Tez

Hi A has this problem as well. It means that all graph work becomes a major issue as well as shape and space work. His Maths teacher once wrote to me to say that she had spent an hour with him trying to help without success. It is possible to get a "scribe" for want of a better word to draw the diagrams for them in all SATs exams and GCSEs, although the child does need to direct them as to what to do, and you do need an EP or suitably qualified teacher's report to show the need. Given this is possible for exams, it should be possible for an LSA to help in class. Also try asking if an OT can devise a suitable program to help.

Well done J.

Well done you for staying strong and fighting the system. I hope that all your troubles are soon over and that you and your son get the help you need but unfortunately, judging from what you've written the fight continues. Thank you for sharing your experience. I agree that this is something that we all need to be aware of.

Thanks everyone for your comments. I know that there are several other people with teenage children who are debating whether or not to take their children out of school. We agonised over that decision long and hard, and eventually managed to achieve a half measue of A being signed off sick but remaining registered at the school. It was the best thing that we have ever done and I wish we'd done it sooner. At the age of 4 we gave the education system a bright, happy child, at the age of 13, they gave us back an adolescent who was barely recognisable as a human. I am proud of what we have achieved over the past year since A has been off school. I am proud of the way in which A has fought back. We're not there yet, but we have managed to regain our son. A year ago, he didn't have this sense of self or the ability to express his needs. Taking him out of the education system allowed him to once again take control of his life and to gain a sense of purpose. I think that A's ability to present his views in this manner, vindicates our decision. I hope it helps someone else to make difficult decisions.

Bullet I'd agree with the missing out on your turn bit. I've found that in over compensating for not interrupting this is what happens to me. Just goes to show how difficult it is to teach our children these skills.

A tells me that he knows that he mustn't interupt so he waits until he thinks that people have finished, but because he can't read non-verbal language, he takes general pauses for breath as a signal that that person has had their say. Whilst, it might sometimes seem like he's interrupting mid sentence that's only because that person has started again before his brain and voice have correlated, since he has a slight time delay. I think that his explanation pretty much tallys with my experience when I was younger and people used to tell me to wait, they hadn't finished talking.

A's Consultant prescribed Melatonin the first time that I asked her. I sheepishly told her that a friend had given me some to try him with and that it helped, but wasn't a miracle cure and she told me that she would be happy to prescribe, but that I was being too cautious in the dosage and he needed more and a combination of slow release and normal melatonin. You could try taking a couple of articles along with you to the doctor which explain about sleep disturbances in autism, my GP tells me that he knows virtually nothing about ASDs, it wasn't part of his training and he usually has to refer onwards or seek advice himself, and he's only young. I think also because melatonin isn't licensed for use by children GP's may need a Consultant to prescribe it intially. Some useful sites, which also contain suggestions that might help before you try the medication route:- Sleep disturbances and autism Melatonin the sleep master Keep kids healthy (This site also warns about the lack of real knowledge of melatonin and potential side effects)

PSH Feel free to let your DH read it. Hope it helps.

Hi I can only share my experiences here rather than offer advice and hope that it in some way helps. Firstly, AS groups for teenagers. We found out about an AS group for teenagers through the school's Deputy Head, but once we'd got the information Parent Partnership informed me that if they'd known it would have been of interest they had the details. You could also try asking your local NAS branch if they know of any. A did try attending this group but decided it was not for him. Many of the children also had ADHD and A found them too loud, boisterous and inattentive. The group leader has since phoned me and said that he plans to start another group for the quieter teenagers where they can sit and talk, play computer games and generally get to know each other. Aays that he might try it, but isn't overly fussed. More generally, I can tell you about both mine and A's experiences of friendship. I don't have a formal dx of AS but both my own GP and A's Consultant have told me that it is clear that A's autism originates from me and that if ever I want a referral for dx it will not be a problem. What I say is true for both of us. Whilst we were in school we were both desparate to fit in. We both had a few friends, and were both generally liked by most of the pupils, although A was badly bullied by the thugs, but we always felt alienated, isolated and apart. However, at that time we both wanted to keep trying. We both knew all the things you were supposed to do socially, we both knew what friendship was supposed to be about, but somehow it never seemed to truly happen for us, we never felt that bond or missed people when they weren't there; we were never desparate to share our news, although we would willingly do anything to help our friends. The more we tried, the more depressed and lonely we became. Despite, this A would insist that he wanted to remain in contact with his friends at school, but I sometimes think he was saying what he thought people wanted to hear. When I left school, and when A came out of school on health grounds, things changed. We were no longer faced with having to try and fit in and we actually found that whilst we are still lonely in a group of people because we don't feel involved or a part of it , even when to all intents and purposes we are, on our own in the house we are perfectly happy. We do not feel the need to be with other people and those dreadful feelings of isolation and alienation are no more. We have learnt to be happy with ourselves. We both use the internet to interact with people as and when we feel we want to and find this much easier and satisfying. A does still have contact with the few friends that he made at school, but to be honest he can take them or leave them. I can't tell you that this is how your daughter would feel, but it is our experience. Hope it helps.

Curra Fortunately A is ok about having an ASD. He was diagnosed late, at 12, and had already pretty much worked out that he was very different to others, and the doctors presented it in a very positive way to him. What he's not ok about is people trying to change him and make him "normal" and he's petrified he's going to be forced back into school, so whilst he hates writing or sharing his thoughts, he will do anything, to let people know that there's no way that he will go back to school willingly and that it's not in his best interests. Fortunately, it's written into his statement that he will be educated at home, but the LEA have chosen to inform us in their case statement that they are aiming for rapid reintegration, something that they had previously claimed to understand was not possible, and which is contrary to all expert advice.

I asked A to write up his views of what he wants from education to submit to SENDIST for his tribunal. Having read what he's written, I'm choked, I'm just so proud of him. I did share his thoughts of his prosopagnosia that he'd written about for an English assignment a few weeks ago with a few people off board, but I thought I'd share these views more generally. Just hope that the panel at SENDIST take them on board. A while ago I over heard my mum telling my dad that the government no longer wanted children to be pandas, they wanted them changed into sheep. I was a bit confused, why would the government want children changed into sheep? I know that I don't always understand non-literal language, so I did an internet search to see what she was talking about. The first thing I found suggested that the government wanted children to blindly follow what they were told and not to think. I was confused. Why would the government want that? Then I discovered the government's "Every child matters" policy and the government do want us to be sheep, but not in the way I thought, blindly following what we're told in a non-thinking way, but by Staying safe, being Healthy, Enjoying and achieving, achieving Economic wellbeing and making a Positive contribution. I want all of that, so I think the government have got their rhetoric about right. But I don't just want rhetoric; I really want all those things. I want to be safe. When I was in school I wasn't safe. The teachers tried to help me and keep me safe, but it just didn't happen. I'm safe now I'm at home and I don't want to be put in a situation where I don't feel safe again. Going to a different school wouldn't help. I want to stay at home and be educated. Most people don't understand how difficult it is for me to feel safe. I don't recognise faces, and this can be very scary. I have lots of shut downs outside of the house and I don't know what is happening around me and can't respond, this makes me feel anxious. I'm bullied a lot and nobody has been able to stop this. I'm happy now I'm at home that this no longer happens. I want to be healthy. Being at school made me ill. There were so many things that I just couldn't cope with. Things are much better now I'm being taught at home, but it's still very difficult when I go out of the house. I like the way that now I'm at home things are predictable. There are still things that hurt my ears, or cause me to shut down, but because I can generally predict what is going to happen, I cope much better and it doesn't make me so ill. I need predictability in most things. I don't like change, it causes too many problems. I still have problems with my sleep that are making me ill, but there is not much I can do about that. I think it would be better if I could have my lessons later in the day, but if the only way I can stay at home is to have them in the morning, then I'd rather be woken up or not have the lessons at all. I want to enjoy and achieve. I do enjoy learning, but there are some subjects that I hate. I hate English and I hate Maths, even though I'm good at it, but I realise that I have to learn these subjects, but I would like to learn about things that I'm really interested in like modelling and texturing on computers and history. But, I only want to learn these things if I can learn them from home, I don't want to have to go back to school to learn them. I never learnt anything at school, there was just too many other things to cope with like the smells and the noise. I used to have to ask my mum to help me when I got home and she would phone my friend P and ask to look at his books to see what I was supposed to be doing and then teach me, so it was like having to do twice as much work as everyone else. I've only ever learnt from my mum and cartoons. Now I'm older I can sometimes work it out from the internet and books myself, but teachers never seem to understand that they have to stop talking for me to learn. A few words are ok but they just talk and talk and after the first few words although I'm hearing, I'm not understanding what's being said and because I'm trying to follow what they're saying, I'm not seeing or thinking, so everything just becomes a blur. What I would really like to do, is to continue learning at home, taking A levels after my GCSEs and then an Open University degree or some other distant learning qualification. I know that I would never achieve this if I had to go back to school because I never learnt anything in the classroom, even when they tried teaching me one to one with S K, my work is much better now. My mum keeps telling me that people worry that I'm not getting any social interaction. I don't want social interaction. Social interaction worries me, it makes me feel isolated, it makes me feel odd, it makes me feel unsafe. I do have a few friends who I see several times a week, but I can only cope with these on a one to one basis, when they come round together I can't stand it and I usually try to find somewhere quiet by myself. I do like seeing these friends, but I don't miss them when they are on holiday or too busy with homework to come. Really, I just want someone to play games with, I don't want to chat, or share thoughts or experiences and I can always play chess with my internet friends. I didn't enjoy mixing with other children at school. I do not think I got any benefit from it, it merely made me ill. I hope that you won't make me mix with them again. I cannot see what it would achieve. I do want economic well being. I think that this means that I want to be rich or at least have enough money to do what I want and not have to worry about having enough money to pay the bills. To do this, I know that I'm going to have to get a job and work. I think I can do this if I have enough qualifications and if I choose what I do carefully. I couldn't do any ordinary job because the problems I have with my senses and my sleep wouldn't let me, but I think I could work from home as a computer consultant or maybe work somewhere in the desert as a geologist. I want to make a positive contribution. When I was diagnosed I was told to do an internet search for famous people with autism. There were many of my heroes, Bobby Fischer and Bill Gates for instance. I know that it is possible to make a positive contribution if I try, but I need to be allowed to do it in my way. I need people to understand that I don't work in the same way as other people, I don't want the same things as other people, I don't need the same things as other people, and that I think and act differently because my brain is wired differently. If you leave me alone to be me, I can make a positive contribution to the world. I needn't be a drain on the benefit system. I know that I couldn't go back into school or any other educational set up, I don't know how I managed to continue going for so long. I could never be a sheep that just follows others. Allow me to be different, allow me to be me, and maybe my unusual way of thinking and viewing the world will allow me to take the world forward in some way, like other famous autistics such as Einstein and Bill Gates.

Good luck Karen, will be thinking of you. When is the appointment?

Phasmid's and D'd mum's idea can be used at GCSE.

Hi LKS I understand this point very well. A is an extremely quiet child who rarely speaks and he finds these things really difficult. Even now when he's taught in the home and only has to present it to the teacher it causes major problems. Unfortunately, as the SENCO said speaking and listening is a major component of English GCSE, 20% of the marks come from this, and in other subjects they are also supposed to show group working and presentation skills. I think D's mum's and Phasmid's suggestions are good ones but also bear in mind that in a few years time your son will also be expected to answer questions directly on his presenation for his GCSE. Like you, I fail to understand why this has become so important. A had to do a speech on Romeo's motives for the killings of Tybalt and an analysis of his feelings after his death. You can imagine what fun we had with that one! What possible use will that be to him after school.

Hi Jill, If all the expert advice said that your son required autism specific schooling, then that is what your son should receive. That is not to say that the LEA will offer that, but should they not, then you would have a strong case for tribunal. The LEA have a duty to use money wisely, so they merely have to provide a school that meets your son's needs not the best school for your son. The school you requested might not offer value for money compared to an alternative autism specific school that could still meet his needs. Stay strong, from what you say mainstream isn't an option. <'> <'>

Thanks Phasmid I've taken advice and since the LEA are stating that they need flexibility in order to meet A's needs, a point that the panel could agree with, I've been advised to go right back to base and prove that the LEA are unreliable and do not have A's best interests to heart. So just as you are advising I''ve been told to submit additional evidence that the school unnecessarily delayed the statutory assessment processs, that they failed to stop the bullying despite letters from A's doctors stating that he was at risk, that once signed off school sick the LEA failed to provide home tuition within 15 working days and in fact only supplied it after 6 months when ordered to by the DfES after an official complaint, that they failed to meet the deadlines of the statutory assessment process without just cause, that they failed to put provision in place on finalisation of the statement and delayed a further two months and that even now what the LEA believe to be happening and what is happening are two different things. I think that the combined effect of all these things and your advice should hopefully show that the flexibility the LEA require will be in the interests of the system and not the child.

Hi Karen, I agree with all the above suggestions. The school should be acting to meet his needs without a dx but the reality is that it is hard to budge them. Would do as Zemanski suggests and phone the EP for advice. From personal experience, although the circumstances were a little different, the most important thing is to get the dx, then you have a club to beat them about the head with and they have something to focus their understanding of his problems on. Our GP cut a 18 month wait for dx down to 2 days (saw him on the Wednesday, he phoned the hospital and refused to move until A had an appointment for the Friday) when A was in crisis. They have far more clout than parents in moving the immovable mountain for that all important appointment. Would suggest that you see your GP and ask for help. Make a list of all problems not just school but home as well and stress the impact that it is having on you, your family and other children at school as well, not just your son. Good Luck and <'>

Well thank you all for yor comments and support. The email was sent off late last night and tagged. It was read before 9 o'clock this morning but so far have not had a response. I forwarded a copy to A's Consultant and she has phoned me to say that she will contact the LEA on my behalf and support me. I also forwarded a copy to my local councillor who is a governor at A's home school and who sits on the council's SEN committees. He's also going to speak to the LEA and ask some leading questions. IPSEA have advised me about other missing hours of e-learning in the statement and about the LEA's continued reference to reintegration into school which does not form part of the statement nor my appeal to SENDIST and is against the expert advice received at assessment. Zemanski Good Luck with arranging Coms's tuition. Had a problem arranging A's, took them 6 months to supply it. Eventually a formal complaint to the SEcretary of State for Education asking why my LEA was allowed to break the law did the trick. If necessary perhaps you could use that tack a bit earlier than I did.

Hi PSH, The DRC's phone number is 08457 622633. You just need to phone them and tell them what the problem is and ask to speak to an education adviser and they will then tell you if the DDA covers it or if it is merely an SEN matter. If it's covered by the DDA they will advise you on how to proceed.

Thanks Phasmid - good suggestion. It's added.

I posted earlier about the lies that my LEA wrote in their case statement to SENDIST. When I'd got over the shock I decided to try and use their lies against them. I also sought advice from the DRC about possible discrimination. It is my intention to send the following letter to the LEA. Before doing so I would be grateful for any comments on how to inprove or whether I am exposing myself to further difficulties. We have received a copy of your case statement from SENDIST. Having read it, there are a few matters that we feel cannot wait until September to be pursued and for which we feel immediate agreement needs to be reached between us. We note that you are unwilling to supply A's home tuition during the afternoon and have stated, ?The ultimate aim of provision for A is for him to access mainstream tuition where appropriate. In order to do this, A needs to be working towards working within standard school hours and planning his work/leisure/sleep patterns accordingly.? We have taken advice on this matter from the Disability Rights Commission, since A?s sleep pattern is not within his control and is part and parcel of his disability. We have been advised that in taking this stance you are in breach of the Disability Discrimination Act and are failing in your duty to make reasonable adjustments thereby placing A at a substantial disadvantage because he is too tired to learn. The DRC are prepared to assist us in taking this matter further should we not be able to reach agreement with you directly. To avoid a possible disability discrimination claim we would be grateful if you would make immediate arrangements for A to receive his home tuition in the afternoons and advise us accordingly. We further note from your submission that you believe A is receiving 5 hours of home tuition per week. Obviously, there has been an oversight and somebody has forgotten to arrange the additional 2 hours because in fact, A is only timetabled to receive 3 hours of tuition per week in the home, one hour per day, Monday, Tuesday and Wednesday. In view of this, we would be grateful if you would arrange for A to receive this additional tuition immediately so that he doesn?t further lose out on his entitlement. We have expressed the view that A?s curriculum is currently not broad enough and does not comply with the Educational Psychologist?s advice that he be allowed to pursue GCSEs in subjects that are of interest to him. You have indicated in your case statement that you are willing to extend A?s curriculum base dependent on his ability and willingness to engage in areas of study that you have suggested that you could deliver. A has already indicated that he wishes to study History and ICT, and indeed you will recall that we have asked you to provide tuition in these subjects on a number of occasions. It would seem appropriate to us to use these additional 2 hours of home tuition that you thought A was already receiving to start introducing these subjects into his curriculum. We would be grateful if you would make immediate arrangements to that effect. We are not sure where you gained the idea that A is only able to cope with a limited timetable. Certainly, we can find no reference to this in any of the expert advice. Whilst we would agree that A needs to structure his day differently to his peers, and to take regular breaks from learning, there is no medical nor psychological reason why A cannot pursue a full time table such as his peers are pursuing in school. However, there is a need to adapt the teaching methods and place of delivery to suit his preferred learning style and to take account of his significant sensory integration difficulties. A has demonstrated since his enrolment with XXXXvirtual academy that he is able to apply himself to work and produce extremely high standards of work to deadlines without it impacting upon his stress levels, provided that he is able to pace himself and learn in an environment that doesn?t cause him pain and discomfort. We think that the important lesson learnt, is that for A, it is not possible to combine learning with any possible need that professionals might feel he has for social integration. There are many areas of your case statement which indicate to us that you do not have a full understanding of the complexities of A?s case and other areas where you seem to be under the impression that A is receiving provision that he is not. It is for these very reasons that the statement needs to be more fully and clearly specified and quantified. We appreciate your desire for flexibility to enable adjustments to be made should they be necessary for A?s benefit. We thank you for your concern for our son?s welfare, but would point out that a paragraph that says that the provision can be reduced should medical or parental advice be that A isn?t coping, is all that is needed to ensure A?s welfare. Since you have indicated that you think that you are supplying in excess of our base line requirements we cannot see your problem in assimilating this quantification into the statement. You asked whether we would be prepared to go to mediation and we feel that this might provide a positive step forward. We would therefore be grateful if you would make immediate arrangements for this to take place.

Fiorelli Don't stop posting, I do it as well, I have a need to write things down to get it straight in my head. By all means get a note book, but post as well, you never know someone might just come up with somrthing you haven't thought about.

I think that you just have to go with your instincts and I suppose the determing factor will be whether you feel that Louis will be better off at EOTAS, the LEA's preferred school or home since even if you decide to appeal and go to tribunal, there's about a 6 month wait for the hearing. Remember also that at tribunal you will need to prove that the LEA's preferred school can't meet Louis' needs, not that there is a school that can better meet his needs. Don't envy you the decision, just go with what you feel is right or what Louis wants. Will be thinking about you and I'm not sick of hearing about it, that's what the forum is about. <'> <'>

Fiorelli, I'm so sorry that you're faced with a dilemma again. Did Louis' psychiatrist feel really strongly that it would be so detrimental to Louis to attend this school that you should fight this at all costs or did you get the impression that it's him taking umbrage at his professional advice being ignored? If you're really confused, why not give the psychiatrist a phone and discuss it further with him? Ultimately, only you can decide, but do it based on a full knowledge of what the psychiatrist thinks will be the consequences of the decision and how it will affect Louis. <'> <'> Hope it's sorted soon.

Thanks PSH and Minerva, I've got over the shock of the lies and really do feel much calmer. I think their endless lies might actually work in my favour since for the most part they are arguing that they are supplying in excess of my requirements and have no problem in supplying what I want, they just want to retain the flexibility to meet A's needs by not putting it in writing. I think that I can argue that since we are in agreement it's actually counterproductive not to put it a minimum agreed base line in writing because the provision that the LEA is so happy to provide is not happening because of their refusal to put responsibilities in writing means that nobody is taking responsibility for implementing it and there is no accountability or even awareness that it should be happening. The LEA's admirable regard for my son's welfare and desire not to overload him can be taken care of with a paragraph stating that if at any time the Medical or parental advice is that A can't cope with it, then provision can be reduced.