

I was reluctantly coming to the conclusion that we were going to spend our winter ferrying Julie across the county to the hospital on Fridays.  It was frustrating but I could not see how to overcome her resistance.  However I had not allowed for the juggernaut that is hospital decision-making.  The idea that Julie might stop coming to them on Fridays had slowly percolated into their collective conscious.  It popped up at the last big planning meeting, but it was quite vague - she should stop coming "soon".  Then suddenly things started happening.  Just as our outreach was being withdrawn, I started hearing staff refer to "when Julie stops coming on Fridays".  It appears a date had been set, and  the date is next week.  Without discussing it with us, or the school, or indeed with anyone else, the hospital had just decided that it was time for her to stop coming to them. Who knows why.

I badly wanted to talk to them about this.  The last few weeks have been pretty grim: we have less support, Julie's care coordinator has gone on a long holiday, her mood has been down, she has self-harmed, and has actually spent less time in school than usual.  It seems a bad moment to decide to force her hand.  I phoned the hospital repeatedly to try to talk to them about it, but I just could not seem to have the right conversation with the right person.  No matter what I said, or how sympathetic staff were, the same date for "stopping Fridays" kept cropping up, in conversation, or occasionally on reports.  It was not that I was set against the move, but I did need to know that they had thought about the possible consequences.  I wanted them to hear my concerns and give me answers.

So from next week Julie will increase her hours at school, against her wishes.  It might be the push that she needs.  I would be very glad if she started to feel more settled at school, and it became the place where she spent most of her week.  But I cannot help but feel that there is a bit of a hole in my supporting web, and as usual, I am going to have to try to mend it.