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.

[ouryve]

DS1 isn't completely scared of other kids, inappropriately but limits his exposure to them. His class is 75% boys, so, even in year 4, they get into a lot of rough and tumble during down time and he will join in with this, since he likes the stimulation and he knows the rules (to an extent). If group work is required, or organised play, or the second they are out of the school doors, he will blank them and even run away, even boys he gets on with. He is very much on the periphery and I'm making the point at this AR that his social needs are unable to be met in this situation.

[inappropriatelyemployed]

Ouvrye - DS has a couple of kids he trusts but he knows he is different and I think this is deeply hurtful to him. I think he dreams of being like the kids he sees on the tv and he thought moving to secondary school would be like 'Diary of a Wimpy Kid' but I think he's realising it is not like that for him.

He doesn't say this. He doesn't say much but he seems sad. He wanted to stay in his room today and watch the 'Suite life of sack and Cody' on a loop. He got angry with us for interrupting him.

I wonder if he is depressed too

[flowwithit]

Oh dear it's so difficult I don't know what else to say really because that sounds similar to my ds. I think it hits hard the realisation moving to secondary and the emotional/social gap seems so much bigger all of a sudden. I notice how much more grown up the boys are from my ds primary school. It must be very hard our ds to cope with that. My ds loves diary of wimpy kid too movies and books read over and over. I wish I had answers and I know how you must be feeling its heartbreaking to see them struggle so much and not be able to fix it. I hope you make some progress soon

[streakybacon]

I'd say HE too.

You can have a statement maintained when you HE - some LAs will try to cease it but legally they have a duty towards children identified as having SENs so it has to be with your agreement. Insist it's kept up so that you can continue to get any supports possible that are laid out in it, plus you may also need it in the future.

When my son was deregistered at age 10 he was a mess, and like you I feared for his mental health if we kept him in the school system - it just didn't work for him and support was minimal, and in fact much of what was provided was damaging to him. He needed a very long time to recover from his experiences and he wasn't able to join even very small HE groups without close supervision for well over a year.

This is why I'd be cautious about staying on a school roll and holding out for LA home tuition. You can't guarantee that tutors allocated to you will have SEN awareness and your son could find that a challenge, and it might even damage him further. Plus, they'd want to provide tuition on their terms, not yours, and if your son's not ready for it because of long-term stress then the LA won't take kindly to it. Also I hear that a lot of home/hospital provision can be erratic and often not worth its while - in some cases it's just LAs ticking boxes to show they're 'providing tuition'.

Also, if you were to pursue a placement at special school at this time, before your son's had a chance to recover, the likelihood of failure is higher. Do you think he could cope with settling into a new school in the next six months? If you think not, then wait awhile till he's more stable.

In your position I'd HE outright so that you can be in control of your son's development, both academic and personal, though you'd still get an annual review of his statement. In practice this could just be a formality to keep it going, and I'd suggest you do that so that it's up to date for when you're ready to return your son to the school system.

I'll admit that I'm speaking from my own experience with a disinterested and unhelpful school and LA and I appreciate that things might be different where you are, but I think it makes sense to proceed with caution.

Whatever you do it seems clear that you can't continue like this as your son is being harmed by a system that isn't right for him, and you need to act to protect him. Best of luck to you all.

[inappropriatelyemployed]

Thanks Streaky. I completely understand what you are saying and the last thing we would want is a succession of inappropriate teachers.

It may be some HE will be the answer in the short term but I am wondering long-term if we can't find a special school, whether a more flexible package is the answer for him. That is why I am interested to get a really good EP involved.

It needs some thought but in the immediate term, I can't send him back. I've just tried to entice him out with a trip to the zoo and he has said 'I don't think I'm well' but doesn't know what's wrong. Maybe he's coming down with something or maybe he feels miserable. It's so hard to tell!!

[streakybacon]

Since he already has a statement in place you might find your LA will allow you access to their EP service, but it's something you'd need to check out. LAs don't have a set budget for home education, though they can make provision if they choose - but in this climate of cutbacks that's not very likely. EP is meant to be a statutory service but LAs interpret the legality their own way and can refuse.

I've got the LA EP involved in ds's case - she did assessment for exam access arrangements a few months ago and as I've just applied for a statement she's used those discussions as a basis for her contribution to the SA. She is very helpful, but doesn't provide any practical developmental work for ds - her involvement is purely assessment and admin, and even then I had to involve my MP to get to her. But it varies between LAs so you'd need to find out what's available where you are.

If you're (understandably) cautious about taking the plunge into HE, why not consider signing him off sick for the meantime, during which time you can check out the options regarding what services will still be available to you/him once he's no longer on the school roll and what the LA can do for you, look into special schools and take it from there. If you get pressure from the LA (EWO service) to push him back to school before he's ready, then you could make the decision to deregister. It seems to me he needs to be away from his current school urgently so you can start repairing him and getting him ready for the next stage, whatever path you choose.

For now though, let him know you're on his side and working on solutions. I'm sure he'll find it hard to put into words how he's feeling as it's such an unusual set of circumstances for anyone. Perhaps that's why he doesn't want to go out today too.

[inappropriatelyemployed]

Thanks streaky. We are going to get an independent EP involved so this might give us a sense of direction/some ideas long term.

I agree with you in the short term, he needs some time away and I will go and see the GP. Is this enough to get him signed off or will he need to go to CAMHS. I must admit CAMHS scare me as I have heard bad things about their lack of AS knowledges locally.

Our SLT is onside completely and has done a report setting out his conversations with her. EP has also acknowledged difficulties.

I will have a chat with GP.

[streakybacon]

I know that things have been deteriorating with your son for some time, so with that in mind it might be an idea to write down some of the changes that have happened in the last few months to show how poorly he's coping, and ask for it to be added to his medical notes. Start a paper trail so that it can be shown from the outset that you have his interests at heart and you're doing all you can to meet his needs, whether that be through home education or local authority provision. I actually think you'll do ok in this as your long term intention is for a suitable special school place - the LA may well bend over to help you in that case, but sadly nothing is guaranteed.

CAMHS is primarily about mental health, for which they are often pretty good but they're not so great for developmental disorders. This is why you get mixed reports regionally. It's worth a try though - you might be one of the lucky ones.

Good luck with the EP and GP.

[inappropriatelyemployed]

Thanks. That is a good idea. I shall write a little summary for the GP. There is a paper trail as DS has written stuff for ARs and IEP reviews about how he is feeling and I have tried my best to get people involved and ask for advice at every step of the way.

[streakybacon]

The GP can sign him off but I'm not sure for how long. I did this with ds a few weeks before we deregistered - he was off a week and was only back a couple of days before we realised it just wasn't going to work. Your GP will be able to advise if he can continue giving sick notes, I'd have thought. Anyway, you're likely to wait several weeks if not months to get a referral into CAMHS so s/he may have to.

[inappropriatelyemployed]

Thanks. He is shutting himself off today again, wanting to watch a Disney tv programme he has suddenly become obsessed with.

We've tried offering all the usual enticements which would get him outside - zoo, trip to London, Legoland. He just wants to be left alone.

It isn't like him at all. He can usually be persuaded outside. I suspect he is very tired and that isn't helping. He says he's not worried about anything. This isn't normal behaviour for him though.

I really wouldn't usually allow it but I suspect I am best leaving him be for today.

I've not got DS2 saying I'm ill and I don't want to go to school. He's started crying every morning because DS1 is coming home early and was really upset when he stayed off on Friday.

[streakybacon]

This should go in your notes for the GP. It could be early signs of depression and would justify being signed off from school.

He probably is tired. Anxiety like he's experiencing is utterly knackering .

It astonishes me that, as adults, if we go to the doctor feeling sad and stressed they advise us to change jobs if that's the cause. Yet with children we tell them they just have to get on with it and force them back to school, even when it's obviously what's making them stressed and miserable. If adults can't be resilient under those conditions, it's madness to think that children should.

I wouldn't take him to school tomorrow - he doesn't sound as though he's up to it at all .

[Badvoc]

Totally agree.
It sounds to me like he needs a goal break but of course that's easy to say, ESP when you have another dc who doesn't understand why the other gets to have time off :(
If he were an adult he would be being told to rest, do things he enjoys, even go on holiday.
For me, taking ds out of school for a year was absolutely the right thing to do.
He is now back at school and doing well, but moves to middle school in sept so......who knows?

[Badvoc]

Total break, not goal break!
Bloody auto correct!
Gah.

[inappropriatelyemployed]

Thanks guys. I agree which is why I have been so hesitant about pushing him into school even if he will come in with me.

I knew he would end up withdrawing completely if it got too much.

To be honest, it's not like anyone is advising against this. OT and EP both know but have nothing to offer. School will do whatever will help.

Bitchface LA Education officer will doubtless say 'force him in' but who is she and what does she know? Stupid cow has just written a letter after I complained about the lack of OT for 6 months telling me that there was OT - obviously some secret programme that neither me nor school or the TA knew about!!

[streakybacon]

If Bitchface does indeed take that line with you, just calmly tell her that you won't be subjecting him to any more harm than he's already suffered. If you get your GP onside she won't be able to argue with you, and less so if you get to the point of deregistering.

His needs have to come first now, not her bloody attendance statistics.

How is he now?

[MareeyaDolores]

Bitchface will undoubtedly call social services on you.

Ring them yourself first, so school will host the inevitable CAF before witchlady badmouths you to SS and creates a load of paperwork and hassle, whilst deliberately severing your contacts with anyone who's ever been helpful.

[MareeyaDolores]

and yes, I know you're a lawyer, but the stupidity of some (not all: really not all, I've genuinely heard of some pretty good ones) LA officers knows no bounds

[inappropriatelyemployed]

Thanks. I have involved my solicitor as the LA have done nothing to assist with this and we will be taking action.

I have also emailed the EP all the way through this deteriorating process, asking for advice and assistance at every stage. I have had very little save to suggest I stay with him and see if he can tolerate a short time in school. I have asked whether that is really the right thing to do if he says he can't cope and have been responded to with an eerie but deafening silence!

DS is holed up watching re-runs on the computer. We have offered to take him out shopping for a bike (he can't ride one but has been really wanting one) but he says no. He hasn't been chasing us for food today either. I had a chat and he said he just wants to be left alone

I said we would really like to go out together tomorrow as a family and asked where he would like to go. I made suggestions. He said 'if I go out it will only be into the garden'

I said - this isn't usual for you. He said 'I'm not usual I have Aspergers' .

I didn't want to out words in his mouth but I said 'have you had enough of people at the moment?' And he said 'precisely'

Blimey, what do you do? Maybe he's coming down with something but even then this is VERY unlike him.

Do I take him with me to the GP too or get an appointment to chat to her without him? Perhaps if I take DH too, he can take DS out if we need to talk. I will ask when I ring up for an emergency appointment.

[MareeyaDolores]

IE, I doubt it matters. An emergency appointment tomorrow would only scratch the surface I presume, whichever way you do it, she's most likely going to say 'make a follow-up appointment'.

Either you'll end up going back without DS for a proper chat or going back with him to say hi. Happily, it's not whether you take him out of school, it's just how to go about it for tactical purposes at this stage. Do you think it would help your ds to know that?

There's a lot more to life than school (thank goodness)

[inappropriatelyemployed]

Thanks again. You have been a real help. It is so hard to talk about this stuff with people who haven't been through it.

DS said at his AR, through a written piece he did, that AS might life hard for him. He has been saying for ages that he has no one to share his worries with too.

I have bought the usual Aspie books and big him up all the time but I think, as you say, this is a developmental stage of realising he is different and not trusting those not like him. He does ok with fellow Aspies though.

He really won't engage in even the gentlest of chats about AS now and whereas he was once interested, he now doesn't want to talk about it at all.

[inappropriatelyemployed]

I do too. But the thing is, he doesn't see it that way. In fact, in his summary for his AR, he said something like 'mum tells me all the things I'm good at ....etc but I beg to differ, AS ruins my life'

I have to listen to that.