Tez

Going to watch this with interest. A is 14 and nearly taller than me and still does it. Can be quite painful at times. Waiting for an OT appointment which we're hoping will give us some guidance.

Well, we had an hour long meeting with the Deputy Head of Inclusion & Access at the LEA. I have similar problems to A in processing information and parts of conversations only register in my brain hours later so I asked whether he minded if I recorded the session. He said that he was quite happy for me to do so. The meeting overall seemed to go well and he seemed to be genuine but as my husband said he wouldn't be much good at his job if he didn't, would he. He wanted to meet with us because he said that he had some concerns about big gaps in the evidence provided showing that despite resources input A wasn't coping. He said that he could see that he'd only been on schoolaction+ for a year and that given that A is about to enter year 10 he felt that the panel would refuse to assess and say that it was a temporary blip. He said that having read my advice he felt that A had probably not been coping for years and he wanted some verbal evidence to give to the panel as to how he managed to get from Reception year through to the end of year 8 without being on the SEN register. Hopefully, I was able to show that A had not been coping, that in my opinion he should have had support since he entered school and that I had letters which indicated that the school thought he needed 1 to 1 support but weren't prepared to provide it and that infact during Junior school alot of extra support had been given to him even though he didn't have a diagnosis. I also pointed out that I had been fighting with the schools for years to get him help but because he internalises so much nobody believed he had any real problems. It seems a little unfair that he should be let down again only because others had failed in the past to give him the support that he needed. They also wanted to know why A had not been seeing an Educational Psychologist apart from when the school applied for exam dispensation. This had been discussed but the school felt that since A was already seeing a Psychiatrist at CAMHS they would be replicating effort and possibly causing more harm than good and significantly increase his anxieties. The Psychiatrist attended IEP meetings and gave advice to the school on a regular basis even between reviews. The LEA then said that they were concerned about the amount of school that A was missing and although they accepted that we did not want the PRU it might be a temporary solution because even if they agreed to access it would be February before it could be finalised. I told them if they could get A statemented by February I would be happy, he is still to ill to attend school anyway and I produced the Doctor's letter signing him off and requesting home tutition. The use of the term "school refuser" was discussed and the LEA have agreed that they will not use the word in any paperwork and accept that A's problems have nothing to do with school refusing after all they agreed he has been signed off sick by a doctor. The LEA officer said that he had noted that a referral had been made for home tutition and he would expediate it. We have agreed to go and see the PRU unit but have made clear that we do not see it as being suitable even short term and the reasons why but have said we will try and keep an open mind until we have seen it and discussed our concerns with the Headmistress. After all the information gathering we have been told by the LEA that they will try to expediate things since they accept that A is missing out on vital areas of his education particularly since he is due to start his GCSEs. I got the impression that the meeting went reasonably well and the Parent PArtnership supporter who accompanied us and knew the officer says that she thinks he's on our side. After all she said he had no need to call you into a meeting the LEA could just have refused to assess and delayed the whole process. Please keep your fingers crossed for us and thank you everyone for your help, support and good wishes. (Just as an aside - It always amazes me what little details these people pick up on. In the minutes of an IEP review meeting dated 9th May 2005 it was noted that the SENCO had been instructed to apply for a Statutory Assessment. She didn't submitit until July 25th and only then because we complained to the Governors. The LEA wanted to know why it had taken her so long and said that the delay caused by her and the loss of education it was causing my son was one of the reasons they wanted to speed things up for us.)

Hope all goes well tomorrow. We had this same problem a couple of weeks ago. All A's friends away on holiday and decided we would have an official birthday when they returned - this is going to happen tomorrow. On his actual birthday A was pretty good. He decided he didn't want any presents or cards and decided the day before that the best thing to do would be to try and sleep through the whole day so that it didn't exist. Of course, it didn't work because he rarely sleeps but at least trying to control the day made him feel better. Really hope all goes well tomorrow. Let us know how you get on.

Elaine, My husband and I see people selling drugs to youngsters all the time including in good areas. We are probably more aware than most people of what is going on because the jobs we do necessitate us being very vigilant about this sort of thing. It happens in all areas good and bad. Current figures suggest that 33% of 15 year old girls have taken illicit drugs and 45% of 15 year old boys. Almost 80% of children will have been offered drugs by the time they leave Junior School. Shocking? Yes, I agree and very worrying.

We've been very lucky with CAMHS. A sees a psychiatrist there and she is very supportive and very knowledable. Like others we were asked what we wanted from her. She always takes time to listen and will always try to suggest solutions. Of course, these don't always work but then if it was that easy autism wouldn't be the disability that it is. I have this psychiatrist's mobile phone number and her email address and have been told to contact her whenever I like. She always responds to any messages that I leave her quickly. I think that sometimes all I need is an "expert" to back whatever I've already decided to do such as withdrawing A from school, backing my insistence that he be allowed to access his work via a laptop, attending meetings at the school to explain to staff exactly how A's difficulties effect him and his psychiatrist at CAMHS is excellent at doing this. Baddad - sorry you're having such a difficult time accessing support for CAMHS. When A was diagnosed we were told that there was a 3 year wait for CAMHS. A just wasn't coping and our GP said this was unacceptable. He picked up the phone and insisted on an appointment that week and refused to put the phone down until he got one. Maybe we were just lucky but it worked for us, might be worth a try if you're ever desparate.

Good luck with getting it sorted.

Ype, agree with Waccoe. My son was diagnosed at 12. We went to GP with a checklist of his behaviours against the diagnostic criteria for what we suspected and said that we were concerned that he was no longer coping at home or at school. We told him that we wanted a referral because we suspected that he has Asperger's Syndrome and Dyspraxia. GP spent a few minutes talking to A and then wrote the referral. We were warned it would be a long process but things rapidly deteriorated to the point where A couldn't cope at all so I returned to our GP who immediately got on the phone and I had an appointment for 2 days later. Good Luck.

LEA phoned not long ago to confirm the place and time of meeting. In passing they mentioned that they might want to my son's school doctor to independently confirm that he is medically unfit for school rather than his own Doctor. Guess who the school doctor is? Yep, the Psychiatrist who signed him off doubles up as the School Doctor I kept quiet about that one.

Psychiatrist just emailed me a copy of the letter so I'm all prepared. Thanks Annie. Now going to spend the day organising my correspondence so everything is to hand.

Annie, Don't be afraid to repeat yourself. I'm so tired at the moment that I over look the obvious. I was supposed to have a copy of the letter and I have seen a copy but my copy appears to have been lost in the post. I will see if I can obtain a copy for tomorrow. Thanks Terrie

Hi Simon, I've got my copy of the SEN code of practice and I've highlighted all the relevannt areas. I know I'm naive but I'm working on the basis that they think I'm completely stupid. I know that I've got a strong case. If I'm doing them a disservice then nothing lost, if I'm right I'll be glad I've taken extreme precautions.

Phasmid, I agree. Thanks for the link as well. Will help in my preparation for meeting with LEA. Yet another area where they are failing to provide - out of school since April on health grounds and despite school chasing up provision and Doctor writing to LEA no alternative provision made.

Sorry Annie we posted at the same time. I totally agree with you. LEA's have a really weird way of defining school refusing and it gives a totally misleading impression. Why do they insist on being so contentious. I'm sure they do partly because they know it will upset or anger you and that you are less likely to be able to think clearly and strategically then. It also leads you nicely away from the real issue, namely that they are failing to provide appropriate provision for your child.

Hi Simon, Thanks for the advice but I think that the LEA is just playing mind games with me here. Ashleigh's psychiatrist has already written saying that he is out of school on health grounds. To be fair no one is giving us a hard time about A not attending school, in fact it was the school who told us not to send him in any more because they could not stop the bullying and they saw the effect that it was having on his health and they wrote to the Education Welfare Officer confirming this. This has arisen because in a conversation with the LEA yesterday the LEA said that it was obvious that he was school refusing. I object because I think this phrase is very misleading and I want all record of it amended in the records with a note of my objections and the reasons why. They don't want to go down the Statutory Assessment route even though the school has requested it and they admit that they are not meeting A's needs and they don't think that they are capable of meeting A's needs. I think that this is their way of implying that the blame lies with my son or us. I will refer them back to the Psychiatrist's letter and I will reiterate that it was the school's decision for him to remain at home not his or mine.

Hi Waccoe, I know what you mean. I did as well but it's apparently been rebranded and the term school refuser is now used even when the child has a good attendance record and doesn't refuse to go to school or play trunt. It's very misleading and takes all the blame for the anxieties away from the school and the LEA and places it with the child and the parents. That's why I object so much. See others agree with me. Sorry Rant over.

During my conversation with the LEA this morning they mentioned one of A's difficulties as being school refusing. I've had a quick look on the internet for a proper definition of this and my understanding is that the child doesn't have to refuse to go to school, but when attending is very anxious and has somnatic symptoms. It isn't explicit about whether or not this fear has to have any rationale to it. The appropriate response according to the internet is exposure therapy. My problem with this is that according to this definition A could be described as being a school refuser. He will go to school every day but it causes him great anxiety and does cause him to have somnatic symptoms and to self-harm. However, these aren't irrational fears. He has been subjected to intense bullying and the school have admitted that they can't keep him safe which is why he isn't attending school. It was ultimately the school's decision not ours. Also I cannot see how exposing him to more bullying without support will solve anything. I think I'm going to ask for it to be put on record that I object to the use of the phrase school refuser in relation to A and my reasons for wanting this, but before doing so I would appreciate others thoughts as to the advisability of this or otherwise.

Karen, I'm going to have to learn to wise up, I'm really too naive but I am learning just not quickly enough.

Hi Karen, The fact that he's going to need specialist provision post 16+ is another reason we gave to the LEA for wanting a statement and why a PRU wouldn't be suitable. We are talking about at least another two years at school and probably another 2 years on top of that for A levels. I agree there's always a first time for everything and if we want something for A that hasn't been done before, there's no reason why he shouldn't be the first. Given that they've said they don't know how they're going to meet his needs they're going to have to be prepared to try something different but I want it guaranteed with a statement. Simon, I've got a copy of the SEN code of practise so will take it along with me. Parent partnership will be coming along as an extra pair of ears. I will ask the LEA if I can tape the meeting so I've got something to refer back to afterwards. Thanks for the idea. We've told the LEA that we don't understand why they can't put the resources into the school before the statement is in place, given that everyone is agreed that specialist provision of some kind is going to be necessary. I think that they are just trying to get away with a PRU and no statement because it is the cheapest and easiest option for them, but it's not the right solution for A and it's not going to happen.

Hi Annie, I've just managed to get through to John Wright at IPSEA. He tells me that I should go to the meeting only if I have time, and only so that the LEA at a later stage can't throw back at me that I wasn't prepared to discuss things. He's told me that whatever the LEA are prepared to offer A needs a statement and the fact that they've agreed they're not meeting his needs and don't see how they can meet his needs no matter how much money they throw at him, just goes to prove that he needs a statement. He thinks that they might have some sort of offer up their sleeve that they think I will go for without a full assessment but he's warned me not to accept anything at the meeting but to come away and think about it and if necessary ask others for advice. IPSEA will advise if I can contact them. I've done a bit of research and it would appear that my LEA only issue 1% of pupils with a statement compared to a national average of 3%. They have not paid for out of county education for any pupil. They are considered to offer excellent value for money but below standard SEN provision. Think this is very telling!!!!! Looks like I'm going to need to prepare for the fight on Wednesday. John Wright has given me the direct line phone number to their Tribunal supporter because he thinks I'm going to need it.

My son's school have requested a Statutory Assessment of the LEA. I have completed my parental advice and sent it off. My named officer has just phoned me and asked me to go to a meeting with her colleague on Wednesday to discuss ways forward. She says that they have a problem, it is obvious that A's needs are not being met and they can't get a statement in place until February at the earliest. At the moment they see little point in going down the statementing route because of the timescales involved and the fact that he is due to start year 10 in September and also no matter how much money they throw at the school they don't think that they can meet his needs. As an LEA they accept that they have to find some way to meet A's needs. Seems to me I'm being played again!!!! Their current suggestion is that they look at sending him to a Pupil Referral Unit that does not accept pupils with behavioural problems, it is for school refusers, pregnant school girls and pupils with health problems. We have discussed this option already and are not keen. We have pointed out to the LEA that this will not meet his needs, he will still have sensory problems, he will lose contact with his friends, the turnover of pupils will be too great given that A needs continuity of people around him and it will not in any way teach him to cope with the real world and the staff aren't ASD aware. PLEASE can someone advise me how I should go about this. I want the statutory assessment. I feel that I have been messed around for 10 years with promises that are back tracked on as soon as I take my eye off the ball. I want some legal protection whatever educational establishment A eventually goes to.

Hope all goes well for you and you get your dx. Will keep my fingers crossed for you.

Yep, and us. Annie, you're getting off light, aren't you? Admittedly our son doesn't like to shower very often but when he does there's a mountain of wet towels tossed on the floor - one to stand on plus one to cover that when it gets damp, a bath sheet around his bottom half, a bath sheet around his top half, a towel for his hair, a towel for wiping his eyes when in the shower and 3 0r 4 when he comes out.

When an LEA has received all the relevant advice it has requested in order for them to decide whether to carry out a Statutory Assessment, who actually makes the decision and what are their qualifications to do so? Also, when an assessment has been carried out who actually sits on the panel to decide on whether a statement is required and if so what it should consist of and what provision should be provided, and what is their qualification for doing so?

I think that the gist of her argument was because we are in her opinion not a "normal family" and we spend time doing our own thing my son was not learning to cope with the "normal bickering and nastiness" that occurs in family life. We choose to spend quality time together not arguing over what to watch on the tele. I sit up all night most nights talking with my AS son about anything under the sun when he can't sleep, but I don't spend my time arguing with him. If we did spend more time in normal family conflict, so her argument goes, my son would have no trouble coping with the nastiness that he recieves at school and so in effect we are being emotionally abusive by not teaching him to cope with this in the safer environment of the family. I think she's talking rubbish and I don't think our life style is unusual but it just set off a train of thought as to how other people organise their family lives.

Had a conversation with my husband the other night about how we work as a family. He'd called in at a friends on his way home from work and his friend's wife had spent about an hour telling him that we were not a family because we all spend too much time in separate rooms doing our own thing (we all have our own interests which we pursue) and not sitting and talking or watching tele together. Our taste in tv programmes is very different so we do usually watch tv in separate rooms but will sit together if we are all watching the same thing. We spend about 4 weeks per year away on holiday as a family where we are with each other 24/7 and this works well for us as well, we enjoy the time together. Need less to say we don't agree. with his friend's wife's view. We are all very much loners and enjoy our own space and time too do our own thing, but we do spend time everyday talking to each other, discussing things that interest us and supporting each other with any problems we might have. It works for us, but it made me wonder how others view their family and what to you constitutes being a family?