darky

I do feel invisible most of the time. I feel most people ignore me, don't take me seriously or feel I offer anything useful to say. On the other hand, I feel very highly self concious when I'm out. That's when I wish I really was invisible. I hate people I know seeing me when I'm out. Even close friends. I go out with the intention of shopping or whatever, not for a chat. I am hiding now.

I should just say J'smum, when I fought our SS over this issue, it was back in the days when they did argue as to what a disability was and they said the child had to have a substatial and long term need, I quoted the legal definition of a disability to them, and also quoted the legal definition of a substantial long term need, and they didn't have a leg to stand on and after 2 official complaints, and the threat of Disability rights commission, they caved. It seems that since then, they have changed the criteria, only, other people are not actually able to find out what that criteria is. Not even the social workers know!! Most people don't bother when they fall at the first hurdles, and they quickly step in and offer minimal help under locality or family support, and most people are satisfied with that. It's a shame though, because if they just fought that little bit more, it's not about being greedy, or taking support away from anyone else, but making sure everyone has the right to access the support they NEED!!

Thanks J'smum, I didn't want to hyjack your thread sorry about that. My girl has had a statement for over two years now, can you believe it?? It's been three years since we changed schools Where does the time go??? I definately think puberty is a big cause. Scary to think that way, especially with them being still so immature. Seems like we have similar issues at the moment. <'> Sally you are right about the spikey profiles. The consultant did mention that to us. I think the problem is that there is only so much funding in different pots, so they draw these tight lines to try and ensure the system is fair, but actually it's not and they don't allow for children who may have higher IQ's but still have very significant needs. What most people don't realise is, in social care, the social workers have much smaller budgets to play with in the disability teams, and actually more cases per social worker than family support. It's all very wrong, but parents will continue to fight to get the specific support they need, and they should do, because it's the only way that funding can be more apropriately distributed. I really hate the way they draw these lines. The system is wrong. There are big gaps in provision across the board, but if they just used some common sense and stopped wasting money on referals that are no good for families, and specifically targetted support packages for individuals instead of trying to pigeon hole, the funding could be better managed I'm sure. In our experience, joined up services are just not working!! After spending years on parent forums and getting no where, I gave up I'm ashamed to say, because they don't listen! Sorry, soap box time!

Yes we fought long and hard and got on the children's disability team with SS. We get great help and support from them, although now we just get direct payments and arrange our own respite, which is preferable to having no respite due to lack of sessional workers! The learning disabilities team is under health, to give advice to parents of children with learning disabilites. I know that it can be accessed via SS and health, we have been refered by both parties, but still wait. In the mean time, we struggle with obsessive compulsions that are getting worse, and accompaning meltdowns that are getting more severe. It's so much better to work with a child and parents, to ensure the right help is given before it escalates. I see car crash happening, and starting to feel helpless to be honest. Yes we have a statement and full time one to one. We have a fantastic TA who is managing well, but we are now starting to get phone calls to say meltdowns are happening, and I am just so scared that it won't be long before the exclusions start. They have been good so far, really understanding, but their hands will be tied if my girl lashes out to someone else instead of herself, or smashes a computer up. She is wound up like a coiled spring and goes off like a rocket over the slightest thing. So much of it is over really simple things, but the mood changes really quick. She is 10 now, and I'm pretty sure this is all coming from a mixture of the begining of puberty, the fact that she has to have full time one to one, because I think she is begining to see the differences between her and others, and I think she gets confused and frustrated. It's frustrating for me as well, because I work so hard to parent her as a child, and as a child with ASD. I know most of the strategies, all about anger management, preventing meltdowns and consequences. I have a good relationship with the school, and we impliment techniques together to ensure consistancy, but there is something missing, something we need to tweak or do differently to make sure that she doesn't cross over the boundries and go too far. I've seen it all too often, and it frightens me to death I can assure you. I don't want her excluded, and I don't want her to become a victim because of her behaviour, although I am feeling it's getting too late to avoid that now. She is an adorable little girl, who is loving, kind and well mannered, everyone says it, and I think her personality is what has prevented her from getting into more trouble, because they know she's not naughty, just very angry and frustrated at the moment.

I wish you luck <'> I know this has been an issue that has been hounding you for some time. It's not just SS though, we have been on a waiting list to see the learning disabilities team for a year hoping to get their input. It seems there may be the same blanket policy operating there. The consultant wonders if that is why we are still waiting, because the cognitive assement results are too high to access the service. There is another team, but that is centered around EBD and family therapy. I don't like these pigeon holes at all. The thing is, the level of expertise of the LDT is what we need to tap into. The other team is not appropriate at all. Even the consultant said that!

That characteristic sounds very much like my eldest son at that age. There were always concerns regarding his developmental progress, but acedemically he was always bright, so produced nothing but red herrings. (in grammar school now) It wasn't until he was 12 that finally we managed to get him assessed, he was diagnosed with Dyspraxia, and whilst he had characteristics of an ASD, they concluded there were not enough to dx him with ASD. One thing that stood out like a sore thumb was his reading age, which was assessed at 18, but his comprehension was 10 or something. Can't remember exactly, but it was a lot lower than his reading age. His senior school disagreed with the diagnosis though, which I was surprised. This is what they wrote: I was rather puzzled by the negative diagnosis for Aspergers, as the individual reports seemed to identify so many diagnostic features, and there was little evidence regarding the alleged normal social interaction aspect other than G's own views. I suspect that one factor in the decision is that fact that G is not presenting a problem behaviourally, and because he is so bright he is developing some of his own strategies to compensate for his difficulties which skews the scoring on the questionaires. My guidance to teaching staff will still indicate that G has many of the attributes associated with Asperger syndrome, and I will continue to get the Educational Psychologist to work with him regarding anger management so the absence of a formal diagnosis will have no impact on the support we give him. It's always difficult when a child is so young. It's also difficult when a child is bright, because even with all the reseach and diagnosis teqniques, it seems to produce a lot of problems if a child is bright, and/or does not demonstrate behaviour difficulties. If a child is bright with behaviour difficulties, at such a young age, in my experience, has delayed things further, because there seems to be a tendancy to asume the behaviour difficulties are due to being bright, and certainly with our case, with all of my children, they have wanted to wait to see if they mature and settle down. It was a long road for all my children's diagnosis. My youngest at the age of three was first seen, and deemed normal but naughty. She got a dx of PDD-NOS, ADHD and Dyspraxia at 6yrs old after years of hell. My youngest son was placid, presented with no behaviour problems in school, but was dx with Asperger Syndrome and Dyslexia, and Anxiety disorder at the age of 11. His IQ was assessed at 72, and was at least 4 years behind at school, but not one of his difficulties were picked up at school at all. Then my eldest son, un dx til he was 12. Good luck with it all. It is a long road, but you know your child best. I always say to parents, go with your gut instincts, they are not often wrong. <'>

Just to say that because this topic has been brought up again, I would like to say that I have killer PMT. I take star flower oil for mine which has a higher concentration of GLA in it than oil of eve primrose. It may help with menapause as well as PMT and is also good for circulation and brilliant for skin conditions like psoriasis and eczema. It can be pricey, so it's worth shopping around. Some supermarkets sell it for around £1.50 for 30 500mg (2 a day) tablets, where as some health food shops sell it for £10 for 30 1000mg (1 a day) tablets claiming high strength. Yes it is high strength, but clearly the supermarket ones are cheaper, even at 2 a day!

In our case we have experienced good and bad. Thankfully things are good at the moment. I have to admit that, in our case I think that there was a communication barrier at first. Obviously I was desperate to get help for my children, and I would have clambered over any man, woman or beast to get it. Looking back, I feel that there were problems which were caused by my desperation and use of communication which was often abrupt and unsympathetic. I wouldn't say I was hostile, but kept on and on and on complaining all the time when things weren't done or I felt I wasn't being listened to. My desperation I think, made me miss the things they may have been doing right. It made me feel very them and us. I don't think it was all unjustified, but as I have become more educated on SEN issues, I am much more polite. I am much calmer in my attitude towards the people working with my children, and I have found that praise for them when things are going well has helped. I sit back and look at situations now instead of jumping on the defensive, and I pick the arguments carefully. My children are happy and that's the main thing, and actually this year the school staff have bent over backwards to help. Of course it does make a big difference who teaches them and who supports them. We had one TA once that I just clashed with, as she wouldn't listen to anything I had to say then would be scratching her head as to why she was having problems. She thought going on the most courses made her an expert in my daughter and didn't need to listen at all. Ho hum! Things had to change for me though as it was affecting my children, especially my daughter. She may be ASD but she is not silly. She began mimicking me in a sense by stamping her feet and refusing to do anything and telling the staff she would tell me and I would sort them out. I was horrifed when the school told me that! Regardless of whether I disagreed with the school, she did pick up on it and it did affect her. I can admit that now! Working with the school and having a good relationship with them, even if I don't agree with them has been beneficial to my children. At the end of the day, I can be wrong, the school can be wrong, but I have found that now we have a good school and good relationship most of the time, they are much more willing to listen and compromise.

Sometimes I walk on my tiptoes, not because I get pain, but because I like it and it feels more comfy than walking flat footed (I don't do it in public though, or I don't think I do) My daughter does it to sometimes. I get restless legs, for me, I think it's sensory. I think it is for my daughter as well. Just a thought! If it's been checked over, it should be ok. If your not happy, seek a second opinion maybe, or have you asked why he does it? He is quite young though isn't he?

Oh this is tricky indeed. My son is almost 13 diagnosed Asperger's and Dyslexia. He has had significant issues with anxiety. He also really struggles with verbal communication. That's caused us a lot of bother. Anyway, he has just started seniors (we don't go up til year 8 here) He has a statement. I was petrified he was going to lose his statement because of the progress he made in year 7. However, I was relieved he kept it. It's weird. Out of all mine, I was convinced he would struggle the most with the transition, but bizzarely, he has managed exceptionally well. He does not have "dedicated" support, but is funded for 15 hours per week. They do not have set TA's at his school, but subject TA's that are available in the classrooms should he need help. So far, he has had mentor meetings to ensure he is settling in, and a TA helps him by writing things in his diary to help him organise, but other than that, he doesn't seem to want or need the help. He goes to school very happy, he comes home happy. He seems very enthusiastic and willing. That is actually a first for him, no joke. So for now I am happy that he is not struggling, so I will go with the flow, knowing that the support is there should he need it. He has been at the school for two weeks, and I have not even had to speak to the school at all. YET. It wasn't always like that though. Who knows, it could quite easily turn again, but my son was very much how you describe. Did not want to stand out in class and fitted the "passive pretending to be normal" group. I knew he wasn't happy because of the meltdowns at home that kicked off as soon as he came out of class. There was a huge amount of anxiety about it. He even started messing himself. We found with our son that he just wanted to blend in with everyone else. I think he knew he was different, but was actually terrified of being singled out because that would reveal his differences. He just didn't want to be noticed. He needed a lot of patience actually and gentle help without interfering too much. I have to say the school were very good with him. The TA would check on him to see if he was ok, and offer him help in a discrete way. It's always difficult, because he is quite behind his peers, and needs the help because the consequence of not getting help, just causes even more anxiety and frustration as well. It's really difficult because trying to get a school to understand the Jekyl and Hyde was nigh on impossible, but when he went to a different school, it made all the difference and his behavior at home in response to the anxiety at school was dealt with and deemed every bit as important as a child that is disruptive at school, because if you think about it, it can amount to the same thing. My eldest son was struggling as well, (15) but again, didn't want to ask for help. He is in Grammar school, and was failing his Maths modules. I spoke to the school, they were fantastic. He gets to see a specialist teacher, only about once a month who goes through his concerns with him and they talk through the best way round the problems. He felt intimidated by his Maths teacher, and he was convinced this teacher hated him, but it boiled down to the fact that he was just struggling in Maths, but was scared to ask for help. So the specialist teacher talked to his Maths teacher, and Gaz just needs to turn his book over and his teacher comes to him without him having to ask. The teacher also agreed not to single Gaz out by asking him questions in class. Since then, he has retaken his Maths Modules and has got an A in one paper and a C in another. Something so simple has made a big difference. Funny now, my son doesn't think this teacher hates him anymore. After all this waffle, my point is, there is a lot that can be done to help without interfering, and the results can be really impressive. I would say respect Ben's decisions, but perhaps have a quiet word with the school and see if there are some ways they can give Ben the help he needs, but by being descrete. It is really hard. It's hard to let go a little because we all know of consequences of unhappy anxious children, but then allowing them some freedom of choice. A good school would have seen this situation over and over again no doubt, and a good school will be willing to help Ben and you as well. Good luck with it. I know how hard it is!! <'>

My 15 yr old was pretty much how you describe. He started out with an interest in Thomas the Tank engine. He knew every engine by colour and number before he was 3. I remember his 3rd Christmas well because we managed to get him a whole shoe box of second hand engines, which he unwrapped carefully, got each one out the box, went "Edward, number two, blue" and went right through the box getting them out, naming them and lining them up. In the car he would be able to point out shops and read the signs. His party trick was name where the carrier bag comes from When he started school he read and read and read. He loved books and reading. He was reading Harry Potter books when he was about 7. Anyway, he is at Grammar school and doing well. He was assessed by the speech and language at the age of 12 and whilst his reading age was 18+ the comprehension (understanding) of what he was reading was miles behind. It did shock us a bit! It's that which would be my thoughts with your son. Your son is still really young so more complicated books usually have older themes, which may be more difficult for him to understand. Has his comprehension been tested?? That would give you a good idea of where he is at regarding reading AND understanding what he's read. I understand about the mini adult bit as well. I have two mini adults here and whilst it can be cute, it is easy to forget they are still so young. We have had problems with our daughter more so, as she has really struggled with the adult/child concept. We have had to work so hard to establish boundries in relationships across the board. It's easy to see how things can get out of hand, even if it's not happening at the time. (mine are older than yours, so I have seen some consequences) As for giving a bit more leeway, I personally think use common sense. I have three totally different children with different needs. My eldest son has always been sensible and a good lad, so I have let him do more than I do with my youngest son, and as for my daughter, no way I can trust her at all. When it comes to activities, it's usually my daughter that wants to do things she isn't either big enough or old enough. The problem is that because my boys can do things and she can't, she thinks it's unfair, like being punished, but I do think it's important for her to learn to accept that there are things her brothers can do but she can't. We try to stay matter of fact about it, kind of like, well that's life, because life is full of rules and restrictions no matter how old. It's a tough job. Gifted or very able children have it hard because it's easy to forget how immature they are. Good luck with everything!

Wow thanks so much for that. Especially the bit in the begining, I could see so much of my little girl Sometimes, it is hard watching her be rejected by her peers. It's heartbreaking actually. She is so eager to please, but her inflexability makes things turn negative really quickly and very frequently. It was a brilliant clip though, very comforting. Sometimes just a reminder of the diagnosis and what it means, can make the day seem a little easier. I know what I mean!

Well done. I am so pleased. <'>

Ahh but you can use cooking as a maths lesson! Weighing, measuring quantities etc, it's all maths. If she is reading a recipe she is following instrcutions and reading as well. There are many ways of swinging a cat as the saying goes! Glad you had a better afternoon. <'>

I think that is a fabulous idea

That is good news. Little steps add up to big things. Sometimes just a change in tactics can be rewarding. You gave her a response that wasn't expected. It will be interesting to hear how the rest of the day goes. Good luck <'>

Following on from some of the points Bid makes, I agree with what she says about simplifying things. We have a similar problem with our daughter and youngest son, in that they both have a good use of language but their understanding is very poor. This is where I personally feel that higher functioning children are at the biggest disadvantage because it's hard to tell what they have understood. You describe how your daughter has wandered off without telling you, comes back in totally oblivious to how that action has impacted on you. This, in my experience is common, especially in ASD because they find it difficult to imagine or even think about how their action impacts on another person, unless it was done with intent. I know in the past I have thought why did she do that? It upsets me so much! Why doesn't she think how I feel? There layed the problem because for a long time I took the things she did personal, when actually, it wasn't. To get round this problem, we started with simple things to get her to understand simply how actions have consequences. Not always negative consequences I might add. We started with a light switch. Sounds daft I know. Asked her to press the switch and asked her what happened. She said, the light came on. So I said, what turned the light on, she said the switch, I said who pressed the switch? She said, I did. Pretty basic and obvious, but a simple way we used to get her starting to understand how her actions lead to consequences. As for the prefering to email the friend rather than being on the phone. I totally understand that. I find it very hard to do small talk. I find it difficult to start a conversation and end one as well. Thank goodness for the internet. It might be that your daughter finds conversation difficult, and finds it easier to say what she has to say in writing. That's not a bad thing, because without knowing it she will be writing, spelling reading etc, which, when you think about it, is more constructive than verbal communication. My boys love talking to their friends online. It's all socialising. Not what some would consider socialising, but I think that it simplifies socialising for them. Choosing arguments carefully is important. Like some of the other posters say, try not to look at what has been achieved, but the effort that has been put in. My daughter is one heck of a messy easter. I gave up a long time ago worrying about the mess she makes, but focused on what she was eating and the fact she was eating it. She sits to the table, I say, bottom on chair, feet on the floor and that's it. I can clean the mess up, but being drawn into a battle about the mess would not have been constructive. At the start I think you should take little steps and reward the fact your daughter has picked up a book rather than rewarding her after she has read it. I have also found it's much more constructive to say first I would like you to do xyz, then you can have xyz reward, in preference to saying if you do not do xyz you will go without xyz reward. Sometimes I have felt it helpful to say how much do you think you can do out of this task, then tailor the reward. We have found that using a timer can help, so they can actually visualise how long something is going to take. At first this was difficult because with our daughter she became focused on the timer running out rather than the task, but after a while she learnt that she was in control of what happened, and she learnt to ignore the timer but for only it's purpose! I hope that all this information is not confusing you. You can see just how many people have experienced these difficulties due to the responses. You are not alone. I hope that helps you to know that as well. <'>

Just a thought. "obsessions" or interests can be a blessing and can be a good means to opening up communication. What about using her interests in developing some ground rules? Like the visual timetable idea. You could maybe start of by showing an interest in her obsession, playing it down, getting to her to answer questions on it and allowing her to put you right when you get a fact wrong. This could open up some communication and give you common ground. In my experience, some children with ASD can get cross when you get a fact wrong and their reaction can be suprising, but I have found if I stay calm and ignore it and don't take it personally, and say something like, oh I'm silly for not knowing that, I'm glad you helped me understand, can really help. Perhaps after a while you could get some Twilight pictures and work with her to design a timetable and ask her what she thinks could help her? It is important that she doesn't see it as a negative thing, or critisism for what she is not able to do, but something that will help her with things she can do. The obsessions or interests are important to them, in most cases to the exclusion of most other things, so although it can be difficult, it can be a blessing because the interests can be the route to finding that common ground. I think it's going to take a while to be able to put things like this in place as your daughter seems unwilling to work with you or anyone else at the moment, but with little steps, patience and occassional going backwards, I think it is possible to make progress. In my opinion, I think your daughter just has learnt a response because it's the only response that gives a predictable reaction for her that enables her to know what is going to happen next. In that respect I can understand why people say her reactions are born out of fear, and that's the fear of the unknown. Not a critisism as all, but I think you need to wipe the slate clean and go back to basics and try things you have already tried, but with a slightly different angle to allow you, your daughter and the school to establish the trust in each other again. It is always tempting to think, oh he/she won't do that, because of a past reaction, but sometimes results can be surprising. I hope that makes sense? <'>

Baddad, thank you for helping me to simplify my post. I do waffle sometimes and struggle to get to the point! In a nutshell, I mean that sometimes, I know myself that being confused with every bit of information that has been bombarded at me, as well as a diagnosis I knew nothing about at the time, left me not knowing what to do for the best. Quite often I would get advice I didn't want to hear, but at the same time it made me think. I certainly don't think people write things to upset or offend people. Sometimes, all I needed to hear was that is was ok to see her as a child and not one with a diagnosis or difficulties and actually it's ok. I remember not long after the diagnosis I felt totally overwhelmed trying to figure out what behaviour fell under what diagnosis and the symptoms because the strategies and advice I was given was different. So I was like, is this sensory due to the ASD, or hyperactivity of ADHD, the impulsivity of ADHD or meltdown in ASD? My brain was mush! It took one heck of a long time to realise that actually the diagnosis doesn't spell out what my child needs. Experience helps. Getting a diagnosis helps although not in the begining because it's kind of like being thrown in the middle of spaggetti junction with no map. I hope I havn't come across patronising. I would never underestimate how difficult it is for any parent. We have had very dark days and at times I never thought I would get through them. Forums like this have helped loads. I would never forget how hard it can be, because some days it still is, but I would like to think that people could be honest and give me advice, sometimes comforting me that it's ok, sometimes giving me new strategies, and sometimes telling me what I don't want to hear or didn't expect to. Group hug <'>

I agree with you Bid. All we can ever do is go on our own experiences, and you are right that timing of diagnosis can have a bearing as well. I would never suggest my advice was right, but simply what worked for me as I'm sure is the case for most people, as is the point of a forum. All we ever get is the information we are given from one point of view, so all any of us can do is try to advise best we can on what little information we have. I tend to use the word tantrum, not necessarilly in the context of "toddler tantrum" but usually to describe a response to anger or frustration, or to get own way, heck, sometimes I tantrum! Sometimes I meltdown, I know the difference in myself. Not in a horrible way, I know what I mean! My 10 year old, 15 year old, my 12 yr old, can all tantrum, they are all ASD. Hope that makes sense? I have to say that whilst we we fortunate that our daughter had an earlier diagnosis, our other two didn't and out of the three, my daughter has been the most challenging, partly because she does have complex needs with ADHD in the mix, fair enough, but partly because since diagnosis we have been bombarded with tests, results, advice and opinions that didn't know what to do with, which not only left us confused, but feeling guilty and wanting to wrap her in cotton wool as well, frightened of doing the wrong thing. For at least 2 years I can honestly say hand on heart I forgot she was a little girl, everything became the diagnosis, including the behaviour. I think that is a pretty normal parent response in the circumstances. We became prisoners in our own home though, where the fears and anxiety dictated everything. She was miserable, and so were we. It was heartbreaking to even think about exposing her to her fears, and frightening to ignore her threats, and exausting dealing with tantrums AND meltdowns, but we had to do something because she wasn't going to have any chance of a happy life if things stayed the way they were, not to mention the effect it was having on our other two children who all had their own needs, not just as children with ASD's but because they are children. My boys have had their difficulties, but because of my daughter's challenging risky behaviour, they have not had the attention to their difficulties my daughter has. Quite often I will be reminded of why they have a diagnosis, we hit problems and I have to deal with it, but it does not hold us back as a family, and I think that was probably because they were diagnosed much later, and parented as children and not parenting ASD. Only time will tell if we have done right! It's hard being a parent. It's a learning curve and we only get one go at it. I know I have made plenty of mistakes, and still do. Parenting children with different needs is even harder. It's hard to get advice because all children, family dynamics, attitudes and expectations are all different. If people can give advice from their own experiences, there may just be one bit of information that will help, it might hinder as well, but we don't know until we try, but it's ok to try. I know it sounds stupid, but one day someone said to me how is your little girl? I felt myself speaking about her like I was listing her symptoms and I suddenly felt so bad I forgot she was a child. It was lightbulb moment for me, and whilst I do understand her difficulties and support her, I have changed how I see her. Don't get me wrong, it has been nothing like chucking her in the deep end of a swimming pool and expecting her to swim, but a very gradual change in how we do things. 2 steps forward, one step back, but getting there. I wouldn't judge anyone. It's a tough job!

I totally understand how difficult a situation this can be. I have been there a number of times, especially with my daughter. She is 10 now and we are slowly getting there but it has been hard work, very hard work and it's taken a long time. In our house we have had to be on top of everything, and be aware of even the slightest thing that could be manipulative or controlling behaviour because if we give her an inch she takes more than a mile and we go backwards. We have had to be very consistant and nip every single episode of controlling behaviour in the bud, and it's taken an extraordinary amount of patience. We don't tend to look at the behaviour at the time, or what is threatened but the impact of allowing the beahviour to control in the future because the threats are pretty much just that, threats and it does escalate if it's not dealt with. The behaviour did get worse for a while before it got better, and there were days when it was tempting to give in for a quiet life or in fear, but I have to say I am glad we have stood firm on things because it's paying off now. Some people think I can seem harsh or strict, but when you have a child that raises the bar every time, we didn't have a choice. Off the top of my head I can give you examples. My girl used to start off by saying she needed the loo to get out of lessons. When that didn't work, she started digging at her skin because it didn't take long for her to work out that a spot of blood took her out of lessons to get cleaned up and a plaster, but then the plaster would distract her and that then became another avoidence/controlling behaviour. The school said they had no choice but to deal with it so we hit a brick wall and she knew it. So in the end we gave the school spray plaster, job done. She is dealt with quickly with no fuss, so no "reward" for this type of behaviour. Some people might argue that maybe there was a reason she wanted out of lessons, and that may have been the case, but in all honesty I think it was just testing the boundries for her to come up with something to get her out. So what happens now is, she has small tasks she has to complete that are written down for her in a timetable she ticks as she goes, and when she has completed the tasks, she is then taken out the class for a break, and hey presto, we have prevented and cured the problem. Another thing she used to do was wake up and find the loudest toy she could bash to wake the whole house up. As soon as she wakes I am up anyway, but no way was I going to make her think that her noisy toy bashing was the reason I was up, so I used to come downstairs and make her wait until she stopped bashing, but that made her tantrum. Tough! It took her a while to figure it out, she would throw things down the stairs, scream, say she was going to kill herself and me, but I stayed calm, ignored it, just calmly reminded her that once she was quiet she could come downstairs, and it took weeks and weeks for her to realise she was the one dictating her own fate and the sooner she calmed down and behaved the sooner she was able to come downstairs. Now all I have to say is you are, you will, you are going to, this is what's going to happen, she might grump for a short time, that's fine, we all grump, she accepts it in the end. It is very difficult to learn what is extremely difficult for them, and what is just child like behaviour. Children who have ASD's do have many difficulties that make it hard for them to do certain things, but at the same time, there are those children who will use the difficulties they have to play up. It's a fine line of course and occassionally mistakes happen and as parents we have to be careful that we don't turn our feelings and responses into guilt, because that is a powerful weapon in any child's hands! In my experience there has been a clear difference between what is fear and what is controlling. When my daughter is afraid, it's sudden, it's wild, it's panic, it's violence but impulsive. When she is controlling, I can see her tick, it's thought out and it's a tantrum, there is a big difference. I have also found that with controlling behaviour the response is over the top and dramatic, and the more it's not nipped in the budd, the more extreme the response. One day saying she will run away, the next, run away I hate you, the next, run away and kill myself, the next, kill me then run away and kill myself, does that make sense? We respect that our daughter has fears, anxieties and difficulties, but we have found the best way round that is to teach her and allow her to experience some fear and work out for herself how she can help herself. We have found that in doing that, she is not responding in such explosive ways. She will ask questions, we talk situations through with her, but we keep it simple and matter of fact. She will say things like, it might be noisy, and I say, yes it will be, but you can cover your ears, and now she says, yes I can can't I, or perhaps I could wear my hood up? I learnt over time, that often my response, no matter how subtle had a major impact on how she dealt with things. I stay calm and matter of fact, and most of the time that is how she is because she has learnt now she can't avoid everything and she will always have to do things she doesn't like doing, but she has a choice how she handles it. She has more confidence now, and there are times when things go to meltdown, but it's rarer. In the same respect, because we don't allow her behaviour or responses to dictate what happens next, she is a lot happier. I hope that helps. It's very very hard work. I do sympathise, we have been there. There is no overnight cure, it takes a long time to get over this problem.

Personally I wouldn't worry about being a gushing parent! All too often schools and staff are complained about when things go wrong, but very little is noted when they do well, so I expect they will be only too happy to hear the praise. What I do is, put little comments in the home school book. Not OTT but thanking them for their time, or understanding in a situation. I believe strongly in a balance. If I disagree with something I don't take it personally, but I will speak out, but I will also balance it out and say when they do something right. At the end of the last term, I sent a card to my daughter's TA and teacher and simply said thank you for making a positive difference in my daughters school life. They were very happy to hear it.

I have mixed views on this. I can't see how it can be an acurate report because there are so many different needs, statements and non statements and like someone else said, a lot of the time pupils usually only get the support "they need" when they have fallen behind significantly. So it would be interesting to read more about the study. My girl has full time one to one, and it's been good for her, but only better since having a fantastic TA. The problem is, that although it has helped my girl to stay focused and on task, she relies heavily on adults for even the basic things. So in that respect, the support has held her back in her development, but acedemic has definately improved. I don't like studies like this, because in our pedantic country the authorities will try to reduce support because they have the "evidence" There are already enough children without the support they need. It is concerning in my opinion.

We got my sons on the last week. He goes to seniors in September. We had annual review about 6 weeks ago and the review resembled nothing like the report!! The report was quite upsetting actually, but it's too late to act on it. I shall remember that for annual review next year that's for sure!!

It looks interesting. I shall reserve judgement until I've seen it.