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Does your HFA child have aggressive meltdowns on a regular basis at school?

(32 Posts)
MissHazeleyes Tue 18-Oct-11 18:34:49

Because right now I feel like I am the only one. Ds is 8 and very high functioning. He also has hypermobility and dyspraxia.

Ds was until recently in MS, I would be called in almost daily to help him calm down. He simply couldnt cope there. He is now in an ASD unit attached to a mainstream school, he has been there for a matter of days and has already had a couple of meltdowns where he has needed to be restrained today he has come home with marks on his arms from being restrained and a bruise on his face.

We do not have these issues at home and I am at my wits end. When these incidents are reported back to me they just sound utterly horrific and everyone seems so shaken and shocked by them. I am too, although I suppose having been dealing with them in the school environment for the past three years I am used to it.

What do we do? I feel like there is nowhere left to turn. We tried mainstream, we tried asd unit, nothing works, the only thing that works is him being at home where he is calm and happy. We live in a very Home Educating unfriendly area and life would be very difficult if we pulled him out to HE, I am beginning to think this really is the only option though. The agencies involved with him here though seem to think that he HAS to be forced into not having ASD, this is how it feels to me anyway. He HAS to be in school, he HAS to learn to adapt, what if he can't? What if he simply cannot change and adapt to suit the school system?

I just feel totally isolated and alone and I am sure ds does too, no amount of talking works, no amount of explaining to him that his behaviour are unacceptable works, nothing works. I honestly do not know where we go from here.

I am scared that even with diagnosis they will say it must be my parenting as all other help is in place, ie ASD unit, statement etc. As I say though nothing happens at home, he is happy and calm and a gentle child 98% of the time when here.

I am in despair.

purplewerepidj Tue 18-Oct-11 18:46:44

I think you need to give it more time. A few days is nothing for the children I've know with ASD to settle into a new environment.

I would, however, be querying why on earth they're restraining him, particularly to the point of leaving marks? In 6 years working with people with SN (mainly teens with ASD) I think I've been involved with incidents that severe two or three times

What strategies do you use at home, compared with what they use at school? Can you pin point what you're doing differently at home and get it down on paper to advise the staff? Although, generally ime what happens at home is that most behaviour is accepted and not challenged (I am not judging either approach, btw) When a child is in a school environment, behaviours which can easily be overlooked at home become disruptive, the child is asked to modify the behaviour, misunderstands/refuses, then becomes aggressive as the most effective means of communication...

Am I anywhere close? If not, ignore me wink

glitch Tue 18-Oct-11 18:48:24

My DS doesn't tend to have too many major meltdowns at home but that is because we do what we can to keep his life straightforward and can work around him if need be.
He is probably worse in school as he has to fit in with certain things, they can and do have ways of dealing with him, for instance he doesn't have to immediately join in things in PE but can wait until he is ready. They do have a job to try to teach him though so he has to follow rules sometimes which can make him liable to meltdown at some other point in the day (I think it is called rumbling).
He might be finding it especially hard at the moment with the transition into the new school. Lots of new rules and instructions, places and faces to get used to. Hopefully it will settle down for him.

creatovator Tue 18-Oct-11 18:50:09

Oh MissHazel - how awful. May I try to answer your question with my own experience. My DS diagnosis AS was in mainstream where it didn't work. Classroom had to be evacuated twice because of his behaviour. He moved to an ASD unit where they work really well with them to try to enable them to cope better. They concentrate on social skills and internal behaviour management. They said that it takes a while for the children who've been in mainstream to unlearn their coping mechanisms (i.e. meltdowns) and then learn new coping mechanisms. Things didn't change for DS overnight, in fact there were times when he seemed to be getting worse before he got better. Again it was more in the school environment that they saw some of the worst behaviour. However the staff are very well trained in autism, very well experienced and remain positive.

I wasn't happy to HE either and am so glad I've waited for DS to settle into the ASD unit. He's now very happy there most of the time. This is his 3rd year there and the best yet.

This does depend on the staff and their attitude and how they are working with him though. What are they saying to you? Do they know what triggers the meltdowns?

If they're any good they'll know its not your parenting and have probably seen it all before, though in our confidential hyper sensitive society they may not be able to tell you this.

Please feel free to ask me anything else and I really hope things get better for you soon. It's all hard at this stage.

purplewerepidj Tue 18-Oct-11 18:51:25

"My DS doesn't tend to have too many major meltdowns at home but that is because we do what we can to keep his life straightforward and can work around him if need be.
He is probably worse in school as he has to fit in with certain things"

^ This is what I was trying to say, but put much better than I did! grin

MissHazeleyes Tue 18-Oct-11 18:56:12

See this is what I think they will think purple. All behaviour is challenged here, usually with losing computer time, wii time or dvd time etc. Also outings will be cancelled if he is playing up, just the usual discipline things really that would work with an NT child. I have a "look" that freezes him in his tracks grin and he responds to me very well.

I think the meltdowns tend to be more because he is expected to do stuff that just would not arise at home, ie sitting in circle time, eating his snack there, whereas at his last school he ate his snack at his work station, this was the apparent reason for the meltdown today.

What should I say or do about the marks? I took his shirt off at swimming today and he had fingermarks on his arms. I have taken photos and I diarised the incident but I always do this about every incident at school.

MissHazeleyes Tue 18-Oct-11 18:57:30

I don't think we even TRY to keep life straightforward for him here, it just is. I have always been a stickler for routine, bedtimes, meals round table etc since dc were tiny.

purplewerepidj Tue 18-Oct-11 19:19:07

I may be prejudiced by having had to try and work with parents with a shall we say different attitude to yours? grin

Liaise with the school - speak to his Key Worker if you don't want to go to the class teacher, although they might be the same person - and say "this is what works, this is what doesn't work". Also, make it clear to your son that what happens at school will have an impact on what happens at home - so if he (for example) is aggressive to another child at school, the consequences will be the same as if he were aggressive to a sibling/friend.

One thing I've learned about the majority of the folk I've know with AS/ASD is that they struggle to transfer knowledge from one situation to the next - so 2 apples plus 2 apples = four apples, but 2 apples plus 2 bananas = wtf wink

ouryve Tue 18-Oct-11 19:37:52

DS1 (7, ASD, ADHD) is in mainstream and has meltdowns like this and times of change.

Moving to a new school is a biggy for most kids, but for your DS, going to a new school is HUGE. There's a whole new set of rules and expectations for him and a whole load of new people who haven't had time to work him out and who he hasn't had time to fathom out.

You definitely need to have a meeting with the staff who work with him most closely and work out what the triggers have been for him. My DS1 would flip out if he went to a school which did all the things that are good practice with ASD, such as visual timetables because he sees them as being told what to do (despite his need to know when he'll be doing certain things). Other children's autistic behaviours also really upset him (he finds his brother really hard to cope with because there are so many things he can't do which a typical 5 year old can do.) When DS1 is upset, people have to not try to soothe him because that upsets him even more. I'm sure your DS has his own equally explosive triggers which might not be immediately obvious to someone who doesn't know him well.

MissHazeleyes Tue 18-Oct-11 19:37:57

grin ok, thats ds all over.

I actually wrote a four page statement yesterday and let them have it with all of those details in. The thing with ds is there is just no hard and fast rule, what will work one day, won't work the next iyswim.

Would you expect there to be quite a transition period then? He has had a few months off school over the summer holidays and till we got this place and I can count on one hand the meltdowns we have had during that time. How long would you expect an ASD child with these kinds of issues to settle in a new placement? The ms environment he was in before was totally unsuitable and they just did not know how to handle him so a lot of his behaviours worked for him there ie not having to do subjects he found difficult.

Thanks so much for replying to me you have been so helpful and reassuring.

MissHazeleyes Tue 18-Oct-11 19:44:48

See that another thing ouryve there seems to be these "rules" of what WILL work with ASD kids, like visual timetables, timers, sensory rooms etc but ds changes from day to day, one day it would work, the next it wouldn't if feeling unwell or hot or cold or thirsty or he bumped his leg on the way through the door and so on, it could be anything really. One thing I know is there are no hard and fast rules for what will trigger ds off, although I do have a feel for it. Something might not bother him at all one day and then the next will tip him into a full scale meltdown. So its really hard to put a finger on the triggers. He has amazing days where he seems almost NT so I think they think right well we did this today so that worked and then he has awful days where it all goes wrong but they did the exact same thing.

I had one Ed Psych suggest a Pupil Referral Unit for him as she said he had control over his outbursts. It seems that unless he is doing it all day every day he is percieved to have a certain amount of control and when he does melt down is being naughty. I feel like I am constantly fighting against all these assumptions and just looking like a wishy washy parent sad

lisad123 Tue 18-Oct-11 19:51:19

I used to work in an EBD unit when I was younger and we were very unlucky if we have 2-3 restraints in a week BUT new children always took a while to settle. As for bruises, there should be none! angry unless he was in major danger of harming himself or others and difficult to catch hold of, normal restraint should never ever result in bruising sad all restraints should be documented by the school so if it continues make sure their reasoning is right.
Would give him a longer time to settle though.
Dd1 is never ever aggressive but dd2 is a hitter, stratcher and thrower! Her aim is very good grin

ouryve Tue 18-Oct-11 19:51:51

The first half term is always full of ups and downs for DS1, plus ends of terms, starts of terms, etc, often for a couple of weeks at a time. He had a horrendous week at the end of September and, just as he seemed to be settling, missed lunch a couple of times, then had a big meltdown on Friday, last week over being covered in dog dirt. DS2 is so much more laid back and flexible. His beloved 1:1 has been off sick for the past week and he's adapted really well and taken a shine to someone else who works at the school who he'd previously not taken any notice of.

purplewerepidj Tue 18-Oct-11 19:55:29

In residential, it's a minimum of three months to get to know a child.

That's a bare minimum.

Usually takes up to a month for the real behaviour to show, then you need at least two to start figuring out how to avoid the obvious triggers. Then another three to start to identify the less obvious triggers. All the while trying to encourage the child to trust you, and the other staff who have varying amounts of contact, all of whom have different ways of speaking/moving/smelling which are unpredictable for the child trying to figure them out...

I like the bucket analogy -

Everybody's anxiety is in their own personal bucket. Most people's bucket is about a quarter full with the basics - is my homework all done, will Johnny let me borrow his Power Ranger for kids; will I make it to the supermarket in time, have I got enough petrol for adults. Every so often, lots of anxieties will build up - Janey keeps calling me names, I don't understand times tables; Mum's ill, I can't pay the electric bill - the bucket overflows and the person has a cry, talks to a friend and sorts it out. The bucket goes back to being a quarter full.

For the person with ASD (also depression and other MH disorders) the bucket is always three quarters full. There's the usual stuff - homework/power ranger - plus the sensory - my teacher's smell makes me want to throw up but no one else notices/how do people concentrate in all this noise, I'll just have a little scream to drown out the irritating people - plus the ASD stuff - why do people walk away when I tell them all about <insert current fascination> which is the most interesting thing on the planet ever/why do they look at me like they trod in me when I do my lovely hand flap to tell them I'm pleased.

Is it any wonder the person with ASD finds it hard to cope when they're constantly in fight-or-flight in an alien world? wink

ouryve Tue 18-Oct-11 19:55:47

Our DS's do sound very alike, MissHazelEyes! winewinewine[chocolate]

DS1's outbursts are a definite panic, fight or flight reaction. After that awful week, I kept him off school on the Friday and he was totally wiped out by it all. He enjoys it no more than we do. sad

MissHazeleyes Tue 18-Oct-11 19:56:37

Well it is comforting to hear others stories thats for sure. I have an NT dd at the same school also and she is extremely co-operative, loves school and has a very healthy respect for the time out corner so maybe when they start judging my parenting they will also take her into account as well grin.

How long would you give to settle?

sugarcanmelt Tue 18-Oct-11 19:57:39

DS has HFA (and ADHD and dyspraxia) and he also had very severe meltdowns in school but much fewer at home. It's more common for children with ASD to 'hold it in' at school but then release the frustration at home and I always felt a bit guilty when going to SN parenting groups that I wasn't getting the worst of his meltdowns, but school was.

I've realised that he was much calmer at home because I'd adjusted my parenting to his needs - he's also an only child, so there wasn't as much conflict or change to deal with.

I agree with purplewerepidj, it's still early days and you should give it some time. But at the same time, I'd also be looking at the other options available, in case things don't improve. DS is now at residential school for HFA, but before we chose that, we looked at SN schools in nearby LAs and non-maintained day SN schools. If he is very HF (do you mean he is bright?) then local SN schools may not be able to meet his academic needs, even if they can contain his behaviour.

All of the restraints should be recorded and you have a right to see those records. I would be worried about the marks and perhaps asking about strategies to de-escalate before restraint becomes necessary. It should used as a last resort.

MissHazeleyes Tue 18-Oct-11 20:00:51

Do you find that he takes days even weeks to recover after them ouryve I have sometimes had to keep him off the day afterwards to recover.

I just sometimes wonder if he will ever really settle, if he will just endure the rest of his school days, establishing ever more aggressive ways of managing that he will never shake off.

"For the person with ASD (also depression and other MH disorders) the bucket is always three quarters full. There's the usual stuff - homework/power ranger - plus the sensory - my teacher's smell makes me want to throw up but no one else notices/how do people concentrate in all this noise, I'll just have a little scream to drown out the irritating people - plus the ASD stuff - why do people walk away when I tell them all about <insert current fascination> which is the most interesting thing on the planet ever/why do they look at me like they trod in me when I do my lovely hand flap to tell them I'm pleased. " That is ds and it made me cry reading it.

raspberryroop Tue 18-Oct-11 20:03:26

Misshazeleyes - some great ideas on the thread but as someone with a 13yr old who still has these issues an I just say do not discipline at home for what happens at school - talk about yes but do not punish -he needs a safe place to go to after school not to start all over again after 6 hours in a stressful environment!

purplewerepidj Tue 18-Oct-11 20:03:53

I'm sorry, I didn't mean to upset you sad and wine

ouryve Tue 18-Oct-11 20:07:40

He needs a good couple of sleeps to get right again. He has never gone more than about 4 or 5 days without a meltdown of sorts, even at home. Even as a toddler, he was always bouncing off the walls and alternating between completely manic and just plain pissed off with life. ADHD medication (Atomoxetine) has helped quite a lot with the bouncing off the walls thing, but made him better at being pissed off.

MissHazeleyes Tue 18-Oct-11 20:34:52

raspberryroop This is what I have always tried to do and has always been my instinct, I do talk to him about what has happened but don't sanction him for it. I was always worried that would make him feel totally hopeless.

sugarcanmelt When I say HFA I mean that to the average onlooker he would not appear autistic at all, the Paed told me that he would have been diagnosed with Aspergers except that he had speech delay so the diagnosis is HFA, is that right? He is very bright but only really about things he is interested in.

Can I ask what made you choose a residential school? I don't think it is something I could consider at this stage but I know someone else who has done this for her child too and he seems to be thriving there.

raspberryroop Tue 18-Oct-11 22:19:32

MissHazeleyes - trust your instincts - I am now Home Edding my 13 yr old with hopefully some afternoons at a very small local school (10 pupils only) if the LEA will pay - other children are just too stressful for him at the moment (puberty!) but he had 2 very successful years in a MS autistic unit.

TooJung Tue 18-Oct-11 23:34:53

From what you have written you are providing an environment at home which is responsive to his needs and in which he thrives with virtually no meltdowns.

I home educate a child I removed from school aged 10. So much upset had been experienced by him that it took a long time for him to calm down at home, well over a year.

So my vote is for considering home education before such a level of trauma has been caused. If the staff are physically and emotionally mishandling your son, do you really want to keep him there in the hope that their skills improve?

Come over to the Home Education section of Mumsnet and ask us some difficult questions. We have heard them all before smile

streakybacon Wed 19-Oct-11 08:18:30

Another one with similar experience to TooJung's. TWe took ds out of school to home education age 10, after years of negligence by two schools and the LEA overall, and a lazy 'wait and see' approach by the Health Authority. No support, no TA/keyworker, no day to day guidance - just constant punishment when he got it wrong and by the time we withdrew him he was an emotional wreck. By that time we had no option but to home educate because there were no other possibilities locally and the LEA's attitude was that he was just a naughty boy (they wouldn't agree to statutory assessment, much less a statement). He wasn't - he was a child with multiple problems that weren't being supported and the frustration he was living with daily was immense. He was reacting to an impossible situation and unrealistic expectations that were being places upon him.

BUT ... our experiences resulted from two dreadful schools who had no interest in supporting ds and we were backed up against a wall. I'd provided successful home-based strategies to school but they were chucked in a teacher's desk and never looked at, let alone implemented. If your son's school is more willing to engage with you then I'd certainly try that first, see if you can get them on board so you can work together with your son's best interest at heart. It may well be that he needs more time to settle but you have to feel confident that the school know what they are doing and are meeting his needs appropriately - if not then perhaps you need to look elsewhere for the right support.

Ds is now approaching 13 and is doing brilliantly. Like you, we give him the structure, discipline and firmness his AS/ADHD needs and rather than keep him away from challenging situations we encourage him to engage with them and adjust his tolerance gradually. He's now very independent - gets the bus and Metro into town and to meet friends, manages really well. For kids like ours, school is an overwhelming sensory experience and it doesn't leave enough headspace to learn and feel comfortable (purplepij's bucket theory is spot on grin), whereas at home you can manage that more in keeping with what your child can cope with each day. Ds has made amazing progress, both academically and socially, and I don't regret HE for a moment (though granted, it is knackering!), but that was OUR choice for OUR circumstances and only you can know when you've reached the end of the road with school for your son.

Check out HE Special forum - lots of good advice there from parents who home ed children with additional needs, and those who are considering it. And of course the very informative and friendly Mumsnet HE section smile.

Good luck.

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