Conductive Community

I am a parent of a bright quadriplegic 13 yr old who attends mainstream. He has over the years had c/e but not consistent enough. We had 1 year whereby we introduced at Primary school a conductor in place of a classroom assistant. This was good but after 1 year the conductor at school ended. With hindsight the problems as I see were: The Conductor had a hard job fitting everything in a mainstream setting, though at the time I did not quite appreciate just how alienated she may have felt working alone with my child. ie the kids in the class thought she was cruel because he complained so much. He had a bad attitude towards her. In fairness to me she had a lot at home going on which did complicate things also & were she in a different setting with a group, the problem solving which I felt was not happening at mainstream may have been more positive. Neverthe less I truly appreciated what we had in that year and I felt a lot more relaxed than I do right now. When our time with the conductor ended I carried on with the plinth programme befor school commenced & we bought in c/e consultancy to train the new t/a. This was awful as the t/a was more interested in her own ends and we were miserable for the whole year.

Our problem now is that my son is at secondary school, seemingly a very good one with a unit attached for special needs, I took along my continuation ideas re c/e and things were looking sort of ok!. Yes! Yes! we can do that, sort of thing.

We started out consultancy training healthcare assistants, he did bits and pieces as the problems were fitting in around lessons etc.

In January this year he had multi level surgery on his legs to correct a severe crouched gait. The op went very well and his legs are now lovely and straight. We went through physiotherapy for thr general rehabilitation period and have now c/e too.

Over the months I feel that life is in total turmoil, school is totally inconsistent, not just with therapy but what doesn't come home ie equipment, clothing/coat etc. not reading contact books, making sure he's drinking, eating healthy (getting fat now). On the therapy side it is so hit & miss, if there is a shortage of staff then he gets no exercise. He is getting no toilet training, just managing (or not!) by himself. He is eating as he prefers probably the same as at home with fork/fingers. (we fight over knife and fork at home but this is what we want for him).

He is on the Gifted and talented list at school for English and he is working well. Though we were sad for him that at the parents evening his english teacher said that he had noticed that he had not been invited to two events - (EXCLUSION!).

Learn to Learn teacher also told us that if it wasn't for him always being taken out for exercises he would have been chosen mentor for class, he had also missed the award ceremony for this as there were not enough staff. (EXCLUSION!).

He comes home from school now, all he wants to do is play games, he has tantrums, screams and shouts, is not willing to do anything to help himself and I am feeling so down. I have fought and fought for his future, on my own I feel, I have only just hung on to my marriage as the pressure is so great and though my husband says he loves us, just seems to switch off.

He works so well in a group when we go to c/e sessions and is so competitive and willing. We have to help him , he has to have more consistency physically otherwise what is the point of being bright. How will he ever work?

We have recently been to look at a special school, not that we wouldn't have to fight for it but though they could help him physically and say that he has a lot of potential, they feel that he would be held back academically. They feel that even if he had a 1:1 he would then feel isolated.

Are there any schools out there that could offer more than we are getting here?

Thank You for reading this. (all over place-sorry!)

Debbie