Please help I really dont know what to do

[MissPitstop]

My DS is 9 and has Aspergers. He has struggled with going to school over the last few years but recently it has been really bad. He finds school really stressful and too noisy and struggles with the social aspects but doesnt show any of this at school but when he gets home and before school he is really upset, aggressive and violent toward his siblings and myself. Recently he has begun to self harm. We have tried for support for him at school but because he manages to achieve in class and doesnt disrupt this has been unsucessful.

Today I couldnt put him through the stress of a day at school wearing "something red" and doing Red nose day activities (both stressful as they are different from his usual school day) so I agreed to let him stay at home with me as long as he agreed that he would be doing work at home with me. I thought that he had calmed down but my first attempt at getting him to do some work ended up with him in tears, scribbling all over it, tearing it up and throwing his pencil across the room because he said it was rubbish.

This morning I was all set on being able to home ed him at least until his mental health improves but now feel like this wont really really help him. Im not sure that he will respond to being taught by me. Im also worried how I will provide him with a decent education and look after DS3 18 months and DS4 due next month.

Has anyone been through similar problems or can offer any sort of advice?

I have also posted this is in SEN

Hi MissPitstop

I have a son with Aspergers too.

Have you spoken to the SENCO at school about reasonable adjustments that could be made for him at school - such as a quiet place to go to to be alone when he finds the noise etc too much?

What practical help are school giving him to help him understand how Aspergers affects him and are they attempting to teach him strategies to alleviate the difficulties he experiences?

Do you think he should be in mainstream school or would he be better in a small sheltered base for ASD children attached to a mainstream school. he's 9 now and you need to be thinking about a suitable secondary placment for him.

Does he have a Statement or is he on Schools Action / Plus. Is there more that YOU think school could be doing for him now? you've said that school are unwilling / unable to gibve him more support. Why? Do they think he doesn't need it or is it a funding issue etc. If his difficulties are being ignored by school then it's time to request the LEA to undertake a statutory assessment that may lead to him being issued with a Statement detailing the support he requires - school would have to provide that support.

Personally i would make that request now as he would almost certainly need a Statement to obtain placement in a base attached to mainstream secondary school - and he sounds as though he certainly wouldn't cope in a mainstream secondary school which will be a lot nosier and busier than his junior school.

If he is self-harming then he is diefinitely a child in need to support and understanding. Your GP should be able to refer him to CAMHS for pyschological assessment and support. Similarly, school should be calling in an Educational Pyschologist to assess him with a few to suggesting strategies / practical support at school.

Too often kids are just handed the aspergers dx and epected to get on with it with little to no support - and they simply can't. They need proactive teaching of things that come naturally to most children but not to them. When they have difficulty understanding social cues etc that's when the anxiety escaltes and the self-harming starts.

Hi Misspitstop - I recognise what you've posted so well - I was exactly where you are now 2 years ago (although DS hasn't been diagnosed with Aspergers) . I will come back to this thread - DH has just come home, but will be back soon. Just wanted to know you are not the only person ever to go through this.

WetAugust has posted some great advice, and I don't really have anything to add to that.

My sons new school have offered him everything WetAugust sugested and the self harming has now stopped.

I found it very difficult to teach him at home - I had a toddler who either climbed over us or ended up watching Cbeebies for long periods.

I would sugest while he is willing to go inot school ( my DS started to refuse) try and get them to offer what WetAugust has sugested.

I know how tough it is and you aren't the only parent ever to go through this.

Thankyou for your kind replies. Sorry for not replying earlier things have been a bit manic.

The situation with school has got worse. I asked to talk to his class teacher when I went to pick up DS2 on Friday to talk through what we could do next. I met with the SENCO at the school prior to him starting (we have recently moved back into the area as DH is in the army) and gave them a copy of his IEP from the previous school, talked through the things he found stressful and what actions were currently in place to help him and explained that Autism Outreach were expecting a referal from the school about DS as I had discussed him with them already. I was told that school had not done him an IEP because "he is progressing well in English and Maths" and "he doesnt fall out with anyone when he is playing football more than any other child". I didnt reply to this as I was so shocked I said my goodbyes and returned to the safety of my car where I burst into tears.

When I asked the SENCO about getting a statement for DS I was told that the LEA would never give him a statement on the grounds that he self harms at home if he is doing well at school and not disruptive in class.

We had an assessment with CAHMS last week which was very upsetting for DS. We were seen by a Psychiactric consultant and nurse in a very small office like room. They talked to me for 1.5 hours about how DS was behaving and the problems we were facing. All of this in front of DS who was getting very upset. At the end of the assesment they just thanked us for coming and said that they would be in touch with an appoinment soon.

DS has already started getting aggitated and upset today about school tomorrow and I am preparing myself for a 90 min battle with him to try and get him into school again in the morning.

Hi

Sounds as though your SENCO is not up to much. The whole point of having an IEP is that you can monitor progress - so the fact that he is progessing well in Maths and English would be measured against set targets. It's not all about academic achievement anyway. Social development can also be measured on an IEP. It sounds as though she is saying there are no problems when you clearly think / know there are.

Ignore the SENCO's advice about the Statement - it's rubbish!. Your child fits criteria for a Stateent as he is being seen bu=y Outside Agencies i.e. CAMHS and Autism Outreach. A Statement would identigy, assess and provide support for his difficulties so if they won't initiate a request for an assessment you should contact the LEA directly and initiate it yourself.

You mentioned that you are a Forces family. The Govt recently published Guidance about dealing with Force's family children's SENs at
www.mod.uk/DefenceInternet/DefenceNews/DefencePolicyAndBusiness/MinisterRemindsSchoolsOfDut yToForcesChildrenWithSpecialNeeds.htm

I would go bak to the SENCO and demand an IEP and also suggest you sit with her to identify the problems and determine what level of support you want school to provide. I would also initiate a request for a Statement myself.

Best wishes

When I asked the SENCO about getting a statement for DS I was told that the LEA would never give him a statement on the grounds that he self harms at home if he is doing well at school and not disruptive in class.

I have two words to say to the above crap you've been told - its bollocks!!!. Designed to put people off applying, people whose children really do need a Statement to safeguard their educational needs.

Would agree with WetAugust's response in its enitreity. You need to personally apply for a Statement from the LEA. You do not need school's permission to do it and if you apply for it yourself you know its been done then.

www.ipsea.org.uk is a very good website re statementing and there are model letters you can use.

Today I have spoken to a local charity run group who support and advise parents of children with SEN. They were really good, they advised me of what I should say at parents evening on Thursday and advised me that I should not leave without either speaking to the Head/deputy or have an appointment to speak to them later in the week. Once they knew which school DS went to they advised that I should be speaking to the Head/deputy not the SENCO if things were going to move forward! They told me that the school should have made the referal to Autism Outreach if I had requested it and that they should have either carried out the support in the previous schools IEP or reassessed DS and written their own (every child with CAHMS and AO involvement should be on a school action plus IEP) They advised me to hold off asking for a statement until I have exhausted attempting to get the school to carry out all the support I think he needs on his IEP otherwise the LEA will just say the school can be doing plenty on an IEP before a statement is needed. They advised to give school a little bit longer to put into place the support Ds needs and then they have said that they will support me apply for a statement and meet with school again. Not sure on a suitable timescale for this but not keen on leaving it very long while he is still having so many problems with his mental health.

On the positive side I managed to get DS into school today. OK it was after a long battle to get him dressed and ready and he was far from calm when he returned but at least he went in!

MissPitstop, are you registered with CEAS? i would be ringing them too - if this is a problem that has occurred on transition due to posting they may be able to offer you some advice to help sort it out.

di you speak to the new LEA prior to posting? have you got new team in place yet or not? yes, he should be on SA+, but that doesn't actually mean anything really - it's just a different list tbh. have you had your new CAMHS referral? ou do know that the statement will need to be redone every time you move LEA? it's a pita but if you start early enough it's possible - i bug everyone from as soon as we know where we're off.

glad he got to school x good luck with head.

I guess we are not registered with CEAS, I dont know who they are?!?

We havent moved due to a new posting, we were moved so many times over the last few years we decided that the best thing for us to do was to move 'home' as a family so that we could provide the kids with some more stability, so that I was closer to my parents for support when DH was deployed, so we didnt end up at the bottom of every referal waiting list and DS didnt have to start over again at a new school every 2 years. I know that things are always worse when we are about to, or have just moved but DS has always struggled with school and things have never been as bad as this. When we decided to move home I thought it would make things easier for all of us but its just not worked out like planned as yet.

I havent yet spoken to the LEA, I spoke to the school SENCO and Autism Outreach prior to moving so everything was in place ready for DS starting his new school (or so I thought!) We were assessed by CAHMS last week but they didnt give much away in the assessment and just said they would be in touch soon with another appoinment.

Ok

Children's Education Advisory Service at Upavon - all service children with SEN should be registered with them. They are usually the first port of call if you are having ed issues due to moving.

At least you have now moved for the 'final' time lol, so I guess it's just a case of sorting out provision where you are. I'll dig out the number etc for you in a bit. You can google it anyway lol, and they are advertised in every families service paper/ garrison/ station guide/ hive etc etc etc.

01980 618244

helpline 0830 - 1530 M-F

are you near the garrison or not, now? (assuming you are army, v. poor lol , are you at all near dh work, or not?)

Thanks for that madwoman I will give them a call too.

We live approx 1.5 hours a way from camp (yes we are army!)so DH commutes daily at the moment. We are now 5 mins away from my Mum and Dad which is a great for extra help. DH was only home for 3 weeks last year and is due to deploy again soon so I really need to be near family, Im having DS4 in a few weeks and DH wont be in the UK.

it's never easy is it... dh was due to miss dd1 but came home early. must be v tough to know he won't be around. we're posted in the summer and probably last tour, so the next two years will be decision time... where to live, where to live... we're trying to emigrate, but with an sn child there are definitely no guarantees lol. i can see us moving 'home' if it doesn't happen, too...
hope you get ds sorted soon x

Hiya

Firstly hugs- I have a 9 year old ds1 with AS/ HFA who doesn't self harm ATM (has done) but is about to be assessed for anorexia.

The others are right; a statement can be issued. DS1 has one, because of his behaviour in the plauyground but also at home.

I don't know why some senco's /schools are opposed to statements but they are, they seem to worry about numbers on OFSTED and the like. Ours was like this, I suppose i\ was a bit of a trailblazer as I took it up on my own and did get one. We weren't even on the SEN register at the time, SNAp needed to do a lot of digging for info, but we got there and DS1 is doing OK in MS.

I wouldn't suggest home ed myself; I know some manage it but with ds3 also asd, and a ds4 of almost a year, I know i couldn't do him justice.

UIPSEA are of course helpful but devillishly hard to get hold of. the NAS are fab also, and when I wanted a palce (starting in April) for ds3 at a SN Unit SOS!SEN (google them) were immeasureably helpful.

Good luck, if you need any tips from an old hand give me a yell.

mad woman - we looked into moving to Canada but couldnt beacuse of DS having SN "too much of a drain on the state" (charming!) we are still looking into DH transfering into the Oz army then going for citizenship after the 5 years but Im not sure I can do another big move.

Peachy - I am going to fight to get a statement for DS but going to tackle the lack of support at school issue first. I have learnt from having to fight for DLA etc that each battle is emotionally exhausting and need to fight one issue at a time. Its good to know that statements have been issued for children with an ASD on the grounds of self harm and issues at home.

I still think the best place for DS to get an education is in a mainstream schol with support as I worry that with the other DSs to look after and DH away a lot I wouldnt be able to give him the education he deserves.

I managed to get a rejection for DLA turned into a high rate care award on appeal so am optimistic that with the right research and very carefully worded letters etc I can fight for the statement I think DS needs.

LOL at your last paragraph- me too (rejection to HRC)

Oddly though for then incontinent non verbal ds3 , they'll try it on with anyone!

Hi Misspitstop, my ds is going through similar struggles to you! The senco at his school is also fairly useless. We have also been considering home education.........

Have you tried calling the NAS Advocacy for Education helpline? Their number is 0845 0704002. You have to call, leave a message and they call you back within 10 days. I have just had my call back, the lady who called was fantastic, a sympathetic ear if nothing else!

Do give that number a call if you havent already, Im really glad I did! She knew all sorts of things about how to help my ds that I had never heard of/considered

HTH

Hi

I am going to spend tomorrow am rinig round for further advise ready for DS parents evening on Thursday.

I am have just spent the last few hours reading the SEN code of practice and have written down sections I need refer to.

Must go as I have to settle DS for bed.

lol, we are more than familiar with the 'burden on the state' clause for canada. we received our 90 day letter last month and are collating our docs as i type. been in the queue for nearly three years and it looks as though meds will be this summer... the start of the appeal process, no doubt. (dd2 is my problem child lol - all my antenatal care was carried out in canada but she was born in the uk, if we'd stayed another two months she'd have dual nationality and it wouldn't be an issue. how the cookie crumbles, eh?) ds1 WAS born in canada and has dual nationality, but as he's NT that doesn't help us much... we're actually posted to canada in aug (trying to convince the army has been almost as much fun as we're expecting to get from CIC lol)

ho hum. i'll let you know if we get in. no point waiting 20 years and wondering 'what if'...

good luck with school. perseverance always pay off, as long as you remember to take time out for yourself too x

Hi again Misspitstop

You have my deepest sympathy in having to deal with S Glos Council. I'm in their area too and I've had more success nailing jeely to the wall.

I see that school are doing a lot for him but it's Aspergers-specific teaching that he would benefit from i.e. social stories, sheleterd base etc and that cannot always be delivered in mainstream school. He's at the age when specialist input really could make a big difference to the longterm outcome.

Also, if he's having difficulties at junior school those will be magnified a hundred times in secondary so he would probably need a resource base then (e.g. The Grange or Filton High school) and by staying in mainstream pre-secondary he may drop off S Glos's radar map when it comes to secondary provision.

Places in the bases are so sought after that if the Ed Pysch thinks it's the solution I would go along with it (if even the Ed Pyschs are as has been pointed out - pretty useless).

Best wishes

OOps! Sorry - ignore the above post i posted in on the wrong thread!

Hi Miss Pitstop.My ds has been a school refuser since year 4.He is in Y6 now. It must be very hard without the support of the school - luckily the Headteacher of my ds's school has been excellent. DS hasn't got a dx for AS despite the paed saying that he was absolutely convinced of it. I have found the parent partnership officer very helpful, every LEA has this service. They will go along to meetings with you. Your SENCO sounds crap so it may be an idea to ask for that if when you meet with him/her again.

Havent managed to make any calls today as DS had a meltdown and have been managing his behaviour and self harming instead. Luckily DS3 is at nursery today, god knows how we are going to pay for that long term but at the moment it is supposed to give me 1 day a week to myself when I can actually rest like the hospital keep trying to admit me to make me do!

Not feeling that great today, very tired and tearful. Struggling to manage with DH away for the week and knowing soon I will have DS4 too and no DH for several months is starting to get to me.