Dylansplace

Gosh annie tracking this thread is really making me feel sad Don't these 'people' understand what they are doing to our children. I just said to hubby, wouldn'y it be great if all our a/s asd kids grew up & became teachers, then recalled all these ignorant profesionels into'class'. I can't comment on the legal aspects of the UK system as it stands however I do have a deeper insight as to the 'workings' of thanks to a good friend of mine ( further post !). Hang on in there <'> <'>

Hi Carole, You must be able to read my mind. Only two days ago I was thinking down the same track. The 'system' as it stands relys on the fact that as parents we are isolated. The concept of 'banding together' as a unit would give us a voice. If we had a representitive national collective, of out spoken parents behind us, then these harrowing school meetings that each & every one us attends, would stop being so intemidaiting. I posted somewhere the other evening that my hubby says I should no longer need to buy books on ASD since finding this forum & someone else echos that, Kathryn I think, But its true there is such a wealth of knoweledge right here. You certainly have my vote

Hi & thanks I am still reeling !! Nelly, no they have no ASD support or info, therein lies my concerns, who is going to replace 'us' her support back-up ? Bid, how did you cope ? I want this so much for 'e' BUT ??? Please inform me ' what would you do' ? Kathyrn, yes at long last they are taking this seriously, but what do I do. We are talking about a child who has devised her own comunication system/ ie when returning from school/college she writites a No on a blackboard we have. 1 is bad day 10 is ok day, depending on the No relayed,depends how long it takes for her to 'talk ' about her day. This facility will not be available at the Lycee !!

Hi everyone, Got so much to say & it's all rattling round in my head so fast I might get it writen down wrong, so sorry in advance. First want to say that after reading a couple of really sad, frustrating postings today, I feel guilty at being so happy. But I really can't contain this anymore. Yesterday evening I got a phone call, 7pm, from 'e' school s/worker. He asks " can I make an early morning meet". Intrepitation sets in, so armed to to the teeth with 'defencive docs/bks, etc I arrived at the school 9am this morning, in fighting mood. On arrival I am greeted by said s/w & principal, apologeticaly, they explain that even with all the info that I have given them they can't learn fast enough about a/s to support 'e's needs But they have taken on board that 'e's ambition is to be a jockey & has serious difficulties. So they have spent the last 5 days researcing the availability of such institutions. After dismissing many, they have found one and have got them to accept 'e' in SEPTEMBER. It's brand new. Normally they have to be 15 to enter Lycee (equates to universaty in the UK) Unlike many others, this one also continues the academic programe, so she will get her final qualifications ( she so desparatly wants), only they have a condenseded timetable, focusing on only core subjects So she will drop from 50hrs academic study to 30hrs. 50% of the time she will be in equestrian school She has a trial day on the 10th March, after wich we have to the end of May to make a desision. The ONLY issue I see as a problem is that it is residential. We have always been her only support team & 'educators',how will she cope without this ? Bearing in mind that this is NOT a a/s unit Bid, I could do with your input. I'm not even sure how I feel at losing my 'baby' so young Nikki, it's at Saint-Hilaire du-Harcouet, 'bout 2 hrs from us, but close to you I think. Then even more, I get home, head buzzing I get a phone call !! The specialist, that attended early on, with meeting with school. She admits France is BAD at taking ASD on seriously, very apologetic, explains that France is the only EU country that doesn't have facilities for a/s kids ( like I didn't already no that !) She asks, can I attend a meeting with several other specialists on 6th April to explain to them the needs of a/s kids from a parents point of view I'm gob-smacked. Overwelmed right now Thanks for everyones support & feedback One day at atime

Oops missed this one Is this oblegitory ? If so sorry ! Hi I'm me, married to Nik, he's on here somewhere he tells me, very happily for the last eight years. I have four kids from my first marriage, 2 sons, aged 21 & 20 & 2 daughters aged 19 & 13. Youngest was dx'd a/s aged 9yrs. Youngest son is non dx ASD, but last summer was dx'd as psycotic scits- ofrenic ( sorry can't spell it) hope you can work it out. I'm not convinced this is a true dx, but what the h*** I'm only his mother. He is now sectioned in a UK 'hospital. Sometimes feel it's all to much, then I read other peoples plights and end up thinking' so what I am I moaning about'. Love this forum, unlike some others I've looked at, it's not judgemental. Nik says he's glad as it will save him money, as now shouldn't need to buy books, he reckons I've got a'online librerary' here. Kook forward to learning more

If I had had a � for every time I was told that I thought the UK had a total 'zero tolerance' on bullieing ? I do hope you can resolve this Good luck

Wow Annie, what a great result I've no idea if the school on offer is good bad or indifferent, but what a turn around. Your son must be feeling happier. Well done

Hi Annie, my heart really goes uot to you & your son.. The first quote, is amost word for word what my daughter expressed at a recent simialar meeting. The second quote is the one that worries me most. It sounds as though your sons self esteem is really at an all time low. I don't have answers as I am outside the uk system, but I do know how you must be feeling. So sorry <'> Hope things inprove very soon

Happy to see you back

That s ridiculas !! like they would have listened !! When I postested this I thought maybe I was being biased, however reading further postings I feel happier with what I wrote. Your son is clearely distressed and needes to know that he has your support Keep him at home. I would. Your son is being bullied at school by peers he doesn't need it from adults

Hi Tez I read this a few hours ago & was so angry, I had too go away to get clear what I wanted to say and I've got it now. In my opinion, under no circumstances should your son be punished Why ? Firstly, as already stated, where were members of staff when this took place ? Second, I would ask how an adult/staff member would have handled it ? By politly asking the 'animals' in question to refrain ??? Whilst your son appears to have taken radical action, it would sound as though he responded calmly to a very scarey situation and stopped it. He didn't beat these 'boys' around the head with a chair, he simply removed them, bearing in mind there was two of them, I reckon he deserves a medal. I would say 'stand by him'. I hear what you say about your'relationship' with the school, however your son relies on you as his advocate. He is not guilty of anything other than useing common sense in a uncommon situation. It saddens me to read this, why does your son, 'need' a safe area ? To protect him, I know, but it seems so very wrong that the victim is being segregated, whilst the bullies have the freedom of the playground. Surely it should be the other way around. Be strong and put your foot down. Good luck

Hi Karaoke queen , Welcome to this forum, it's great here, I've not ever found a Forum I could write on, this one is just so friendly & informative. Hope to read more from you <'>

Hi everyone, Just wanted to keep you posted. Nellie, I emailed the european health org about the case at Strasbourg and asked where I could get a French version of the report. They mailed me back this morning and said that they have now posted a F version on the epha site and they have so I printed that too. Nikki all that info has proved fantastic. Dredging my way through it has taken 'till now, but what a revalation some of it has been. Thanks to you I have now found a French a/s site with MASSES of info on it, not least a contact specialist in my dept. Dept 50, 14 and 61 all have their own sites. They mention little on a/s, but it's a massive breakthrough. I've rang the CMI again this morning, they were aware that there were problems with 'e' and I going to be contacted in the morning, first thing. Meanwhile 'e' has gone off to school promising faithfully that she will work harder, won't get angry and try to understand more. What do I say ? Don't try, thats what I wanted to say. I explained that if she can't it's because they are not providing her with the right enviroment, and that it is not her fault. I do not want her turning into some silent robotic creature. Never the less she has convinced herself she can do this. Which is only going to make the inevitable 100 times worse for her, as she really will feel she has failed Thanks again everyone

Thanks Nellie I really apreciate it.I don't know if you picked up on it but at the end of the press release they have disclosed all the contact points for the barrister who represented them. I have e-mailed her, so a million thank you's

It is on www.autismeurope.arc.be/english/frame.htm I think thats right. Then go to what is autism ? However Ive just checked & would you believe it, today of all days they are revamping their site and this isn't on it. So I've retrieved it from my history files and glued it below. Their new site is www.autismeurope.org. The stats that they quote, as hubby points out, are based on dx'd individuals !! Autism is perhaps the worst of all disabilities, it is not seen, it is not noticed, it is not understood. Today, autism is considered to be a pervasive developmental disorder of the brain functions (definition of DSM-IV and ICD-10) which prevents a person from organising and understanding information transmitted by their senses. It can cause a person to withdraw into ownself and can affect social interactions with the outside world dramatically. The main symptoms of autism are : Deficits in social reciprocal interaction Deficits in verbal and non verbal communication and imagination Limited range of activities and interests Autism is a serious disability. Although autism was once believed to be rare, clinical studies have now demonstrated that the prevalence of full, classical autism is 4-5/10.000 and there may be up to 10-20/10.000 people who exhibit many of the symptoms and so could be included within the " autism-continuum ". Autism is sometimes combined with other disabilities such as Down syndrom, epilepsy, Rett syndrom or tuberous sclerosis. Even today, due to lack of proper diagnosis and services, many people with autism do not receive adequate care. Experience has demonstrated that the best treatment for people with autism is early and specialised education which aims at making the environment more accessible to the person with autism and addresses the specific deficits of each individual.

Nellie, Sorry to be a pain, but could you tell me where you got the link from to the document about the 'upholding of the european council against France' please. I've calmed down a littlle & want to explore the possibility of printing it out in french from it's original source. When I click the link you gave me, it comes up as a word doc. This is exactly the ammuntion I need right now and giving it to them in English is just a waste of my paper. Thanks very much

Hope I got the quote bit right or this will make no sense at all. What you wrote echos my sentiments perfectly. I read somewhere earlier today that ASD/As is one of the worst disabilities, as it unseen and misunderstood. You have my sincere sympathy <'> It makes me furious When will people stop being ostriches. Surely these 'professionals' have an obligation, to keep up to date, with teaching methods for these children. I happy that your son will not be in mainstream school Good luck

Sorry to have dashed off like that Getting back to you Nikki. An aide scholaire is not an option, I can just see 'e' reaction to that one. The local ed/phy has never heard of a/s. I know this, as after the 'wall bashing' incident, 'e' was seen by one. Without my knowledge You make mention of a representative, possibly a bi-lingual one. Is there a way I can acsess such a person independant of the course you suggest ? What I want to do now is secure a placement in an establishment that 'e' can receive her education. First I need to locate such a place. Given the level of ignorance we are up against, I will be suprised if it exists in dep 50. Possibly we would be talking Caen or even Paris, which would involve residential care. I'm not sure any of us could cope with that right now especially 'e'. I'd reconsider home ed for her, but I'm not sure I'm equiped to get her through to qualify passing out of a Lycee ? And then there is the isolation factor. Right now I don't have all the answers, so any suggestions welcomed. Thanks to all again <'>

Hi Nikki Thanks for all this You must be exhausted. I'll explain where I am currently in all this. I have yet to source a GP in my department that has heard of Aspergers. I have been in contact several times with the British Consular and asked them for a name of such a GP/specialist. They are no longer allowed to hold such a list. I have spoken with medical/social/insurance hot line in St Lo and have been told no such person exists. I have repeatildy banged on the door of our local Centre Medico Psychologique pour enfants et adolescents and got no where. I did manage to track down a female who works for the above office and has an 'understanding' of a/s. She agreed to accompany Hubby & myself to the first meeting at the college. Scary as it was her knowledge was miniscual. She explained as as best as she could. However I did furbish them with Tony Attwoods book in French and reams of French Documentation on a/s. Thanks to Nellie i now have docs that clearly outline 'e' rights to an education. The school are taking the easy walk. They are direct contrevention of French law. I don't want her back in mainstream ed. However they will listen. I am currently in contact with a French advacate, who recently represented Autism Europe at Strasbourg. Must leave in a hurry, will finish this later

Hi everyone, Been up now for hours. Can't sleep. your support is just compounding my feelings. Thank you <'> Thanks Nellie for that document. I have printed it off. Having read it, it tells me I have got the european council on my side. In fact it slates France for it's lack of educational provision for ASD children and that was in March 2004 Hubby says he's going to present it to the principal first thing Monday morning. Stuff the fact that it's in English, let him work it out. Right now I have two channels of thought. A) what do I do with 'e' when, not if, expelled ? I have to source an alternative education for her. I will drag La Manche into the 21st centurary ( in regards to autism) if it takes me the rest of my life. We did look at home ed for 'e' some years ago, but she became very intravert and withdrawn. Short term ie yesterday, we decieded that to keep her focussed and relatively posative we would highten her focus for the future. So we we took her to a 'up market' riding school, upped her lessons, and are going to be in touch with a jockey school early next week further south. Our first goal has to be salvaging her self esteem.

Right now, just want to crawl into a dark place and then'feel better'Hate myself sel for trying to push her through 'main stream ed' What have I done ???

I just want to say, thank the stars for this forum <'> It helps so much to read other peoples up's & downs. I remember then I am not the 'only one'. Having attended my meeting yesterday with my daughters school, I was so distraught Dunno about anyone else, but when I get distressed my head fills like cottonwool. I wasn't angry, that came later, and I didn't cry, I just felt numb and woolly all over. Then I cried, then I got angry and that cycle is still going on. Though the tears are giving way to the anger and boy am I angry and very frustrated. I attended yesterdays meeting believing I was going to a Q/A session. OH no. After polite hello's etc, I was told by the principal that unless my daughters, attention span, test results and behaviour improves over the next WEEK, she will be expelled. With clenched fists, hidden in my pockets, I asked why the special needs teacher was not present, I'm told they don't have one I asked what facilities they have for other special needs kids. The response floored me. They are either expelled or if they are considered to be compliant they are re-tained in school and given menial tasks to occupy them i.e. cleaning the canteen or toilets I kid you not. I feel as though I am in a time warp.(Dickinson) Someone wake me up please. She, 'e' ( my daughter is too long to keep typing) has as much chance of achieving the requested, as growing a third leg. She has ambitions, ie she wants to be a flat race jockey. We finally,I think, persuadered her maybe a boxer isn't an ideal occupation, though she'd make a perfect female Tyson !! Joking aside, she WANTS to complete her education, she wants to LEARN and is more than capable in the right enviroment. Touching on another thread, I always thought inclusion, was the right path. I am so angry with myself. This was never the right thing for 'e'. And there was I thinking I was doing the 'right thing' As much as she can explain, 'e' has said that when she is in class as soon as the teacher starts talking all she can hear is 'white noise' (my words) and everything speeds up !! Whatever she is experiencing it's real to her and at the end of the day that is what matters. Her biggest fear is failure, I spend so much time explaing that nobody can achieve 100% all the time. So expulusion will destroy her. What do I do. Sorry that isn't really a Q, I'm just venting The only logical thing I have been able to to in the last 24hrs is e-mail autism europe. They are supposed to represent everyone in the autistic spectrum within europe, to the european parliment. As I am outside the UK, I don't think any of the UK rulings apply to us. Sorry to have ranted for so long, I never realised until yesterday just how ignorant people can be.'e' in our eyes is a unique wonderful person, with an insight of the world as we see it, that I envy and love, why can no one else see her the same way ? Before I go, glad to read your meeting went well KLU.

Hi LKU Like Kathryn, can't add much, only I hope all goes well 2morrow . I two have a 'dreaded' meeting at 9a.m. with the school. Rage & Anger being top of the agenda. Incidently I was reading on another forum today, & there was a ? about education & a/s kids. There was a response from a mother in Isreal, saying it wasn't a problem for her her as her son goes to a school for a/s kids !! So why are there none in this part of France Good luck

Hi Kathryn Any progress yet ? Nice to hear another person experienced the 'modesty' dilema. It is after all an illogical concept. My daughter could only see clothes as something to keep you warm, so were not needed unless she felt cold. We have been adding to the 'list' of who, where's and when's since she was eight. As she gets older the list just gets longer. It does work though, providing I keep up-dating it Thanks for asking about her health. We always known about her heart, and it wasn't a major issue until she developed asthma about three months ago. At least this is what the cardiologist is telling us, I'm not convinced. He say's the asthma is exasabating the heart problem, hense the black outs. So they are experimenting with inhalers. However, having witnessed one of these attacks I think they are panic attacks, and the inhaler is just causing her to focus on her breathing, and thereby calming her down. However, if it is asthma, she needs the medication, though I'd love to try with a paper bag. My reasoning is that only one attack has happened at home all the others have been at school, and as you know its been hell there !! Any ideas ??

Hi Kathyrn, I do hope you make progress this wk/end. I agree, as hard as it is 'slipping' her medication is a break down of trust. In a simialiar (vaugely) situation, I had to break my daughters trust recently She has a heart problem & very recently started passing out. Panicking I raced to my GP with her, who does'nt understand a/s (mentioned before). Having explained the symtoms, he turned to my daughter & asked her to take off all her upper clothing. Daughter started screaming the likes of 'keep that pervert away from me' & such like. How long did it take me to teach her who you can & can't undress in front of ?? Should have put ignorant Dr's on that list !! Given that he & she are at exploding point, I figured now was the time to leave. Since then I have found a 'a/s' friendly GP. As much as she hated it, she relented to undressing. I felt that I really let her down . The price for this co-operation, a Mac-Donalds!!!, a very rare treat indeed. On the lighter side this raises concerns for the future !! I really hope you make progress and your daughter can be persuaded to see that this will help her <'> <'>