Posted 14 October 2005 - 05:37 PM
Hello Tez, my son has Sensory Integration Dysfunction also, but probably not as bad as your son.
We managed to get a Statement in place for him just as he started school, but it was really the diagnosis of ASD that got things moving. It has been a struggle to convince people that so many of his difficulties actually arise from SID or DSI, as his Occupational Therapist calls it. For example, he can barely hold a pencil because he doesn't get the right feedback from his hand; walking up and particularly down stairs is excruciatingly difficult for him, because he feels like he's stepping out of a plane when he puts his foot down on a step - he doesn't know where it is. And then there's all the other people looming up and barging into his space and freaking him out (leads to lashing out to keep people at bay) and noises. There are the obvious noises, like sirens and balloons popping ~(why do so many shops have balloons inthem; why do people insist that your child must have a balloon! Guaranteed to send him into hyperspace!), but also much more subtle ones, like the particular tone of a voice.
Fortunately for my son, he has had pretty good OT input since he was about four (he's now nearly six), consisting of SI therapy, but it's never enough. He has maybe four sessions a year, after which the OT says OK, let's discharge him now until any further problems arise. At which point, I point out that fine, he can walk downstairs now, but he still can't hold a pencil. It doesn't stop, just like that! And we are just trying to get him up to something approaching the capability of his peers, who also are constantly maturing and moving up in the scale in their own capability, like being able to put their own shoes on and get dressed themselves and play games together.... So we manage to eke out another set of sessions, but it should be more.
My huge bone of contention is that OT is apparently a HEALTH issue and therefore funded by health moneypots, and not an EDUCATION issue and can therefore not be included on a Statement, so my son's otherwise good Statement badly lets him down in one of the areas that he needs it most. My argument is always: how can he possibly learn when he is barely succeeding to survive each day in what to him is a mad, bad world full of sensory onslaught. His stress must be enormous. My understanding is that you CAN get OT included on a Statement if you battle hard enough, go to appeal and tribunal etc. We decided not to do this for my son because it would have delayed his badly-needed Statement for months, possibly a year, and that would have been so much time wasted. As it is, he has so far had a fantastic teacher and a superb LSA who are prepared to take on board the OT's advice, to a certain extent. His teacher commented last year that she could see how much difference OT has made to my son. Then why can't it be on the Statement??? It's a vital need to help him access the curriculum?
OK, rant over. It sounds to me from your post, Tez, that you have a much greater case than me for getting OT and whatever else is needed for your son on a Statement, and these are fundamentals that have to be in place before education even comes into it. Does he have OT? You really need one who is into DSI; my son's first OT discharged him on first meeting him and it was only when I went back and said no, look at him again (or else!)that he said, oh yeah. I diagnosed my son for him (because my elder son also has DSI, but ironically he is undersensitive to his environment, so bumps and crashes about to get MORE feedback - what a happy household!)
Anyway, sorry, because I haven't come up with a solution for you, but DSI is a fairly 'new' area in this country - it's better documented in the States. Carol Stock Kranowitz's book The Out-Sync-Child helped me enormously in the beginning.
And I can offer you one kernel of help, I hope: my son has improved. With understanding (lots of it) and support and help and assistance and therapy and LOTS and LOTS of input, he has improved - he can now even write his name. I cry everytime he does it.
All the best, Tez - keep us posted.