God what do I do with my poor DS?

[inappropriatelyemployed]

He couldn't get to school at all today. He has only been going in for part of the day with me. He was wailing and crying about putting his uniform on and how he can't cope.

Where do we go from here? His third school. One period of HE already. School will do whatever they can but he can't cope and I worry I am damaging his mental health.

He finds it so hard to explain how he feels but he can';t cope with kids at school. We went to a special school to look around yesterday and he wouldn't look in the classes and got visibly stressed out at a glimpse of a child in a far off corridor.

What do you do?? CAMHS? HE? This can't go on.

zzzzz you're doing some amazing stuff .

We too spent the first year or so primarily on fun and relaxation, trying to bring back the happy child we used to have. It took a while because of the extent of damage, but we got there.

The main benefit for us was being able to spend as much time as we felt necessary on ds's social and personal development, which was being neglected in school and because he was in such a state in the evenings we couldn't do anything then, either.

He used to be incredibly aggressive at school and would lash out at the drop of a hat. We were able to give a high level of 1-1 support in social situations, watch for signs of losing control and pull him out before it got too much for him. I was also able to observe how vulnerable he was to bullying, something which I'd long suspected in school but which was always denied . He learned how to be resilient around unpleasant people and it's built his confidence.

Crucially we were able to pull him back to a comfort zone, from where we could challenge him in the knowledge that he could pull back again if he needed to - that made all the difference to his self-esteem and control of his anger. He's really rather placid now, as a result.

But most of all we found out who ds was when he wasn't under pressure, and that helped us to isolate elements of his diagnoses such as alexithymia, hypermobility and handwriting problems, and get help (medication) for his ADHD, which had been denied to us in the past because the schools wouldn't admit to the degree of management difficulty ds was presenting them.

It's all gone a bit tits-up with puberty, mind you, but I'm hoping it's a blip and we'll get him back at 17 (only three years to go ...)

Thanks Justa, but his anxiety seems to relate more specifically to school. He is happier out of it so I wouldn't want to medicate him to get him to go!

He has expressed a wish to consider an Indy SS. I'm not so sure but we will look into it. I think he likes the idea of playing with other children and can cope if they are 'like him'.

We went to see a friend and her son today who are HE. DS played brilliantly with him but he is a bit spectrummy too so they are both super straight with each other!

BTW - zzzz you rock. If you would care to open up a school, please put DS's name down.

Having a child like DS does make you realise how ridiculously outmoded schools are actually - I think they are fine for childcare and most kids clearly learn something. I'm not convinced you couldn't condense the learning but to a few years and do some of it over the internet and let kids do all the other stuff they do after school - swim, play music, play etc

I saw the thread but haven't been in the right place the last few days to click.

Let me read more. I suspect there are no certain answers.

Is his language good enough to spend a couple of days designing his perfect educational establishment. To talk about the benefits of education, what he would hope to gain, how he could access that, how you fit in, how your job/work fits in etc etc.

Record it, design it out of card, list things, talk about members of staff, peers, time of day, what the walls look like, what the lessons are like, how many peers, how often he will need to attend and what he will do in between, what you will do in between.

Is he mature enough to see that he has some responsibility in his own education, and that his actions impact on your family, and that he has some responsibility to at least think about what could work, how it could work and give it a try.

I feel from your posts that he trusts you to listen and try.

Sorry. The point of the exercise is to try to get to the bottom of all of the barriers. You could video it perhaps as clips might be useful for the future.

I have pulled my ds out of 2 schools to nothing, and refused to place him in one more from the start.

The FREEDOM, oh the FREEDOM and relief. I have never regretted it.

I have also moved as you know. Again, the relief that crept over our family once the decision had been made..........

Leaving something that is not working, doesn't mean you haven't tried hard enough, and can be a positive and active step.

I love reading about people's HE experiences and how everyone approaches it. When I first started nearly a year ago, the very thought filled me with horror and a sense of failure. At the time thought it was my failure but a year on, I now know it was the school's/system's failure, not mine!

Ultimately HE is not the correct solution for my DS because he is severely dyslexic (amongst other things) so needs very specialist tuition that I can't provide. Being dyslexic myself, my HE sessions have shown that long term (and especially as he gets older), I can't teach him forever. But in our year together I have learnt so much about him that I never would have done if he'd been at school. Like streakybacon says above, I have also seen how vulnerable he is to being bullied. Because of his illiteracy and dyspraxia problems, he was wide open to being bullied by the more able pupils. This was something the school had always denied but it has all come out in the last year that he was teased (maybe not bullied, but certainly teased - when does 'teasing' become 'bullying' to a vulnerable child?).

And we've had so much fun HEing! My most favourite HE session was the day that it was announced to the world that Richard III had been found in car park. In one swoop we were able to study history, science, genealogy, archaeology, and DNA testing in the most imaginative way possible to a small child who can't read and write. What is more fascinating to a small boy than a skull and bones found in a car park belonging to a long dead king! We had such fun that day (and for weeks) looking into everything we could about the find.

School and the 'system' does make things so difficult. They just want square pegs they can bang into square holes.

Roiselou - that sounds like great fun. HE is good for allowing you to capture the moment in the REAL world!

Zzz - you can recruit teachers to work at your school, you could plan and organise it!

Star - that is a simply fabulous idea. His new laptop (short break money!) arrived today. He is a dab hand at power points and youtube. I could leave him to do something fun around what he most wants out of education.

It helps me to know that I have HE as an option if ds1s middle school does not work out for him for whatever reason.
And ds2 for that matter.
I think the older the child the easier HE is tbh.
They can have much more input in their learning as star says.
(You ok star?)

Yes, Star. sorry I meant to ask that too? Hope you're alright??

Here's something to cheer me up -

the twunty ABA consultant who turned up at school four months ago on my instructions, who made DS cry by forcing him to sit in insight of the other children, who ignored me, who listened to and prioritized the view of DS's wholly useless NQT who thought he was just 'rude and selfish', who didn't bother to speak to DS, a 10 year old highly verbal boy, who produced a lengthy report (after two lengthy visits)full of graphs and long lists of yet more motoring tasks for his useless TA to do (yes, she would be highly objective in her monitoring) and who concluded DS just needed 'tweaks' to his schooling after commenting on the lovely, cosy warmth of useless teacher and crap TA...... has just chased up his £600 bill for his report!!

Yes just a report. He even charged two hours for him to write it!!

This bloke circulated his report to all and sundry before I had even seen it. It was full of complete shit - regurgitation of teacher/TAs whinging that DS didn't line up like everyone else and needed to be given set times in the day when he could speak to them to save him bothering them (after everyone else has spent 3 years getting him to talk!) Head thought it was a pile of shit and ignored the issue - DS has high levels of anxiety.

So, I thought, £600 for what? I complained to him about the way he had undertaken all this, disclosed his report without consent, upset DS and not even bothered to speak to him during two visits. I told him DS didn't need F*ING tweaks as he was out of school.

Response - he made some shit comment like 'it appears from what you say he is out of school' and then went on to moan that no one else had responded with their feedback about his report.

No one else? He means all the people who he copied in and who are not PAYING for his services. All of them thought what he was suggesting was useless.

I set out all my concerns.

The guy left it two months then contacts me today saying he hopes DS is now back at school. He ignores all the points I have raised but expresses his 'deep sadness' that his bill hasn't been paid and what a shame it is that he was not allowed to continue to 'shape' DS's education. WTF!!!!

Seriously, these people seem to know jack shit about Aspies and anxiety and should say so. He was just going to dump highly complex monitoring on the TA and then set DS on a path of 'learnign how to listen to people' because that really is the core of his problems.....oh that and lining up or sitting on a chair rather than the carpet.

£600? I thought people who were ABA consultants would be above all the "does he take sugar" carp

Leaving aside everything else(!), disclosing the report without parental consent is appalling! My DS reports are stamped all over that they are not to be disclosed without parental consent! Is there a professional body you can complain to?

I would refuse to pay and tell him to take you to small claims court. When he does, then tell the judge that he disclosed it to everyone without permission.

Anything soothing behind the bar, btw?

DS2 has been screechy all day - probably because he was out on a school trip, yesterday and not helped by there being no internet at school, today.

DS1 is ornery. And won't leave DS2 alone.

And my guts are getting in on the action.

I know. I think it is shocking that he circulated a report without consent. He didn't even say it was a mistake. He was full of 'I didn't appreciate there would be a problem, I thought we were working as a team'.

Yes, but I am paying you not them. His report could have been very undermining if everyone else had not agreed that he had got DS's profile very wrong.

It was full of crap like - we don't use words like 'anxiety' as what do they mean and they are judgments...!!! Yet he doesn't mind using words like non-compliant and tantrum. Very judgmental if you ask me.

So he wanted the TA to spend time spotting when DS was refusing to do anything and analysing why. So if crap TA was being unreasonable (not an unusual occurrence) and DS was stressing, she would probably record this as DS tantrumming wouldn't she? Cue expensive ABA programme to make him do as he s told.

Talk about heading in the wrong direction.

I think they are used to being paid to work in schools to help non verbal children with challenging behaviour and they an ascribe whatever motivation they like to that behaviour to justify an intervention to 'normalise' them.

This is clearly heavily based on the views of others and hardly objective. How the hell could they possibly distinguish between a sensory response and one for another motivation? Bollocks, shmollocks if you ask me - for Aspies anyway.

Oh and I don't think there is a 'professional body' for ABA peeps is there? Probably part of the problem.

He must be in cloud cuckoo land if he thinks anything to do with SEN is 'team work'! At the very least he should have sent it to you first for your comments, and only after your revisions (and only with permission) sent it on to everyone else.

Exactly. I suspect it was deliberate. He seemed to be very enamoured of the NQT who was very good at using the 'I know we have to make adjustments for DS but I worry how he is going to cope long term if he is not in class all the time, every day'.

Yes, don't we all, but the answer is not to force him to be in class all day, every day because then he really can't cope and ends up being out of school altogether.

Oh look, isn't that just what has happened.

I think he wanted to deliberately circulate that view in the expectation others would disagree with me. They didn't.

That and the fact that he thinks he is the dogs bollocks which is, again, my experience with ABA consultants. They act like they are mini gods who can tell what a child wants or needs just by looking at them. Why bother actually talking to them??