asking school to adapt lesson for disabled child

[Marvin]

My son (age 5, ASD) has repeatedly been told off in music for being very disruptive. We have eventually got to the bottom of this with him: apparently there is loud recorded music with a particular part when all the 33 children play along loudly on instruments and shout. In common with many children with ASD, DS has hypersensitive hearing, and the school has been told several times and expereienced themselves in other settings that he finds recorded music and loud noise intolerable.

I am writing to school about this, and am looking for a way of saying something along the lines of it's not his misbehaving, it's you not addressing his disability - much as you wouldn't expect a child on crutches to join in the PE lessons in the same way as other children. Would you tell child-with-walking-problem off for not coping with PE? So why tell my child off for not coping with the loud noises?

Any coherent suggestions for wording this in a disability context?
Thanks.

[peachygirl]

I'm not sure how to phrase it but I can offer a possible strategy to use.
We have several children with ASD in school who have very sensitive hearing and we have found that ear defenders have been very succesful in reducing their stress in situations where thngs are too loud - assemblies etc.
The children can still hear what is going on but the noise levels are reduced greatly

[marina]

Is he statemented Marvin? I'd talk to the school's SENCO first and get him/her onside.
As you say, hypersensitivity to noise and clamour is such a common issue for children with ASD I am really the school is still not addressing this

[Marvin]

He is not statemented. He is on SA+ with LOTS of input from external advisors. We talk to SENCO in friendly way on VERY regualar basis. However, there have been SO MANY problems, that the music-lesson one hasn't come up yet - plus they haven't really told us what's going on there. They have addressed issues around noise levels in the lunch hall.

There are clear strategies they can use:
DS says there is one particualar song he can't cope with, and he can manage the rest of the lesson if he can avoid the loudest bit. There are at least one if not two TAs who could simply take him out for that song. ear defenders interesting suggestion though.

I am furious (bl**dy livid) that
(a) their response to his disruption as he acts out his distress is to tell him off, and
(b) this has been going on all year and their only mechanism to address it has been to tell him off, mark him down on his behaviour reward chart etc.

I need to get them to see it's NOT A MISBEHAVIOUR ISSUE it's a disability issue - they wouldn't tell a deaf child off for not singing in tune. argh.

[Marvin]

particular and regular

[gigglewitch]

hi marvin. can you explain to them what it feels like to have hypersensitivity to practically everything around you, in terms that he is in fact coping really well with lots of children, bright light and someone up front talking / telling him stuff - so the extra noise in a music session if going to overload his processing altogether?
We use music on a 1:1 basis with students with ASD and done that way the ones who are not verbal show amazing communication through percussion and stuff.
oh - and is there a way of saying to school that the whole thing might work out if your DS had a go at turning the volume on the recorded music, if you think it might work (think about it) because another thing we find with our 'lot' is that loud noise is fine when they are controlling how loud it is . Having said that, the other thirty-odd kids aren't so controllable. Five is very young for them to be expecting tolerances of any sort from him, and he must be doing really well to be where he is.

[Marvin]

Thank you for the comments - esp your lovely words. I am so used to DS being a 'problem' that the concept of him doing really well, and someone else being sad for him is deepky touching.

[Marvin]

deeply

[gigglewitch]

oh (((hugs))) marvin, you have given me a lumpy throat. It is so awful that children with ASD are so often labelled "naughty" / "disruptive" etc, we should just try figuring out how they tick and see that it is all frustration, or actually quite resourceful ways of taking themselves out of a situation they can't deal with.
There are lots of people on here who know tons of stuff about ASD and will hopefully have all kinds of ideas, so keep on bumping.
BTW, have you got an "autism adviser" in your LEA? (I know they exist because i have recently applied for this post in my education authority !) If so, then maybe the school could get some autism-specific training or advice.
I wonder with your DS being able to explain so well to you what parts of the music session he is ok with and which parts cause him a problem,(nine out of ten students I work with could not do this) whether they are almost 'forgetting' the exact nature of ASD and believing him to be more able to handle these situations than he actually is - yet.
Has anyone tried giving him a picture or symbol strip of what happens through the lesson (or assembly or whatever) so that he can see where the "loud" bit is? Then there are two options, either being forewarned might help him to build up tolerance to it, or otherwise he is given an opportunity to show that he would like to leave. There could possibly be a 'desensitisation' type programme for him if he had TA support : to start with he leaves as soon as the 'loud' bit begins, but edging up half a minute every few weeks - or whatever suits him? As well as telling the school that they are missing something (which of course they are) also try suggesting to them a way that they can improve the situation and meet your son's needs without having to compromise on the way that they organise their lesson. It sounds like they have a good structure and organisation to their session for your DS to have identified the different "bits" of it, so praise them for this, huge structure is just what someone with ASD needs. But as they're already doing so well-structured lessons, why don't they try this[whatever it might be] to make DS feel more in control, so that he won't feel the need to communicate in frustrated ways?
good luck.

[Marvin]

thanks gigglewitch. They are getting some more ASD specific advice - the music was just a little bit of a bigger problem picture with many aspects of the school day. The hard thing is explaining that rather than demanding that DS copes with it, they adjust for him - even if on an immediate basis it's enabling him to step outside for the little bit he finds too loud. (I'm not expecting them to change the whole lesson, just adapt a little bit of what he is expected to do - but for them to see it as a result of disability not a misdemeanour - back to the child-who-can't-walk example - it's much easier to see this with physical disabilites).

He copes with determination and bravery with so much, there is a huge underestimation of how hard it is for him.

It took a while (couple of hours) to help him to tell me how he feels about it: he is very able verbally about concrete things, but finds explaining 'feelings' very hard. But once we got to the concrete part of 'this bit' he knew exactly what the problem was.

[Marvin]

p.s. good luck with your application. Are you a teacher ATM?