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Four and a half years sure is a long time hun - BUT - well worth the wait when it's good news Keep it up <'> <'> <'> Oracle

Watching Pete in the Big Brother House has been a revelation to me. This show may well be full of geeks and freaks but they 'ALL' appear to have accepted Pete warts and all because the way Pete is is part of the person he is. He may not have AS but he can verbally stim for England guys. Unless a stim is the beginning of an outburst of aggression then where is the harm in it? Especially in their own homes. My eldest with AS did not stim at all until he had his breakdown and then he flapped for England and not just his hands. He looked as if he was about to take off. However he eventually decided himself that it was not cool to flap and found something else to do like firmly placing his hands in his pockets He wanted to do this and it worked for him. Now he justs steps from foot to foot when stressed. If he did not then that would only increase his already high levels of anxiety. Matthew blows on his fingers when he is nervous. Would it make him less nervous if I stopped him from blowing on his fingers. Sorry folk but to me doing that would be downright cruel. Question - Would we take a wheel chair away from a child in Centre Park so that they looked normal and fit in? What is it with wanting people with autism to look normal and fit in. An inability to accept the disability perhaps Oracle

I have a friend whose son was totally non verbal until he was 8 years old. He is now 15 and it is difficult to believe that he was 8 before he became verbal. Oracle

Brilliant news. The only youth type of club that David ever attended was one where there was computers and games machines. But he went!!!!!!!! Know the feeling. Enjoy. Oracle

It's the BEST home ed book I have ever read Made even better by the fact that I know quite a few of the writers, although I was not aware of that fact at the time. It was written by Mum's and Dad'd very much like us, which is probably why I liked it so much. Oracle

Lost for words for once Brilliant way to go Munchkin <'> Oracle

Hi Sue Anne Mclean works for a firm of Solicitors called Maxwell Gillott. She has been around the world of home ed for many years now giving us all brilliant advice. BUT she has also helped many of my none home ed parents and she really is the business. You can contact her by phone here is a bit about Anne Anne McLean Anne has provided telephone advice on special needs and other educational issues for organisations such as IPSEA, and Resources for Autism since 1997, having become involved in the work since the birth of two children with special needs. She originally worked as an assistant for people with mental health difficulties, and has also run a specialist advice line for parents who are home educating children with special needs. She also provides full support on the specialist Telephone Advice Line, as well as working within the firm on cases involving home education and related issues. I have also just realised that this firm has another brilliant bod working for them again someone who has been advising the SEN home groups for years her name is Isobel Brookfield Isobel Brookfield Isobel has worked part time with Elaine since 1996, carrying out case work, and providing telephone advice on education cases. She has also provided advice and tribunal representation for IPSEA (Independent Panel for Special Education Advice), the National Autistic Society, and Resources for Autism, and has two sons with special needs. She has a Post Graduate Diploma in Education Law from University of Buckingham covering all aspects of education law. She is now working for us on a part time basis, providing telephone advice on the advice line. Here is a link to their site where you will find the numbers to contact them. http://www.maxwellgillott.com/index.asp Both Anne and Issy know me so I don't mind if you tell them who gave you their names. I really do hope that they can help because as an ex COG I am shocked at the way you are being treat. We had parents in your situation but never for your reasons. Usually they had hit or threatend a teacher of another parent. Once we had a parent in the school yard who was bullying another child - but that is about a zillion miles away ffrom your situation. Oracle

Happy Birthday to everyone whose Birthday I have missed in the last fews day. Can I make a suggestion/ask a question please? Is there anyway we can have a daily birthday slot generated by the forum - I know this is a techie question really? It's just that I sometimes do not get round to saying happy birthday and that's not nice. Maybe even a happy birthday to everyone who has a birthday today thing? Yes - No ? Oracle

If you are still reading then here is a little bit of thespian advice for you Step out side of yourself tomorrow and become a Radio Star. Take on the role and play it for all it's worth. it's sometimes easier to play it like a part in a panto That way you can encourage your audience to boo and hiss at the baddies even if they are on holdiay NOT!!!!!!!!!! love Oracle

I know a lady called Anne McLean who could offer som 'free' expert legal advice and she may just have something that you could use? This stinks of a VERY corupt piece of machinery and you may need to bring in th heavy squad. Let me know if you would like her details? Oraclee

Go Helen Go Helen The best thing about a Radio Interview is that you can wear your dressing gown and slippers if you feel like it cos no one can see you Seriously give it to em staraight and wake all of those early morning movers and shaker up enough to listen to you Oracle

Last week I attended the launch of the NAS Educational 'make school make sense' Campaign. As I have said in another post I think that this time NAS have done their home work and got it just about right Certainly everything that I have read in their report are issues that parents come to AIM with on a daily basis. HOWEVER the one thing that did make me feel was the fact that at the launch two of the politicians who gave a speech refered to autism as an illness The first time I tried to ignore this but when the second guy got up and repeated that autism was an illness, I found myself shouting out, along with a guy I know who has AS himself, that autism is 'not' an illness. Of course they ignored us but it did make my blood boil I had my 9 year old son standing next to me tugging at my sleeves telling me that I had to shout out that he was not ill. How can we trust the decision and policy makers to do what is best for us if at a National Launch they have such a basic lack of knowledge and understanding Today I spoke to the NAS Campaigner Coordinator and decided to mention my concerns to him. He said that they too had heard these statements and were concerned, and that they hope to address this mistaken understanding of autism. I hope so because I have never felt that either of my sons were ill. They have a life long condition which will mean they may well need to access service provision to enable them to live independently but they are not ill are they? Oracle

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Brook David is almost 19 and he has told me on numerous ocassions that some of the things that he does over and over again drive him mad but he is unable to stop himself. But it has helped now that he can tell me this. We discussed this with his Psychiatrist who told him that it was a part of his AS I thought that this would cripple David as he does not do negative but it actually helped. He said at least he knew that he was not going insane. Once he understood why he is the way he is he found ways to overcome the things that drove him round the bend, not all of the time but some of the time. It was easier for me when Matthew said things like my brain is broken becauase he followed this with but then so is David's So he knows he's not alone. Does your son know he has AS? I have found that for both Matthew and David an understanding of themselves has proved to be the best thing for them, especially with Matthew as he never says his brain is broken any more. Often it's difficult to find a positive to hang the AS on but I tell Matthew that he has a great ability for attention to detail. I tell him that he can see things with his Aspergers lens that other people miss. OK makes him sound like Superman but it worked for him. He now thinks that he is totally cool so I don't care. If it is bothering this little chap then he needs some input to help him understand he is not alone here. My best help ever for David came in the shap of an adult with AS on another group who could be David's clone. Things that bother David bother him. I fully understand that this little lad is very young but maybe he needs to know that his brain is not broken and there are other just like him. Sorry if I have over stepped the mark <'> Oracle

If you were born in 1979 then I am old enough to be your Mum My eldest is 27 too!!!!!!!!!! Now I know that I am ancient BUT HAPPY BIRTHDAY ANNIE Oracle

I came to the conclusion that the running commentary was a coping strategy for both of mine and still is when they are stressed. I think that Matthew uses it as some kind of marker fpr where he is at and where he is going ? If I take either one out and don't get the commentary then I think that they are comfortable. It could be VERY embarrassing when they said things that I did not want other people to hear so I made a point of telling them both over and over again, just like they were doing, that they were to make their comments in 'my' ear and my ear only. I think that Matthew was about 6 when I started to enforce this one and now aged 9 he does it with out even thinking about it now. Sure some people think that he is just being rude when he whispers in my ear, but it's far better than hearing him say Mam doesn't that lady stink should I tell her where the soap isle is With David when the commentary stops his latest obsession takes over and he talks about that 'ALL' of the time we are out. I have now learnt to say yes, really and how nice in appropriate places while I tune out Oracle

My ASD Son loved Forbidden Corner thought it was cool Oracle

Most Theme Parks operate a 'Get out of Jail Free Card' system. Some do it better than others. In Flamingoland they just push you to the front of the queue, which does not go down well with other people who are waiting Other Places have hidden places where they take you and no one realises that you have jumped the queue. At Lego Land you have to take a copy of the dx for them to see they will not accept your DLA award. It differs from place to place so it's best to ring and ask them. Oracle

My biggest tear jerker so far has been with David when the kids who he went to school with, who were also in our Theatre Group, had their Prom. They all brought their pics for us to see some even brought their clothes,and just seeing them all dressed up made me realise that David was about a zillion light years away from where they were It made me really and then I realised that I was crying for me because David did not miss the Prom he would never have wanted to take part in any Prom. But it still hurt. Oracle

There is a queue jump system at Lego Land but we did not need it. If you take a copy of the dx they will give you a pass card that means you do not have to queue It is a wonderful place and for Matthew He could have gine to Disney Wold with Cubs and we were able to go to but it held no interest for him. However Lego has always been a passion with Matthew and the experience certainly lived up to expectations for him Oracle

I know that there has been a topic about Lego Land a short while ago, but I just wanted to say that for us it was a HUGE success . It has always been Matthews No 1 thing on his most wanted list and it did not let him down. We went at the right time the week before half term and we have yet to stand in a queue In fact most times we went on things 3,4 5 times plus in a row > Matthew did not mind that the place was almost empty he actually loved it like that We went as part of a package deal and stayed at the Sherraton Sky Line Hotel. I hope I can name this hotel because if ever there was an ASD friendly hotel this has got to be it They bent over backwards to accomodate Matthew even allowing him to make a short film (that's his things at the moment) and the Concierge took part in the film Now that I am almost back in tune with 'real' life I am going to write a thank you letter because they really did make our stay special We even had the full use of their beach bar pool two nights in a row all to ourselves Again just as Matthew likes it. Oracle

My son wanted a DS hand held console for Christmas. It was the ONLY thing he asked for and yet it was well into February before he actually used it. This weekend we came back from our Hols to discover that my eldest had gone out and bought Matthew an X Box 360 for no other reason than Matthew's BIG obsession at the moment is map building and plotting. Our middle son who has AS is not happy with Matthew using his X Box 360 and it has caused endless meltdowns. I expected Matthew to do hand stands and cartwheels but I was wrong He threw a right strop and was shouting the odds that it was not what he wanted and that his Brother could take it back Two days later however and he has made two brilliant maps and is well He was not expecting the gift and it really threw him off beam. For that reason both of mine with ASD know well in advance what they will be getting for Christmas and Birthdays. Often Matthew takes weeks to open his Christmas Gifts. It's as if he needs them to become part of the furniture before he is comfortable enough to play with things. Oracle

Have not sorted anything out yet Amy but we will do something here in Sunderland Oracle

munchkin indeed I was thinking more in the line of the poison dwarfs Helen is right we are now being given the tools that we need to help ourselves and NAS do appear to be well fueled up - let's keep the flame burning As Jane Asher said (and yes she does bake very nice cakes sorry could not resist) The way that you judge a civilized society is in the way that they treat their children and we are treating our children badly Let's all take a deep breath, jump in, and help to make school make sense if not for our kids for those who will join our kids on the same path Oracle

Help to make this Campaign work for you! Terry, Matthew and I attended the launch of the NAS 'Make School Make Sense' Campaign at the House of Commons last Wednesday,on behalf of Autism - in - Mind, it was also my Birthday. I have to be quite honest and say that for once I think NAS have done their home work and from their report ,which I have now read, have a pretty good idea of what life for many of us is like. Will the Campaign make any difference for parents? Good Question. I think it could make a difference but I think that it will take active Campaigning by local groups to make any difference for most of us. The idea is not that NAS will change the world but that for once they will help us to help ourselves and make a difference. This to me is a much more pro-active stance to take. The idea behind the Campaign is that we all use it as the tool to Campaign in our own backyards. I spent half of Tuesday talking to my own Local Rag from within Legoland!!!! They did quite a spread on the launch and made much of the fact that for some children with SEN inclusion may well be a form of abuse. Sadly they failed to mention that it was the NUT report which states that and not me. I am awaiting the LEA firing squad turning up at my door. But faint heart never won any Campaign so I shal have to live with the credit for the comments and I do in fact agree that for some of our children inclusion is a form of abuse. Here is a link to the NAS Campaign - this is one time when I truly believe that you have to be in it to win it - and this is very probably my first pro NAS post in the last 7 years!!!!!!!!!! Make what you will of it. LOL http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=253&a=10058 Here is the speech given by 16 year old Josh who has AS at the launch - I have his permission to print it here. Education, education, education.. You know I've always wanted to say that. > > Hi my name is Joshua Muggleton, and I am a young person with autism. > > I may look pretty normal to you, and apart from wetting my underpants > right now, I generally act pretty normal too. I say 'act' because that > is what I have to do in order to cope with being around you so called > normal people. > > Let me tell you a bit about my school experience. > > I wasn't a troublesome student. I never got a single detention. My > behaviour was exemplary. I was keen to learn, always did my homework and > was never late for school. > > It is not as if I went to bad schools. Both my primary and secondary > schools have good records for academic achievement and excellent Ofsted > reports. > > So what went wrong? > > First of all, soon after I started school I realised that I was a bit > different from other children. I was repeatedly bullied, teased, and > soon discovered I was a misfit. Apparently not many kids walk around the > lines on the playground in the middle of summer with a thick coat zipped > up to the hood. > > Being diagnosed with dyslexia also didn't help. > > Somehow I survived primary school. I treated my depression and low > self-esteem with my own "chocolate therapy". > > I hoped that secondary school would be different. Before I started, my > parents wanted to meet with the school to discuss the additional support > I would need. They refused. It seemed that they first wanted to see how > far I would sink. Unfortunately I sank too far and never recovered. > > At secondary school I was bullied more than ever. The school did > nothing. I became more depressed. > > After making serious threats to commit suicide I received help from the > Child and Adolescent Mental Health Service. > > After four years of secondary school hell, I had a complete breakdown. > Then after six months of trying to get back into school my psychiatrist > decided that I could not cope any more and signed me off on medical > grounds. > > So what was it that caused the breakdown? > > It wasn't just the bullying. It was the lack of understanding of the > staff at the school. Nobody seemed to listen to what I was saying. I > needed a place of sanctuary when things got too much for me. I needed > encouragement from the teachers - not threats. > > If the teachers had been properly trained in Autistic Spectrum Disorders > then they might have be able to help me cope. > > No one deserves to go through what I went through. If I had one wish, it > would be that all teachers in mainstream schools had compulsory > education in autistic spectrum disorders. > > I'm now studying for A levels with Satellite Virtual Schools, an > internet based study programme. They threw me a lifeline when I could no > longer cope and was signed of school. > > However I am struggling with this and I would like to go to 6^th form > college, but is there anywhere that can give me the support I need? At > the moment the answer appears to be 'no'. I am desperately keen to learn > but do not know what I am going to do about my studies next year. > > Mainstream school inclusion didn't work for me. I tried my best to > adapt, but true inclusion only works when schools can give enough > support. If they can't do that then school becomes a very damaging > ordeal. I'm only just beginning to rebuild my shattered confidence and > self-esteem. > > I started this talk with the words, Education Education Education, > However this did not refer to students being educated, it refers to > teachers being educated, I believe educating teachers about autism is > absolutely crucial in any plan to include people like me in mainstream > education. > > All people like me have a part to play in society, including those like > my brother who are more severely affected by autism. But you cannot > pigeon-hole us, or try to push us into school settings that end up > damaging us, and depriving us from reaching our potential. > > I'd now like to finish by quoting from Gordon Brown's recent budget > speech. He said " > > "I, like so many, am grateful for the inspirational teachers and the > high quality of education that I received. And just as I had the best > chances, my aim is that all young people from whatever background have > the best of chances." > > Well, to Gordon Brown I'd like to say "put your money where your mouth > is" and do something about the educational provision for people like me. > > Autism is complex. Our demands are simple. > > Lets Make school, make sense. Joshua Muggleton Cleverly Disguised as a responsible adult