Annea

Hi Mel, firstly congratulations on J's results.... it is a great achievement. Hoepfully he will progress well socially this coming year and then be in a position to do A level study the following year if he chooses to. This is actually one of the scenaripos we were thinking of for our daughter, if she didnt quite get the results she wanted. Can I ask, does your son use Facebook? my daughter went to one of the priory schools and most of the kids are on FB, it has really helped a lot of them as it removes some of th difficulties with communication... it isnt a cure all of course but it does help my daughter to feel less isolated at times. The other thing, does the main stream college have an A/S group? My daughter is going to main stream in conjunction with the Priory FE college she will be attending, but the college has its own 'Aspie group' a place where anyone who has an ASD can chill and make likeminded indivuduals or jsut retreat to at times to prevent overload... most colleges have a number of ASD students so might be worth asking, or seeing if one could be set up... I am happy to give the name of the college my daughter will be attending so that they could maybe ask them about the logistics of setting up such a group? Just an idea...

Can I ask? during the fight for my two autistic daughters, one of the remarks I hear a lot is that some children with ASD cope well with main stream education. When I am talkign to my friends whose children are NT, I rarely if ever hear this expression... I rarely hear them say.. so and so coped well this week, or got by this week... instead they talk in terms of what they got up to (good and bad) where they went, results they achieved, trips they attended etc... My question is to everyone here.... In a sentence what would you sum up about what you want for your child from education? For me for all my children (2 NT 2 ASD ) "I want them to experience a balance of academic and social education, to be safe and to enjoy all aspects of school life which in turn will allow them to become valued members of this society we live in" What about everyone else? Thanks

i don't think there will be a definitive answer to this one... It will depend on so many things ... We did fight against provision at one of these units for the follwoing reasons... it miught give you something to pondr, but it will be different depending on your son and also the unit. 1. The unit that was suggested for us was very small, only 10 pupils. It was attached to a very rough school, with poor over all results, Definitely not a school that we would have chosen for our daughter. 2. We felt that we wanted inclusion which doesnt necessarily mean main stream, for us it meant to be able to take part in a full curriculum. In this unit her education would have been very stilted. 3. There was not a full curriculum on offer, if she had wanted to do her full choice of GCSE;s. In order to attend some of these classes, she would have had to go into the main stream classes. At the time she was a school refuser as she couldnt even cope with the small secondary she was in, there was no way she would have coped with this much bigger school. 4. The children were segregated for meal times, social times etc... when the unti was full there were only 10 pupils, some days much less so we felt that she would never get the feel of mixing with people and making friends. the unit also had a couple of teachers taking all subjects, they were not teachers who were necessarily that qualified int he subjects they were teaching. I personalyl didnt find this satisfactory. In the end we fought for a residential Asperger School, we were told by the LEA that she would get worse, that she would never learn how to function in the real world and that her academic studies would suffer. Now although it doesnt work for everyone, for her it changed her life. She is more balanced than she has ever been in her life, she took part in a full curriculum and was able to study ALL the subjects she wanted to with teachers who were used to children with her difficulties. She came out with good results in all 6 of her GCSE's and she has learnt a comassion for others (not just other ASD kids) that is sadly lacking with many NT kids. Your decsiion has to be based on so many things, but do try to speak to parents of other kids who are already there so you are not just hearing the glossy brochure speak.... Oh and good luck xx

Thanks everyone, I too am worried about her ability to cope but she will be residentail at a priory FE college and then will attend a main stream college with support. I would like to say congratulations to everyone else who has had results over the past few weeks. x

I have often thought that somehing like this would be great! When I lived in Essex there was a big soft play centre had a massive pyramid in the middle as well and adults and children went on... not sure if it exists any more as it was over 10 years ago and not even sure where it was apart from that it might have been dagenham... Just did a quick search and although this might be too far for you, looks great if folks are near devon... Looks good and says for all family .. http://www.twinlakespark.co.uk/index2.htm

Just wanted to say well done on your sons achievment.... A wonderful feeling isnt it!!!

Hi all, As you can see by my past posts we have struggled terribly with my daughters education until we finally won on appeal a place at a priory school for her. On Tuesday, we got her GCSE results and I am so proud of her!! She took GCSE's in 6 subjects and got 2 A's 1 B and 3 C's!! She is moving forward to a priory FE college in conjunction with a mainstream college and will be studying toward 4 A levels from next year. 2 years ago she was on the verge of a nervous break down but is now managing so well... I am so proud and would like to say that to everyone else who is struggling with their childrens education, keep fighting as it really will be worth it in the end! xx

Can I please ask a question to all mums / dads of children with Asperger syndrome or other ASD'S If any of you have liver problems, specifically auto immune liver disorders, could you please PM me? I have an auto immune liver disorder known as PBC / AIH overlap syndrome. I also have two autistic children, Many of the mums and dads who share my condition also have children ont he autistic spectrum... One o my friend sprofessors is trying to decide whether a genetic study would be feasible but in porder to do this, he needs to find people who are diagnosed with the liver conditions as above and who have autistic children. Also PLEASE if you fall into the catagories, please would you PM me? Thanks

Thanks Lizzie, I know how you feel about the mixed emotions... it's a mixture of relief disbelief and shock with a healthy dose of satisfaction that I am not mad! I have a feeling the diagnosis might lean more toward hugh functioning Autism, my eldest DD is very anxious, very bright and totally different from her, where as DD3 is quite destructive, aggressive, very loud, brash and soically very immature... It's tough but I will fight for her anyway..... My son... has various problems too but is yet to be assessed. Again he is totally different, I think he too might have high functioning autism but with ADHD but i'm trying desperately not to self diagnose him and leave it for the professionals.... I am crying laughing here though because as I was just writing that last sentence I turned to watch him and he was having the most animated conversation with no one in particular whilst laughing at his own jokes.... Isn't a colourful life we lead Good luck with your own issues. xxxx

As some of you may know, I have a 15 yr old daughter who was dagnosed with A/S 5 yrs ago. My middle daughter has a few A/S traits but copes really well, and I have never felt the need to get her assessed, my youngest daughter aged 13 however has lots of problems and has for a number of years. Some of the problems she has cause considerable distress to her, but because she has never had a diagnosis I have been banging my head on the wall especially regarding education. Today I have finally had the verbal report of a recent Assessment with Child Psychiatrist and Psychologist who have confirmed that DD3 does in deed have an ASD. I do not have an indication yet as to what form this has taken but It is such a relief that i know that I can now hold my head up at school and insist they take me seriously! To date they just give me 'that look' and told me that I am seeing problems that just don't exist! So off now to request a statutory assessment.. but first I need to have a bit of a cry.... then take a deep breath.... Can I ask how many of you on here have two or three children on the spectrum?

Hi, You really need to look for a school so that you can base your appeal on your request (sorry if I have put that clumsily) We went to tribunal nealry two yrs ago supported by IPSEA, our daughter had been unable to cope with school for 9 months at that point. Initially they put in the proposed statement that they wanted to put her straight back into the school she had been unable to cope in. Then they had a 'wonderful' idea of schooling her in a shed! This might seem very odd, but it is true! Her fascination is animals so they decided she should be schooled at a local community farm in a room they had which was 20mins walk from anywhere.... it had no windows, no heat, one huge flouresent light, it really was literally a shed! At the last minute (the Friday before the tribunal on Monday) they decided to school her in a local ASD unit- it was only set up for day puoils but at the last minute they decided that she would go full time... By this time whilst they were chasing there tails not lookign for any decent placement, we got all the evdence we needed (helped by IPSEA) we got her a place at a priory school, and went to appeal for a placement based on what our evidence proved she needed. At the tribunal our evidence contradicted everything the LEA said, but because they had not done their homework, because they had made no attempt to find somewhere properly suitable, our evidence was used to support our application and the school placement that we chose was awarded. It was a very long fight, details of our fight and details of how she was affected is on her website below. I hope you sort out what your son needs, I am sure you will get to the bottom of things, it just takes a lot of perserverence. Elizabeth

My daughter with A/S boards at a priory Asperger school in Frome which is in somerset. They also have day pupils. Quite a few of their pupils come from the locality which would suggest to me that there is not a lot of local provision? Other wise why would the LEA's be placing children privately? Might daughter is aiming at university too, so not sure if a school like this would be ideal? Just a case of getting them in.... I had to fight a long hard fight although some of her friends of that area got in quite easily.

i dont think DLA counts in mean testing?

That is interesting Mumble as my children do help me out physically whilst I help them out emotionally! Couldn't find this on the webiste, Maybe I will email them

sounds like a great conference. I think that girls really do present so differently than boys, In the A/S school my daughter goes to, the boys and girls are almost like seperate groups and it isnt just a gender thign.. they just present so differently.

this might help? http://www.slab.org.uk/getting_legal_help/...eaflet_2008.pdf

My daughter has always had sleep problems, but we just had to get through it, she now takes melatonion which works well. What I am interested in is your remark about the school saying that it could be a home problem causing his problems. This in my opinion is often seen. It is often the case that issues are blamed in someway on home life. others have given you advice on the route you might take with his tiredness, but it would be good to open a good communication with school so they know it is not just homelife causing all problems.. When we went to tribunal, my health was brought up, my divorce, and her lack of sleep.... sad....

Thanks Julia, I think sometimes we forget that we are allowed to have fun! Life can be so difficult at times and we can fight so much for what is needed for our kids, we often forget the affect A/S can have a really big affect on their siblings too. My middle daughter is wonderful, but smack in the middle of puberty and my goodness the sparks fly sometimes! Thanks again for the comments about the site. Please feel free to let me add your story to the site too? I will anonymise all stories, I jsut think it would be helpful to others if anyone wants to share. I have also find it's therapeutic to write it down. x

Never heard of these cards.... Cinemas are soo dear but it is one place i can take the children that is safe and fun.. I am going to apply.... Does anyone know.... does the carer have to be adult? I could have a card... but it would mean my carer would be a child which of course they are at times.

DLA is often a lottery.... My youngest daughter aged 12, has lots of problems. And definitely needs more help than the average 12 year old both day and night. She is destructive so needs to be watched she wets the bed so needs attention, she steals food from the fridge and can be aggressive, plus a whiole host of other stuff. She has no formal diagnosis. She gets DLA lower level care. My daughter diagnosed with A/S gets middle care and lower mobility.. she can walk but is at risk of danger because when out and about stressed she runs and isw a dnager to herself... physically she has less problems than my other daughter. I have two incurable liver conditions. No longer can work, am in constant pain, have very limited energy and have to sleep a lot each day. I was turned down for DLA twice, left it a year then reapplied. I was awarded this time first time. It is not at all about having a diagnosis, but all about how much help you need over and above that of an avergae individual I thas nothing to do with how much money you have to pay out for respite care etc... It depends on who sees the form and how they interpret what you say.... for instance the form asks how far you can walk without being in pain.... I didn't answetr this because I am always in pain but its not caused by walking. They rang me up and queried it so I told them the truth, that I am always in pain so theretiically i cant walk any distance out of pain. But I have the pain even if I stay in bed. But I get mobility now because that fullfills the criterior. There is a really good forum on works and benefits which gives tips on how to state your difficulties properly. They don't tell you how to cheat the system, its not about that, but many people who should receive DLA don't get it because they don't put enough of the correct information in. Its worth taking advice before filling out one of these forms as they are so very complicated. As for back pay..... my personal application was lost then found then messed about with and iut took 6 months for it to be sorted out They paid the whole thing to me as back pay in one lump sum, which also allowed me to take my children away this year as I am not sure we will be able to go on a similar holiday again due to my health. As for the cooking thing, I cant lift heavy thigns out of the oven but I was told that they base the cooking thing on a ridiculous thing.... something like whether you can use a knife to chop a few vegatables and put them in a pan. I ahve to cook for 5 people so that skill is next to useless if i cant get it in the oven but thats not taken into account. If you say you can't stand for long in the kitchen they might suggest a perching stool, so you have to preempt their replies when you are filling in the forms. I think it is something like..... if an 'aid' can help you to do something, then you can't say you can't do it.... But if an aid isnt appropriate they can't make you use it.... for example for me in my kitchen a stool would be dangerous as it would mean the children having to push past to pass me. They can suggest a commode for your bedroom if you struggle to get up to the loo in the night so you need to say in your application that you have considered a comode but feel that it would impact on your pride etc.... after all who really wants to go to a pee in their bedroom unless it is absilutely necessary. All these thigns have to be taken into consideration when applying.... it isnt as easy as just describing your probblems. The whole system is flawed. It does not in anyway make allowance to help where finances are tight even to help to look after someone... unless the criterior for that person are met. There may be some benefits however where you can claim for child care or respite care but these are usually means tested I think. Apologies for typos.... I am on pain meds... and i don't always see the typos! - sorry

I thought demtia too as soon as i read the post, the long stand is something almost every new student nurse fell for when I was a nurse in the past... a standing joke in many companies along with being told to ask for multi coloured paint or something. Sometimes because we sppend so much time looking at autistic tendencies, we can begin to see them everywhere.

Hi Feather, I totally understand how you feel. I have PBC/AIH overlap syndrome, which is basically two autoimmune disease of my liver. My conditions are progressive and not curable, and I ahve been ill inexcess of 10 yrs now. I no longer work, havent for about 4 years as I have constant pain and somedays struggle to get out of bed. Like A/S My condition is hidden and I look relatively well most of the time so people just don't understand and I'm sure think I am a lazy ######. Fighting the system with my 15 yr old DD with A/S really took it's toll on my health and I often cried with despair. I am now trying to get to the bottom of the problem with my 13yr old DD who has some problems. This time round I have noticed I have a lot less energry and drive, and have to moderate my activity. Like all illness you have to look after yourself or you are no good to your children. I'm hopeful that once the doseage of medication is right for you, you will begin to pick up and feel better. As others have said some ME TIME is the key and if you can get this in any way, do take it, even if it means asking for some help from a family member or something. Hope you feel better soon.

Hiya, I agree with Kathryn that it must be softly softly, but it would be a shame to put a halt on what at last is progress. My daughter like yours is very anxious, her tutor took things very carefully, and funnily enough did bring her dog and asked if we could go for a walk! Looking at the dates, your tutor will already have been in, how did things go? If things didn't go to plan, try to speak with the tutor on your own, see if you can create some sort of action plan that would be acceptable to your daughter. Also if your daughter can't cope with a stranger in her home, there is no reason what a suitable alternative place can't be arranged. For example, my daughters home tutor saw some children at the local library. This is good as it does let the child get away if necessary. A few times when we had the tutor here, when my daughter couldn't cope she had no where to go, and ended up running off away from home which is her safe place. I think I am corrrect in saying that all aspects of home ed should be risk assessed, we had a huge form we had to fill in, to make sure things were safe and suitable, but this works both ways, and the tutor shouldn't be causing excess stress to your daughter in her attampts to educate her. Let us know how she got on. x

Thank you so much Julia, but pls feel free to pop in and put a comment in her guest book... this is such a measure of acceptance for her We will be addign more of her poetry and I am shortly about to pop on her sisters story.... although as of about 2 mins ago they are very like typical sisters hating each others guts lol

the school need to make sure that your son is safe first and foremost, and that he gets as much out of the trip as any NT child or as nearas. (I think it something like anything that can be put in place reasonably, and can be then should be~) The basis of our discimination tribunal was two school trips with a transport problem thrown in for good measure. The school was slammed for not putting in the right support to allow her to go. Ultimately, you HAVE to know that your child will be safe, if the school is able to put in 1-1 support and its deemed necessary, then it should happen. Elizabeth www.realas.co.uk