So we have the perfect school

[insanityscratching]

Ds gets daily SALT and OT input, lots of 1 to 1, never in a group of more than 3 in an environment that meets his sensory needs staffed with people who are sensitive to his needs.
Home life runs like clockwork we are all sensitive to his difficulties and go out of our way to support him and make life easy for him.
He has friends now and has everything he wants every gadget and game he could wish for BUT he is as miserable as sin, withdrawing into himself again and resorting to the note writing. Friday's efforts were I hate my school and I hate my parents (nice )
So what more can we do? I have no idea how to make him happy or at least not miserable. Even he doesn't have any ideas how we can make school or home better for him.
Is this it do you think? Is this his personality? Will he always be like this? The prospect of x more number of years caring for him weighs me down the prospect of x more number of years dealing with the misery fills me with dread.

does or can he explain to you why? Is it possible its the normal hormonal child/teen feeling of he has everything so doesnt know what to aim for next? does he need a challenge of sorts?

I remember a post a while back about school (I think it was you) where we were coming to the assumption because he was used to everything going wrong he may not be coping of it all running smoothly and perhaps expecting it to go wrong at some point? (something like that anyway! :))

Sorry you are low its like trying to work are way through a fog with our children sometimes :(

So sorry I have nothing useful to add. How old is he?

It's ridiculous because the school are pushing his boundaries all the time and looking back the things he can and will do now compared to when he started is amazing. They do it in such tiny steps though that I don't think ds realises how he is progressing although we and they do go through it with him and he sees the progress checks in tutorials.
He is driving me mad and sometimes I would like to just say "FGS pack it in or bloody work out what would make you happy because I have done all I can now" but of course I'm mindful of what I say so as not to upset him and raise his stress levels.
I thought once school was sorted then the misery would go but obviously not and I'm getting a bit fed up with it now, he's seventeen and he won't be independent ever and I think that's hitting home now and the prospect of this indefinitely makes me want to weep

dd1 used to be a highly anxious child.

we sorted her school, and sheis in the perfect place (for her). thye too continually push, and have got her achieving/doing so much more than she ever could. her IEPs (changed every half term) are all completely ticked off, with a total new rewrite for the whole lot (they are pages long, not just usual 3 target stuff)

recently, her anxiety levels have gone through the roof again (and again, and again ). dh and I have been talking about it, and in part, we think it is because of the progress. obviously, dd1 feels a certain loss of control along with the breaking down of routines and changes that learning/becoming independent brings about.

but also, we realised that dd1 has always had these periods of high anxiety - they used to come every 10-12 months, and last for abit, driving us to distraction - lots of worry about stopping progress/regression, and then jsut when we were absolutely at the end of out tethers and on our knees with it all, something clicked into place developmentally, and it all improved again. kind of like brain filing, in a way. new skills being learned, and brain connections needing to be made/remade etc

and now that she is somewhere where she is learning so much more, at a much faster pace (to us, if not to her), then these episodes are coming around much more frequently - the reboot is needed far more often, iyswim.

Ds went through this temporarily. He went to a school that coukd meet his needs from one where he learnt nothing but where everything wa on his own agenda. New school stopped his own agenda and made him practice things he didn't want to.

Star do you think he's miserable because he is progressing? He hasn't got a list of what's wrong any more (is that a positive?) but lots of what used to be on his list are being addressed so he has friends, he is able to get out and about, he can speak etc. He is more like a teen now than he has ever been. Do you think that as much as he used to complain about all the things he couldn't do he actually felt safer than he does now he is being empowered to do them himself? Funnily enough as much as he says he hates school he has been joining in enthusiastically making plans for his college course in September and as much as he says he hates us he is happy in our company and hates it if like yesterday dh was out.

I think it's very common when moving to a specialist school, for children to have negative periods after an initial positive start.

DS is also in the right setting for his needs with daily SALT, OT, 1:1 and a tailored environment and he started with a honeymoon period when he became very compliant as he tends to be anxious to please, but it took several terms for more negative behaviours to appear. I know this was partly because he felt more challenged and also that it showed he felt more comfortable within the environment to feel able to object.

We fought very hard for our school (private special school) and were told by EPs, SALT etc that it was the only one that could meet DS's needs so it was frustrating when things seemed to dip. But I was told by our very experienced HT that it's a common pattern for students starting at the school. They have reassured me though that because they take such a gradual and targeted approach that students have always made progress and they have plenty of time (years) to work with DS and I'm sure that's the case with your DS too.

I think it's trickier when students have only managed to access the specialist curriculum for one or two years because often they only get transferred there in their late teens when previous placements have failed. The HT says there is a significant difference in the independence skills of student leavers who have managed to transfer at age 11 like DS compared to those who only started at age 14 or 15.

I can't say insanity.

I know too that as Ds has been made to try new things that he was being allowed to be unaware of in previous settings, he is discovering a world of things he's not very good at as he hasn't been practising them since birth like other children. It's interesting that his placement in a specialist setting, rather than a m/s one is actually where he is becoming aware of his difficulties.

He was blissfully ignorance and pandered to in the previous place.

Ds in his unit had the highest needs but he was also the most academically able and the oldest and so felt senior to his peers I suppose in that respect.
At his school he is still by far the most academically able but the focus is on real life skills and in that respect he is the least able so perhaps he feels a loss of status.
I think it will go some way to being addressed in September when he does college with the school's support as it is a more academic focus for him and one that his peers won't access because of the academics.
I think ds feels that there is value in exam passes even if the stress of obtaining them causes him overwhelming stress I'm not sure that the fact he can now shop independently after avoiding any supermarket for ten years holds the same sort of esteem to him even if for me it is a dream come true and a far greater achievement than his GCSEs.

I think staff in units (and mainstream) often focus on academic achievements at the expense of life skills. In many cases some parents are complicit in this, especially for those on the spectrum, as you say it boosts the student's esteem and they can use special interests, higher cognitive abilities etc and allows them to ignore their deficits in other areas. Have seen this happen at our local school where LA wanted DS to go.

Peer group suitability is very important and it was something we used to argue against a unit placement for our son, as he would have been the most academic there by far although he has severe needs in terms of his autism. I don't doubt that he would have gone down the road of compensating with exam successes if he'd gone there, but his independence skills would have suffered as they are just not taught to the same degree as in a specialist school. It is better for DS too that his peers at his school are just as academic as him, his ego took a bit of a battering at first but it means he can really communicate on their level. I think he would have been very isolated if he'd gone somewhere where he was way ahead of everyone else. Hopefully your DS will find suitable peers through his college course.