Rotten, rotten day

[streakybacon]

Ds (9, AS), who has been doing incredibly well for so long with self-management strategies, has now been excluded for two days for assaulting a teacher. He's at home today and will spend Monday working in the Head's office. Apparently there was an incident in the yard at afternoon break, he was upset and angry and a teacher held him to try and calm him down. I haven?t got to the bottom of things (we talked for hours last night) as he?s suffered a mental blackout and can?t remember anything in the few minutes before two adults restrained him, so all he sees is that and can?t accept that they were trying to help him. Even so, I?m upset that they?ve continued to hold him long after it must have been clear to them that they were making things worse. Apparently several teachers physically carried him along the hall, trying to get him to a safe place to calm down. They couldn?t get him upstairs to the Head?s office as the staircase was too narrow, had to put him in the main office where he locked the door behind him and barricaded himself in with chairs, then hid all the phones and closed down all their computer programmes. He's called the Head every abusive word he could think of. He was determined to punish them for what they?d done to him. Ironically, the teacher who restrained him in the first place did so because she felt he was embarrassing himself in front of the school by his public anger - by her actions he's ended up utterly humiliated. How would other parents have felt if your AS child went into meltdown at school by being held and restrained by a teacher? Would you feel they'd handled it appropriately or not? I have to talk with the Head on Monday and would like others' views on this. I think they should have found a way to talk him down with limited physical contact.

When I went to pick him up the Head told me I needed to see J's consultant urgently and suggested I consider medication. I'm so upset - I've been arguing for medication for J for over two years and have been repeatedly fobbed off, and it's had to come to this and an observation by a professional before anyone will take it seriously. These meltdowns have been a way of life for us, off and on, for years but until someone with letters after their name sees it it's apparently not real.

So I have to take him to the GP this morning and insist on an urgent referral to a psychiatric consultant who will actualy take notice. For some bizarre reason, J's under someone who nobody else in my Asperger community has heard of, and nobody understands why he's never been seen by the psych who usualy works with autistic children. I feel utterly let down, but more angry and upset that my SON has been utterly let down. We've been saying ADHD since he was three, he's nearly ten, and in all that time he's been neglected and deprived of appropriate treatment.

Sorry for the rambling rant, I'm too upset to be coherent.
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I can see why you're upset, but I know that my son (7) needs restraint when in angry meltdown and I know that the school have to do it. There is no talking down an ASD child in full blown meltdown and so I have accepted that he has to be held when he's like that. I trust their judgement, but obviously you don't feel they handled this well and would plan with them for the future when restraint would be used. I hope that you get a consultant who helps. J has ADHD as well as autism and is on Straterra which does calm him a bit.

Thanks for replying.

J's anger is well known and documented, and has been discussed frequently. At his last school he was described by the Head as 'the most aggressive child with Asperger's I've ever known' yet still no action was taken to support him.

We've worked our socks off over the years with behaviour management and he's done remarkably well, but I now feel we've come to the end of what we can achieve with management alone and he now needs medical intervention as well. I've read many times, from both parents and experts in ADHD/AS alike, that behaviour management can have positive benefits in early stages but it's rarely long-lasting and if problems ARE from ADHD then in most cases medication is necessary to continue making progress.

As for diet - J's had a completely additive-free diet since he was a baby. He has a self-restricted diet anyway so only eats meat, veg and plain carbs, there's no combo foods with hidden nasties in them. He's one of those rare kids who doesn't like pop, sweets and crisps. We've also tried GF but it made no difference.

Honestly, I feel we've tried every avenue and we really do need to look at trialling medication at this stage.

Thanks for advice.

Sorry to hear about this. My DS who is also 9 has exactly these issues. He gets angry then starts to melt down and often then a teacher or TA goes to restrain him and he lashes out at them - despite me saying EVERY SINGLE TIME that they should not touch him. Last half term we had 2 exclusions for this amounting to a week and a half and have had exclusions most half terms whilst at school.

Exclusion does not work with AS children to 'show them' that their behaviour is too exgtreme - often they don't remember what happened and often have been pushed into their over reaction. Excluding in these circumstances is also against the provisions of the DDA (discriminating because of their disability - his reaction is because of his AS and has been caused by bad school management. Exclusion does not help the child in this case it is to 'prove' to staff and parents that schools are tough on 'bad' behaviour.

Seeking a CAMHS/psychologist referral is a good step to start to help him manage his own behaviour but school need to have a plan in place to manage his behaviour. Does he have a statement? He should have if his behaviour is this disruptive and well known at school and that should then provide some more support in school to help him cope - school should already have applied from this if they feel he needs an 'urgent' referral and is 'the most aggressive child etc etc'. If not they need to get onto it asap - it is not just 'your' problem but theirs as well. If they don't they are also going against the principles of Every Child Matters.

I have wanted to try medication for my DS for a while but my paed won't look at it until school start to treat him as a child with an ASD - and I have to say I agree with her it is their actions which cause these massive meltdowns and they are not treating him as AS in these situations. If you feel that the school do not treat your DS consistently as a child with an ASD despite his having a dx then they are leaving themselves wide open to discrimintaiton charges and it may well be worth pointing this out to them.

Sorry have gone on and ranted a bit, it is a subject close to my heart. HTH.

Streaky so sorry to hear about your dreadful day.
It was a similar situation that drove us to try medication for Ds who had a DX of ADHD/LD/S+LD at 5. Once on medication it did help to slow his extreme impulsivenes/ antsy/ thoughtless hazardous behaviour although it took a while to sort out an agreable medication and dose. He is better able to self regulate that over the top panicky anger now- well a bit more able!Once benefitting from medication it has become obvious that he has autism also. It was a very difficult decision but I got to that desparate stage where I would have tried almost anything to reduce the difficulties for my child. For my ds medication was helpful - not magical but certainly helpful to some degree - and that the help is cumalative.
The lack of skill and support in MS schools is apalling (feels hackles rising as I recall HT giving 6 yr old barely verbal ds a complex dressing down prior to exclusion for what boiled down to misunderstanding an verbal instruction!).
Hope Gp was helpful. Hugs to you I espect you need it!

Streaky my heart goes out to you. Been there too I'm afraid. Would I be right in thinking he's in mainstream??

I'm with you, I've been very upset at my son (11 with AS) being restrained at mainstream. Even with training, they don't really have a clue how to use it effectively. The few times they did it, it made him much, much worse and ruined the whole day. Clearly his anxiety levels are way too high and that is why he is melting down so often. My son got progressively more violent the longer he stayed in mainstream where the pressures and sensory stimulation was too high, and the teachers too unskilled for such a complex lad.

My son is now in a special school and is completely transformed. I just can't believe the difference in him. He is in with other kids with special needs, so no longer the odd kid, has a ratio of 1 adult to 3 kids and the teachers are highly trained and don't treat bad behaviour as the child being naughty. They are very firm with him and explain his choices and related consequences to help him make the correct choice. He also has pastoral support provided by a non-teacher and this makes all the difference too as he can go off into the 'chill-out' room when it is all too much and calm down. He was basically unteachable, and I was told this morning that he is the best behaved child in his school - I WAS STUNNED. One of his peers had 1/2 a dozen mainstream schools before being moved to special school, he was deemed too violent (he used to carry weapons such as sharpened pencils to 'protect' himself from constantly being restrained by teachers). He's a model student now too.

So what I'm saying is before you down the medication route, maybe consider if his school is the right one for him? Some kids just can't cope.

I hope things get sorted out for you both and big hugs.

Hi, and thanks so much for your support and feedback (and to others on my duplicate thread). Sorry I haven't been keeping up with the thread, too busy keeping J calm in the aftermath.

Tbh, this is the first grand-scale meltdown J's ever had while at school, although in the past we've been used to them happening regularly at home. However, because we've been working so intensively with management strategies over the past three years he's learned how to recognise his triggers and avoid escalations of this level, which is why I think school have underestimated the extent of his autism. I should stress, this is a relatively new school (yes, mainstream) - J moved here to start Y4 last September, and he was quite calm and settled when he arrived, having had the whole summer to calm down from the old one. They'd never even seen him lose his temper until about May this year so he'd been coping very well. But then that's the point - he's been 'coping' but they seem to have forgotten the underlying autism that was the reason we moved him there in the first place.

He doesn't have a statement, though I'm in the process of gathering evidence to make an application. He doesn't need classroom 1-1 because the classroom is his natural habitat - he thrives on learning and the class routine and structure, he's actually often described as a pleasure to teach. But in unstructured times he struggles, although again he's been doing incredibly well lately with learning how to manage friendly teasing and rough-and-tumble appropriately. The point is he has to be in these situations to learn how to handle them, and I do believe it's working for him, generally. However, flare-ups are inevitable but school needs to know how to handle them appropriately if and when they do.

We are already under CAMHS but they've never really given us much in the way of support - I guess we've made a rod for our own backs by coping too well, and working hard to devise practical strategies for J ourselves and seeing results. Nobody from CAMHS has seen J in person for four years, so all they know of him is a 45 min feedback, once a year, from us. I can't possibly tell them everything that's going on in that time so they're largely in the dark.

To be fair the exclusion was my choice - the Head had offered to mark him as medical absence but that would mean it wouldn't be reported. Exclusion highlights concerns and makes it formal, plus I've got more evidence of his needs to take on to the psychiatrist (got an urgent appointment for Tuesday pm).

It makes me so sad to hear so many of you saying you've experienced the same sort of thing with your children. Here we all are, crying out for help for our kids, and nobody takes any notice until they fall apart. It's shameful.

I've discovered this morning that one of J's friends had actually intervened and told the teachers he thought they should stop holding him as people were starting to stare - so much for minimising J's embarrassment, and if a 9 year old could see that what they were doing wasn't working, surely they could.

I really appreciate your support on this and am feeling more able to cope now. Just another day in the life! Thanks xxx

IPSEA are very good at the whole minefield that is the statementing process and there are model letters you can use. For the initial request you do not have to include a load of paperwork with this. You will need to write to the Chief Education Officer at your LEA and give them six weeks to reply.

Statements can also take about 6 months to set up if all is straightforward (and I warn you now it often is a convoluted and drawn out process).

www.ipsea.org.uk

There is also information on there about exclusions.

They are also very good to talk to but their phone lines are often busy.

Thanks Attila. I've spoken with IPSEA several times and they've always given very good advice. I'm actually pursuing the statement through Parent Partnership - our local branch is run by Barnardo's so is truly independent of LEA and they've been very helpful so far. I've been advised to give more than usual info in the initial application to ensure that they'll agree to assess, which is why it's taking so long. J's case isn't clear-cut so I have to make sure I convince them. Also, I'm very busy just now arranging care for my elderly mother so am struggling to find time to fit everything in - have been gathering info since June!!

Will have a look at the exclusion info too, thanks very much.

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How did the meeting go today?

Hi Dusty, and thanks for asking!

It went well, the Head is very keen to move forward and put plans in place to meet J's needs but there were some discrepancies between our accounts of what actually happened on Thurs so I think she's covering herself a little. They really ought to have had measures for tackling J if he lost control like this and frankly I'm not happy that he's been punished for it, but the aim is to get him the help he needs rather than apportioning blame so I'm prepared to draw a line under it as well and maintain good relationships so we can work together.

I'm going in to school on Weds with all J's home strategies, to discuss them with the Head and leave copies. She wasn't aware that last year's teacher had several of these and hadn't mentioned or referred to them (which IMO backs up that they've underestimated J's autism, which she denies), but at least she's keen to work with them now.

I've also mentioned my concerns about his class teacher's high expectations of him and recommended that she back off and remember his autism, take off some pressure because if she pushes him too far she'll lose him. It's a small school and he's with this teacher for two years - that's a long time in a bad relationship.

We're seeing the psychiatrist today at 4pm to discuss medication, and hoping to convince him that we've tried everything else and this is the only viable option we have left.

Thanks for your support, much appreciated.
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Well that sounds reasonably positive- hopefully they'll actually listen to you now. Good luck for this afternoon and for wed Keep us updated.

Just to update you on this. Although I still feel that school have underestimated J's autism I understand that they won't admit to that as it would open them up to questions about not being prepared to manage his SN properly, however to maintain good relationships and get J the support he needs, I'm prepared to draw a line and move on. The Head is very keen to learn about home strategies that work for J and I've met with her again this morning armed with a bundle of social stories and other successful tools, and we chatted for an hour on what works best and how to use them. I feel this is a good step forward and worth maintaining.

I met with J's psychiatrist yesterday afternoon and in short he agreed with everything we had to say - that we've run out of possibilities with behaviour management alone and it's time to trial medication, and that his presentation is leaning towards a dual dx with ADHD. He's agreed to pass J's case on to the psych that everyone else I know locally is under, who is more experienced in dual dx especially with children of J's age (even the psych seemed a bit confused as to why he'd had us all these years...), and he's arranging for her to speak with the Head direct about her concerns then phone me to arrange an appointment asap so as not to delay starting the trial.

J himself was back in school on Monday but isolated in the Head's office for the day. He's not allowed out at breaks all this week, until they get measures in place to ensure his and others' safety, and also to be seen to act on inappropriate behaviour both for J's sake and as a warning to others. I'm not entirely comfortable with this as I do believe J's meltdown stemmed from mismanagement, but without raising wider issues I can't prove it and I want to hang on to that good relationship with the Head, J's fine about it so I'm letting it go. I'd been a bit concerned about how his classmates would take to him when he returned, but when we arrived in the yard yesterday morning they all gathered round, yelling his nickname, clearly very pleased to see him and asking me lots of questions about whether he was back in lessons and if he was allowed to go swimming. It was very reassuring, and he had a great first day back. Even the lad he'd had the head bump with and had launched at was fine with him, staying in at pm break to play Hangman.

So we're on the right track, things are being put into place and J's settling back down again at both home and school. And for the first time in 5 years of CAMHS involvement they're recognising the wider problems and are prepared to help. All round good result (says Mrs Positive).

Thanks for your support MNers, it's helped a lot to have your feedback.
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Hi, Streaky.

I was really pleased to read your post and see that things are starting to move in the right direction. I know that things aren't perfect at school and it's totally frustrating for us to witness that. You are doing a great job with getting J the help he needs and finally thr professionals are starting to take you seriously. Hurrah!

Here's keeping everything crossed that this is going to be a new chapter in his education, with all of the support he deserves.

How are things with your mam? I still intend to email you -just been a manic few days here!
Take care

Well done getting so much organised so fast!
I went to an anger management seminar run by the NAS ( yesturday), for parents of kids with AS/ASD. One of the suggestions was making a written meltdown plan for school (such as it is important not to touch/ restrain x when he starts hitting himself as this will make him worse and he may hit or kick whoever tries to stop him). - so staff know how to help and what not to do. Hopefully it will not be needed!

How did you find out about the course magso? Was it on the NAS website?

No - I was mailshoted by the local active ADHD/ASD group, but apparently it is on the NAS website.
The seminars are part of the HELP2 program so should be on the website under that. Because of some funding they are running short (10-2)day seminars (in various locations uk wide) on various topics free to parents with children with Dx of AS/ASD. First time Ive got onto any ASD specific course!! Would have been so useful 3-4 years back!

Thanks for your positives, guys!

Magso, I did the Anger Management Help2 a couple of years ago and I can honestly say it was life-changing for me and J. We do a lot of work with 5 point scales to help him understand how anger develops, and how to manage it with calming strategies. Dustystar, check the courses out they really are very good. I've done them on social stories, sensory issues, bullying etc, they do one on sibling relationships too.

I'm feeling really positive now, agree with sibingrivalry that we're entering a new phase now and it feels good. (look forward to hearing from you!).
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Thanks I'll check them out. ds has only recently got his dx so i haven't had the chance to do any of the courses yet.

I did quite a few of mine before dx - they're quite approachable like that.
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