Starting to feel despondant!
Well, Sunbeam hasn’t been to school since February! We’ve had a difficult Summer although he did seem to be a little happier as he saw one or two friends but once the new school term started his mood dropped again. We managed to get his admission to the adolescent psychiatric unit postponed as he was looking forward to working on his favourite engine at the Dorset Steam Fair and he was due to start NVQ Level 1 engineering at our local college.
He managed to do the first week but couldn’t face the second week! Here we go again, I thought. However, he started cognitive behavioural therapy today and it seemed to go OK. He said he would try again on Thursday so I will have a word with the tutor and hopefully arrange to organise something for lunchtime, he would like to stay with the tutor so I’m hoping it won’t be a problem.
I went to a support group meeting the other week and there were 2 mums of older “boys” with AS. The “boys” are in their early 30’s but unable to work. One lives on the streets in London and the other suffers from depression an anxiety (just like Sunbeam). Now that Sunbeam is getting older and the services start to decrease (not that there’s all that much for teenagers with AS) I can imagine me shuffling around my local town with Sunbeam shadowing me!
On a more positive note I attended a fringe meeting at the Lib Dem conference hosted by the National Autistic Society! Was the only mum there in a room full of Lib Dem delegates and top NAS execs! We were divided into groups and asked to discuss a variety of topics to do with support, education etc and for the first time in years I felt I was being listened to and taken seriously by people who could do something about it. The result was that the points raised would then go for inclusion in the special educational needs policy by the LIB Dems! I know! I know! Not much chance of them getting in BUT the MP has cross party meetings and can put the points raised forward.
Following the meeting I e-mailed David Cameron and told him about the meeting and the points that were raised and I had a lovely e-mail back saying that my comments had been passed on the shadow minister for children’s services but he’d attached a report he commissioned last year about the difficulties parents experience in trying to get an educational assessment for their children with the outcome of having a statement of special educational needs. I was delighted to read that many difficulties we have experienced had been highlighted in the report, even that parents are actively dissuaded from pursuing an assessment for special educational needs.
I continue to fight for the right of my son to live his life in a positive and constructive way but I feel my biggest fight is to keep raising awareness of the injustices that are faced by people on the autistic spectrum.