No acknowledgement of AS from school

[Esty]

Background: CAMHS say my son J is borderline Asperger's - certainly has Social Comm Disorder that may or may not be AS but their feeling is he DOES have it. Problem is, there is a 12 month wait to see the Psych who can formally diagnose. J is a chronic school refuser due to AS anxieties.

 

J's mainstream school are aware of his possible AS but I seem to only deal with EWOs (ie they want bums on seats, not concerned with education). J has been attending mainstream school a couple of days a week for a couple of hours in their unit, but this is all he can manage at the moment. His teacher in the unit is fantastic and really gets Joe's positive sides and works around the rest. He's in Year 7 and I think he should have tutors as well as trying to be in school but this is off the radar at the moment. He's on the gifted and talented list for maths and has a reading age of 16 and a half even though he's 12.

 

On Tuesday I asked if he had an IEP and found out he doesn't. They've rushed off a 'pastoral Support Programme' for me to sign, as they say this is the first step (even though he's been registered there since September).

I am fuming to see on the PSP form SEN: ''NO'' and MEDICAL FACTORS: ''NO.'' What are they playing at?? They have attended a meeting where J's key worker from CAMHS said he does have Social Comm Disorder that is probably AS. She has also told me on the phone that these are medical problems that should influence his education plan. Yet when I mention this they say 'it's just your word, there's no diagnosis.'' How can he ever get what he needs education wise if the school refuse to acknowledge his needs at this basic level.

 

Sorry to rant but am fuming. Have left message for CAMHS key worker (who is very supportive) in the hope we can arrange another meeting at school so she can tell them herself. It's like they think I WANT him to have AS. They have no idea how hard it is to get him into school even for these few hours - it's like negotiating for the UN!! They only see his good side because on a bad day he won't even entertain going in. I am going to write a list tonight of all the reasons why AS kids find school hard/ impossible in the hopes that they 'get it'. I am a trained teacher and we did nothing on AS in my training so I never assume that mainstream teachers know how to deal with it.

 

I can't believe my gifted and complicated 12 year old can't get the education he needs from what is one of the best schools in North West England!! My eldest son has thrived there but I feel like I'm walking in a swamp with J.

 

[Sally44]

Get in touch with the National Autistic Society and find out about your nearest centre that can diagnose autistic spectrum disorders and Aspergers. Go to your GP and ask for a referal, some referal times through Health are faster because of targets.

Consider getting a private report from an Ed Psych. If you do, get a professional who is independent (doesn't work for the LEA or the NHS), and who has experience of attending Educational Tribunals as an Expert Witness.

Write a letter of complaint about the waiting time to your Ed Psych Department. Send a letter of complaint to your MP.

Refuse to sign any paperwork.

Don't go along with their denial, start making waves.

Also involve the Parent Partnership.

Get a letter from your GP about your son's school refusal, anxiety, and anything else that is impacting on his health eg. depression, low self esteem etc.

Make sure you put everything in writing to the school and always get their reply back in writing. . If they tell you anything or deny anything verbally, follow it up with a letter eg. further to our conversation about XXX you said XXX and I don't agree with this - etc. This is your evidence for when you go to an Educational Tribunal - you will be amazed how useful their ineptitude is, their denial, their lack of support, their ignorance - it will all work in your favour at the end.

BY LAW the school has to meet his needs. If he is gifted with Aspergers you may be able to get him into a private school, and the LEA would have to pay his fees. It isn't easy to do, but it is being done by parents throughout the UK. Get some legal advice from an advocate that specialises in special educational needs law. Have a look on the NAS website through their link on resources and services.

[JsMum]

Hi, I was in VERY similair circumstances to you and your son this time LAST year, and My son only managed 29 Days in WHOLE year in Year 6. My son was dx additional Mental Health Disorders because of what the Mainstream system was doing to him, and I was been forced to sign PARENT CONTRACTS, I all what sally 44 has suggested and its absaloutly brilliant advise, I managed to get a solisitor and support from other Educational Helplines and did gather enough evidence to prove, that My son NEEDED a specialist school, and he started just before Christmas, he is a different kid already and he is learning to read, he is in a 24hr curriculum school as he wasnt able to attend mainstream activities and needed a lot of multie agencies to help me support him as his behaviour was extream, its been life changing not only for my son but for me too, I spent sooo much time last year with coping with his challenging behaviour that I had no time left to do the things I enjoyed and I had to stop my volunteering work, courses and other personal challenges.

 

Now he has the provisions he requires and I have the time to progress on with my own life, sounds strong I know but I was so deeply wrapped up in my sons life I didnt have any time for anything else and that itself causes families to break down with total exhaustion.

 

I look back throw photos of J last year, he was thin, pale, depressed, sad eyes, upset, angry, his school photo makes me cry, but this year his new school photo is happy, smilely, handsome and very very proud.

 

As I am his Mumxxx

 

JsMumxx

 

[Esty]

Fantastic advice from both of you. Sometimes as parents we are made to feel so awkward and militant that it makes you feel horrible for having to do it but you are right - we are in situations that make us have to be very strong and if some people don't like that, then they don't have our children's interests at heart. In particular my EWO only wants bums on seats - she thinks that school = education and as a teacher I know you can't get further from the truth. Sometimes the last place you need to be for the right education is a mainstream school that fouses everything on exam results.

I am going into school this morning to get answers or at least a date for a meeting that involves teachers rather than EWOs and attendance officers.

Thanks again

[Sally44]

As you have a good relationship with the CAHMS worker, ask them to put their concerns in writing to the school. My son was denied any support because I was told that he couldn't access them without a diagnosis. Then I found out that that is not necessarily the truth, because if an ASD is what everyone is thinking it is, then the supports can start immediately whilst he is going through the diagnosis process. It took me a total of 18 months to get a diagnosis. It is not 'reasonable' to expect a child with the type of issues your son has to wait that length of time before anyone intervenes with supports, strategies or therapies. Then another year to get his Statement finally agreed. As he sounds like he excels at certain subjects I would speak with an educational advisor at NAS to find out what the schooling options are. Chances are his problems in school are down to his diagnosis, as well as some lessons may be too boring for him. And the fact that he is gifted and actually excels in some areas may cause other mainstream children to pick on him. He needs a peer group that he fits in with.

At 11+ that is usually the time that children with ASDs start to find the whole mainstream school process too difficult. Children are more accepting in the primary years. In secondary school 'inclusion' tends not to be the reality as mainstream kids have no contact with these children inside or outside of school. The children with ASDs are aware that they are different and have problems socialising and feel they are stupid. This often leads to low self esteem or depression or school refusal etc.

It is a hard decision to make deciding whether to go for a mixed school ie. mainstream and ASD, or all ASD, or all gifted children. But by law the placement should suit the child and it sounds like his current placement isn't meeting his needs and he isn't happy going there. Find out from the NAS what your placement choices are. Get some legal advice if needed from a specialist solicitor. Find out from the local council about all the State school and independent schools in your area that have experience of ASDs or have programmes for gifted children. Then also look at the private school options in your area.

[Sally44]

Also find out how to fast track the process because your son is 12. If he gets a diagnosis inside a year, then another year for a statement, you are looking at age 14. Some private schools go post 17. But you need to know what your chances are of getting a place in a private school. The less suitable LEA provision there is in your area the better.

[Esty]

Thanks again. He's fairly happy going to school unit for his two/three set days for a couple of hours although he does have a motivating reward system The problem is that at the moment he doesn't get any provision for being gifted and the school are still acting like I'm making it up that he has social communication difficulties. My lovely CAMHS worker rang the school this morning to put them straight and ask about G and T - the attendance officer on the phone said, 'why, is he clever?' Mmm yes well he is gifted in maths and has a reading age 4 years above his chronological age....so maybe a bit clever!! The school officer kept saying 'mum says he has Asperger's and he doesn't because he doesn't have a diagnosis' as if I am making it up!!! CAMHS worker said ''he may well have AS (we only don't know because there's a waiting list) but he definitely does have social communication and you (the school) had better write him an IEP which addresses that.''

So hopefully we are getting somewhere. Also been advised to get in touch with the gifted and talented society as they may be able to help.

[Michele17]

It's a load of old tosh to tell you that a PSP is the first step! The IEP is definately the first step and by the sounds of it, he should be School Action Plus because he has involvement from an outside agency EG his CAMHS key worker. It's DOESN'T matter that he has no diagnosis. Secondary schools! Pah!!!!

[Esty]

Just sent a fab (even if I say so myself!) letter to the person who wrote the 'PSP' saying we decline to sign it because we don't think it accurately reflects the situation. I've said we need acknowledgement of his additional needs (Social Comm difficulties and giftedness), a proper meeting to discuss an IEP and that I want a named person to deal with and pass on info because, surprise surprise, when I went into yesterday, his mentor hadn't been told ANYTHING about the phonecalls and hoohar on Thursday and Friday. I also said this was to be dealt with by the pupil support unit, senco and teachers NOT the attendance staff. I also outlined WHY he hasn't been diagnosed - not that he necessarily hasn't got AS but that we just don't know because of waiting lists to see the psychologist. And even if he hasn't got full AS he still has most of the traits and this needs support.

Feeling much more positive but also crapping myself at what I've started!!

[Sally44]

I know the feeling.

Get in touch with your Parent Partnership and make sure they come with you to all meetings between yourself and any other professional. Ask them to take notes of what is said and agreed. I have heard different opinions on the PP, some good some bad. Mine were not pro-active, but they do have to tell you your rights and they can be very useful as a witness to what you are being told and they can tell you if the LEA is telling you the truth, and you can also check any information you are given with the NAS helplines.

You do have to keep your 'poker face', even when you feel that adult diapers would be quite handy!!

But the truth is that if you press, and put all your requests in writing (that is your evidence you asked them to do the stuff they are supposed to do), and you gather evidence that his current school are not doing it and therefore are not meeting his needs. Then the school and LEA are breaking the law. Just keep up the steady pressure and work towards a Statement. And make sure your Statement is fulfilled as per the requirements in the Code of Practice.

I had a number of things happen that changed me from being trusting and scared to being just so damn angry that nobody and nothing could stand in my way anymore. The final straw was when my son was turned down by the LEA for extra hours of support in school. When I asked the LEA why they said "it is not because we don't feel that your son needs this extra support, it is because the school cannot demonstrate how they will use those extra hours effectively." What absolute XXXXocks! Excuse my french! So they were telling me the school were incompetent and couldn't fill out the paperwork correctly and had no idea how to meet his needs, yet they refused my application to move him to an Enhanced Resource school that did know how to use extra hours effectively and support his needs.

Make sure your son has IEPs and make sure the PP are there for IEPs to ensure the targets are SMART. Through using the PP I demonstrated that not only was my son not acquiring new skills, but that he was actually losing skills and knowledge he already had because they didn't know how to teach him. And I made the school record these loss of skills in his IEPs, eventhough they didn't want to because "we like to be positive about all our children". That isn't being positive that is trying to hide the fact that he is failing under your supervision. All children chould make progress. The only way a school would get away with a child not making any progress would be if they had medical evidence that the child was brain damaged. If the potential and ability to learn is there then the child should make progress. If they don't then the level of support and structures needs to be increased term on term until there is permanent average improvement.

I got my son a mainstream place in an Enhanced Resource school - as all the ER places were taken. Once the place was offered to my son, two inclusion officers from the LEA came to my house and told me "if you continue and move your son to XXXX in September he will not be in an ER class. He will be placed in a mainstream class and he won't receive the supports he needs". That is illegal. The PP confirmed to me in writing that that is what they said to me. So I sent a letter to them confirming what they had to said to me, and I explained why it was illegal. And I told them that if they tried to remove my sons mainstream place within the ER school that it would be against the Disability Discrimination Act and I basically ask them to clarify in writing what their position was ie. were they going to refuse him entry to the school or refuse to support his needs. I also sent a copy to the head of the department at the LEA, the professionals involved with my son, my local MP and the SENCO at the ER school he was moving to. Suddenly, all professionals changed their mind and said he could not remain mainstream and that he needed to be in an Autism Unit. That was because there was a special needs school that did have a place available. But my son is cognitively high functioning and this school was not suitable either. So I got private reports and a solicitor. It wasn't cheap. But having been through the process once I am confident I could do it again with the support of the NAS and private reports if needed.

The key is to get written evidence. Not words. You need evidence of your childs needs and what supports are recommended to meet those needs. You need evidence that the school is not fulfilling its duty, or is unable to meet his needs because of lack of experience.

It will put you in confrontation with the school, but I found that although we did have very uncomfortable meetings and even heating exchanges with the school and some professionals. Everyone was supporting what I was doing and understood and agreed that he should move. In the end it was only the LEA who were going against the advice of their own in house professionals and I had that evidence in writing.

When we went to Tribunal the LEA did not attest anything in the private reports. Infact both the private reports were accepted by the tribunal in their entirety and the LEA did not want to add or take anything away. We discussed some wording issues, and these were agreed in terms which were very favourable to my son.

The panel are not interested in an inclusion officer telling them how good the current school is, or how hard they try etc. All they want to know are facts. It is like a legal court. They want the LEA to follow the code of practice and when the LEA refuse to agree the tribunal looks at the evidence and makes an award using the CoP. If you don't win everything you want eg. you agree the Statement but not the Placement, you can still appeal against that decision, and once you go to appeal your legal fees are paid for automatically.

I know of a parent who continued through more than one appeal, and finally the panel made a judgement that "it was a better use of resources to spend some money on the child now (ie. send him to a private school and the LEA pay the fees), than to have to spend more money on him as a dependent adult." I think that is brilliant! I'm not saying that happens every time, but it is worth fighting to get something better than what you currently have. You really don't have anything to lose.

[Esty]

It still amazes me that as parents we have to find all this out for ourselves and there is not a common pathway for all SEN kids. It should be 'go to point (a) does it work? Yes - Great. No - go to meeting/ agency B etc It is enough to make me become a politician just to sort this mess out.

 

I got a letter from school today saying there will be a meeting to discuss his education plan which will involve EWO, Ed Psych, CAMHS key worker and deputy head so at last they are taking it seriously and not just palming me off with the attendance officer.! They told me today that the meeting was in direct response to my letter. I am very happy!! I will take the advice and try and get PP there and my husband is coming as well so plenty of witnesses (husband works in College management and will point out institutional failures in an instant). It might speed up diagnosis one way or another as well as the Ed Psych will need to see J before the meeting. I know this particular Ed Psych takes private patients as well so might have a word with her re: that.

 

I actually think this school is the best one for Joe because they have a good Gifted and Talented programme and are very high achieving academically. He just needs actual teachers to teach him in their unit permanently (I don't think he could return to regular lessons due to social anxiety) as well as the lovely TA who works in there and is fantastic with him. We also want tutors for him at home as he finds it impossible to attend full time. I just want the school to acknowledge his SEN and cater for them - they are very good at getting fantastic results out of compliant kids (like J's older brother who is doing extremely well at the school) but they need to stop passing the buck when they get more difficult cases that don't fit their established routine.

 

Will keep you all posted and thanks again for the advice.

 

S