Advice on Aspergers please.

[bonkerz]

Not exactly sure where to start here really. Have posted on a few occassions about my DS who is 7 in July and about his behaviour in school.
For the last 2 years we have been having trouble with DS displaying inappropriate behaviour at school. He gets very angry and has huge tantrums which can sometimes turn violent and aggressive. School have excluded him twice and have said they are finding it increasingly difficult to cope within school.
At home he can be argumentative but we dont see the aggression that school talks about.
We have been working with family steps for the past 4 weeks to come up with different techniques to try and control his behaviour but school seem to be struggling with implementing the techniques.
I have now been asked by the school to go to the GP to get a referral to Mental Health and to get DS assessed for Aspergers and Autism. I have looked at symptoms for aspergers and must admit that DS does display some signs ie unable to operate in social situations, Unable to recognise other peoples feelings etc. He is above average intelligence and the school are not able to challenge him educationally due to lack of staffing apparently.
I suppose im really after some support from other parents who are going through or have gone through the process for diagnosis of aspergers or autism. Im really scared of the words mental health and how this label will reflect me as a parent. Is my son mad? am i a terrible mother?

Sorry to hear you are dreading parent's evening.

TBH I wouldn't bother going if you think it is going to upset you more. Given your son's problems you should be having regular feedback from the teacher/school anyway. The teacher should be able to keep you advised as to ds's academic progress which is really the only reason for going to the parent's evening. If ds is 7 I presume he will get SATs results later on which will show you where he is academically.

My dd is 10 and attending parent's evenings is useful for her as I get to know about her academic progress. However I don't think this is useful for ds as I am in regular contact with the school now anyway.

all done. As expected really, teacher and i both doing the pleasentrys but no real info!#
DS is 6 but will do SATS in May. Teacher saysd they will have to do them differently for DS and just take them at his pace but she is already aware he is achieving into level 3 so these will only back that up really. Nothing else really said that we didnt already know TBH. Still achieving high but behaviour is now hindering this. Have requested more work for home to help keep his levels up as he loves doing work at home!

My ds is 6 too bonkers (I used to be amynnixmum) - our situations sound so similar its uncanny. Good luck with the statement. I really hope he gets it as it has ds's has changed all our lives

Hi Bonkerz, I also just wanted to add my support.
Have also been through this with DS2 who is 6 and in year 2, our nightmare time was in year 1.
He got a DX or HF/ASD at the end of reception and then it went really badly wrong, lots of aggressive behaviour, lunchtime exclusions and two day informal exclusions.
It took us all year to get his statement, but all has gone very well since we started year 2.
We now have a fantastic teacher, who really does make a difference, as she never treats him like a naughty child. Also 1.1 support from a lovely TA.
We do still have the odd day or thing that goes wrong, but it is so much better. I have a contact book that the TA writes in every day, so that I know what has been happening, it avoids those awarkward pick ups, where you dread what they are going to say.
We are now finally able to talk about how he is getting on with his work rather than his behaviour.
I have found for myself, that the help of other parents in similar situations has really carried me through.
It is a hard road, but well travelled by others, you are not alone.
Good luck with getting everything together for the statement, my advice would be try not to get too upset, if (more like when) they over run the set timescales, because getting it right is the most important thing, and do not listen to anyone who says you will not get one, if you are willing to go all the way, you will.
You sound like a lovely mother and I am sure you have the most fantastic son.

Hi Glad the parents evening went off O.K.

Good luck with the big meeting later this week. When I attended a meeting like this a term ago, I found to spell it out in no uncertain terms that I felt ds was not getting the support he needed. I did not rant but was fairly forceful and did not pull punches. After this meeting I noticed that the school became much more helpful so I wished I had been more aggressive at an earlier stage. A shame it had to get to that point but I have found you will get no action unless you push very hard for it.

hi Bonkerz
just wanted to say sorry for all the worry you are having. It must be very stressful for you. I am in a somewhat similar situation (have posted on SN board about it) although my DS is only 4. Would you mind me asking what your DS' behaviour was like in school at 4 and what, if anything, you did at that age to try and help him? I'm just looking for some guidance, from someone who was been there. Best of luck to you and your DS.

thanks all again for this support, its definately proving to be invaluable to me at this moment. Thank heavens for mumsnet!!!

chisigirl, at 4 my son was aware of rules but didnt understand they belonged to him. He was described as forceful and strong willed but we didnt have any violent rages or naughty behaviour. Personnally i feel this was because he had a brilliant teacher and 2 TAs in his class so had the attention he needed! In Y1 he started showing disruptive behaviour and was starting to have a lapse in concentration etc and things have just escalated to the point we are at now!

I am now sat with all the statement stuff in front of me. Am gonna trawl internet looking for help.

ok have made my first draft and wonder if any of you would take a look please and tell me if im on the right lines or not?

Just catching up on threads. Good luck with all your searching on the internet.

well shockingly i was due to send my statement thing off this morning, forgot and when i got home a letter from the LEA saying they were not even going to conside DS for a statement despite not having my report and only having the schools info!
Am furiois. HAve emailed the person who wrote the letter and the reply basically said that she understands i disagree with her decision but she is leaving the LEA tomorrow and will pass my email over to her collegue who will be taking over from her! Have rang Ace again and have now appleid for appeal BUT im so annoyed that i havent even been heard!!!

bonkers - it is quite common for the LEA to refuse to assess at the first request. It happened to me and has happened to everyone else I know who has tried since, in my area.

I think they work on the idea that it will put a few off, as they won't want to take it to appeal.

My advice is to imform them that you will appeal and ask to meet with your assigned statementing officer.

I met with mine a few weeks after getting turned down for assessment and he agreed to send it back to panel.

The panel then agreed to assess.

They just seem to try and make it as difficult as they can.

Try not to let it upset you too much, and just keep pushing them for a meeting.

thanks for the reply. It really is hard to not get upset. I feel that as the parent im not being listened too and at the end of the day he is my little boy and he is suffering!
Will definately keep pushing for the meeting and if the LEA think im gonna lie down and let them walk over me they have got another thing coming.

bonkerz

Am sorry but not unfortunately surprised to see that your initial request was refused. Many are.

You will need to be persistant with these people and be prepared for a long tussle with the LEA in question. If you back down they will quite happily let you do this. You cannot therefore back down.

Certainly meet with the LEA and appeal against their crass decision. You may want to meet with them also; we did this and it helped us understand their tactics more to out advantage (we got a statement for DS in the end).

An update and support needed here cos i feel like im losing it big time!!
Had phone call from LEA 2 weeks ago saying they were going to reassess my application for statementing. They also said that i should wait before applying to appeal. Got a letter yesterday saying after reveiw they feel that my son gets alot of support from me and thereofre doesnt need a statement! I rasng about appealing and was told the deadline had passed because they go from 1st letter not reassessment letter!

School rang me yesterday to tell me DS is really struggling at school, they tried to blame home for this and said they wanted to exclude him! I told them i would not support exclusions and was basically told i was being unhelpful. I really feel exclusion is not the answer as it doesnt work as a punishment and all its going to acheive is DS not wanting to go to school! the head said that as a school they couldnt cope with DS!!

Went to see teacher tonight and was told that either i could choose to remove my son voluntarily till such time as a diagnosis is made OR they will insist on exclusions and this week he should have had 3 days exclusion!(45 days and he is out for good! and he currently has 3 days so this weeks would have made 6!)

I really dont know what to do or where to turn! The school are saying to us that they cannot cope BUT because DS has no diagnosis they dont know wether to treat as normal child or as if he has aspergers (which is becoming more and more likely!) I dont want my son unhappy. At home he is slowly becoming harder to handle. He is now showing signs of rage like he does at school and is traumatised by the slightest change (just had new kitchen fitted and he has been hell!)

I dont know if i should just look for a new school or not?
I have rang PEAD today who has agreed to assess him for aspergers BUT this isnt till end of June so i am pushing for it to be done ASAP so DS can stay in school.

Basically school are saying NO DIAGNOSIS then NO EDUCATION!!

another comment made by teacher tonight was that my son was beyond atrategies and discipline. She sadi she didnt feel he was intentionally naughty and she also acknowledged he is now being bullied!

nooone around?

Bonkerz

Have only just seen this and am really sorry you're having such a hard time (not just to say your son either).

I would certainly try to speak with someone at the NAS (National autistic society) or IPSEA (they can be hard to contact though as their phone line is often engaged) as a matter of urgency.

If you copy and paste this post of yours onto the Special Needs forum (it seems to be a more widely read forum, also a lot of them have experienced tangles with LEAs) you may get some more responses as well.

You're both being badly let down here.

Hi Boonkerz, sorry to hear things are so bad at the moment.

IMHO there is no point in thinking about moving schools at present until you you have the diagnosis and stat assessment sorted out. Also tbh I doubt whether another school would be keen to take him without the proper funding.

I would certainly NOT take him out voluntarily from school. This won't help your ds get the education he needs. If the school are going to insist on excluding him then this will have to be done with proper documentation. This will give further support to your application for stat assessment and I can't for the life of me understand why the school are not now pushing for this as a matter of urgency. I think you need to talk to the head about all this rather than the class room teacher, it is not for her to decide on exclusions anyway. Like Attila says you need proper advice on this from NAS or IPSEA. Someone said IPSEA were easier to get in touch with the evening so this might be worth trying.

In the meantime keep posting on here. I think it is disgusting the way the school and council are dealing with this but hopefully now things are getting to breaking point you will start getting the help your ds so desparately needs.

thanks for the replies. Ive been in touch with the peadiatrician again who is trying to move DSs appointment forward as a matter of urgency and have now got an educational welfare officer who has been liasing with school for me. As of tomorrow my son will be going part time 9-12 to school and will be given work for the afternoon. Not sure how i feel about this to be honest and after speaking to Parents In Partnership support officer i am almost convinced that this is another way for the school to get rid of my son. Moving him will not happen as there are no schools around that are equipped to deal with a child who has extreme behaviour problems but who is acheiving almost a year above academically!!
have called a meeting again next week with Ed Psych and Head plus SENCO and teacher to try and find out what else we can do to support DS.
TBH am fed up of fighting.

Hi Boonkerz, given all the problems you are having why are the school not applying for a stat assessment themselves? I just cannot understand this attitude. I don't think a formal diagnosis is necessary to get a stat assessment anyway.

My ds also has AS and ADD. He can be very hard to handle although academically able. Can be aggressive in some situations as well but this is getting better now the school are adapating the correct techniques to help him.

It sounds to me that your ds will need full time one to one support from a class room assistant together with imput from an experienced ed psych in order to assess the national curriculum. The sooner this is sorted out the better as I don't think attendance for half a day is acceptable long term.

Hi Bonkerz, really feel for you at the moment went through a lot of this with DS1 (he was diagnosed with AS at 7 and was 10 last week). Unfortuantely having a diagnosis didn't stop the exclusions but did go a long way towards getting the help he needs included in his statement.

The way he is dealt with in school will make a huge difference to your son. Does your LEA have an autism outreach worker ours visits and gives the teachers tips and strategies for eg somewhere to escape to when he feels a tantrum coming, traffic light systems - where he has a green traffic light picture when he's ok but a red one which means don't come near me just now I NEED SPACE. Sorry this is all abit incoherent.
I think the NAS website has ideas and strategies for dealing with AS children in the classroom.
Think on this one it may not be your son who is the problem here but staff who don't know how to deal with AS kids(don't want to seem offensive hear - married to ateacher etc) poor classroom management and organisation and a need to look at what a child is doing wrong rather than what they as an adult can do to reslove the situation. I say this because that i can finally pick up ds1 from school on y5 without dreading what he amy have been up to and don't constantly fret that I'll be getting a call from the school sec to say he is to be excluded again! He has for the first time ever got a brilliant and understanding teacher and guess what he rarely has tantrums and do you know what when he does his teacher says "i can see why it happened perhaps next time we can..." His teacher last year would say " O it was such a small thing I really don't know what his problem is!!!" He has AS fgs{angry) at the teacher, not the AS

Finally ds was excluded last year for 'hitting his TA' and I got a real lecture from the HT (no longer there) but, when I went to collect Ds he was with the TA who said oh I think I may have been holding his arm a bit tight so he didn't run away!!!

Sorry this post is way too long but DO keep fighting - I know its really hard but, become an expert on AS (you already are one on your son) as\this will help you get a dx and if your happy to give him a 'label' let the Professional know as IME they can be reluctant to dx if they think you would be upset or offended by it but, conversley would not give a dx if he didn't have AS IFYSWIM.

Will be back another day when brain is in gear - may be a while!!!

we have an appointment tomorrow with a doctor to do intial health assessment. Do you think i should take a list of DS 'symptoms@ as i see it or wait for the questions?

Had pead appointment today and pead (after an hour of questions) said he felt DS had a problem that was deeper than ADD and ADHD BUt that DS fell into the large grey area and it may take some months to give diagnosis!! Am now in limbo again.

What shall i do about school now though? He is supposed to be part time till he has seen PEad, obviously thats happened but when i spoke to head she said that she wanted it to stay like this!!!

Sorry to hear you're still such a long way from a definitive answer and some kind of help for your ds, its so fustrating .There is some useful stuff on www.nas.org.uk the (national Autistic Society website) though you've probably looked at this already.

Have the school indicated what the triggers are? perhaps they could work with you to eliminate/minimise these. Examples incl. visual timetables, an individual desk where he can 'escape' to or just work by himself, warning of change etc etc. and maybe letting him opt out of situations he finds difficult - in time he may be able to cope with these but its a gradual process.

I'll see if I can find anything useful amongst all the SEN stuff we have here but do bare with me, filing is not my strong point!

Looking back through the posts i too would be reluctant to accept an arrangement for your ds to be in school part time. As as far as I am aware this is actually illegal - and is a cop out by the school to hide the fact that they are excluding him