curra

Elly, What that teacher said to you doesn't make any sense to me. How does the parent's signature influence a school to do its job properly?? It sounds like a very poor excuse. Last week in the meeting I agreed to a contract *between the school and M* because he needs structure and it usually helps him to know exactly what his options are. What took me by surprise was that they have sent me a copy asking me to sign it too . In this contract they wrote that " M must attend all his mainstream lessons". I don't want him to be forced like last week when he refused to go to a lesson and he said that a "a huge fat lady came downstairs to shout at me". I think that they have to address his social fears and force is IMO not the best way. I don't see any reason for me to sign this paper unless they want to safeguard themselves in case I complain that he's not being supported in the unit. I'll contact the teacher tomorrow and depending on what is said I'll ask the LEA SEN worker. Why must there always be a problem with schools? Hope you have a happy Sunday too ! <'> Mel, They don't have a teacher for M who is very able, that's the real reason. There's one teacher for all the kids in the unit and the boys who are in year 9 are learning at a lower level. M spends breaktimes, lunch and registration time in the unit, he doesn't queue for lunch, he has a card to leave the maintream lessons for 15 min (then he has to go back) and he has opted out of 2 subjects so he's at the unit during that time too. It sounds like a good arrangement for him but his social fears have increased lately and he refuses to walk in the corridors unless he's not seen by his peers or, as it was last week, refused to go to any mainstream lesson at all. His anxiety is not beeing taken seriously at school, they say that he "can" but "doesn't want to" attend the mainstream lessons, that he's manipulating the situation etc. because they see him working well in the lessons and he has never thrown a meltdown at school (he waits until he gets home...) . He has been feeling so much stress that he chewed all his toes until they were bleeding. I was horrified when I went in the lounge a few days ago and saw blood all over the couch! He said that it didn't hurt him, but later he was limping and I had to desinfect and bandage his toes. They were also complaining last week about his bad language as an excuse for not having him in the unit, but M shas now topped talking about disgusting /offensive things. It took me only a few minutes to sit and talk to him to sort it out. Why couldn't they do that? There doesn't seem to be a perfect school for our children, is there, if it's not one thing it's another. Hope that J receives more protection from the other boy who's bullying him. If that happened to M he'd go completely paranoid. Take care <'> Curra

Elly, The last 2 days have been a bit better for him, which is mainly because he has been taking SATs in a separate room, so on Monday he's supposed to go back to his maintream lessons. He seems to be feeling more confident now because he thinks he did very well in the exams, so I'll wait and see what happens next week. They gave him a card to leave the lessons if he feels stressed and go to the unit , but it would be be for max 15 minutes. If that will help it's not clear, I' doubt it as his anxiety usually lasts for days! He was made to sign a "contract" that says that he will attend all his mainstream lessons and they sent me a copy to sign. I don't want to sign it because it contradicts the statement that says that the Unit will give provision and while I'm happy for him to go to mainstream lessons so that he learns at his level, I don't think I should be shooting my foot. I think it's all right for them to make a contract with him so that he has a structured plan of what's happening, but why should I sign it? M has BIG socialisation difficulties. He won't go to any groups, doesn't practise sports, has no friends and feels paranoid about other people like neighbours even family. Schools have always thought that the best way for him to learn social skills is to force him to be in groups and teams, but it has turned out to get worse as he grows. It's a dilemma for me whether it's better for him to keep trying in mainstream lessons or fight for provision in the unit (which would mean that the school would need an extra teacher just for him) or HE ( which is something I feel I have neither means nor enough confidence to do) Thanks for the links. I'll take a good look at them to get all the information I can. Take care <'> <'> Curra

Pub

elun <'> <'> <'> I'd go with the advices already given. I was once crashed by a Stagecoach bus and getting my car repaired wasn't very straightforward as I had to do some chasing. Go to your GP even if it doesn't hurt and talk to a lawyer. Hope you're feeling better. Take care CurraXX

Elly, You're right, my son is constantly struggling to "cope" with the social demands at school. It's the noise and the sensory overload, but mostly the feeling of being "exposed" and teased by others that cause him so much anxiety. What is most distressing for me is that the teachers in the Unit dont believe him and they fob me off all the time. Yesterday they told him off although he was almost in tears saying that he was stressed and the school were about to call me to pick him up (but they didn't because they realised he had a SAT) !! And this only 2 days after I had a meeting with the teacher, the Senco and my key worker in which it was agreed that he would get support in the unit for his anxiety. I'm feeling so down that I can't explain it in words!! It seems that this type of situation will always be part of M's life, no matter where he is or what he does. He has always been teased and bullied by other children but they haven't believed him at any of the schools where he has been at, it was always said that he was too sensitive to the "normal teasing of children". Now that he has a statement and is supposed to receive help in an ASD unit, they don't want him in the unit because he's too clever. As to the offensive language how come at home he stops himself immediately as soon as I tell him calmy that some words are not acceptable?It looks like he's not getting the support according to his statement, in which social skills and stress are the main focus. Or perhaps it's an excuse to get him out of the unit because they don't want to pay for another teacher out of their own budget. ?? Thanks for your info about HE. As you can see I have no idea about HE and I don't know how I could help him learn maths and chemistry, which were my weakest subjects unless I paid for a private tutor. It could in the long run be the best for M, but it's hard to say at the mo because he's very isolated and staying always at home might increase his fear of going out, but perhaps it could be the only solution in the long run. I'm so demoralised that I can't think of any positive outcome right now. But I try to keep smiling Thanks <'> Curra

Thanks for your replies and sympathy! <'> <'> <'> Your support means so much to me. I have felt for days cornered against a wall by the school because they keep complaining about M's bad behaviour and saying that he's "sneaky" and "manipulative" so they tend not to believe that he's stressed. M doesn't show his stress at school but at home and it's been so bad that he has been pulling chunks of hair from his head in despair and urging me to do something because he's afraid of the mainstream group. They don't believe him because he's an able student and is always calm when he's at school, he shows no sign of being anxious or distressed in front of the teachers. I also think that a school with an ASD unit should be more understanding but it seems that the real reason is that they don't have enough staff in the unit. There's one teacher for a group of boys in the unit who are learning at a lower level while M is at level 7 so they say that he's supposed to attend the mainstream lessons and that's it. While I agree with him learning at his level, I also think that he should be understood when he refuses to leave the unit and there should be a place in the unit for him. Or am I being unreasonable? Elly, my GP has just passed away I'm still in a state of shock. Who knows if our next GP will be so helpful... M can't identify a single trigger, he says it's just the "big group" and the "chaos" in his words. I haven't considered HE because I don't feel confident enough to prepare my son for his GCSEs and because he's not at all organised, so the risk would be too big. Kateball, I'm sorry that your son is also being punished for the same reason. It's a good thing that the school can deal with it, but I also hope that they are able to understand how much of it is not deliberate. Pearl, Thanks for your words of support. Our kids always seem to get into trouble due to their social difficulties, it's so distressing !! Take care All of you <'> Curra

lemon

I have such a phobia of spiders that I don't dare look at the link Curra

Hi I hope someone can help me with advice. It?s been a very difficult week with M refusing to go to mainstream lessons due to stress . The ASD unit teachers don't believe him and they say that he?s ?manipulative? and want him to go back to mainstream lessons and they are trying to force him by not letting him be in the unit if he refuses to go to his lessons and placing him in an ?exclusion room? with other children who have misbehaved. His stress at home means that he has bitten his toes to the point of bleeding and now they hurt and he's limping, he doesn't want to go to sleep at night, is terrified of the dark and has begun bedwettig again. He says all the time that his life is a misery. To top it all, M has started to use unacceptable language in the ASD unit which he says he does as a joke to make the other boys laugh, but the teacher and the TAs are very upset about it. I had a serious word with M this morning about not using offensive language at school and he seemed to understand and agree with me about it, but once he was there he forgot! His teachers also tell him off but he doesn't seem to take notice (or understand). It?s not swearing words that he uses but jokes of a sexual nature which only he finds funny. I am under enormous pressure because as it has happened before, his attempts to socialise (awkward, wrong and unacceptable attempts but it?s the only way that he thinks he will be accepted) not only fail but are seen by the school as bad behaviour and he?s being punished for it. What am I supposed to do? I can understand that the other boys in the unit don?t have to put up with his unacceptable conversation and if I were a parent of one of them I?d be concerned, but M didn?t learn that language here at home, he learned all that from his mainstream peers in the past. At that time when I expressed concern about what other boys were talking to him, I was told by the school that's the way boys are and it's normal. M forgets that he can?t use it in front of teachers. My impression is that the school don?t want to have him in the ASD unit although his statement says that the provision must come from there. Don?t know what to do really. Has anyone gone through something like this? Curra

Lucas, don't leave the forum! I enjoy reading your posts and I agree with you that ethics are not hypothetical. Discussing ethics can lead to a long debate as we are all entitled to our opinions and as individuals we will have different views which shows that morals also have a lot to do with individual judgement and not only with prevailing ideas in society. I'll try to make my point very simply because I like simplicity: If laws were passed to make paedophilia, murder, rape, domestic violence etc legal, these actions would still not be right and would not stop being wrong. Laws can only make things legal depending on political majorities but they can't change morals. It's just my opinion and I hope I'm not slammed for expressing a view. Curra

Jedi

He doesn't like PC games anymore, in fact he has very little in common with other boys of his age. He's just decided that he wants to go to London with me . It will be twice as expensive. Saving for it will help me to lose weigth Curra

Stone

Thanks Noetic and Frangi <'> <'> I keep smiling though it has been anything but easy these last days. M is still having awful meltdowns as result of changes in the ASD Unit (his teacher went away for a week and the TA isolated him because she said she couldn't manage him). I am not insisting on the social thing anymore but as I'm planning a holiday for the summer the questions are still there : should I go alone with him somewhere (he hates being with me), or book a group holiday (he hates socialising), or a group for special needs kids (he hates admitting that he has special needs) or staying at home (we'd both go completely mad) ? Other options such as spending time with another family, going abroad to visit family members or taking a tour to a city (he'd love to go to Rome) with him are out of the question in terms of not being able to finance them or because our council doesn't have any support for leisure or holidays for ASD children. Their idea of disability is limited to learning disabilities and total sensory impairments. I'm so tired of words and government schemes that in practice don't mean much, the only thing I see is that I'm getting poorer and my son's my son's needs and expenses increase as he gets older. I need to change my old car too because he doesn't walk or take public transport, but I get only low mobility so I'll have to see how to sort that one too on my own. There is very little help where I live (small coastal town) and this has contributed a lot to M's social isolation. Support groups are unstructured and noisy, just the opposite of what a child like M needs. At the moment Im looking into the possiblity of paying a befriender so that he can at least have someone to talk to apart from me, but I have no idea how I'm going to finance it. I have little hope of getting direct payments for this. I've been told that that's what the DLA is for! Well, I'm trying to keep my chin up and a keep smile a on my face, so rant over! I see that many parents are going through similar situations . Am trying as much as I can to step back, Fran, I know it's the best for him. But he also complains that his life is a misery because he has no friends, he's at this age when kids live in a constant contradiction and expect parents to sort their problems out with a magic wand. I wish I had one. I'm taking each day as it comes, right now I have to see what happened at school and what can be done to fix the mess... Curra XXX

Farm

Bard, He sounds a lot like my lad, except for not being bored. M is always so stressed and complains of boredom, but he doesn't want to go out or do anything. He refuses my attempts to help (sigh). Curra XX

JsMum, Your ideas are good M feels more comfortable only with grown ups and I think he would be fine in a group of adults, but it's not easy to find one that would accept a 13 year old. He has never been able to have good relationships with other children of any age. Unfortunately he doesn't like helping, it's a concept that doesn't exist in his dictionary. Curra

M is in an ASD Unit attached to a mainstream school but he attends mainstream lessons and he goes back to the unit for lunch and breaks. He also has 2 "free" hours of PE (which he doesn't do) doing homework or other stuff in the unit. Lately he has been very stressed at school, I've been called twice to pick him up because he was complaining of feeling unwell. When he returned to school he didn't want to go back to the mainstream lessons because he said he felt too insecure in big groups. He has been feeling rather paranoid about his peers and saying that he hates being in groups. He wants to stay at the Unit and not go back to the mainstream lessons at least until he feels safer. The school seemed to accept it but this week the head of the unit plus other staff are on a week's trip and only 2 TAs are left in the unit. M was therefore placed in a separate room to work alone all day because they couldn't cope with him and they also said that it's because he's "difficult". M doesn't have bad behaviour apart from saying things that he shouldn't such as sarcasm about other pupils which has been taken as bullying. The school informed me of this and they said that he wasn't being punished, but because they were short of staff this week, M would have to be alone in this room if he didn't want to go back to the mainstream lessons. His statement says clearly that his needs will be met by an enhanced provision for pupils with an autistic spectrum disorder attached to a mainstream, so why is he being taken out of the unit? It's obvious that he's being placed at a disadvantage compared to the other pupils in the unit. M says that he doesn't want to be alone in that room and he wants to be in the Unit, because he obviously needs to be there with other children and not in isolation. He says that one of the TAs is always trying to force him to do things and "doesn't like him". Mel, I've been thinking a lot about you! Our lads go through such similar situations! Just when I thought it was so good at the new school, there's this situation.! Is this an illegal exclusion or can the school place him in isolation because the remaining staff can't "cope" with him?? Curra

petty

Mel, it looks like your lad is going through the same as mine. I'm sorry that he's so unhappy and it's so hard for you. I also hope that they change as the get older. It seems that insisting too much makes matters worse. Perhaps if they see that they are not being pushed anymore they will eventually change their minds. It's worth a try, don't you think so? Good luck. Take care <'> <'> Curra

Thanks for replies <'> <'> Elefan, I'm sorry that your daughter is also isolating herself. It's hard to accept that it's their wish. M goes to mainstream school with an ASD unit. Lately he has been staying in the unit because he feels insecure in the big groups. I think that both situations, at home and school are related. The head of the unit is currently away and his TA doesn't want to supervise him because she cant cope with him, so she left him alone in a room all day today.! I spoke to the school and expressed my complete disagreement, I said that he's being excluded for no fault of his own. It's a contant struggle and there's never an easy solution to all this. Good luck to you too! Curra

So sorry Adamsmum <'> <'> <'> <'>

Thanks, Mumble! <'> I've read your reply a couple of times and I found your insight very helpful! Much of what you say is very similar to what M says or tries to say to me but he can't express it as well due to his age and he gets frustrated, angry and finally meltdowns. Your example of having suddenly to cope with double the number of people you are used to makes it very clear. To say that I would be feeling very uneasy if I had to is an understatement. He also seems to be in crisis because he has suddenly become more aware of his AS which he had always denied and maybe that is why he needs to feel safe from situations when he is with other kids. I have also not managed things very well because I have insisted too much that he joins a group and now it got to the point where he has said a categoric and definite *no* to any social contact. At school he doesn't want to leave the ASD unit although he was fine in the meainstream lesson until a week ago. I'll try to remember that feeling happy doesn't mean to be smiling all the time. I think that many NTs, me included tend to apply our own experiences and those of our closest relatives/friends when we try to understand others and I have to admit that I totally lack the experience/contact with teenagers who prefer to stay at home and not have any kind of *typical teeenage* fun , such as playing sports, going to the swimming pool, meeting friends etc. It also baffles me that M was very different when he was younger ie until he reached puberty, he loved going out, horseriding, exploring nature, going to museums and he wanted to make friends - but he was never able to really make friends. You're spot on in your last paragraph especially when you say " Your way (and I don't mean this badly) exposes his weaknesses, but he is at a very sensitive age where he wants (indeed in some ways because of the structures of education & society, needs),. Thanks for saying this to me. I see clearly what you mean. I hope that he accepts a youth worker if there's no social interaction. Hopefully I can find the right words to explain it to him without causing more opposition and meltdowns. Cheers Curra

Hi, It's been a difficult week, M has been very angry and abusive with me as usual, but I think I've become used to it. It's part of my daily bread. Last week after lots of coaxing , M finally agreed to go to another AS support group. I found the group very good, welcoming and supportive but he simply hated it. He sat alone and did nothing for 1 and 1/2 hrs, just like it's always been in previous support groups. When we got back home he exploded with anger and aggression and would not calm down even with Risperdal. Then yesterday a social worker came (after months of me asking SS for help it was a miracle!!) and she offered him a youth worker to talk and plan things to do. M as soon as he heard of it refused the help, he said simply he didn't want to talk to anyone or go to any youth groups. She asked him to think about it and she'll call me today or tomorrow for his decision but when she left there was another meltdown and this time he said very clearly that he *doesn't* want to be helped to go out, he said that he's *happy* staying at home all the time. Reasoning with him is completely pointless, he says that he has enough social skills and that he hates being with other young people, so I should stop trying to make him socialise. I can't express well what this means to me, not being allowed to help him is an awful feeling of sadness I respect his wishes and if that's what makes him happy, I will let him have his way. But I don't see him happy at all, he's so depressed and angry most of the time and his social skills are clearly not good, he only wants to believe that he can make friends and work well in teams. I don't think that we will ever get an offer of help like this again if he turns it down. Don't know really what to do. All other Aspie kids I know are attending support groups, have a friend or two and receive help. My gut feeling tells me that he should be helped to be with other young people, but I may be wrong. I'd love to hear from other parents' experiences and also how Aspies overcome insecurity and isolation later in life. Sorry for another depressing post. This is the only place where I can share my worries with people who understand. Curra

Hi, You obviously need a 3 bed house and it should be just a matter of presenting the right evidence. It might help if you enclose a letter from your GP or an assessment from social services. Also ask your housing association or Housing Dept. to send you a special needs form (if they have them in your council) and ask your GP or social worker to fill it out for you. Good luck!! Curra