Tez

I totally agree and judging from most other posts on this thread, this seems to be the case for most of us.

A's DLA runs out on 7th August. I received the renewal forms back in January but I did receive a reminder a month later when they hadn't received them back, so if you haven't herad anything they probably haven't sent the forms out yet. Wouldn't hurt to phone them and check though.

Hi PSA, Our LEA ask for the parental advice before deciding whether or not to assess, they use this advice as part of their decision making process on whether to proceed further. Did your LEA do this? Even if they did, you still have the right to supply additional advice up to the deadline given for professional advice to be received.

Had some information through from NAS that may be of interest to some:- The following two seminars are due to be held in Birmingham Anger management in adolescents with Aspergers syndrome - Wed 28th June 2006 10.30-2.30 The Hub, Kings Heath, Birmingham Making and using visual supports - Wed 12th July 2006 10.30 - 2.30 The Hub, Kings Heath, Birmingham Contact help 2 North Team 0115 911 3360

If anyone is interested PM me I have an application form that I can email to you with details of exactly what the cost covers. It is cheaper if you book before 25th April. Also for anyone interested there is a lecture by Donna Williams (The Language of Behaviour) on Friday 26th May 2006 at the Martineau Centre Harborne Birmingham between 2pm and 4 pm. Phone Sabina for further info 0121 450 7576

Hope you enjoy today Alex. Best of luck. Thinking of you today Annie. Hope all goes well.

Hi Patrick, I'm another one with a teenage son with the same problems, he's 14. A usually goes to sleep about 6 in the morning and wakes up about lunch time. This is fine with me, since we have allowed him to develop his own sleep pattern and taken him out of school (did this a year ago) his tics have completely disappeared as have the bleeding sores that he used to have on his body caused by scratching his eczema, the eczema has gone as well. Had an appointment with his Consultant today and she agreed if his natural sleep pattern is 6 in the morning to mid day then let it happen and work around it (it's not broke so don't fix it), it's no longer a 9 to 5 world. A spends most of his time in his bedroom playing on his computer or play station. He's built his own web site and forum and he trains new recruits in the games that he plays. He's happy like this and doesn't need to interact with the world on any terms other than his own, which is currently arms length via the computer. I am a little concerned that he never willingly goes beyond our front door but I haven't seen him this happy and well in years so I'm certainly not going to force him into a situation he doesn't feel able to cope with, he measures himself and I know when he wants to do more he will. I know others worry about him being socially isolated, but he does have some good friends who visit him, but often he doesn't even want their company, he's not lonely, he's only lonely when he's forced into situations where he's expected to socialise like school. I suppose what I'm saying is that your son's situation is remarkably similiar to ours and many others. If you're happy, and he's happy that's all that matters, even if it is a life style that's others don't understand and frown upon.

LKS there is no easy answer is there? A was exactly the same, any concession on uniform wouldn't have worked because he couldn't have coped with comments from the other pupils or teachers. From the school viewpoint, they can't see the problem, children do alter the uniform to suit themselves, but A wouldn't because he's rule bound, so top shirt button done up and tie fully tightened with 6 stripes showing, which the school rules stated, meant just that. The problems it caused were unbelievable.

Just to agree with Elouise, one of the reasons A's registered school gave for not being able to meet his needs was that all expert advice pointed out his extreme sensory difficulties with school uniform and how the wearing of it impeded on his ability to learn. The school felt it would be inappropriate to allow him any concessions since uniform was an important part of the identity of the school. The LEA, pointed out to them that this would be considered a reasonable adjustment, and failure to allow A to dress in a manner that was not painful to him would in all probability result in a disability discrimination case.

We go to Florida a lot but only at quiet times of the year. I would confirm that Disney are usually great at accomodating autistic children although individual ride operators can cause problems. We have found Universal more problematic although the last few times we have managed to obtain their speed passes for free. Have never tried to use disabled access at Busch Gardens because the place has always been empty when we've visited. However, A refuses to go there any more due to their attitude to his lost sunglasses and he tells everyone going to Florida to boycott the place. Basically, being rule bound, A took his sunglassess off as instructed on a ride and placed them in the pocket under the seat as he was told to do by the ride attendent. When the ride was over, no sunglasses in the pocket. Massive panic, we'd spent a whole previous afternoon trying to buy him some sunglasses that he could tolerate sensually and eventually come up with this pair, so you can imagine the distress their disappearence caused. Attendent wants to clear the ride for next lot of guests and tries to stop A looking for sunglasses. Tough you've lost them what's the big deal was his attitude, now move it. Made a complaint at guest services, who just shrugged their shoulders. Hence A's boycott. If we compare this with Universal when A previously left same sunglasses on the Men in Black ride where the attendent checked every car until she found them, without fuss I think I have to agree with Lisa's view that Anheuser Busch lack any understanding of how autism affects people and their policies do make things hard for us to take our children to their parks. We find that Sea World, owned by the same people are also autism unfriendly.

<'> <'> <'> for you and David. Hope a solution to the lenses is found.

Had a long converstaion today with my local councillor. He has just got himself a position as the Council's Governor at my son's registered school, sits on all the Education committees and the SEN committee. A's school is being completely rebuilt as part of the government's deprivation area regeneration programme. It's been touted as all singing, all dancing, fitting every possible criteria, so being a bit awkward I asked what consideration had been given to making it ASD friendly particularly since A's statement calls for a full sensory audit of all his potential learning environments. Well, guess what.... nobody has thought to give this any consideration. This is a school that caters for 1600 pupils, so based on current estimates that 1 in 80 people are on the spectrum could expect to have at least 20 pupils with an ASD. He then told me that he's going to go away and ask a few questions and see what can be done, but because the money is coming from a central government fund the decision to make even minor alterations will have to be taken by central government and approval is unlikely to be granted, the plans have apparently been drawn up at national level and our LEA have had no say in the design. I've got the phone number of Ruth Kelley's SEN representative for the area so I'm going to give him a ring tomorrow and ask a few awkward questions. Being on a roll, I then ask why there is no ASD provision in our authority. Answer: because there is no funding. We have the lowest funding per child of any LEA in the country and there is just insufficient money to fund any ASD specific provision, no places are funded at non-maintained residential schools and the current arrangements are the most cost efficient. Apparently, the head of our inclusion and access team has a particular interest in autsim and has been banging on doors at the DfES for months without success. She put together a report to support funding of an autism specific unit at one of the schools currently being built under the regeneration scheme but has been told that it is not part of the development and any funding for ASD must come from their existing budget and that she was reminded that the ideal is full inclusion not segrgation on the same site as mainstream. Obviously, I don't know how much of a line I'm being fed but I have no reason to disbelieve him. What is happening in other LEAs when schools are being rebuilt, is an ASD friendly environment considered? Are ASD units being included or is full inclusion the aim?

A was born by forceps after being stuck for some hours and in distress. When he was dx'd the Consultant did say that there is often a connection with birth trauma but in A's case thought this wasn't relevant because it was obvious from my presentation and anacedotyl family tales that it was genetic. The opinion of his current consultant is that it probably does have a genetic connection in A's case but birth trauma and adverse reactions to injections not just MMR probably heightened his sensory problems.

Annie what fantastic news for you and Alex. It's reassuring to know that there are people who are willing to give our children a chance to prove themselves. It must be a big relief to you all. Fingers crossed it leads to a fantastic career for Alex.

Hi MIN, Slightly different situation because A's statement does stipulate he should be taught at home by LEA. However, they only want to teach English, Maths and Science which doesn't comply with his statement. Have been told the same as you regarding other subjects, use SAM learning and exam board websites to establish the curriculum and teach him yourself. If he does ok with that we will consider supporting you. We are still within the appeal deadlines for A's statement so with the help of IPSEA we are taking it to SENDIST in the hope that they will make the LEA write in hours of teaching (more than 5 currently being given) and subjects to be taught. I believe you are still within time limits for appeal on your son's statement, could you speak to IPSEA and see if they think SENDIST could tighten up on the statement wording to protect your son's interest whilst he's so far behind?

My son is older than your daughter, he's 14, but he has been taking Prozac for a year now. I tried everything before I agreed to medication, but when all else failed I felt that I was left with no choice but to try. In his case it has really helped with his phobias and anxiety and he's a much happier child. As Zemanski says, all sorts of other problems that he had, have also cleared now that his anxiety is less. When he was first placed on it, I was given the Consultant's mobile phone number and email address and told to contact her if I had any concerns. She saw him weekly for the first month and less often since.

No

Hailey I'll PM you so as not to interfere with Suze's thread.

<'> <'> Hailey for us the sensory difficulties, and the shutdowns in particular, are the most debilitating part of A's autism. Like your son, A is virtually confined to the house because of his shutdowns, he even has to be educated at home. I know the Doctors are right and that it is not epilepsy because when in an environment he can control, A doesn't have them. Outside the house, they happen constantly with no obvious trigger. I hope things improve for you and everyone else soon. If anyone comes up with any miracle solutions, other than controlling the environment, I'd love to hear.

Suze I hope they help.

A has these and was tested for epilepsy but this was ruled out. His ASD specialist said that it is an autistic shut down in response to sensory over load (similar to tuning out but taken to a much greater extreme and all senses and sometimes movement shuts down), doesn't need to be light or sound, can be smell or touch that causes it. A's home tutor says that she finds it scary when it happens because there's just nothing there. He also complains about being confused afterwards and it takes him some time to recover just as it would with an epiletic absence or fit. Maybe mention it to the Doctor and see what they think. HERE is a link to an article on the internet. I did read another article that stressed the "absence" more and why epilepsy is often considered. HERE is another article.

Well done T, the teachers and support help but you obviously worked really hard as well. HH, you must be so relieved and proud of him. I'm so pleased that the right support is in place for him to flourish and that all your hard work is paying off.

What a fantastic start to the weekend. You must be so happy.

Great news. Well done.

Not quite the same but when A was being assessed for his statement the EP said to me, "I think that you know a tremendous amount about your son and how he's likely to react to situations, but you have to accept that there are experts who know more and you really should listen to them. If you don't, then you're unlikely to get the support you need with the LEA" I don't quite know where the words came from but my reply was, "I have a problem with that. I did that for 10 years, these so called experts told me there was nothing wrong with my son when I knew differently and that's why he's had a breakdown and we're in the position we're in today. Fortunately, A now has a DOctor who agrees with me and supports me and him 100%" Fortunately he was receptive to my words and agreed, his report was also supportive. You have the backing of an ASD expert now. You have nothing to fear from the LEA, trust in yourself and your expert. Good Luck.