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sky

beginning to doubt myself

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hi everyone...could do with some advice please? :tearful: my son j is13 and severely autistic ,although with good understanding ,unless stressed.in the past year ,things have been getting steadily worse at school regarding his behaviour.he has become incontinent again and is lashing out at school.camhs have become involved and a caf report has been completed. he has been supplied witha quiet room for transitional periods and usually is 2-1 with staffing ,although school is looking to get a single male member of staff for hin.he has aquired a label of "aggressive" and is treated as such. at home things are much different....... he still has up and down times, but is a happy boy,affectionate.responsive to requests made of him ,and allowed[within his capabilities]to have some independence and make choices. an o.t. has just come round to see j and myself, and remarked how relaxed i am with him and in the way i speak to him.i realise that this is a "double ended sword" as this is almost definately not helping with how he is in school- where it seems to be the other extreme and he is not given freedom of movement at all.what is the answ3er??i am usually confident with the raising of my lovely son....but just want to do whats best for him!!! :wallbash:

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Hi, it sounds to me as if you are doing everything right at home and that school is where the stress lies for your son. I had the same with my son when he was younger, he was relaxed and easy at home, compliant and happy with his toys and familiar surroundings. As soon as he got to school he was wild and out of control, he'd run around knocking things off shelves, scream at the top of his voice, stamp on peoples' feet and laugh hysterically at the top of his voice! This behaviour was a total shock to me, I'd never seen him like this before, he was so, so placid and easy going at home. I'll always remember the Head asking me how I restrained him at home and I just stared at her dumbly in disbelief, I'd never had to restrain him, he'd never behaved like that at home.

 

I don't think what you're doing at home is leading to his bad behaviour at school. It sounds like he's just struggling to cope with the environment and lashing out and they need to have measures in place to deal with the reasons and consequences. Are school expecting you to deal with his behaviour when he's at school? I'm not sure what you can do, it sounds like an issue for school to deal with to me but I do know it is distressing for you.

 

~ Mel ~

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hi oxgirl...thanks so much for quick reply as feel so gutted :tearful: when you said about your son ,i thought about the other day when i collectesd my son from school taxi-he ran towards me ,and the escort shouted to me to be careful as he had had a bad day -only for j to throw his arms around me for a cuddle and a piggy-back ! they EXPECT him to be aggressive nowand the poor boy cant move unless he is shadowed by 2 members of staff.the quiet room he uses has nothing in it at all- i suggested sensory things but they were removed as were torn- but the consequence of this is that he tears his clothes nearly evrey day and has stripped off anf torn his pad into shreds- none of which happens at home. i think this is a result of boredom.i get the feeling that the school disapprove of myrelaxed attitude with him- i treat him as j who has autism ,but still j,wheras they are treating him as a text book case of autism and not as a sometimes frightened and confused little boy.however ,this is his hime and sanctuary and here he is loving and happy .i work as part ofhis school but on another site-and because of this i probably get more feedback about the problems than another parent but am finding it all very upsetting and worrying at the moment.thanks again

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Has he always been like this at school, or have things gotten worse recently? Do school know what triggers the behaviours? How happy do you feel with the school and would you consider looking for an alternative?

 

~ Mel ~

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Hi I can understand where you are coming from totally. I've had problems with my son for the past few years in particular and he lashed out at school, self harms, has to have 2:1 support etc. He is at the end of an in-patient assessment and its been decided that a residential placement is required to meet his needs. I know your son is younger but you may have to look into residential it could be worth talking to your social worker about (if you have one). If you don't want to go down that route then I would ask about alternative schooling.

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Hi sky -

If he's happy, responsive and non-aggressive at home then it doesn't sound as though you are getting too much wrong.

The only codical I'd add to that being what you mean by 'relaxed' with him. Being relaxed is great - exactly what he needs, just so long as there are also expectations, rules and boundaries. If by relaxed you mean he basically does what he wants when he wants, then it's a different kettle of fish, but that's not what I picked up from your post(?)

Obviously, school isn't home, and whether he likes it or not there are going to be more boundaries there and he's going to have to learn to cope with them, and if his response to those boundaries is aggression then you really have to work with the school to help him find some more appropriate responses. You do have to be very clear with him that aggression isn't acceptable, whether arising from frustration or anything else, and that you will 'back up' the school when he does behave aggressively. anything else will send mixed messages, which for a child with compromised understanding is far more 'stressful' than any sanction. What interventions do you use at home, and can these be replicated in school? Again, if they are 'real' strategies and they are effective (rather than just ignoring the behaviour or offering him attention/rewards) then school should be using them too.

 

I notice in your post you say 'I treat him as J who has autism whereas they treat him as a case of text book autism'... I'm not quite sure what that means, but I think in either case thinking about 'autism' is dangerous territory, because it leads to assumptions. I would just think about him as 'J', and respond to the behaviours as I would any other child, taking into account factors like the need for behhavioural management and two way compromise. The problem with thinking about 'autism' is that the world, like it or not, isn't autistic, and making a world for him that is 'autistic' reassures in the short term but disables in the long term. It's not normalisation' to think of his life in those terms, it's acceptance that the more concessions are made the more restricted his life will be, and trying to find the 'balance' between what he can achieve and what he can't achieve rather than accepting too little or pushing too hard for too much.

 

Hope that's helpful

 

L&P

 

BD

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Hi Sky,

 

Do you know if the school has looked at what is going on here? I work at a residential special school, and we have a Behavioural Specialist who constantly monitors the students. In a situation like this he talks to the school, home unit staff and parents to try to unpick a marked deterioration in behaviour.

 

I would start by asking them about this. I don't think you can support the school effectively until everyone has sat down and got to the bottom of why his behaviour has changed in the last year. As he is non-verbal, the onus is on all the adults involved, including parents, to look honestly at what is happening.

 

Very best,

 

Bid :)

Edited by bid

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hi mel- this has started in the last year since moving up a class. the problem is ,i think ,that he was moved away from his earlier class as ,although severely affected by autism , is also definately not "in his own world" and so was moved into a class with children ,not with asd,but other disabilities. j is usually described as "very complex"! however ,he cant cope with the sameclass routines as the others (group sessions etc) ,and so has his own timetable and LOTS of quiet room sessions - which although is a good thing for him to calm down etc.,is a shame as well, asj shows signs of really wanting to socialise-n he just finds it hard .school review coming up soon so have to think very carefully about maybe a change in school- tho this is pretty daunting:{ residential definately not an option for me - recognise it is best for some but dont want to go down that road as yet

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hi jeanneA- thanks for your reply. as i said in earlier post -dont want to go down residential route as yet - but a change of school has been in back of my mind for a while.as you have experienced - it is distressing to see your son portrayed as a different person that you know at home- oh, to be a fly on the wall sometimes!

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hi baddad- so much to reply to-thanks! first -when i say relaxed i mean in my manner towards himreally -and perhaps i didnt come over clearly about the autism bit as i see j as j -but obviously have to consider his hypersensitivity to certain stimulii and his anxiety levels which are a result of his autism. in fact that is what frustrates me about the school treating the autism rather than the child , in my opinion.i very rarely see aggression at home asthings seem to tick along quite nicely- and it is nipped in the budbefore it reaches the point of no return! on occasions it has happened( incidentally before school) j is directed to his room to calm down and it might seem simple, but s stern tone from me works wonders! i also try to give him the opportunity to make choices as much as i can and to achieve the best level of independence he can-he likes to sit away from me on a bus and is fine( under strict instructions to behave properly!) if we go into a shop - i will tell him to squeeze if it gets too much . i suppose thats making concessions but find it works for me to try to pre- empt a situation rather than let it escalate. however,if all else fails,as i said,a stern voice will work provided its done at the right time . schoolIS DIFFERENT -and that is where it gets difficult . unfortunately ,as j HAS lashed out, he is 2-1 ,which is probably not helping the anxiety. again, at home,his dad and i have always dealt with anything singly as feel that 2 p eople is intimidating. however, school is looking into resolving this by getting a single(male) member of staff for him .i dont think its boundries at school that is causing the aggression -rather too many demands that he cant cope with due to high anxiety levels- as he accepts boundaries at home withoutn aggression. thanks for your input

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I've had something similar, but the other way around.

My son was trying to comply and contain himself in school, probably because that was easier than him trying to find the words or person to tell. And it is now understood and detailed in reports that he does not have the emotional or sensory understanding to even know what to tell them. He was vomitting in school due to anxiety, but other than that (and really that should have been enough), school said they did not see anything. He was telling them "I can't take it anymore", but apparently not in the right 'voice', and so they thought he was joking.

 

In our situation it was coming out at home. Years earlier, it had been the other way around ie. self harm in school and everything fine at home.

 

What I would say is that those that have 'expertise' and 'training' and 'qualifications' in ASD know that this happens quite often.

 

He is in a special school. Does that have an autism unit, or a class for those on the spectrum? It sounded from one of your responses that it did and that they have moved him out of that class into a physical disabilities class? If his behaviour in school has deteriorated, and you do not have that behaviour in school, there is a strong indication that they have moved him into an inappropriate setting.

 

Have you spoken with anyone in school about this? Is anyone else apart from CAHMS involved and does the person from CAHMS have qualifications/experience of working with children with autism? As you say, you don't want your child to be labelled 'agressive' when it is the environment and approaches that are causing this response - however inappropriate that maybe.

 

If he is in a special school and has a Statement, what does it say in section 4 "placement". Has that changed now. They may have moved him because they had to fit in another more severely autistic child and so yours was moved out?? Even so, if he has a Statement that states "autism unit" or something similar, they have changed the placement without changing the Statement??

 

A meeting in school with everyone involved would be useful. If he has been calm and happy in school before, then this surely can be achieved again if they get the environment and support right.

Edited by Sally44

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My son was also considered much more capable than he actually was. I've just had the SALT report and it shows areas where his skills are 15 (where 8-13 is 'typical'), but in other crucial areas such a formulating language to speak he scored less than 1 where 3 is severe. The SALT has also agreed that the high scores 14-15 etc are due to rote echolalic learning and are not a true indication of ability.

Yet the school had placed him in a class where 8-13 was typical and wondered why he was not coping or making progress. And they withdrew alot of his support because they felt he could be independent. My son is able - as yours maybe - in some areas, but that does not necessarily mean they are functioning at that level across all skill sets because often they are not.

 

And it also does not mean they can cope with being independent in everything throughout the day every day. It is also a case of 'accumulation' of demands.

 

What you do about asking him to 'squeeze your hand' is a very good approach. It isn't about giving in to him, it is about teaching him to communicate his level of functioning from a coping point of view. I've taught my son to use a hand sign, which he has demonstrated he can use.

Edited by Sally44

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thanks sally - think you may well have hit the nail on the head about his class setting.the class he is in now is predominantly downs syndrome -very different needs to j.i have asked about him being moved back to the autism class but the space has been filled with a more severly autistic child- and told that j is more able. i think the problem is that he is probably somewhere in the middle. he was originally moved from the original class as there were more violent behaviours in the class that j was nervous of- now the alternative is a class that is not suited to him and that are finding it hard to deal with him-and that are turning him into an aggressive boy which he most certainly is not . its anxiety and unhappiness at the root of it.my son,like yours cant say what is upsetting him, can only demonstrate it in other ways which they are interpreting as aggression. nothing has changed in his statement. but thanks for pointing that out,as have review coming up and i will say they are not meeting his needs and keeping hin in a class where he is not suited.this behaviour deterioration and also incontinence started when he went into this class .i think you may be right and the reason for not moving him back is more to do with there being no room now ,rather than his capabilities. he has been to respite today and has had a wonderful time there- everything points to there being a problem with the school. thanks so much for your help .

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If he was in the unit before, and he was doing fine, then the school themselves will have that on record.

Check what his Statement says about placement. It is not his fault if they have moved him to make way for another child. That often happens simply because there are not enough places available.

The school cannot talk about his capabilities and 'making progress' (which is what every school placement has to achieve), when he has "deteriorated" socially and emotionally (if they now need 2-1 and he is being agressive in school), and he has "regressed" by becoming incontinent again.

 

Look at the Statement in part 4. Speak with IPSEA.org. about the placement.

 

What you don't want - which is what happened to me - is that I complained at the Annual Review and the LEA decided to do a total reassessment using the argument that they needed to acertain what his 'current' difficulties were. As part of that process they stripped away ALL the support he had in the Statement. My son deteriorated and is under Clinical Psychology and CAHMS and currently not in school.

 

If the placement says 'ASD unit', then they have to provide that. And you can use Judicial Review to force the LEA to do that. If the LEA get wind you may do that they can issue you with a re-assessment and you cannot refuse for the LEA to carry out a re-assessment - so get the advice from IPSEA now before the Annual Review so that you do have a solicitor lined up to take immediate action if needed.

 

If you do have a case for Judicial Review you would have to pay an upfront fee to the solicitor of around £350 and then the solicitor works on behalf of the child and you don't get any further charges.

 

Sounds very cloak and dagger stuff, but you need to be forewarned, as a re-assessment would mean 26 weeks to another final Statement and then probably having to Appeal = another 4-6 months and before you know it another year is gone.

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As I'm sure you are aware, a Statement is about identifying needs and difficulties in section 2, with section 3 setting out (quantifying and specifying in terms of hours of support and staffing provision), how those needs will be met. Sections 2 and 3 show the kind of placement needed in section 4.

 

So, it is about placing your son in the placement he needs to have his needs met and the provision provided, and NOT about changing his Statement to fit the placement/resources they have available. If there are no place left that is not your son's fault.

 

If they say that is the case, then make sure you get the right advice on how to move forward.

 

After an Annual Review the LEA can recommend to make changes. That maybe to change any section of the Statement - so look at the Statement part 4 and sort out what you are going to do BEFORE the Annual Review. You can appeal any change made (or not made) after an Annual Review, but again it is the time that takes for the LEA to amend the Statement and then you have to appeal to SEND and wait 4-6 months etc. If the Statement says "autism Unit" or "autism class", or "TEACCH approach/ASD approaches" etc that are not used in his current class (as he appears to be the only one on the spectrum in that class), then they are not fulfilling the current Statement and you have more power NOW to do something about it rather than waiting for the Annual Review.

Edited by Sally44

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thanks again for reply. i have to admit i am a bit naive about the schools obligations as,up to now, have put my trust in them.Just dug out j statement ,and section 4 quotes "a special school for pupils wiyh severe learning difficulties" in section 3 , it highlights the need for TEACHH.The class he was in formerly WAS a TEACHH class and the teacher really knew her stuff. the class he is in now obviously caters for the rest as a whole -tho have set up a separate desk for him which he seems not to use a lot as he uses his "quiet room" a LOT during the day .i feel helpless, as obviously cant see whats going on in the day to raise his anxiety. the quiet room is another issue.....he has started to tear his clothes on a daily basis - again something not encountered at home. also ,stripped off once and was tearing his pad . this is all very worrying

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Yeh school wasn't the most fun time for me, i think we struggle more no doubt, but i also think we are very kind and very sensitive people, as i am. I got bullied in primary school and secondary school but towards the end of secondary school started to interact more with others. I just think being sensitive opens you up more to being bullied, but it made me a hell of alot stronger now, at like 16-18 i was living my life without any real negativity, i was going out regularly and socialising. It's taken me about 6 years to start making some real progress again with my life, and there's still a long way to go yet. When you're exposed to negativity it's certain you'll become negative, and i've been trying to change my way of thinking which is finally starting to work!

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