mossgrove

I've come to this thread rather late. Medication can be a useful tool if you are clear about why you are doing it and what you expect to achieve. There have been many success stories when using meds to help control ADHD behaviours in particular. That said, i fully understand Bid's position. If medication is being used as a substitute for tackling the issues in the school or other environment that cause so much stress then they can do much more harm than good. I would say it is impossible to answer the original question until you know what the meds are, why they are being offered and what it is hoped that medication will achieve. Simon

Haven't heard of it myself, but theres some stuff on the web. http://www.nlm.nih.gov/medlineplus/druginf...er/a682388.html Simon

Lisaa As Helen said in the other thread, it isn't up to the Pediatrician whether you get a statement or not. The pediatrician is part of NHS whilke the statement is an issue for Education which the LEA are responsible for. They pediatrician may have an opinion that you are unlikely to get one, but it is only an opinion. This site is full of people who have statements for their children. Many of them have been told at one point or another that they would not get a statement. A statement is done on the basis of a childs needs, not on the basis of a childs diagnosis. That said, a diagnosis is almost invariably useful as it helps to establish what your childs needs are. You can apply for a statement yourself withoutwaiting for a diagnosis. In the short term you need to work with all the experts to establish what your childs additional needs are, and you should makethe school aware of the fact that you are expecting a diagnosis. Depending on the severity of your childs needs, it is possible that the LEA will decline to asess immediately and will want to wait and see how school goes. It is important that all additional help that is requested and/or recieved is documented, as this will be invauable if you do decide to apply for a statement. It can be fightening and bewildering with the amount of stuff that comes at you when you first become aware of autism/ASD. Keep coming here often as you are among friends and it all starts to make more sense after a while! Simon

Good luck tomorrow! Simon

It is sadly the case that LEAs are prone to writing in phrases like "The school will aim to" and "wherever possible" into statements. This is because it allows them to fail to meet the spirit of the statement without breaking the letter. Sadly, you do neet to keep sending it back until the vagueness comes out. There may be a support group locally or someone like the parent partnership may be able to helpyou with this. Simon

Elaine The short answer is Yes, but it will depend on which section of the statement it is written into, as to whether the needs are being noted or they are part of what the school is required to deliver. Hopefully Nellie will be along in a minute to give you the definitive answer! Simon

Jan If your son is back in school in September there are only a couple of months of termtime to go in this school year, so I can't foresee too many difficulties, even if you don't educate at all. If you have a sympathetic GP you may be able toget him signed off for the last 8 weeks with stress. As I mentioned in another thread earlier we have (as of yesterday) decided not to send our 5 year old son back to his mainstream school while we await an LEA decision on a placement for next year. I think many parents reach a 'break point' when they realise that continuing to send their child into school every day is doing more harm than good. I am sure you are doing the right thing. Simon

Thanks for all your wonderful replies. This message bard is a very special place. Attention now turns to preparing our 7 year old for his new school and getting a placement for our 5 year old. After discussions with the special school they do not recommend taking him to see his new school him until near the end of this term as he will find it hard to understand why he has to go back to his old school in the meantime. We will be spending a morning there on the 6th of May to go through everything. We have reduced him to 4 days a week at his current school to give him more recovery time as there seems little to be gained by sending him into an anvioronment where he is so unhappy for 5 days a week, especially as we now know he will be moving on at the end of term. As of yesterday we have had to stop sending our 5 year old (ASD) to school at all as it was becoming impossible to get him to go without undue coercion, and the price of this in terms of damaging our relationship with him and the all-round deterioration in his behaviour outweighs the benefits. He had being doing 2 hours a day with 1:1 support, but he simply cannot cope with a class with 30+ children in it, and becpmes extremely distressd when other children (Quite innocently) talk to him and ask him to join in their games. To be fair to the LEA they seem to have accepted that he cannot continue in mainstream and have bought forward his assessment panel to next month, so we are cautiously optimistic, despite the fact that his current school have failed to acknowledge he has any problems at all. This has turned into a ramble, when all I meant to say was thanks! Simon

Good luck with the visit! Simon

Just heard that the special needs asessment panel have agreed that our son (7, Aspergers) is no longer able to cope in mainstream and he has been allocated a place at a special school from September this year. I feel a bit ovewhelmed and emotional at the moment , it's been a long struggle to get him there. It's at times like this you realise how much it all matters. I'm hugely relived they are not sending him back to his mainstream school where he has been so unhappy. I think we might just have a very large ones of these tonight! Huge thanks to everyone here for your support and best wishes! Simon

Sadly many schools confuse doing the right thing with appearing to do the right thing when in reality they are not the same thing at all. I am speechless with anger on your behalf. I sincerely hope heads roll after this! Simon

We heard yesterday that the LEA have agreed to assess our 5 yo (recently diagnosed with ASD) with a view to a statement. We had been worried that they may stall for time as he has yet to attend his mainstream school on a full time basis. That have also reduced the time allowed for submissions from 12 weeks to 6 so that if a stament is isued there will be some time left to sort out a placement for next year. It may be of interest to some parents here that the application came from us. The school felt he didn't have any issues! So don't be afraid to apply yourself! Meanwhile our 7yo (Aspergers) has had his annual stament review, during which everyone accepted that he was no longer able to cope in a mainstream environment. His case is going before the Special Needs asessment panel on Thursday. We are hopeful that they will place him in a special school from September. We will have fingers, toes and everything else crossed on Thursday. A voice at the back of my head reminds me it can still go horribly wrong, but things do seem to be moving in the right direction at long last! Simon

We only tried it once, before a flight. It made things a whole lot worse. It seems to have quite a few potential side effects too, so we didn't use it again. Simon

Thanks Nellie. It is a difficult decsion, I had a similar issue myself a few weeks ago concerning a site that had useful information for relatives of people with ASD's but took (in my view) completely the wrong approach. It's not all that hard to believe. If you are lucky enough to have a child at a mainstream school that does a good job in dealing with children with ASD's it's the natural thing to think, and for some disabilities it is definitely the way to go. What gets me under the collar is the current thinking where LEA's are effectively being told to say "The solution for your child is a mainstream placement with aprropriate support, from within the schools existing resources" before they have given any thought to what the childs needs are. Simon

Thanks for the link Nellie You are right that the site has a lot of useful information, but I am not sure about the aims of the site. As shown by the struggles of our autistic children and those of so may others, mainstream schools are not always the best place for autistic children. So many mainstream schools are failing our children and a political push for an 'end to segregation' means an overwhelming assumption on favour of mainstream education, to the point where a parent has to fight tooth and nail to get their children into special schools. Sorry to sound negative, but as far as Autistic children in education are concerned, organisations like this are doing far more harm than good. Simon

Admum You are not alone in being treated like this. We too ahve been accused of causing staff stress by asking where the agreed provision is, and were told we were not being reasonable in expecting what was written into his statement. I think they genuinelty expect us to be so overwhelmingly grateful for what they are doing that we should stop being bothered at all about what they are not doing. Our son goes to panel on the 16th and hopefully will be placed elsewhere. Simon

Rach Are you sure your son isn't at our school? During our son's statement review the LEA statementing officer asked why the Full Time Support wan't present. One of the teachers piped up "She does the reading group in the Library on a Tuesday afternoon". Awkward silence before the LEA officer said, I don't think we give you the extra funding for that, do you? Sadly getting full time support isn't the end of the struggle. Simon

Carol I am not sure if it's the same in all areas, but in our area the outreach workers are only involved at the invitation of the school. Which means that if the school don't like what the outreach worker has to say about their provision thay have the option of not inviting them again. Some schools refuse to allow the Autism outreach workers on the premises! Simon

Viper Yes, the provision is all day. We were told before the statementing process began that we we had no chance of getting full time 1:1 support for a child with Aspergers in our LEA area and we would have to settle for 12 hours a week. Everyone stuck to their guns and we got full time support. The school were fully supportive because they felt he needed 1:1 support for the benefit of the other people in the class, they have since let us down in all kinds of ways, but on this issue they did the right thing. Simon

We got 1:1 support at the first time of asking but he had already had a year at school. It will help you a lot if your child is incredibly disruptive to the other children in the class and hits them occasionally If you know right from the start that Ben is likely to need such a high level of support you should also give some serious thought to whether a mainstream environment is the most appropriate setting, or some sort of specialist environment would be more appropriate. Simon

The LEA Autism support worker visited our son's primary school to check on progress. She came out of a meeting with the headmistress saying it was very positive and said 'She showed me a wonderful Visual Timetable that they have done, it really is excellent' Then went on to say that they will not insist that our son sits his SATS tests as it might be too stressful for him, so it was good that the school was being so understanding. Sounds quite good doesn't it? Scratch beneath the surface and we find The Visual timetable was produced two months ago by his CAMHS support worker who sent it to the school and asked them to contact her so she could explain how to use it.The school do not understand it, have never a asked how to use it, have never mentioned it to us or our son, and as far as we know never used it in any way shape or form nor have they any intention of doing so. The school should have applied for permission to allow more time , breaks etc, during the SATS,. The deadline was 6 weeks ago. They did nothing and are trying to dig themselves out of a hole. I couldn't make this stuff up! Why are these schools never called to account? Simon

Rach You experience of Phenergan was exactly the same as hours. We used it once only a few years ago before a flight as eveyone told us it was a good idea. We are never going to give it to him ever again! Simon

Welcome Nemo! So much of what you say has a familiar ring to it! You'll find you're amongst friends who understand here. Simon

Cost isn't a big issue, �20 would buy you enough melationin to last a couple of months or more, depending on the doseage. Given the positive effect it has had for us, we would still buy it if we couldn't get it on prescription. (And I do buy it to use myself) The reason for the reluctance is that it isn't specifically licenced in this country for use to help kids with ASD's sleep. Pediatricians tend to be a bit more aware of the issues and are happy to prescribe based on the being almost no known side-effects. GP's are typically less melatonin-aware and are likely to be much less willing to prescribe. Simon

In the case of our son, I think his overating has two causes, one is a stress response, (kids with ASD's in mainstream schhols have a LOT of stress in theor lives) and the other is that he simply does not realise when he is full until some time after he has eaten, which is a sensory issue. I suspect this sensory issue is shared with many people with ASD's. People with Prader-Will will also tend to be very short in stature for their age, have noticable impaired motor skills, poor muscle development, have experienced language delay, and have learning difficulties (typical intelligence is on the 75-105 IQ range), so overeating in itself is probably unlikely to be indicative of Prader-Willi unless there are other concerns. Plenty of stuff on the web if you are worried though. Simon