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God what do I do with my poor DS?

(475 Posts)
inappropriatelyemployed Fri 03-May-13 15:45:31

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 Mon 06-May-13 09:12:36

Reading streakys post reminded me of how truly awful it was for ds this time last year. Ds was a mess. He could not function at all. He cried hourly, was beyond controlling. He was incapable of going out. Barely eating. No normal life was possible.
A year later he is so happy. It beams out of him. I am so tired sometimes but it is so worth it. He has a chance of being the man he should be.

streakybacon Mon 06-May-13 09:30:55

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?

zzzzz Mon 06-May-13 09:45:35

Ds at school is very very disabled. Ds Home schooled is behind, very very different but ENabled. His language disorder (which was very very severe) is less of an issue. He is kind again and sometimes be is very funny.

School was cruel for him.

I realised if I left him there he would be ruined emotionally and academically.

Even if he learnt nothing academically at home he would be better off.

In reality the academic side is flourishing!

inappropriatelyemployed Mon 06-May-13 09:58:40

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.

zzzzz Mon 06-May-13 10:50:51

HE is a massive decision. For us it is a huge investment. If I'm honest I'm sad about some of the things I won't be doing now and the other children's lives will be different as a result. But it is only the same time as you would invest in a degree course. So much more important. So much more rewarding.

flowwithit Mon 06-May-13 10:51:04

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 timegrin

zzzzz Mon 06-May-13 10:53:13

And I love him so much and he is flowering.

zzzzz Mon 06-May-13 11:00:14

So much of the problems he was having with school are not really skills he needs for daily life. They are skills you need for institutionalised education.

It was one of the hardest things I have ever done, making that decision. I felt like we were stepping into an abyss. I still have days I wobble but they get further and further apart. We ALL love it.

inappropriatelyemployed Mon 06-May-13 18:50:01

Well EP emailed and recommended break from school. Blimey.

ouryve Mon 06-May-13 18:51:36

Wow!

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

MareeyaDolores Mon 06-May-13 19:59:05

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 grin.

inappropriatelyemployed Mon 06-May-13 19:59:49

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?

MareeyaDolores Mon 06-May-13 20:05:24

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

inappropriatelyemployed Mon 06-May-13 20:08:26

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

MareeyaDolores Mon 06-May-13 20:17:28

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.

MareeyaDolores Mon 06-May-13 20:19:05

blush typos

inappropriatelyemployed Mon 06-May-13 20:22:23

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.

ouryve Mon 06-May-13 20:42:40

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.

inappropriatelyemployed Mon 06-May-13 21:44:23

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.

ouryve Mon 06-May-13 21:55:26

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.

inappropriatelyemployed Mon 06-May-13 22:14:12

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.

streakybacon Tue 07-May-13 07:07:06

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. sad

inappropriatelyemployed Tue 07-May-13 07:31:55

"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.

streakybacon Tue 07-May-13 07:51:40

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.

Badvoc Tue 07-May-13 07:57:36

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

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