Serious trouble physically getting DS with AS to school (who aren't v. helpful)

[earthtomummy]

He's started yr 1 this wk. and I have had a shocking time. He has never before refused school - certainly no more than muttering that he dosn't fancy going. This wk. he has screamed, roared, punched me, scratched me, pinched, kicked. He has thrown all his school uniform down the stairs and on Thurs he was hiding under his duvet and eventually I had to almost pin him down to dress him and he ended up going to school in the buggy with no socks or shoes on. He was awake till 2am one night, refusing to close his eyes in case he fell asleep. He hasn't vocalised why he is behaving like this but it must be school. Still worse, we entered the school yr with a determination to be v. positive about his school and new teacher. On the 1st day she was lovely and understanding. On the 2nd, less so. Today she pulled him away from me and told him she hadn't got time for it etc..When I collect him he is happy and has enjoyed his day, I am told, but then on the way home he just starts tantruming about wanting things NOW and starts hitting me and kicking out again. He is never usu. agressive twds me. I am feeling awful. He was only recently diagnosed and it has never been as evident that he has a problem as it is at the mo. DH is never around in the morning and having to deal with him alone, plus get my 3yo to nursery and my 18mo old in the buggy is v. hard. Sorry to go on, but I just feel desperate. I wonder if other people are having/have had similar experiences. It is particlularly frustrating because school are saying there is no problem, he is fine once there and seem to have already got me down as an over-anxious parent who can't handle her child/panders to his naughty (their perception) behaviour. i dno't know how to handle this at all. i'm at a loss and so upset to see DS so distressed.

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This is awful. You must go in and speak to the class teacher. I wonder whether your son was properly prepared for the transition to Y1 (eg did he meet the teacher, find out routines etc well before?) The way the teacher dealt with your son on Day 2 is the way one would perhaps deal with a non-AS child, but your child obviously needs a different approach. Please do make an appointment to see the teacher and the SEN leader on Monday ( I realise this doesn't help with school Monday morning). Best of luck. By the way, the school probably do not think you are over-anxious etc - your reaction is perfectly natural when your child is so distressed. Perhaps the class teacher has not had experience with AS children before. September is a steep learning curve for us all-children, parents and teachers.

He wont go to sleep because he thinks if he stays awake then he wont have to go to school because you have to have to sleep in-between school days. He sounds very un-happy and very anxious and it does not sound as if the teacher or school has planned for the change over of class in a very positive way.

School is the problem and no he wont be able to tell you what the problem is because he probably can't find a way to explain himself. It could be lots of things. New room acoustics will have changed, new teacher they are not what his eyes is used to seeing, new timetable much more full on in year one, new person sitting next to him whom he maybe does not like the smell of - that does not mean that they smell but he may be able to smell something he does not like. It is probably a mixture of change and sensory issues and the teacher telling him that she does not have time is a bad omen. She must make the time and be made to realise that telling a child with AS once is never going to be enough to do the job. Would she take a wheelchair from a child on day two because they should know how to walk by then? Don't think so. No more than she would take a white stick from a child who can not see. Your son is disabled she may not be able to see it but he is. He is containing himself in school - know that one only too well - and so he is exoloding out and you get the fall out. Do NOT let them tell you that it is you because it's not.

I feel so sorry for your son who must be so distressed. I can not give you hands on advice because I refused to force my son to do this day in day out and I took him out.

Do you have a support group or Network 81 befriender who could arrange to go into school with you? This can make a big difference. If not try and be confident and don't let them fob you off because you know him best. I would also do a personal profile (I think schools call them passports now) of your son and what make him tic, upset and explode. Give it to his new teacher along with an explination of what AS is and means to your son. Are you on any on-line support groups you can get some brilliant info from these groups from people who really do know their stuff.

Oracle

Thankyou everyone. Whilst I wish you hadn't had the same experiences, it is reassuring to me to hear of them. DS was in the nursery and reception class in the school so should have been prepared..? DS also has a real perfectionist streak and is finding the work difficult. He doesn't think it is ok to knowjust two words or whatever, he expects himself to know them all. He then refuses to engage and his perfectionism restricts his learning. The problem is that his difficulties are so subtle and i don't think school believe they exist. Last term the head told us there was nothing wrong, perhpas'he is mildly autistic but aren't we all', unquote, and that we should be less anxious...My difficulty is that DH and I disagreed over whether or not to continue seeing the paed. for a dx. We did and she said he has AS but we agreed with her that we'd refrsain from using the label. I now feel like screaming at the school, my son has a clear dx of AS, do something appropriate. DH wants to manage it without saying that. They have been told by the paed and me that he has social comm. diffs. so should understand what that means. The problem is that he is being handled like any other child but it isn't really appropriate, is it. You know, my DS was a different boy in the hols. Happy, chatty, funny, vibrant, confident socially beyond belief. This morning he was q. chatty in the house. We shut the front door and he just seemed to lock down.

Sorry to say this but without a firm dx he will contimue to be treat just like every other child in the class. Even with it you will face a fight. I often wish that I had never had my two diagnosed but had I chose that route then they would never have gone to school at all. Knowing what I know now and what they have both had to endure then I truly wish that they had not.

What is subtle may eventually smack everyone in the face as it did with my son, but sadly for my him it was too late by then and he had a total nervous breakdown aged 11. We finally got his dx when he was 13 years old.His dad had told me on numerous ocassions that he was OK and would get by - he was wrong.

Oracle

earthtomummy

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One way forward if you have not alreeady considered it is to get a Statement of special needs for your son. He has AS and such children need extra support in school. He cannot cope with his school day and you're bearing the brunt of all his frustrations when not in school.

That Head's comment made to you last term was unhelpful at the very least and patronising at worst.

Your husband in particular needs to use this AS diagnosis for your son as a signpost to get his child more help otherwise he will continue to struggle in school and ultimately perhaps get permanently excluded through no fault of his own because school cannot cope.

IPSEA are very good and can advise you re school and how to take this further.

I would strongly urge you to apply to the LEA for a Statement for your son. Note I say you as parents not the school. The onus is very much these days on parents to get the help their child needs becuase by god no-one else is going to do it for you. There is nothing to stop you writing to your LEA and asking for your son to be assessed. If the LEA give the go ahead your son will eventually get a Statement. This is a legally binding document that will detail DS's difficulties and outline a set number of hours of support.

www.ipsea.org.uk

Thanks Oracle and Atilla. Bit better today, we had a dentists appt and when we arrived it was nice and quiet at school which DS seemed to prefer. May consider talking to his teacher taking him a bit later to avoid the classroom crowds. thanks for the advice - lots to take in. I think that I'm trying to pretend everything will be fine because deep down I'm struggling to accept the firm dx. i keep looking at him thinking, no, there's no preoblem, but Iknow of course that there is. Thankyou for your support because Mumsnet has been the only place where i could say how I feel and have a cry and let out all my sadness and exhaustion and anger last wk.

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We have all been here and felt like this and it does get better promise maybe we just learn to live with it or accept that no matter what dx your child has they are still your child and you love em no matter what.

Many of our children with autism and AS are better being allowed to enter school 10 mins after everyone else and to come out 10 mins before everyone else. It helps to cut down on sensory overload and it is accepted by NAS that it can help a great deal. So it is a thought and a place to begin.

Oracle

My niece with as luckily gets great support and understanding from school. She is at secondary now. She is allowed to go into a spare room at first until she feels ready to face the class. She seldom uses this facility, just knowing she can do that gets her up and out in the morning.

earthtomummy, my ds has just been diagnosed with AS and I am having similar problems to you getting him to school at present. He had a major meltdown this morning but managed to get him in eventually. Are you finding things getting any easier as term progresses?

I've got lots of mixed feelings about AS diagnosis but feel that it might help getting more resources for DS. He just about copes with acamdemic side of school but social interraction is the main problem for him. He just does not seem to know how to talk to other kids properly and I think they are starting to realise he is "weird" and staying clear which is very upsetting.

Hi Caroline3. Sorry to hear about your diffs. We've just had a resumption of difficulties. DS did ok for about 2 or 3 wks, then last wk. started saying he hates school, the work's too tricky etc. Then last wk. I got caled in because he was involved in an incident where he broke another child's glasses. This wk. he's been realy stressed in the mornings, refusing to go to school, but once ther seemingly ok. His teacher says she cannot believe there are any problems. But then today his best friend's mum, a good friend of mine, said she wanted a chat. Apparently her DS has been telling her he doen't want to play with my DS at the mo. because he's doing silly things/ behaving oddly and he doesn't understand why. It suggests he's struggling with the social coomunication side of things, doesn't it? It's as if DS has 2 entirely diff. personas and the little boy i have at home is, at the mo. Mon-Fri v. angry, destructive, confused, fragile etc. but at school presents as okay (bar the incident last wk.). I don't know if this is normal for children with AS? Caroline 3, how old is your DS? Have you told school of his dx?Are your school any more helpful - how does he manage during the day? Are youlloking forward to half term and no school run as much as me!!

Hi earthtomummy my ds is 6 and in year 2. Only just diagnosed but he has been on action + for a year anyway. I have just told SENCO about the formal diagnosis. He is O.K at home most of the time, plays nicely with dd (9). He just gets so confused at school, things like lining up to go into the classroom really stress him out and he often wanders aimlessly about the playground. Today the big problem was that he wanted to sort some Dr Who cards out and refused to start out for school even tho he had had plenty of warning. He can be very stubborn and going head to head with him is a big mistake, he just thinks he should always do things his own way.

I can't wait for half term, he just about copes with school but would rather not be there. He likes maths but quite a lot of things go over his head. His best things are going on his bike in the park and playing on the computer or watching TV!! Can't quite get what he is meant to do with football but keen to join in anyway. He flaps his arms about and looks so lonely just standing there but really wants to go so I keep taking him even tho it upsets me.

My DS (aged 7 and AS) has always been a nightmare to get into school. However, this term he was asked to go in a bit earlier to do the visual timetable for the teacher. This has worked extremely well, as it means he is already settled in the classroom when the other children come in. He used to just
"go into a dream" and was always last in before (and actually getting him to school was a major task in itself!)
earthtomummy-it is very common for AS children to apparently cope at school and present completely differently at home. Getting the schools to take this on board is another matter!

Hi earthtomummy
I to have been having the same problems with my DS , he is 10 and in year 6 i took him back to see consultant and he gave a seperate dx of school phobic on top of his AS. Though it seems like another label to saddle him with, it is helpful since the dx he has recieved far more support and it keeps the welfare officer and his fines at bay.I still do my best to get him to school everyday but when its proving impossible i just have to ring in and say he is refusing school and the school are fine about it and we try again the next day it means at the moment he has 1 or 2 days off a month and is more settled when he is there . Dont know if this is something you could do to i know its much harder if your working fortunately im not at the moment. Hope it works out for you

earthtomummy and caroline3

I would suggest you seriously give consideration to getting a Statement for your children (I know I have mentioned this before earthtomummy). This will address their needs as a person and it is a legally binding document.

You can apply to the LEA directly asking for them to assess the child with a view to getting a Statement. There is nothing to stop you doing this; you don't need schools permission for instance. You can also appeal in the event that the LEA say no.

To my mind no statement equals no support of any real value.

They will continue to struggle because they will be treated the exact same as everybody else. I feel quite strongly about this whole matter as I know of someone who has a child with AS in secondary school. He is being failed by the system because there is no help to address his social needs.

IPSEA are very good when it comes to statementing etc and I would suggest you look at their webiste which is www.ipsea.org.uk.

Attila, I am interested in getting a statement for ds. The school don't seem particularly supportive at present - they say he copes O.K with the academic stuff. However there have been several incidents already this term e.g. trying to cuddle a learning support person, having a total meltdown when I signed him into an after school club on day, melt down when having to wait his turn for something. He is meant to be getting help with social skills but that does not seem to be happening on a regular basis (I am very annoyed about this as the school said that it would.). I am feeling so down about the diagnosis and very depressed about the future at the moment... The pediatrician said that some LAs have a blanket policy of not statementing kids with AS, is this true? This does not sound legal to me.

I have been told the same thing re statementing by the Senco at MY DSs school Caroline. I rang Ipsea this week (on Meerkats and Oracles advice!) and they confirmed that it most definitely is not legal to have such a blanket policy.

thanks tiggiwinkle. What sort of thing are you asking in for the the statement? Do you have to specify a certain number of hours you want? What appeals to me about getting a statement is having certain things "ring fenced" so that DS will get guaranteed social skills training and attention from class helper at certain times. At the moment it seems to be dropped if other things are happening at the school. It drives me mad when people say things like "we have all been so busy/ there so much going on at the moment with concert/getting ready for literary week or whatever." Hopefully this would NOT happen if I had a statement for ds.

Caroline3,

LEA's cannot plead ignorance re blanket policies - central government (Dfes) has told them that such measures are illegal.

If the LEA agree to assess they will specify provision then you can hammer out the finer details with them if anything was not included (however that will delay the statement being issued). As such documents can take six months minimum to be issued anyway I would put your request in sooner rather than later.

No statement to my mind equals no support of any sustainable value. You need this document for your child - for starters it is legally binding.

IPSEA are very good at all this, do look at their website. They have model letters they can use. www.ipsea.org.uk is the web address.

On a wider level I wonder how many other parents have been misled, not just to say the SENCO's?.

Loads I would imagine. Its all about saving money (so it can be wasted on other useful things like illegal wars in other countries) and a lot of people won't have the knowledge/energy or time to push things further. Its a very cynical manouevre and even more disgusting as its misleading people who are in a very vulnerable position.

I don't know if anyone has tried to challenge L.As position via the Courts? It would be interesting to see whether any of the LAs actually defend the policy or whether they back down when pushed. I don't know yet whether my LA has this sort of policy but they have a reputation of being very tight so I would not be surprised to hear they did.

caroline3 i have challenged my LEA twice now.

The first time they refused to assess my son who has AS and we took them to tribunal but they backed down 3 days before it and have agreed to assess our son.

Then this week they were saying that the dx we have for our son of AS is not recognised as its not come from the NHS so i read them a paragraph from the SEN code of practice (which is an excellent book and its free to order from DFES) and they have backed down immediately.

They will try anything believe me im going through it atm with them.

I don't know if anyone has tried to challenge L.As position via the Courts?

A number of people have challenged their LEA's decisions on several matters. IPSEA have some case examples on their website.

Hi Attilla! The problem with going through the courts is costs. You will obviously have to pay your own legal costs and even if you represent yourself there is always the risk of having to pay the L.As costs if you lose the judicial review application. Even if you know you have a strong case you would need nerves of steel as you will get a letter "threatening" that you could be landed with legal costs of £10 - 20K if you lose. So you either (1) need to have no money (ie on benefits and not owning your own house) + a lot of guts and energy or (2) lots of money and energy!! I certainly would have a lot of respect for those brave individuals who do not back down. The L.As know that most be people will back down as they have limited resources for a fight. Lets face it looking after a kid with special needs is emotionally and physically draining at times.

It would be interesting to ask the L.A in question to provide a legal justification for adopting a blanket policy. Given that they are meant to be looking at each child individually I find it hard to see how they could justify the "reasonableness" of such a policy.

Jenk - I am very impressed with your tenancity - don't let the bastards grind you down, you know you are doing the right thing!!!