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Advice needed about school -very long and full of woe

(28 Posts)
WhenWillTheBuildersFinish Tue 23-Oct-12 20:17:42

DS ASD age 10. Multiple Sensory hypersensitivity but Auditory particularly bad.
Forced to move schools in September as previous school couldn't 'meet his needs'.
New school said they could but LEA only provide 15 hours 1;1. School have no money to provide any further help. So son only attends school for the mornings. It is an unofficial exclusion.

Son has history of self harm, cannot work independantly and needs constant prompting. Cannot write properly and has severe frustration issues which 4 years of intervention from so called professionals has not improved.

He is in top sets. previous school told me he was working way above his peers level but new school tell me he shows no inclination or aptitude and can't understand why previous school said it.
He tests (WISC) as High Average and Superior but with low average processing speed, so we know he is bright but slow. EP has said he qualifies for extra time for exams. He has never coped with anything on a 'timer' as he panics and becomes flustered.

But since moving schools he has become progressively worse behaviourally. He cries when asked to do any literacy as it is 'boring' he has verbal outbursts and is removed from the class. He then proceeds to headbutt the walls and punch himself in the head. Consequently he is now refusing to do school work in school with his 1;1 present. He is only at school for 3 hours per day. The school cannot deal with him as there is no TA in the class, just a teacher and 30 other kids. I understand how disruptive all this is for the other kids.
The school tell me he is deliberately avoiding work, but he will then bring the work home and complete it in his own time with no outbursts and totally calm and engaged with the topic. Unfortunately, as he is not doing much work at all in school time it is all being sent home. He is so slow that it is taking around 4-5 hours per day just to get through the maths and literacy for that day.

This means I have to spend the entire afternoon and evening prompting him, explaining to him, going through a work plan, rough draft, final copy etc. Yesterday his work took 6 hours, today 4 hours. Husband has no hot meal when he comes in, house is a mess. It's getting too much. This is year 6 of primary.

LEA want him to go to a Unit in mainstream for Secondary School but we have to get between here and next September, the panel still has to agree to this (meets in 3 weeks). He is currently in process of statementing.

How can I get him to stop crying and running away in school? How can I get him to do his work at a better speed. Obviously the other kids are finishing the work in a 1 hour session (40 mins really after the teacher explains) but he is taking 2-3 hours to do the same work.

The school is saying he is deliberately avoiding the work by having a meltdown but he knows damn well he has to bring it home to do and is happy to do that.

Head said today he couldn't see any point my son being there as he 'doesn't want to learn', and he is referring for full exclusion.

His science work was 'make a circuit to light a bulb', while he had the box of components out he built a fully functioning radio in 10 minutes, you can tune different channels and it has adjustable volume!

What do I do! Help someone, I am at my wits end!

bochead Tue 23-Oct-12 20:45:30

My son went to pieces in reception - wasn't till a couple of years after he'd left the school we pinned down a key cause. He has auditory hypersensivity and his blummin classroom was situated over the boiler room!

My ideas (& they are ONLY ideas btw!).

1. Buy a pair of ear defenders - ekidz seems to be a fairly decent brand and you can get em delivered via amazon fairly fast.
2. Get an OT with knowledge of sensory integration issues into school ASAP to prescribe a sensory diet. This is your key priority as without this info he could fail in ANY random setting MS or SS. Do whatever you have to do to make this happen.
3. Caudwell children's charity will fund a two week course of auditory integration therapy OR the listening programme is a longer term course of treatment that can be done at home (but sadly costs £1000-£1600).

Go to the IPSEA website and read up on exclusion. It'll help no end if you know what's what from a legal standpoint as you wait for the statement process to wind it's miserably slow course to it's conclusion. Ditto the SN code of practice.

AgnesDiPesto Tue 23-Oct-12 20:54:42

Get LA to pay for home tuition on basis needs 'education otherwise than at school' (this is how ABA programmes are provided, its a recognised category of education under Education Act)?
Internet tuition at home funded by LA?
How much support will have in unit at secondary? Perhaps look for a specialist HFA / AS school for secondary? - I know someone trying to do this whose DS is 15 and I bet wished she had started at 10.
Exclusion would mean PRU possibly
Is CAMHS involved? Would professionals support home tuition?

WhenWillTheBuildersFinish Tue 23-Oct-12 21:00:11

Hi, thanks for the reply.

School won't allow ear defenders. My son has noise blocking ear plugs but he is only allowed to use them when he is doing work from a book and they don't encourage it; they don't like it that I even supplied them.
Thing is, this has been going on for 7 years (since he started school) he has been to OT and they say he has auditory hypersensitivity but there is nothing they can do.
He has always said the class is too loud and he can't understand the teacher. He actually gets up in class now and tells everyone to 'shut the hell up' which obviously doesn't go down too well. The school says the noise level is low and think he is just making excuses to get out of work. I believe he is so overwhelmed he just cannot concentrate. He even tells me he doesn't understand what the teacher is saying but his hearing is perfectly fine. The school think it's all bunkum by a lying child to get out of work he finds tedious.
I have looked on the Caudwell site but can't find out what's involved or where the course is run. Do you know anything?

zzzzz Tue 23-Oct-12 21:07:26

Is there r has there ever been anything he likes about school?

WhenWillTheBuildersFinish Tue 23-Oct-12 21:07:52

Thanks AgnesDiPesto,
He had home tutoring last term after he tried to kill himself at school, the LA only provide 5 hours per week maximum and the tutor had no knowledge of Autism. Son has been under CAMHS for nearly 5 years to try to 'talk' about his moods. His Autism Outreach worker has questioned why he has not been put on mood stabilizing drugs by CAMHS. They have never mentioned it even though they know he is depressed and suicidal. I have rung CAMHS several times recently and been to GP but CAMHS don't return my calls and GP says he can only refer to CAMHS.AARRGGHH!
We are just left to cope and have been told by Access and Inclusion we are 'lucky he has been given 3 hours per day' and we should back off and stop interfering in the LEA's business.
It's a joke really.
I have made several requests for help to stop it getting to crisis point and no-one is taking it seriously.

zzzzz Tue 23-Oct-12 21:10:07

Sorry "OR has there"

WhenWillTheBuildersFinish Tue 23-Oct-12 21:14:26

He has never 'liked' school. He doesn't even play with other children as he doesn't know how to just 'play'. He just stands there looking at them enjoying themselves but tells me he doesn't understand how they do what they are doing. He tries to make up games but they are so complicated, about alien planets or property speculation, the other kids lose interest (and I don't blame them, what 10 year old want to play a game about statistics?)
He has poor motor skills so can't ride a bike (or tie shoe laces, write properly or use cutlery). He can't do PE as he doesn't understand 'team' games and gets upset.

So, no, he has never liked school

float62 Tue 23-Oct-12 21:18:37

Hug to you my dear lady. The HT has been going though the 'motions' and obviously sees your ASD DS as a nuisance (he prob had is arm twisted a bit by the LEA to accept him as poss didn't have enough SEN pupils). The LEA will do everything to save money and often won't appropriately place a child until they have been permanently excluded twice although they will never admit this. I have been exactly where you are now except in Yr3 I won't go into details here.
Took me awhile to realise the 'two strikes you're in' rule. In terms of education what your DS is receiving is absolute pants and a permanent exclusion will help 'focus the minds' of the LEA. I know this sounds like bad advice and totally wrong but grasp the opportunity of a perm exclusion with both hands and if it is done on your terms in a mutually-agreeable way with the HT it will be easier to bear. Do not on any account withdraw your son and home ed nor agree to having the exclusion described as anything else (as a very disappointed LEA officer asked me to agree to). The perm exclusion will be followed by an agonizing period of uncertainty and prob a PRU until summer, but then what's happening now is no fun for either of you. Do not accept anything less than a Sept placement in the special unit, the 'managed move' and perm exclusion demonstrate that your DS can't cope in mainstream and nor should he have to.

bochead Tue 23-Oct-12 21:26:57

What LA are you?

You are being failed on so many levels that it disgusts me.

1. ear defenders = reasonable adjustment under the terms of the disability discriminination act.
2. Have you ever done any of the ambitious about autism courses on challenging behavior?
3. he needs the input of a sensory integration expert (usually OT) so badly it's doing my head in that he hasn't had it.

I don't want to upset you, but it took Tribunal to get my son's sensory needs recognised and accomodated in a school environment. Be prepared to have to go the same route (inc the timescales sadly!)

We now use the 5P method of behavior management (google Linda Miller and the 5P approach). It's basically ABAlite together with a sensory diet & a totally inadequate OT programme. DS is a totally different child in year 4 to the suicidal 6 year old of year 2. With a school so unhelpful that they won't even allow ear defenders I have to advise you to look elsewhere for provision. Even a statement doesn't help if a school is determined to be Sob's for the sheer sake of it.

I'm virtually set on InterlinkHigh - an online school as my son's secondary choice. Mostly due to sensory issues in the school environment. I'm wondering if your LA would be willing to cover the £800 term fees + exam expenses when he gets to year 11.

My gut feeling is that a combi of Interlinkhigh and some ABA (perhaps an hour or so a week help for you) might show you a totally different child?

zzzzz Tue 23-Oct-12 21:39:09

I thought that might be the gist of things (ie never liked school). If you think a unit will help and provide a positive enjoyable and life enriching experience for him then float sounds on the right sort of track.

I do believe that some children are not suited to institutionalised education. You spend so much time and energy adapting to the hostile environment it is hardly surprising little or no learning happens at school.

In our case ds1 learnt at home and showcased (if he could which was rarely) at school. Progress was made in the holidays and then behaviour, emotional well being and academic achievement deteriorated through the term. The latter half of every term being totally draining for all concerned.

What kind of man does this create?

We have taken the decision to homeschool our young man. Progress has been slow but steady. His self worth rises slowly day on day and his behaviour is inching back to normal (for us, not Joe Public!).

AgnesDiPesto Tue 23-Oct-12 21:52:00

Hmm well they are supposed to provide about 22 hours for a 10 year old - was report on this on local Government Ombudsman website 'out of school - out of mind'.
But more home tuition is no good if its not working.
However LEA response about 3 hours stinks so make a formal complaint and report them to LGO
Is there a special school / unit he could go to now for year 6?

float62 Tue 23-Oct-12 22:21:06

Completely agreeing with all the home-edders here, sometimes it's the only way. I'm just saying not to do it at this stage via withdrawing him from school as then the LEA can pretty much absolve themselves from any responsibility except for checking occasionally that you're providing it (and paying for it). There's fierce competition for ASD Units so if the one you might get a place in can't provide the right sensory environment for DS they will be happy to state this to the LEA. Start searching the independent provision in your area as Charitable Trusts provide a lot of ASD educational environments that the state just doesn't. It really depends on your area. The LEA will hate this idea as it costs them £lots to start with, but less in the long term when you get a functioning human being at the end. Especially one with the talents your DS has. But you have to fight, fight, fight. Which is so wrong. Another hug.

mariammma Tue 23-Oct-12 22:23:45

I think you need a proper audiology-ENT hospital type to write a clear report about what sensitive hearing feels like, how it affects listening, and the adaptations needed.

Once you have it as an official 'extra' diagnosis on top of asd, then the sensory impairment teachers can tell school how unhelpful their approach is. Deaf dc with very strong hearing aids have the same problems, and schools often try to say they're just being difficult... The specialist teachers are pretty good at slapping down that nonsense.

bochead Tue 23-Oct-12 22:53:39

Ds is in mainstream at a school that has a deaf unit attached now.

It may seem counterintuitive to place a child whose key issue is hypersensitive hearing with those who can't at all, but actually it's been a really smart move. Not least because the mainstream staff all "get" that to help ANY SN child you have to give a damn & make adjustments from your "norm"blush

It's just an idea if you look for alternative provision.

swanthingafteranother Tue 23-Oct-12 23:29:00

Are you making him do too much work at home?
Perhaps it is completing the cycle of stress about school.
I am full of admiration just amazed that you feel it is necessary to do so much at home educationally with him. In a way, that time should be time for you to develop other aspects of his life, maybe go to a green space, on a visit, just destress together. It seems that anxiety is such a big part of the behaviour problems, maybe taking the pressure off both of you would help. I understand that your Ds is very focussed, but still doing so much might just be a habit you have got into to please the school, and "keep up". But if the school aren't making it easy for you, why should you care about doing the work set? There is more than one way to teach him things, he may learn things in ways you can't imagine, just on his own?
My ds1 (HFA)is very work avoidant, and it it is a struggle to make him do his homework, or for him to admit he even has any. But I decided a long time ago that it was better to stick to short and sweet than long and harrowing, and I was never going to feel guilty or stressed by the quality of work he did for school. He naturally wanted to read books about interesting facts and discuss them so I am trying to build on that instead of "exercises" in handwriting and literacy. He is happy enough at school. If he had the experiences you are describing I would be so not be dancing to the school's tune.
I am very sorry they are mismanaging him so badly. Why should you have to fill their gaps, on their terms?

WhenWillTheBuildersFinish Wed 24-Oct-12 07:28:30

Morning everyone and thanks for the input.
There are no ASD units he can attend in our Authority. We went through this before the summer holidays when the LEA were pushing for a return to school. Even for the high school, it is not Autism specific, but a Communication Disorder Unit, which includes ADHD children, remedial (sorry don't know the current PC term)and children with ODD etc. So it is a general class. One child that goes there is barely verbal and has an IQ of 60 ranging through to kids like my son, so it is very mixed.
There are no units specialising in ASD. The pupils in the 'unit' are in there for registration and are then sent out to spend 70% of their day in the normal mainstream. They get to go back to the unit if they 'act out'. So it seems its just a quiet area to cry or meltdown, away from the rest of the school.
This is all that is on offer.
We are totally on top of his stress and behaviour at home. He probably has a meltdown once per month, he is calm, happy, smiles, tells us he loves us etc. Soon as he goes to school he is totally stressed and melts down at the slightest provocation.
Example.. his pencil snapped. He has 5 pencils, when I asked why he didn't use another one, he tells me they are all snapped. He can't sharpen them himself and no-one had thought to do it for him. He has to leave his pencil case in school, so I didn't know either.
Yesterday he fell in the playground, got all muddy, was distraught (can't deal with hurt or dirt). In the lesson afterwards the supply teacher refused to tell him what they were doing in the lesson despite him repeatedly asking her. He started crying and was removed. He told me he was scared because he didn't know what was coming next. This is a child with a visual timetable FGS!

Sometimes it seems they set him up for failure then complain when he can't cope.

The reason we do the work at home is because it really is just 1 sheet of paper with 20 maths questions (easy ones for him) or write 2 paragraphs in a 'newspaper reporting' style about the war. Half hour-1 hours work for an NT child. This is only about 10% of the work the others do in class. He only gets maths, english and science to do. No other subjects at all because he doesn't go for those classes, which are in the afternoon. He only gets the science because he requested it, he was bored with just the maths and english. Because he is so slow at writing and constantly loses his train of thought it takes him at least 2 hours to complete the 20 maths questions and anything that required non factual i.e fiction, creative writing etc is almost impossible due to his lack of ability in imaginative thought. He actually knew more facts about the battles of WWII than his teacher but 'think up a story' no chance on earth.

Sorry to drag on, parents evening tonight and what a waste of my time that 10 minutes will be.

The head said yesterday, 'it's all very well him being able to complete the work at home but we see no evidence of it in school'. Where is all the work we are sending in going to then? Is he implying I do my son's homework for him? I don't even understand the maths myself, was all about vertices and negative numbered graphical plotting the other day ??? to me I am afraid. I had to ring my husband at work (he is an engineering designer, so knows about spacial things).

But I digress, I feel like I am getting knowhere.

WhenWillTheBuildersFinish Wed 24-Oct-12 07:28:46

nowhere, sorry

mummytime Wed 24-Oct-12 08:06:22

I would talk to someone like SENSOS! it seems that your son is being totally failed. If there is no suitable provision within the LA they will have to find him suitable provision outside the LA or even in a private specialist school.
However you may need to take them to court to get this, which is where SENSOS! (or the other one I can't remember) may be able to help.

Good luck.

zzzzz Wed 24-Oct-12 08:31:23

It does sound hideously frustrating.

I don't think the amount of time he is spending at home is too much. Simply because he is in effect part-time HE so hold be putting in 3 or 4 hours at home.

I think there are areas you can address in your time with him. For example you could act as scribe to facilitate his Maths work, allow him to use a computer or solid numbers (think Montessori movable alphabet but the numerals) and then either take a photo and send it in or copy it for him. Frankly if the Maths is too easy then ask your Dh to do something more exciting mathswise with him. An on going project would be ideal. If story writing is too hard, get the work differentiated for him, or just set your own parallel work (so class are set a story, he is set background research for a written to write that story).

Don't use every afternoon to teach him Maths and English, poor chap. He will die of boredom. What about trying doing something totally different one afternoon a week? Science, cooking, history, a language, botany, zoology? There are lots of great resources out there.

On the subject of parents evening. It is not an exercise in them airing their frustrations at the challenge of teaching your boy. Put the ball firmly back in their court. Listen to each and every "complaint" if you can make numbered notes of ech on a piece of paper. Once they are done, revisit each point and ask what their plan is to help that issue. Look at the strategies they have suggested and decide weather they are really engaging with the issues. Then decide how you are going to deal with it.

Be ambitious. Your boy sounds bright and full of potential. In 8 short years he will be a man. Try to focus on who you want him to be.

As an aside the children in the unit may look scary but they are just kids with different disabilities. Autism IS a social communication disorder. I'm not sure how you know the IQ of the non verbal child shock and I don't know what remedial really means but if it is "behind the average" then surely your ds will fit that? I'm not saying you should consider the unit, just you sound very dismissive of the children there in a way that makes for quite hard reading, for me with my own wangley children.

swanthingafteranother Wed 24-Oct-12 10:21:28

I just don't think what you do at home should be a version of what they do at school. zzz is right that you should just do what grabs you both. If the school aren't interested in what he does at home,just make life easier for yourselves. It sounds as if he is loving doing anything which is 1:1 in a calm supportive environment.
Have you looked at Home Ed board for a long term strategy about educating him, in accordance with his needs? It doesn't sound as if he thrives on the social aspect of school at all.
Home ed done your way can be a lot less stressful than trying to replicate a school day. I've done it in short term with one child for three months, and he got so much out of it, and I am prepared to try it again if my ASD child enters mainstream secondary and his needs aren't met. Lots of people don't have the confidence to realise that for some SNs they can actually provide a far better learning environment than most schools. It sounds like you are doing a fantastic job with him at home so far, and perhaps being over conscientious in your approach to "education", which is after all a three-dimensional process, not just a question of pen on paper, and "schooly" tasks.

I think ds's reaction to school tells you a bit about how successful they are at "teaching" him. Not.

stillsmarting Wed 24-Oct-12 11:10:38

This school sounds dreadful. (Sorry) They aren't meeting his needs and don't even seem to want to.
Home Ed may indeed be the way to go for the short term as he is willing to work at home.

WhenWillTheBuildersFinish Wed 24-Oct-12 12:46:03

Dear ZZZZ,
Sorry I didn't mean my comments to be dismissive. I was just trying to get across the scale of difference and the different abilities of the kids in the Unit and the fact it isn't Autism Specific. I wasn't being derogatory, I just don't know what the terminology is. When I was at school those who were significantly less academically able were called 'remedial'. I am downhill to 50 now so I was not sure what term was now used. My sister was in the 'remedial' class, because she was said to be 'unteachable in a normal class': She left school without taking a single exam, despite being articulate. Turned out that she has dyslexia,(not diagnosed until adult) this is over 40 years ago, so it was a much different world as regards school. My husband, same age, has Asperger's and was just constantly caned at school for not behaving and fitting in. It just wasn't recognised back then, any severely disabled children had to attend special schools, there was no inclusion and integration like there is now.

I am sorry if I offended you in any way.

The reason I know the child's IQ is because his mother, who is a specialist Autism Teacher, told me.

Delalakis Wed 24-Oct-12 12:53:53

If there are no suitable schools in your area, are there any in neighbouring boroughs? Have you considered independent special schools? Or possibly even residential ones?

WhenWillTheBuildersFinish Wed 24-Oct-12 13:01:01

I had a long meeting with the Head today and he tells me my son is 'not able to learn and progress in a normal school environment'. Apparently his 1;1 is getting upset herself as she doesn't know what to do when my son is in meltdown mode. She is also not recognising his rising stress levels to be able to implement any calming strategies. The Head agreed she is not experienced enough to handle the situation.

He has told me off the record that the LEA never provide help until a crisis mode sets in i.e. exclusion, and that he has many battles with them in the past.
He is going to try to get my son back onto EOTAS (home tutor 5 hours per week) with the LEA and also provide curricular guidance and support, he will provide weekly subjects and rescources for us to use at home alongside the input from the tutor.
This, at least to me, sounds positive; if he can pull it off.
He thinks it is such a shame for my son as he is bright but just cannot function in the school institution. The head actually said he believes it is unnatural for children to be stuffed into school like they are, and regimented in a way only reserved for the armed forces.

However, it is very hard for my son and I to be in each others company 24/7/365. He must learn some self help skills or he will never be able to cope in life.

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