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 Did you have a moment of enlightenment when you suddenly saw the horror of what your ds was going through, and how wrong it was to keep fighting it? I certainly did - and I know an awful lot of people who keep pushing schools and LAs for help that'll never be enough because the system just doesn't fit for some children, and the only solution is for them not to be there. It must be absolute torture for them trying to function in hopeless conditions every day, and even worse with limited understanding of the situation and no idea how to end it. Still worse if communication difficulties mean they can't express how they feel so nobody can understand or help.

I remember the day I was called to school to take ds home and not bring him back. I'd already given notice that I'd deregister from the end of the week but once I'd done that they no longer wanted him. I went with him to the cloakroom to collect his things and he just fell, sobbing, against me - he was meltdown-ed out, and just weary and exhausted. I told him it was ok, he never had to come back to this again and at last he was safe. I swear to God, by the time we got back to the car he was two inches taller. The pressure on him must have been enormous but he started to recover the minute we walked out of the door.

I'm so glad your son is doing well too, zzzzz. It takes your breath away to see what our children are capable of, once you lift the stress, doesn't it?

It is really interesting to hear your experiences as I suspect DS is very much the same.

I think there is this pressure to believe being educated means being in school and as you say, for some, that is too much in whatever form school takes.

There is also the view that teaching them to 'fit in' now is important for later life. But I don't accept that either as children with developmental disorders develop at different levels and in different ways - like normal kids but much more pronounced. Just because they can't do something at 10 doesn't mean, with support and confidence, they can't learn how to adapt at 18. Destroying their confidence is the path to nowhere.

It is difficult because HE is a massive decision if you work but I think having an open mind at what works at different stages of a child's life is important. Unfortunately, our LA system which is solely driven by the protection of resources does not allow creative thinking. Even if, in the long run, this is much more cost effective.

Yes op HE is a massive decision and one we have thought of too. But i worry how hard it would be to make it work.
It's good to read the positive outcomes for others on here.
We have also been told that we should try to make school work for ds and the routine and structure is good for him, but it often doesn't seem like its doing him any good at all and it's difficult to know how long to keep trying without letting things go too far for ds who isn't great at communicating his feelings.
Your ds sounds more relaxed now which will help you relax a bit too.
Hope you manage to forget about it all for a few hours at the zoo and have a lovely time

Well EP emailed and recommended break from school. Blimey.

Wow!

Are you all the more determined to do it now, then?

I know we often whine on here about about various people potentially being in LAs' pockets. but it's really nice to be reminded of the others. Your EP sounds like a highly professional, child-focussed type .

Well I think it means DS can have a break from the school environment at least.

Should I still pursue the GP? Or see if not going back and forth to school helps?

Cover your a* at the GP, I'd say. Also no harm in seeing whether she has any bright ideas.

Yes. I will hav a quick chat I think. See if I can get an appointment.

I think you should go anyway. If an adult was this freaked out by approaching the workplace everyone would insist on them getting nedical help. The GP would be signing them off, referring for CBT, talking about meds options and secretly wondering about PTSD.

When it's a dc (especially with a disability) there somehow doesn't seem to be the same social perception of excessive fear being serious yet treatable. Which I think is simply wrong.

typos

I agree. I suppose the difficulty is that if you were placed in a very stressful work environment in which no reasonable person could cope, you would be advised to remove yourself from that - its not you, it's the job.

But I will chat it through.

But some people might thrive in that same stressful work environment, inappropriately.

It's pretty reasonable to assume that while some kids do thrive in a typical mainstream school (and many more kids are meh about it but have no choice) there will be some for whom the whole experience of having to muddle along with a load of other children, with all their noises and unpredictability, whilst simultaneously doing what the grown ups tell you to do in a way that is acceptable to them, according to rules, written and unwritten, is deeply traumatic.

Thanks. It is so sad isn't it? Two and a half years ago, we saw an independent EP who worked with DS, assessed him and talked to him for a couple of hours. She said to me after - was he like this before he started school? And I said no. She said 'this is a child who is not thriving in his environment'. I went back to school (his old school) and flexi schooled for 6 months. Within two months of that, we were out of that school and I HEd for 6 months.

Now I think we are back to that situation - he is not thriving in his environment is a good way of describing it. I have told him that is not his fault. He is so unlikely to want to talk to anyone about that though. He would find it so hard. Thank God for a decent LA EP and I'm glad we have a good GP.

The GP is our weak link. We saw the newer guy in the group, last week, though - the one who referred me for my joint problems when others wanted me to take tablets and go away. The first one to ever not grimace at DS1's bounciness and to crack a smile when he sat with his tongue out until I told him that it was alright to put it away, now. In a crisis, we've actively avoided going unless we've needed a prescription for something we can't get OTC for him.

The EP who has been assessing the boys seems good - though I shall reserve judgement until i find out what she recommends.

I think it makes all the difference if you have a decent GP. Ours is an absolute superstar, she listens, refers without question, believes and respects you. It makes such a difference.

Great news that the EP is on your side - also positive that she's been the one to suggest the break from school, rather than you have to push for it.

Yes, I'd see the GP to have everything documented on ds's records. It won't hurt and might even be useful for the paper trail.

Since my ds came out of school, I've bumped into several professionals who were involved in his assessments when he was younger, and they've ALL said off record that school doesn't work for children with autism, yet they're all directed to say that needs will be met and push for inclusion. It just isn't true, except for a handful of very lucky cases.

There's a world of difference between thriving and surviving, and too many people get the two mixed up.

"Surviving not thriving" - I think that about sums it up. You can just continue to force these kids I to the school environment, especially if they are compliant and want to please, as it seems like one more adjustment, one more programme, one more training course will make all the difference.

Ultimately, suppressing needs and who they are is not a road to mental well being at any age. With the right skills, they may be able to manage and adapt better as they get older but forcing them to do that now seems so pointless if it is damaging them.

I hasten to add that this has happened in a good, caring, inclusive school so you really have to wonder about the mainstream inclusion model for children with significant ASD needs.

Ds went to two uncaring schools and his experience was nothing short of barbaric. It still shames me that I let it go as long as I did, and let him suffer for so long, but I think it takes a while for the penny to drop that the professionals don't always know what's best for a child, regardless of what we're told.

When we saw my sons respitory paed and I told him I had taken Tom our of school to HE I was very worried what his reaction would be.
He said
"Well, he will learn more at home with you than he ever will in school"

This was from an experienced father of 4.
It's amazing how many teachers and hcps HE their kids.
What does that tell us? :(

Streaky...I feel the same about ds.
But I - and I laugh hollowly now - trusted the "experts" knew more than me about my own child.
I will never forgive myself.
My son is 9 and is off today on his first ever trip away from home on a school residential trip.
It's something I never thought would happen. Ever.
HE can be a platform for so many things...for us it proved to my son that his welfare was the most important thing for us (and I had a 15 month old at the time too so it wasn't easy!) and once he knew that we would never force him into an unhappy educational situation again he - of his own accord - started talking about going back into school.
We chose a small village a primary, one class per year. Very child centred.
It's been great for him.
Just because you HE now doesn't mean you will be HEing forever.
Good luck.