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Marion

Help me explain???

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Can anyone help? My Asperger's son age 10 is desperate to be NT, works so hard at school to keep it together , school "don't have a problem" with him as he loves the headmaster and most of the teachers and desperately wants to please, but the sheer effort is seriously damaging his mental health. I pick him up at 3.15 and cant speak to him til at least 4 o'clock, his anxiety levels are so high, as soon as he gets to his "safe place" -home -we have huge meltdowns, smashing things, self harming, violence and serious "I wish I was dead" depression. School dont understand at all!! But they dont see it...

We have no statement, tried, but unless school support you its hopeless, it's a case of "forgive them father..." they dont understand, its hard to sit in a support group meeting next to people with kids who have 30, 35 hours 1-1 support.....but anyway...

I really do want my son's headmaster and some of the teachers to understand the mental stress my son is under on a day to day basis, I'm sure I read a really good article somewhere that explained that its typical that some AS kids display completely different behaviour at home and school but dont know where- can anyone help?

The only answer from the experts is to home educate- might have to eventually to reduce the stress -but he really wants to be in school-most of the time!!

 

PS New here, hello all,thanks in advance,Marion.

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Give HT a copy of Tony Atwood's book where he makes reference to the "Jekyll and Hyde" phenomenon between school and home!

 

A x

Edited by aro

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Hi Marion

 

WElcome to the forum.

 

I'm about to go to bed so will post more tomorrow, but just wanted to let you know I know what you are going through. My son always had difficulty in school but things really started to go wrong when he was about 10 and grew steadily worse over time. I had a long, stressful and frustrating few years of trying to get him help and support when the school reckoned he was fine! Every time they gave him a level of support it was always too late, because by then he'd gone beyond that level and needed more. This went on until he reached the first year of secondary school when he really did come to the end of the road. He was signed off sick from school and I ended up at tribunal last February. To cut an extremely long story short, he is now in a residential AS specific special school. He's only been there a few weeks but already the change is very telling. He's happier now because he has hope. He's 14 now btw.

 

I will find some of my earlier posts etc tomorrow. But meanwhile my advice is to be on an evidence gathering mission. Keep a diary of what works and what doesn't, what reactions he has to what, etc. Keep records of all correspondence with the school, health professionals, Drs, etc.

 

Flora

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Hiya, I thought I would say hello. I'm new too but seem to be addicted to this place already.

 

What started to get school to listen to me was to write a diary of everything he got upto that was causing upset and worry. I have also read that some people video their children having meltdowns and being challenging etc but mine always used to catch me doing that but you may have more success. I was lucky in a way in that when mine started year 3 the poo really hit the fan and the teachers saw a different side of him in terms of challenging behaviour at school and once he had shown his true colours he hasn't really stopped! He used to able hold it all together really well but once someone has seen him flip a few times he doesn't bother to cover it up with that person anymore. He now acts like himself in most situations because he can't seem to hold it in so much but it does mean that it's not all directed at me anymore!

 

Does your son tell you of situation that happened at school that he found hard, like in the playground, not understanding questions then getting told off for not doing the work etc. If he does write that in your diary too because the teacher may not be aware that he is not coping because he isn't telling her or asking for help - my ds never asks for help and rarely talks to the teacher or even looks at her! Mine used to get told off for constantly fidgeting and getting out of his chair, interupting, not listening, distracting others etc etc. I wasn't told about this until he reached year 3 and he was always upset about it because he didn't know why he was being told off because he wasn't aware of what he was doing most of the time.

 

Ive also heard that Martian in the Playground is a very good book to explain what an AS child goes through at school.

 

Not sure of that makes sence really, its late and I do waffle.

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Marion do you live in a Local Authority who has and Autism Outreach Team? The school might not understand but this team should and your son does NOT need a statement for the school to access the team.

 

I so know how you feel about sitting next to other parents whose children do have statements but the probability is that they had to fight to get them. I have two sons on the spectrum and neither one had a statement. I say had because at the end of the day we gave up the fight and home educated, but not before the elder of the two who was then aged 11 had a massive breakdown. Years of being unsupported and misunderstood finally took its toll.

 

I have to say that taking him out of school was the BEST thing that we ever did for him. His stress levels and his anxiety began to subside and so did his outbursts and aggression. Parents worry that they wont be able to teach their children themselves but I worried that my son would still be alive if I left him sitting in a system that would not support him.

 

I now run a support group and help other parents to fight for support for their children in school BUT you sometimes need a team like the Autism Outreach Team to go into a school and lay it on the line for them. It does not always work but it is worth contacting the LA and asking if they have such a team. You could also get the support of the CAMHS Team and or your son's Pead if he has one.

 

I have been where you are now and it is not nice. School thought my son was just fine. He has more star cards for good behaviour than any other child in his class but at home he was a walking volcano, spewing out his molten lava all over the house.

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Just the same here too - in fact almost every AS child I know is the same. J's a lot better now because we've done a lot of work on anger management, but he's still a very different child at home to the one they see in school. In fact, at his IEP review recently his teacher admitted that he'd been quite shocked when J had erupted in class one day - there had been a few times he'd lost control at break times but during class time he usually manages quite well, so this incident was totally beyond what they usually expect of him.

 

In fact I think that's the crux - the classroom is J's natural habitat and I think that's true of a lot of our kids. Loads of structure, you know exactly what you have to do and what's coming next, everyone's doing the same task or versions thereof, there are prompts and instructions and a teacher who will help if you get stuck. No problem. Plus, there's not a cupboardful of Dr Who and Star Wars within reach in your nearby bedroom to distract you. That's the problem for J - his distractions aren't necessarily things in front of him, but thoughts clogging up his head and preventing him from thinking clearly.

 

Our problem just now is less about after-school meltdowns but more to do with personality and ability differences between the two environments. Apparently J manages to organise himself reasonably well at school, focuses on work and can concentrate OK. But at home he's distracted by the slightest thing, can't focus at all and I have to virtually live his life for him. I absolutely cannot give him an instruction and be certain that it will be carried out without countless prompts and reminders from me. We waste a phenomenal amount of time on helping him be independent. But I can't get school to accept that he's so different at home to the child they see every day.

 

It's very wearing isn't it? No matter how hard we try to explain we always come across as paranoid parents, creating problems that aren't there!

 

Karen

x

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Marion, I couldn't believe it when I read your post because I am feeling exactly the same thing!

 

My son is 10, too, and school just don't see anything wrong. Meanwhile, he has just been referred to the child psychiatrist because of concerns over his mental health - but school say everything's fine. His anxiety levels are going through the roof. A big issue for him at the moment is worry about sports day - I mentioned this to his teacher on Friday and her answer was: 'well, don't worry about it,' to which I replied: 'Well, the point is that he IS worrying about it a lot.' 'Well, don't,' she said. What kind of help is that??????????? I'm considering taking him out of the school for the day, but have another son who will be taking part...

 

Marion do you live in a Local Authority who has and Autism Outreach Team? The school might not understand but this team should and your son does NOT need a statement for the school to access the team.

 

Our LEA does have an autism outreach team, but because school are telling them everything's fine they have dismissed him. What a pants service!!!

 

We are going to go all out to get him a Statement, and are preparing as much evidence as possible to try and support our application. We'll take it to tribunal if we have to. I don't see why we have to wait for him to have a breakdown before someone eventually does something to help him.

 

Sorry, have rattled this off v quickly so apologies if it's slightly incoherent.

 

Lizzie, grrrrrrrrrrr!

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Lizzie that is shocking that the AOT have been dismissed because school don't see a problem. That is the whole point of the team - they can see what the school can not :angry: Are you unable to access the team yourself? I would be doing my best to do so. I have to say that here CAMHS even go into our schools and bat for the parents and the AOT would go into the school and sit and observe for a whole day or if necessary send in one of their specially trained Nursery Nurses for a few weeks - yes they do do this. I can see now why our team are winning awards for their service.

 

Cat

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Lizzie that is shocking that the AOT have been dismissed because school don't see a problem. That is the whole point of the team - they can see what the school can not :angry: Are you unable to access the team yourself? I would be doing my best to do so. I have to say that here CAMHS even go into our schools and bat for the parents and the AOT would go into the school and sit and observe for a whole day or if necessary send in one of their specially trained Nursery Nurses for a few weeks - yes they do do this. I can see now why our team are winning awards for their service.

 

Cat

 

 

Sadly the service is stretched too thin and only has the resources to 'firefight', ie deal with crises or where a child is disruptive. My child will get to that point eventually, I'd just rather he didn't have to break down to do so.

 

Yes, I have tried to access the team myself, but they aren't answering my calls or emails.

 

My son is seeing the psyche at CAMHS, who has gone into school and last I heard tried to contact them about sports day, but again school just does nothing because they don't see it. Now he has been referred to the psychiatrist with talk of medication, but it's a long, long wait to see her!!

 

This says it all: :wallbash: :wallbash: :wallbash:

 

Marion, sorry to be full of doom and gloom. It is very frustrating and soooo upsetting. Welcome to the forum, hopefully some of these other lovely people can come up with something more helpful!!

 

Lizzie >:D<<'> >:D<

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Can anyone help? My Asperger's son age 10 is desperate to be NT, works so hard at school to keep it together , school "don't have a problem" with him as he loves the headmaster and most of the teachers and desperately wants to please, but the sheer effort is seriously damaging his mental health. I pick him up at 3.15 and cant speak to him til at least 4 o'clock, his anxiety levels are so high, as soon as he gets to his "safe place" -home -we have huge meltdowns, smashing things, self harming, violence and serious "I wish I was dead" depression. School dont understand at all!! But they dont see it...

We have no statement, tried, but unless school support you its hopeless, it's a case of "forgive them father..." they dont understand, its hard to sit in a support group meeting next to people with kids who have 30, 35 hours 1-1 support.....but anyway...

I really do want my son's headmaster and some of the teachers to understand the mental stress my son is under on a day to day basis, I'm sure I read a really good article somewhere that explained that its typical that some AS kids display completely different behaviour at home and school but dont know where- can anyone help?

The only answer from the experts is to home educate- might have to eventually to reduce the stress -but he really wants to be in school-most of the time!!

 

PS New here, hello all,thanks in advance,Marion.

 

 

My son hates school, very reluctant to go, he has a statement and the school are very supportive but for him its the enviorment that increases Js anxiety and he is scared of the teachers, or very reluctant to display the behaviours at school that are at home, I am pleased that J keeps it together at school and relieved his behaviour in school is what they call moderately disruptive, to withdrawn, then at hometime he is extreamly high, adgitated and at home demanding and attention seeking that leads to more severe distruptive behaviour if things have occured in the day at school.

 

 

I know that NAS have information on the differences of school home sanario from what it said is that at the end of the day school is structured and has set routines, there is subjects that can help them focus on their interests such as science and ICT which is why children with special needs tend to excell in these subjects, where there can be difficulties is unstructured times and interaction issues with other children, and when teachers dont have the time to deal with behaviours that are masking deeper anxiety issues, so they get misunderstood and this leaves the child very frustrated and by the time they are upset about it its the end of the school day, Js like a coil, been wound up all day slowly and surely that by the end of the day hes gone which is another reason he went to part time table.

 

I think when a child mental health is effected this is a clear sign that can not be ignored, it needs urgent medical attention and it should be well documented so that if his behaviour does begin to be displayed at school there not so surprised because they wont expect it and when children are backed into a corner when highly stressed they will react eventually.

 

I dont know why but I think sometimes schools water down behaviour too, or belittle the situation as they are aware once they start to share concerns its the school resources that will be used to support your child and once there is a little bit of progress they are quick to say its all better and the support goes.

 

I would try and find a quiet time and sit down with a pen and paper and try and get your son to share with you what really upsets him at school, what is it at school that makes him anxious, ask why he gets so angry at home, is there anything at school that bothers him.

 

it could be he has difficulties describing it, or knows what to do but cant do it in reality so stores it up, becomes so upset at home that he feels soo safe with you he lets it rip and shows it throw behaviour problems but the route cause will be much deeper, when J got really violent I seeked a private Psychologist and he had some intense art therapy sessions, what was revealed was that he had very deep anxieties and we worked throw these to share with school the problems, many was that he finds the classroom too busy, too noisy, the teachers information wasnt been understood and he was reluctant to ask for a repeat of instructions, over time he does a lot more behavioural behaviours that are now getting labeled stubborn, silly, attention seeking.

 

Today he left the premisis and home by ten am, even with support and even with the behaviours as listed his behaviour isnt extream, but he has many more at home that take ages to resettle him and I have many interventions to support him so I am more supportive towards his distress that can be soo deep it takes soo long to come to the surface.

 

 

JsMum

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Hi marion i think you have just discribed my daughter perfectly, she is currently being assessed by cahms, but we had to have meetings in school with head teacher, senco and governors to get a referal, it is so difficult to get people to understande the difference between dd at home and school, nothing has to happen to spark the meltdowns i think it is purely the release after 6 hours of trying to fit in. i have also started to keep a dairy and try to right everything in it. DD has stress balls and animals, also shiny pebbles that she rubs but these don't always work, at the moment she has taken to cut bits of her hair off, i have taken all of the scissors away as she also hits herself and i am really worried she will start using the scissors. i do find coming on the forum helpful as it good to know that we aren't the only ones going through difficult times. love Toni >:D<<'>

Edited by Toni

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Hi Marion, this sounds very similar to the problems I encountered with my son whilst in primary school. He's now 13 and, fortunately in a secondary school, who do seem to be more clued up on these conditions and have provisions/support in place for our children.

 

My son's particular problem at primary school was PE, because of his lack of co-ordination and the stick he'd take from other kids when he couldn't do the simple physical things they do as second nature. Due to the distress it was causing, I spoke to our consultant at the hospital who wrote to the headteacher explaining this and my son was excused from PE and allowed to spend time in the library instead.

 

I'm not saying exclusion from certain aspects of school is necessarily a good thing, but it may indeed help if you got a medical professional to contact the school instead of trying to deal with it yourself. Primary schools, in my experience, have very little knowledge and many times appear to think the parent is over-reacting. A letter from a doctor can change this and make them sit up and pay attention.

 

I would like to add that, since my son's been at secondary school, he takes part in PE quite happily and actually enjoys it for the first time in his life. We're very lucky that he attends a school now that are very aware of individual children's needs and I think this is probably the case with a lot of secondary schools today.

 

Hopefully, things will improve for you too when the transition comes, but for now, I'd advise keeping on the case of the school and involving medical professionals to back you up.

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Hi Marion, Oh dear,you seem to have tapped into something here......so many responding seem to have had similar experiences. Can't really add much that others haven't already suggested, but wishing you all the best. Sadie

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Thanks so much to everyone who replied, its not feeling so lonely here now!

Bit of a disaster with secondary school, my son is in school with 2 yr5 classes of 20 in each, contacted the secondary school to talk to the SENCO about secondary to be told that as the catchment areas have changed and my son wont get in!! If he had a statement....but of course he doesnt!

We bought our house in a dfferent village from school (but then it was in the catchment area) thinking it would be best-if he had problems at school it would't follow him home!! Feel totally useless, can't seem to do anything right, 39 kids going to the seconday school, Andrew having to go elsewhere, he couldnt cope, we'll apply, appeal etc but it's never-ending hassle isnt it, thanks again all, hope the sun shines and you have a great weekend, Marion

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you could also b descibing reece that is exactly wat he is like so end up with no support from school as they see nothing wrong

but his behaviour is off the wall wen he gets home and i feel i get no help as they always ask school wat hes like and they say no problems here Grrrrrrr

 

love donnaxxxx

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Here

Hi All....especially Marion and Sally.

Nellie a previous long serving Mod here started a thread that many people found helpful.See link above.

Karen.

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