curra1

Thanks, Karen. I'll let you know what the psychiatrist say. It will probably be in January. My son takes Fluoxetine for his depression. Curra xx

Thanks, Guys <'> Several months ago I contacted my MP and I got no reply from him so that's one political party I will never vote for. Cat, I wish I had your courage but just the thought of going public scares me and I don't think that I could cope with the stress of it. I have received lots of advice from the NAS, they are very helpful and give excellent information, and I wouldn't hesitate to contact IPSEA if I find myself with my back against the wall. Right now I have a CAF meeting before Xmas where I will talk about these problems and ask for solutions to be implemented asap. Thanks for posting the Every Child Matters aims, very useful! Curra xxx

I would love to meet you, too.! I'm on the SW coast but can get to Bristol, Bath, Cornwall, Dorset, Somerset... I'll be away from Xmas until mid-January. Hope the meet up is after that Curra

I'm so sorry. It's so heartbreaking to lose a pet. <'> <'> Curra

Karen, My DS is 14. He was diagnosed with AS when he was 10 and although he has no "official" dx of OCD the psychiatrist has mentioned it as well as depression. I'll ask about BP when we have another follow-up. Curra xx

Thanks Everyone for your wonderful posts!! <'> <'> I am struck by the number of parents who feel they've had no other choice than to home- ed their kids. I've been thinking these last 2 days very hard on your views and experiences , which are very similar to mine and I think that HE would be the best way for M to learn for his GCSEs. But he's reluctant to receive HE because he tends to see every change in his life as a personal failure and he thinks that with the right support at school he will get better marks and make friends, so he wants me to continue the fight against the school and the LEA. He dreads going to a special school, so I 'm leaving that option out. M is very isolated but that's not his choice since he would like to have friends but he doesn't know how to make them. He has only me as family so the idea of not having other contacts scares him. I can understand that since he doesn't like going to social groups or doing activities for young people. HE would mean for him that he 'd always be at home with his mum. Not his ideal solution I am very disappointed in the way the school system has so far treated my son. M is on the very high functioning end of the autistic spectrum, and like many of your children too, he's a good student who because of his AS is at a disadvantage compared with NT students . He has never been really understood by the school system, and the way he has been treated by teachers and peers has been having a bad impact on his mental health. He has never made a friend even though he's polite, witty and gentle. Other children don't invite him because he doesn't participate in sports or activities that they like, he doesn't share many interests with them either, all M cares about is academic stuff that puts other kids off. Schools through the years have done nothing to help him, on the contrary they have made him feel incompetent because he doesn't join sport groups, and teachers whom I asked for extracurricular art or music activities just looked at me as if I came from another planet. I know from other parents that M is not liked by his peers because of his different interests and they consider him an "excentric". I am not very convinced anymore of the school's inclusion and social skills strategies that in practice mean he has to be "strong" and accept being teased and left alone by his peers which in the end is just more stress and unhappiness added on to his young shoulders . But he wants to keep trying, so I guess I'll have to keep explaining to the school what they already know but don't want to admit, that my son needs to be taught alone or in very small groups, must not be forced to integrate, and should be helped to work to his full potential. I know that he should be educated at home, but he wants to stay in the school because he has a strong desire to belong . There's also the financial side of it (and perhaps this is the first thing I need to take into consideration) which means that I can't afford to educate him without the LEA's financial help. I've heard about "flexi-schooling" , could this be a way forward.?? As to health I'm fine, thank you Clare. Nowadays there are pills for everything and I'm taking lots of them to make me feel good and live longer ! <'> <'> <'> <'> <'> Curra

Shaz and Steve, I've just read about your terrible experience with your son's school. It's really disgusting how they have treated you ! Good luck with home educating your children! <'> <'> Curra

Thanks, Tally! I've thought many times that there's something like it, but the psychiatrist hasn't mentioned bipolar, he only mentioned OCD. Could he have both? Hopefully not. The strange thing is that his mood changes happen during the day, they are not phases. Curra

Hi Cat, Thank you so much for your reply <'> <'> your views are very helpful for me at this difficult moment. I wish I could end the school chapter (and torment) for good, but my Ds wants to stay in the school system, at least that's what he's saying right now. I have the feeling that he wants to stay in the school because he sees leaving as a kind of failure. It may take more convincing on my part to make him understand the benefits of HE. Although I am a teacher (retired) I have never prepared students for the GCSEs since I always worked with older students abroad and I don't feel confident enough to do it. But I really wish I could because I know deep in my heart that it would be the best for my son. Just to imagine him liking himself for who he is makes me want to try it! The adjustments that the school make is an ASD unit where he is allowed to learn because he's too scared of mainstream classes. There he receives more support and he learns either in 1 to 1 or in a very small group. But the school don't want to have him there and they tell him everyday that he will have to leave the unit and go to mainstream class, because it's best for him , he has to face big groups later in life etc etc. He's worn out explaining why he cant (and not being believed) and has wasted too much energy with paranoid thoughts instead of feeling relaxed and learning to his potential. He's also not being taught by tutors as the school say they don't have the resources, so there lies the reason why he's constantly being pushed to go to mainstream. I know other parents have taken the school or the LEA to tribunal. Sadly, I don't think that I would be able to go that far. Sorry to sound so negative and coward What is my son getting from attending school? A bit of learning and a mental health problem. As to socialising, he has become more isolated and scared of people than he ever was in primary school. I'm very glad that your son is doing so well in home education! Thank you so much for your thoughts, I'll print them out and keep them. Curra

Hi Clare, A Big thanks for your reply, your support and views mean a lot to me, <'> <'> especially at this moment because I know I have to act and soon in order to help my DS. I am under a lot of pressure because I have to juggle this situation the best I can and I'm not very good at it. These are the times when I wish there was a dad also around ... I have been away for a while because of poor health (heart problems but not too serious) and in order to avoid my own stress I've been having my head stuck in the sand for some time which has also meant not using internet too often. I am so sorry that your lad is signed off sick from school with stress. His school's reaction is typical and it sounds so like my son's old school before he had a statement. I kept my DS at home whenever he was stressed (and I still do) and presented my letters to the school as evidence to apply for the statement. I hope that the response from the LEA to your application is a positive one! (keeping my fingers crossed) . When staff tell my son that he has to "face reality" they mean that he has to accept that he has AS and learn to live with it in an NT world. He hates his dx and thinks that others treat him like a "retard" (his words) because he is seen coming out of the ASD unit. Staff have even forced him to go to the big groups and told him about things related to the unit in front of all the others (they said it was to make him overcome his fears!!) . This has made his fears worse because he says that now everyone knows that he has AS. It's no wonder his achievement is going down. But (unfortunatelly) M doesn't want to be home-ed because he wants to be accepted by others and receive more support and understanding at school. Personally, I really doubt that he will get what he expects from the school. The damage to his self esteem has already been made through years of teasing, bullying and lack of understanding in different schools and now his academic future is also at risk. Good luck with the statement!! Let us know when you get a reply. Curra

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Hi Josie, This is a question that I have often asked myself too. My son (14) has been on Risperdal for 2 years. At first he had 0.5 mg once a day which is a very low dose, but nevertheless he had side effects (muscular twitching). It was reduced then to .025 mg once a day and ever since he's been fine, apart from increased appetite. His weight is stable, although rather a bit overweight but it's also because he doesn't do any exercise. During these two years I've reduced the medication twice but I ended up giving it to him (with doctor's consent) again because without it he gets in a state which he describes as "not having enough control" and could harm himself or others. He's being monitored by a consultant once a month. I think that medication is not the only solution as most of my son's stress is school related and without that stress he would be so much better, but the benefits have been more than the negatives. It's really something that I have considered carefully and finally thought that it was the best thing to do in his case. You are the best person to judge what is right for your son. Good luck! Curra

Hi Phoebe, Yes, I challenged an exclusion once and although it was just for 2 days, I wrote a letter to the head in which I complained about the punishment because my son's behaviour was a result of his disability and because his needs were not being properly supported. Although my son had to comply with the exclusion, there was later a meeting with the school to address the problem and respond to the issues I raised in my letter and that was what mattered more. It was positive because it led at that time to more awareness of my son's difficulties. In the end I had to change my son to another school anyway, (and now my son is facing other problems in this new school) but it is important that you express your views about the exclusion. IPSEA 's website has very good information on exclusion and how to challenge it. Good luck! Curra

Mel, this situation is totally unacceptable. I agree with what others have said, that you must complain! Call the transport people on Monay and ask them directly to provide suitable transport for Jay and explain to them that 7.15 is not an acceptable option because he gets to school feeling too tired so he can't learn well. Also tell them that you can't drive him to school, full stop. Good luck! Curra

M has continued to have most of his lessons in the ASD unit but his stress is worse than ever. Staff keep telling him that he has to be reasonable and face reality (and therefore go to mainstream), on the other hand he hasn't been doing very good work because he says that he has to be alone with a boy who constantly torments him, takes his things and hides them, calls him names and laughs at him because he's afraid of his peers. He says he can't concentrate or work quietly because he's always distracted by this lad who is also not a good worker . Yesterday M got a very disappointing report and as usual, he got all the responsibility for his poor results because that's how schools always see it (but M sees it as blame), so he reacted to words such as "work harder", "more effort is needed", "complete your work" and so forth with anger and hurt. He wants to do his GCSEs and get good marks . When he saw the low targets set in his report it was for him a proof of his failure. At home I tried to talk about it with him but it just led to him screaming. covering his ears and sayng things like "nobody understands, I can't take it any more." Later he said that if he didn't get good marks in his GCSEs he would kill himself , he also said many other things but it would make this post too long to write them all. He knows that he would improve his work if he went to mainstream classes but he says that he just can't because he is terrified. He's at the point of breaking down again. So what do I do now, the school won't or can't give him the type of support that he needs which in my view is because in the unit they emphasize the social integration too much and don't support enough his academic learning, apart from the constant nagging about going to mainstream class. M says the he is all day thinking about how to hide and protect himself from people who can harm him (peers mainly) which is something that really worries me as it looks like a mental health problem that has been totally overlooked by the school (although I have told them about it many times). Has anyone gone though something similar? Is home tuition the only option left? I welcome all your thoughts about this, I really need help ! Curra

Interesting topic, thanks for the link, Tally. My DS goes from feelings of self-importance, destined for greatness, being funny, talkative, sleepless to feeling empty, with no future, hating himself and everything he does - all in the same day! He has a dx of AS and OCD, but I often wonder ir he is bipolar. Curra

Hi Baddad, I'm still trying to find something for my son over the holidays in my area. There's an AS group that won't take him unless a parent is there. The problem is that I need to go to counselling (for myself) once a week and it looks like I will have to cancel the appointments during the holidays, unless I find a scheme through the S services. It would be easier if I knew more people, but I moved into this area only some months ago... I am also one who can't make social contacts very easily:unsure: Well, at least the weather is getting better and I am taking my son for walks. Yesterday we joined a group of woodland rangers and he had a great day. He was so well that I almost forgot about his AS! Hope you have a nice holiday! Curra

Simon, Nellie and All, Thanks for your good advices. <'> My next step will be to see the GP next week and hopefully get an appointment with an OT. I'll keep you posted. Curra

Nellie, Thanks for your support. It looks like a maze of procedures and I agree not to rush things. Right now I am struggling to cope with the diagnosis and not in the best shape to make a good presentation of my son's case to the LEA. I think that children's needs should be met the same in every case and in any manner the petition is presented, whether the parents are knowledgeable, self-confident, and articulate regarding these matters , or not (like me) because it should be the children's right to have their needs assessed. But well, I know that things are not always the way they should... Curra

Nellie and Helen, Thanks again for all this information. I would have never found it browsing by myself. The peadiatrician sent copies of his diagnosis to the Ed. psychologist and the GP. He calls the note written by the Ed. pscychologust an ' educational assessment'. From what you both write, I see that I need to be very clear when I ask for a statementing. In fact, I do believe that there are reasons for asking a re-assessment of my son's needs, as he cannot cope with mental Maths and can barely solve some problems on paper. He can't even tell or read the time! THis was bad enough in Primary and it is likely to get worse in the comprehensive school. His Science work is good, except when he has to measure, he just gets lost... He is quite good in English and History, but for how long? I also consider his safety going to school a special need due to his eyes, as well as his special requirements in Sports. Apart from all this, even though several of his classmates are going to the same comprehensive, my son was placed in a separate group! I have to make them see that he needs special support in social skills. I'll try first with the GP. If it doesn't work, I'll write a letter to the LEA. Keep your fingers crossed. Curra

I am still a bit confused as to what is the next step that I should take to get concrete support for my son at his new school. I have a written diagnosis from the educational psychologist and also a confirmation from the peadiatrician. Where do I apply for a statementing? Should I go back to the GP and ask for medical help for my son's poor coordination? Could he also initiate a statementing? Sorry for asking so many questions in just 2 days, but all this is very sudden and I am totally alone with this new situation. Thanks for your advice and support.!! Curra

Nellie, Simon and All, Thank you so much for your replies! This forum gives me a good welcoming feeling Yes, I have read Tony Attwood's book and I have found a support group in my area that will meet again in September. Talking about holidays, I am in need of some advice on what to do with my son during these weeks. His best friend is gone, he feels totally bored with me and spends too much time walking all by himself in a nearby playground. There are other children in this area who bully him calling him names and some even threw a bottle at him last week. He came back crying and said that no one wanted to play with him. He as tried to make friends with some of them, but his nerdy approach is not accepted. He hates fun fairs and crowded places. Perhaps I should post a message about this in another part of this forum? Gloria

Hi, my son (almost 11) has been recenty diagnosed with AS. Some people and then his school expressed concern about my son.To me, he is a bright, rather eccentric boy with a wonderful capacity to learn whatever he fancies, except Maths, and I find it hard to come to terms with this diagnosis. The Ed psychologist and later the pediatrician said there is no doubt about it, so it seems that I have been the last person to admit that there is something wrong with him. I realise that he will need some support in his new school and perhaps also later in his life, so I am in a sense a bit glad and relieved that he has been finally diagnosed. He is from birth totally blind in his right eye , he is my only child and I am a lone parent, which makes all this a bit more difficult. I am posting with our cat's name to protect my son from circumstances that are too personal and complicated to explain here. Thanks Mossgrove for referring me to this forum! Curra