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Hello everyone, I have put this in the search engine on this site and came back with nothing so i wanted to share this with you and see if this could be of interest to anyone. This event holds workshops and clinics where you can get information on welfare rights, special educuational needs advice and employment rights on a one to one basis. One ticket one visit first come first serve basis they say though, so i thought i would mention this. Clinics run i think on a half hour basis and its FREE. They even have OT advice. Has anyone been before ?. This is the second time its been held at excel. (i have got a feeling that people have booked and i am the last to know) Best wishes sarni

Hello everyone, hope people have a good break this holiday. (The following piece is a bit long but relevant and my question is in the last paragraph). Well, our k (aged 9 now) has finally given in, since his attendance has improved a little and timekeeping, his behaviour over the last two weeks has been disruptive (it took that long for the teacher to tell me, wow and why ?) He is running around the class going under tables and generally disrupting the other kids and not paying attention and the teacher said she cannot have him in the class behaving like that. He is not doing his work and again the other day he did not want to go in because he was afraid of what he calls big writing (just means short stories and paragraphs). It hurts his hand and he finds it a struggle. I asked him was he receiving help (this school has recently failed an ofsted report and they have brought in special measures). The class has had a new assistant who was giving our k help and he said she was not helping him anymore. Not sure who to believe anymore as last week he supposedly had a good day as he did work with an assistant and did really good work so i was told by another teacher when i came to collect him (how would she know ?). Anyway, last week our k went all anxious again and i got annoyed as a teacher (who knows our ks difficulties about changing for PE) mentioned that it was sports relief day and they WERE ALL DRESSING UP and taking part and that he should bring his PE kit. They were definatley doing it to annoy me as they know they should have made our k do something else instead,. He does not trust them now as they keep trying to get him to do this stuff without supporting him. Stupid or what ,just sheer ignorance?. Our ks class teacher says he can do the work but doesn't do it. K did not go in on sports relief day so thats another day down to school refusal and now i have a meeting with the Edcuation welfare officer who wants to know about his 71 percent attendance record. As it quite poor and they want 95 percent. Can miracles happen ?. Who knows ?. So now our k is at last exhibiting disruptive behaviour at school and i am told that I SHOULD DO SOMETHING ABOUT IT, like what exactly, as i am not allowed to go on school trips with him (even though i have offered) and obviously not allowed in the classroom. Having said all of this i think maybe his class teacher is on my side as she is (and from one other teacher) mentioning about his difficulties in the first place like how he does not concentrate and in the back of my mind i am thinking is it her way of helping.(if she mentions this at the IEP after Easter it could help k get more support) I am undecided. Appartently ks teacher is quite strict and she has a awkward class this year (the school put upon her). What do i say now to the Edcuational Welfare about his days off to her, how do i handle this ? any advice . I have a letter from the doctors saying how k gets sick or anxious about school. I cannot keep going to the doctors everytime k is off when there is a school trip or an event day. I have tried looking on IPSEAs site about school refusal but it relates to exclusion from school not the other way round and i think there is some discrimination going on here as they have not made realistic reasonable adjustments (apart from letting him use the adult toilet) i have looked into the law briefly and its my duty to have him educated not necessarily at school. If anyone has any advice on how to handle EWOs or any experience in dealing with EWOs i would be grateful for your insight. Many thanks for reading. with regards sarni.

Hello everyone, Can anyone help. Our k is refusing to attend school again on friday (dressing up day world book day come as a character) The school know on these days in particular he gives grief and becomes violent and refuses to go in. The SENCO has tried to explain to our k that he does not have to dress up and spoke to k in front of me. K refused to talk to him and just kept his head down. The SENCO has said that k was already talking about not coming in and its only Tuesday. Now k has had some time off due to his bowel problems that combined with his other problems this has raised concerns about his attendence at school. The SENCO has given me warning about the Education Welfare wanting to speak to me about his reasons for not attending as its been a little high. Its got better recently and (the school have a new head, it failed its ofsted before so things are turning round ) I spoke to the organisation ACE who said when k refuses school and becomes violent or aggressive i should take him as an emergency to the doctor to cover the day he is off. I cannot be seen as an emergency. The GP has already done a letter stating he gets headaces and feels unwell on days regarding stuff at school. Its the other days when his bowels are bad, now i have rung in to say his bowels are bad. Surely that should be enough. I find it difficult to keep track of everything as my partner is suffering from a relapse(due to MS) its been weeks now. My time is divided. The eldest one is no position to help. Has anybody had to deal with education welfare and what should i be braced for. I know they can fine you for not attending school. We are going through a statutory assessment and i was told that the education welfare can drop in at school to chat to me and that could happen any day. What should i be wary of. Don't need this right now on top of everything else. K got in a bit of bother at school today because according to the teacher ' he did not use his time sensibly and will do this work at home' (this was written on a his work paper) . I am not holding my breath. K is nine and homework is a no no as he.struggles to write.He was having and handwriting exercises at school but that got stopped. Any advice at all would be appreicated. many thanks, sarni

Hello everyone Just a quick question regarding brothers who have ASD. I wanted to ask that, like any other children who play rough and tumble you would not put brothers at risk over rough and tumble with each other why do it because they have ASD. Would this be discrimination just because they have ASD ?. Does any one know of a case in point at all. Am i right in thinking this ? I cannot find any info regarding this. Its crossed my mind over something our k said about playing and he said it to an assessor. I have never come across siblings being put on a register from each other over rough and tumble, so just to be on the safe side i thought i would ask on here if anyone knows of any cases where there is disability involved. I have written to the LEA regarding our k and have under lined reasonable adjustments to be made. Its got me thinking that i believe the school have discriminated our k, so now he is having an assessment but i don't like the dirty tricks LEAs try in order to get out of paying for resources. Its something they tried before with me and they came unstuck. If anyone can help i would be grateful. with regards sarni.

Hello everyone, If anyone can help on this topic i would be very, very grateful. I am currently filling out a pink form (statutory assessment) that requires me to list what help our son needs at school. Let me first explain and bring people up to date with the situation. Apart from our ks resistance to dress up (school plays), school trips, literacy, handwriting his main problems are with eating and toileting. Our k needs a lot of help in resolving toileting issues and i don't know how or where to begin in specifying what or how they could help our k. Its been a long time since i have been on here and we have had a lot of problems with scans, relapses due to MS and schooling issues. Our LEA refused to give our k a statutory assessment even though the school and LEA knew of our k's toilieting problems. When we took our case to tribunal, the panel (all three people) wiped the floor with the LEA and we won. I felt embarrased for them, still i am angry that they (school )did not ask the local autism unit for advice on this. The school refused to believe me even though i brought in k's underpants completely soiled. I pleaded with them but all they could say was k does not ask them about toileting and does not speak up. So of course the school think there is no problem (even though i showed them) they refused to believe what has been going on. The doctor and the school nurse have been involved and given me a care plan for our k but how can i ask the school to help. The school has recently been taken over with a new head and she has said something about a 'intimate care policy' and she would ask if any member of staff would be willing to help our k. All they have said is that they are willing to stand outside the toilets while our k tries to wipe himself so he would not be worried about other children bursting in while he is cleaning himself. This takes ages at home. I try and get him to wipe himself if the amount is small but when its hard and crustatious it takes ages and makes him very sore, so i use nappy cream. When there is a lot there i have to do it. Don't see them doing this at school. His bowel movements are extreme, they resemble shapes going from breadcrumbs, nuggets shaped to what i describe as chocolate mash, he sits in this all day and says nothing. His pants get soiled and at times ,slightly, have come through to his trousers. I change his clothes every day. All the receptionist can say to me is 'well the children haven't said anything about him smelling, ( i change his clothes every day). Its bad enough he sits in it. The amount is the size of the palm of my hand and on occasions my whole hand. He sometimes goes the other way and blocks the toilet in doors at home. I have asked our k about going to the toilet and he says he is not allowed to go during lessons, yet when i have asked the school teachers they have said that he does put his hand up to ask. Not sure what to believe anymore other than k is embarrssed and keeps shouting at me he CANNOT FEEL IT, till it comes out afterwards and he has got so used to it now. We are due to see the paedtrician again (after months and nearly two years of k being on movicol). I cannot get the balance right at all We are due to see him last week in feb but the statutory assessment parents report need to be in this week. What do i ask for ?. How do i ask?. Our LEA have made so many cut backs in the service i was shocked when the evidence came out at tribunal. There are 600 PUPILS WITH AUTISM AND ONLY TWO, YES ,TWO ADVISORY TEACHERS FOR AUTISM IN THE WHOLE BOROUGH. How do i cope with this. Any advice. I am worn out with looking after everybody as my partner is in the middle of relapsing and has his own problems not to distant from our k's. your sincerely (at my wits end) ( i have dyspraxia so sorry if some of this does not make sense) many thanks for reading, with regards sarni

Hello everyone, Its been a while since i have been on here, just trying to get over a cold and really chesty cough, been under the hospital (me and my Other half). This query i have is to do with family but i need to fill people in with some background up to date info first. I have spent ages copying and copying and ..... even more copying paperwork to IPSEA who are supporting us in a bid to get K (our youngest) assessed by the LEA (yeh not even a statement of special needs but statutory assessed). Whats happening at the moment is that k is still having problems in attending school, delaying tactics in the morning, not doing homework, and the school have said he is reluctant at school to do work and has to be pushed. They (school) know that k does need a lot of help in handwriting and they have specified this on his IEP yet the SENCO does not state how much he is getting. K is under the dietician and is receiving movical and does not take fruit or veg of any kind (not even strawberries or raisins with chocolate on). K is still wearing nappies at night because his bowels need to take time to get back to normal after the muscle has been stretched for so long, the family (partners) have been told this. Now about three or four days ago my partner said that his mum had rang him at work to find out how he is getting on and then went on to say that we need to be consistent in getting k out of nappies at night. I have even shown paperwork to his mum (how disgusting that she does not believe me.) While that is our goal and ks goal.... it won't happen properly until k starts to regualte some intake in fibre. We all know this but my partners mum talks to our eldest who in turn gives us grief as he came out with a really bad verbal outburst (D our eldest is aspergers)about how i was a useless and how HE SHOULD BE OUT OF NAPPIES NOW. My partners family love to be in competition some how as another grandson is out of nappies WOW. Well so what ....! If you pardon the pun i could not give a xxxt. Our K will get there eventually and things are starting to slowly improve on the bowel side of things so its looking good. The fact that our eldest came out with the same comment as partners mum could be of course conincedence but this thing has happened one to many times and we know our eldest does visit and has said its because we don't talk to my partenrs family that he gets asked such stuff or he tells them such stuff. D has been asked not to get involved but if k is off school which he has been but only for two days in recent months then i get a lot of verbal abuse and some stuff comes out and D gets verbally aggressive. How do i approach this to partners family. They know not rely on D as he gets info wrong anyway. He says its becuase we don't visit but with my partners ms (multiple schlerosis) he doesn't go to visist much because of the fatigue and again my partners family don't understand this. So my partner tends not to stay too long. They can call him anytime, they know that. What to do. Any advice on what to say to k when getting ready for school would be appreciated to. I have been taken for granted so much lately that when i became ill everybody in the house lost there temper. I am not to be ill anymore. Thats life i suppose. Thanks for your help and advice. with regards Sarni

Hello everyone, Firstly let me apologise for not being on here for sometime. I have had so many problems with emails and setting up a new account. I do not understand about emails being stored elsewhere and that you could pick them up.(Just found out last week) I am terrible with technology. I finally got this sorted (we had a virus and wiped out windows completely, l lost every email, picture, addresses the lot). I had to sort out security on this computer aswell. I am doing this all on my own and i am struggling to the point of tears. I will come to the question in the title but before i do a little bit of background information so that i am clear in what i am emailing to you. On a recent assessment we have done on our K (he is 8 soon to be 9 years old)he was found to have a reading age of a 13 year old. His spelling is down though under his age group by about two years and he has major trouble writing stories, we are still having problems in getting him to school thankfully its not everyday as it was before. He refuses to go on school trips and days out with the school. He had the chance to go to an adventure playground and play on the grounds with all the other children. What boy would not want to go ?. He is missing out. The school are not bothered and just accept it. He is receiving 40 minutes support a week in handwriting. On his IEP he is supposed to be receiving support in guided reading 4 times a week. Now this is where it gets a bit annoying. Our k told us he has a reading teacher ONCE A WEEK, our k told us that he was on a green book, yet when k told the teacher (we had been talking about his reading age)about his reading age, accourding to k (and i will have to check this) the reading teacher immediatley swapped the lower level book to a higher reading book without any internal assessment and just on Ks say so. Can they do this ?. Its going to be strange when they try and explain this sudden improvement. The last IEP our k had he was on 2c and that was done in march of this year. On the IEP it says they are hoping that he gets to 2b next term. We had the assessment in the first week in June. How can i believe what the teachers say ?. If they say anything different tonight (parents evening) how do i handle this?. He can't have suddenly improved in a month. I say month because i have long list of absent dates that need to be explained. He has not been in school for quite a few mornings over the past two months and given the fact they had two weeks easter holidays,there is not enough time to justify such drastic improvement, if the school say he has gained or improved enormously how do i handle the fact they are blatently lying. Things could go the other way of course and they could stick to what they originally said. I need to prove the school are not meeting his needs. Could this assessment be used ?. Its so hard to prove that he needs help even though edcuationally he seems not so bad (spelling and story writing main problems). Not sure where i go with this. The consultant that did the assessment says she will send me the report with age related ability instead of using centiles. I do not understand centiles. Our k is under the dietician and the GP is having to refer our k to have a bowel scan as our k cannot feel his bowls move until its too late. He is having trouble in using his muscles in the bowels. This is particularly worse at night. It might be he has a slow digestive system. Its so irregular and we have tried the usual methods when trying to train his bowels. With all of this going on and my partners ms (multiple scherlosis) we are under a bit of stress. How do you prove he strongly needs help in other areas when he is doing ok in others. Its the spikey profile syndrome again. yours, who is sincerely stressed and has a cold. sarni.

Hello everyone, Hope everyone is alright and that the half term was good. Please can anyone help as i think i have posted a question before but can't find what the repsonse was. Our k has on occasions been missing lunch as he is taking too long to finish his litracy lessons. They (teachers)know about k and his struggle with litracy. I have twice before mentioned to them that he does on occasion say he has missed out on his sitting at lunctime and therefore not eaten anything. All we get back from the teachers is that all children eat at lunch time and do not go without food. This is happening on quite a few occasions. Has anyone been able to get round this, can anyone offer advice on this as it just seems unfair, we are going to go for a statement now we have a report sent to us from GOSH (hospital) recommending k have a statement. Has anyone come across this problem and how can we resolve this issue. It was a bit of an issue with the last school aswell but how can i prove this is going on as they imply he is making it up, our k tells us what days he has had lunch and tells us when we specifically ask him what has he eaten, on some occasions he says nothing. We try and catch him out by saying what did the other children eat but k says he doesn't know so we know for sure that he is telling the truth. Any advice would be appreciated. Many thanks, Best wishes sarni.

Hello everyone, We are still trying to get our K to eat meat. Its still difficult. He will eat sausage as he doesn't have to chew it hardly. Its mainly soft foods and the dietician has said about getting him to eat protein which is in other things like eggs . I have always thought eggs (like bananas) can bind your stomach a bit which obviously doesn't help his constipation. K still refuses to eat fruit and veg (occasionally baked beans and best of both bread and high fibre pasta). Tonight he blocked the toilet ( i had to use a cotton mop head to unblock the toilet) Has anyone been successful in getting their children to chew or eat meat. Not sure about liquidising it again, really thought we got passed that stage. Sunday dinners he will just have mash and beans and yorkshire pudding. I mix gravy with vegetable juice and he doesn't taste that properly so thats the only way i get vegetable juice in him. He is having movicol (laxative) still and i will probably have to up the dose for him. He does drink water and orange juice and apple juice. The dietician has said he needs more. Not sure what else we can do. Any suggestions, thanks best wishes sarni

Hello everyone, Sorry its been a long time since i have been on this site and i apologise if i never replied to posts. We are still having problems with K and the eldest one (whats new) just needed to concentrate on gettings things done around the house as we have workmen who have put up scaffolding becuase they are painting the outside and i have had to try and organise putting up proper curtains (ones that close properly)and we have had to take the eldest one (after a whole year,whoopee he finally gave in)and we all went to IKEA to get a wardrobe. That journey was a nightmare just to get a wardrobe. Anyway. In recent weeks, the son-rise program has been running and thought we would attend. I actually went on my own the other night (thursday)and my other half is thinking of going today. Just wanted to know what people think about it. I tried to search this site and could not access any info. Is this scheme to good to be true ?. Have people benefitted from this organisation?. Many thanks. Sarni

Hello everyone, Two problems that have arisen one with the 19 year old and one with the 7 year old. Our k was refusing to go into school on Wednesday. This day was PE day and he clung on to me as usual, dug his hands and nails into my hands and pulled me away from the school entrance, what upset me the most was (even though a teacher was coming to help me by using a distraction method which would have been better )the receptionist took it upon herself to grab k by the arm and said come on you are coming in and marched him off to class. I was shocked that she did this in front of me. She knows about his difficulties as i gave her a report about him to be passed onto to SENCO and teachers. I haven't had the time or energy to speak with her, i mentioned it to ks teacher and her reaction was 'she means well'. I said if it happens again i am complaining, with that in mind the teacher said she would have a word with her. What should i do, i spoke to the teacher about ks PE and not changing clothes. She said that was ok as long as k does PE in his plimsoles then thats fine. Its a step in the right direction i suppose. For those with teenagers with ASD, how do you cope with them giving out info without your permission ?. Its becoming a night mare to explain to our 19 year old about giving out his email address and sharing this with companies. This includes things like bank details. I was lucky enough to catch him the other day before he gave out his details to a company and market research (something to do with a photo shoot company)He did not book anything but was willing to give his details to a perfect stranger when asked could he leave a deposit, and he was so upset with me. All i get is the usual ' you never let me do anything, you keep me caged,you never teach me anything etc etc. I always reply 'but D you don't listen and when you do you don't believe me'. This latest incident drained me big time today and all i can say is 'thank god its the weekend and one of us (parents) will be in to keep an eye on things. I am really reluctant to leave him on his own incase things like this happen. I have said about leaving the phone to take messages and if anyone knocks just say 'its best to speak to my mum' but he won't have it. This week he has a lost a lot of stuff and his mind has been all over the place. So its just added to his behaviour. Just glad to see the back of this week. Any advice about trying to get our teenager to be more secure with his info. He likes to leave receipts around and i keep telling him to rip things up but he think i being paranoid again. We have tried to explain about scams and people wanting personal details from him, he thinks i am being paraniod. All i said was he needed to be careful, and then i get called 'paranoid'. Apparently i never teach him anything, i have tried, god knows i have explained and tried. He is still learning to use the cooker and refuses to use the grill and insists i buy a toaster (there is no workspace in the kitchen for a toaster). I don't get told i get shouted and screamed at. Please help, many thanks. best wishes sarni.

Hello Paula, I am so sorry for everything you are going through at this moment. I hope the services give you and him respite. It is gut wrenching but him going to stay somewhere else preferably local if possible seems like the best solution even if its just short term temporary. You are a loving mother, loving parents, i know it seems that you are going against instinct but him staying and being like this is dangerous. I have lost count how many times i have had to lock the eldest ones door when his rages went overdrive and how he threatened to kill himself. I was lucky enough to have a sister who would give me a couple of days breathing space. I know yours is a more serious situation. Can i ask has no medication been prescribed or worked before now that may help. I have found going in person to the local mental health unit and not going until someone has seen you sometime works, get proof that you have been in person to your local mental health unit, this proves to the social worker your intent is serious. Can you film or record his behaviour in any way and also get the police record of attendance and names of the officers who you spoke to. Do a check list of people who are willing to support you all. I wish there was something more positive to say but know this you have got this far, you have done all you can.You are not alone in thinking at times such thoughts. You will come out the other side. It will get better, you can't go through hell forever. churhill said, When going through hell.....keep going.....it will stop. Take care of yourselves, thinking of you. sarni.

Hello Everyone, Firstly wanted to say hope people had a good holiday, seemed to go quick this year. Hope things have got off to a good start. Well K has been back to school since last Thursday and we only had one day he did not want to go in. He actually skipped to school and on Friday just gone, done some amazing writing (ok the letters were not in the right order ie., wetn for went and a few others but it was the longest piece of writing (about 10 lines) and he had done it all by himself (writing about golf on his last day of holidays).I was so chuffed. I took him to hastings sea front (on last day of the hols) as they have 3 adventure mini golf parks there. He absolutely loved it, while on the train journey down i talked to him about school and he said how he wasn't going to like it and i said that all the other children were starting new and they feel the same as he does. This seemed to work becuase on the first day he was brave enough to go and sit in his new class and new school on his own(i watched him walk in)and so i did not sit with him on his first day. How happy i was and with the piece of writing he did by himself, i was so happy. We had one day where he wobbled a bit and said how he did not want to go in, but today has been the worst day for getting him in. The amount of coaxing i have had to do today was difficult but i managed to get k in. He refused to put on his clothes (today it was PE, I should have expected this) refused to eat his breakfast, so i started saying well even if you don't go in you will have to eat something and then i said ok you will have to get dressed anyway becuase you will be cold, gradually i talked him into leaving the house saying i had to go to the shops and we had to pass the school and then i said you will have to tell them yourself why you are not coming in. He argued all the way of course and then after managing to get him into the school entrance reception area he was behaving just like a trapped animal walking up and down by the doors going back and forth by the exits wanting to leave. He kept saying the work is too hard and i guessed this would happen but not this quick, so i am back to where we started and to top it all we have colds. I am feeling dreadful. The head teacher had to come out and coax him in this morning. I knew eventually it would be alright (fingers crossed) no doubt k will punish me later. Before leaving this morning he chucked his dads special cup, chucked his old school photo behind the telly and said i don't go there anymore so i don't need it. What made me annoyed a bit was the school reception saying ' you need to be a bit firm with him', yeh right like the last time when we both got bitten. I told her that. To be fair she actually did help me and came out of reception and tried to talk to k and then she got the headteacher to come out and talk to him so my initial thoughts were great at least someone came to help me so thats a good start. The school does know about ks condition so they know how upfront i have been with everything. We attended get togethers before school started so its no big shock for everyone. i got him in but am now worried that i am going to be seen as a nasty mum and how he will hate me. I always get the blame, sad thing is its expected as it goes with the territory. My thoughts are its going to get worse as he wants to go back to reception class and i tried to explain to him that he could not go back and do baby work again,so the work is going to get difficult for him so how can i help and stop this behaviour. How long can he keep this up, how long can we keep this up ?. Should we still pursue in getting a statement. Thanks for taking the time to read this best wishes to all Sarni

Hello everyone,sorry bit of long explanation but the details in this are relevant i think. Hope the summer is not dragging for everyone. It feels like it here. Not really sure about posting this topic on here as ks problem the other day, sounds like a general parenting problem but it gave k a major disruptive outburst. At the moment k is repeatedly watching the rocky films everyday again now, its getting to me a little. I bought k some new books (like maths year 3 (for age 7) and he was happy at first (maths is his strongest subject) I tried to get him to do the english year 3 books and he was having none of it and scribbled all over it. This was yesterday, i bought a activity book which contained 'how to make a box out of paper'. We did this together and he quite enjoyed folding the paper and we read the instructions together. I carried on saying to him 'how about making cards' you could do a 'get well' card for your cousin xxxxx(partners side of family)who had a operation the other day (day surgery). (He is fine and up and running about). I sat at the table while i let k get on with it. He kept asking how to spell his cousins name and i told him. K did well but made one or two mistakes and then kept ripping the card up, i said try again, he did and again the sligtest mistake he ripped the card up. This happenened quite a few times and then k went into one. It began with you love him more than me, (we don't see them hardly at all)i hate you, i hated it even when you carried me, yet the other day he said he loved it when he was a baby and when we carried him and questioned why we had a lot of baby photos of himself. This is really strange for me and i am not sure how to handle this.He goes from one extreme to another and if we praise him he throws it back at us. The outburst continued as he went for the scrapbook that we put together the other day and he ripped up a lot of his his baby photos. He now does not want to go up to nanas when his cousin is there, and prefers to be with his other cousin (my side of the family). His other cousin is 2 years younger than k. The other cousin is just 12months old. The fact is k would like to see the baby cousin but partners side of the family find k and me difficult. On one occasion 12months old father said that baby would not need help from k (k was offering to teach 12month old maths)k said ' i could teach him when he is 4 years old (k has this thing about being 4). Instead of saying something nice babys father said baby won't need ks help. K has always had a helpful nature, i felt sorry for k, and said never mind. Part of the problem is this, i feel bitter on ks behalf. K has been the only grandchild in the family for 6 years then along came another relation and we were not included or allowed to be involved till all the hype of 'the newborn' died down. Sisters of my partner were allowed to come up to the hospital but there was no effort to include k or us. I made the effort when we finally met the newborn (now 12 months old)as i took pictures of newborn and k. In my other threads on here the mother of the 12month old baby is the same mother who made a gay jibe joke at my eldest who got drunk (so called friends left him on his own and he did not know how to handle it so got drunk and ended up in hospital). I have been polite to her, when buying toys for her 12month old i have got k to be involved by asking him what toys should we buy for his birthday. On one occasion my partners mother wanted to take k to the park so the mum and 12month old,sisters etc., could all go but me and my partner were never asked to go we never get asked to go anywhere with them becuase of partners Multiple Schlerosis, yet he is not in a wheelchair and can walk with a stick, he still ###### drives (for gs sake). Yet my partners mum goes out with mother of 12month old THEY BOTH DRIVE CARS, I CAN'T. We are always the afterthought. I guess k must pick up on this and i wonder what its doing to his self esteem. Partners family never take him anywhere regularly its extremely rare and THEY ALL DRIVE CARS yet i am the one who takes him the furthest. At least i take him out, we are planning a trip to the zoo (he won't have to hold animals .... just look at them). We have asked them to come along with us but they always refuse. We went to the beach in essex recently and k refused to take his trainers and socks off while all the others were running around with no footwear and playing in the sand, k made sandcastles quite happily fully clothed. I had to get water from the sea for him. Still he liked it, but my partners family never never never... go anywhere (except the park). Whats more to this date i have never been allowed to hold their 12month old. What is it with this family. I would move to where my sisters lot are but sometimes they can be inconsiderate a lot of the time too. How do i handle this type of jealousy as its not sibling rivalry having said that partners father has (implied sibling rivalry) on a few occasions said they could be brothers to ks face (they don't even look like one another) then has changed his language to say cousin but in the same tone (ie. your 'brother' was up here today, he changed it to your 'cousin'was up here today sounds the same tone when you say it, why can't grandad say babys name ?. This is to confuse k and this is what makes me think why k is still carrying on like this. These are odd outbursts but whenever we mention in front of k about his cousin or cousin name the inital reaction of his is nice that suddenly turns sour. Has anyone come across this before. Can anyone help ?. Just want to find out why he k gets upset over this. Am i readng into this too much, the family grandparents have been nasty before when winding k up about names. Why can't they make a special effort to take him out alone (other than the park) just the grandparents. Is this too much too ask ?. I have said something before to them but they say they are too busy. The sisters go out with the other mother but never with us. Its wrong to assume that because of ms my partner will always be unwell. Its just plain wrong. I want to handle this better. Any tips ?. best wishes sarni

Hello everyone, I have recently being going through D stuff (when he was nine) i kept all the paper work, all the tribunal stuff from the LEA, school reports everything. I am sorting stuff out and it has brought back a lot of anger. Its been nearly a year since K has been diagnosed, and the ongoing MS that my other half has, life has been difficult and the 19 year old has put us through really worrying and some difficult times recently, but i promise this, if things become a lot better i will be so positive that i will scream it from the rooftops. When i see the good, i ll let you know. I know that sounds sarcastic but i don't mean it like that. (always hard to tell on emails) I did a positive email sometime ago when i thought OH family had accepted Ks diagnosis, but only one family member is understanding and for that i am grateful. best wishes sarni.

Hello everyone, Just wanted to say, thanks to everyone for your replies, i have personally messaged Baddad. My OP has caused upset and was not intended to upset anyone. I wish i could personally thank everyone. I hope things get easier through the holidays. Best wishes to everyone. sarni

Hello baddad, Thank you for your reply, not very good though as its caused an arguement. I just wanted to ask one main question and this is 'Can you honestly be happy when your child is sitting in a void, and i am not talking sulking. Is it ok to be segregated and have one member of the family go off and the others left behind. I like to think that meeting him halfway is better. My sadness is that family i thought understood clearly don't and they are fed up with me when all i have done is encourage him to do stuff but they have never been there to see it in other situations. They make me feel like i am to blame. I can't put a child through what feels like torture to him, anymore. If we miss out on a few things so be it. I hope k will adapt and not be a lonely adult. He will find his way one day, until then we have to go with the flow. Thank you for your input. Best wishes sarni

Hello everyone, I now have an idea why as a family we don't get invited out much/not at all. Its not just sometimes to do with MS its to do with K not taking part in stuff. Well i have warned them enough about K. I would really like k to get more involved with doing activities but don't know how to get him involved more. My nieces came out with us to visit a farm on Tuesday. One niece has a little boy and he came along and loved it, K however did not want to touch any animals, was reluctant to go on any rides and just wanted to play football. He hated the swings and wanted to get off. I could see my nieces constantly encouraging k to do this and that and the more they kept on the more he refused and they just gave up. I did tell them what he was like but they would not listen. This farm was a more like a great big park. My great nephew got to hold an owl, stroke a skunk, ferret, guinea pig. K could not stand the smell and wanted to get out into the open. All other children held pets and stroked animals but K just went off. K does not want to go swimming because of the water, he doesn't do pony rides, i am just running out of ideas. The one thing he does love is golf but his temper (when he misses) gets the better of him despite my threats that i won't bring him if he does not behave himself. We can't keep going to golf. We have six weeks of holidays and i would like him to mix more. The last day of school was bad. They had a fancy dress party and he can't stand dressing up. He wanted to go home when he saw what they were wearing. The teachers tried to get him to dress up as a wasp but k was having none of it. He said he was wearing a yellow shirt so he was a wasp already (anything just to get out of dressing up). I have asked K what would he like to do and he just wants to play his games indoors. At least we won't get sunburnt. Anybody else have this difficulty. How do you cope? Best wishes, thanks for reading, sarni

Hello everyone, We are in the middle of k moving schools and during the problem of ks book bag and missiing letters, i found a whole heap of spelling tests left in his draw. One came back with him this friday. Now k is seven and will be eight in a few months. Can anyone tell me if what i am reading is normal. I really don't get this. Should we go for another assessment or will they believe this learning difficulity to be attributed to autism. Ks spelling went like this-, Correct words Ks spelling Other spellings down down Went K spells it Whet brown brown Help k spells it Hlep clown clown You k spells it Yon see Sae stay k spells it Stai meat meat shout k spells it shat teat Teat out k spells it aout breaks breaks with k spells it wif have hawn blew k spells it bloon late laet stew k spells it strew beautiful brtftl foe k spells it forw yes yeg were k spells it wair He has done very well so if his hearing test goes well this week, should we go further and get a test done. K does say things back to front and do things back to front sometimes. He really struggles to concentrate and keep paying attention to the task in hand in everything. Wondered if there is something we could do to help. School have not picked up on this at all. I get frustrated with the fact that he doesn't spell the most basic words correctly. He learnt the basic last year. Its like he has forgotten and when learining something new there is no room for the old stuff so he forgets to spell. Do we get this checked out or just accept it?. I spell letters back to front and apparently its a form of dyslexia. Is this just a part of ASD or is this to be looked at separetely can anyone help us before we fork out more money. Would this be a wise thing to do?. His hearing was a little off last time but within acceptable limits. He has had one set of grommets in. No ear infections since. Many thanks. best wishes, sarni

Hello Js mum, Thanks for your post. I never thought of using the IEPs as evidence of targets not being met, i focused on reports. I would have gone to tribunal quicker with D when he was at school so thats a useful note to keep in mind, hopefully we won't need to use it. The new school are aware of some of ks difficulites as we submitted reports when applying for a place. I can worry a little less for now. best wishes sarni

Hello everyone, Please can anyone tell me (as i have searched google and this forum and found nothing) can a IEP move from one school to another ? Best wishes sarni

Hello everyone, Sarni here. We actually got a school place nearer to where we live away from Ks current school, yet K is still having IEPS and supposed to be moving up in September in his current school. Problem is this, moving to a new school, can the work that has been done or recommended follow on or do we have to start all over again. Would this move be bad for K ?. We are unhappy with the current school as they are not carrying out what has been suggested by the autsim outreach worker anyway. To top it all we had a speech and langauge report out of the blue, saying that k does need 'significant amount of prompting in staying on task'. 'He demonstrated difficulty with using eye contact and initiating conversation'. The service mentioned about Ks anxieties in coming to school and advise that we have a meeting (really only now ?, this has been going on since easter). When he goes up (this report goes on to say) we should have another meeting with the school and that his needs can be met by the school so long as the school set up a social communication s skills group to support him in this area to support his attention skills. Now reading this (we only got the report late last week)i am thinking would the new school take this on board, would the current school take this on board as they are not really doing what they should now. I will give an example, K is very absent minded, so he does need a lot of reminding about taking his school bag. In the last month he has been very good at taking his book bag (they did say he needs reminding), yet in my frustration at not being allowed to see his work (i have to make an appointment, we were not privy to see it on parents evening)i went looking for some work of his in his tray and found a list of spelling tests and homework (a months worth)and A LETTER ADDRESSED TO US from the speech and language department dated early May and the letter stated the therapist was leaving. This is wonderful i thought(sarcasm). Wait for it, it gets better (sarcasm)......annoyed that they know about K and his problems and this work was left in his tray (as far as i know there is only him and another girl who is more autisitic in the class, its a small school so why is this difficult for them) i sent an email to complain........(i have had no emails since early may(not even about the biting) from the SENCO about K moving up, what was happening to his IEPs, was there to be anymore IEPS if they were happy about his progress ?, not one..... then i suddenly got a reply to my email and what a flurry of info i got. Ks IEP was coming up, Ks transition day was coming up. Would i like the home/school book back as they have had it ?, no kidding i thought. Just so angry that this has been going on and my conclusion out of all of this is .....I still could not make them support K properly even with a statement as i had just the same problems with D and he did have a statement, the only difference is you can go to a solictor and get something done when you have a statement. I suppose its whats in it, and while i am aware of children desparetly needing support who have far more greater need than k it still angers me that there is not enough support to go round he gets left behind even more so now, and thousands of others will do now that Cameron will tighten SEN resources, One last thing on Ks report its says K was significantly helped when the instructions were repeated to him. It is felt that his attention skills impacted on his ability to carry out tasks. Not really sure what we should do with this now, anyone got any ideas we would be grateful. Many thanks. Sarni

Hello Lizzie, I had the same problem with D and his statemnets and complained that they mentiion strategies but they never explained how they were delivering this. In the statement there is a section in whcih they have to describe how they are implementing this, if this is not detailed then at the next annual review, you need to take the statement apart and under the sections where the needs are not being met or strategies not being delivered and collate evidence ready for the next year as its probably too late now as you have mentioned that there is only four weeks left. IPSEA have been good to me in the past and i have had no complaints when we went to tribunal they were very helpful. You always get two weeks to change the statement if its not right and they should actually give you a written report from all the teachers involved two weeks (copies) from everyone and it has to be circulated to everyone before the statement is drafted then you have two weeks to change. The only thing i can suggest is a educational solicitors and i know of a couple. Sorry dont know what area you are from as i have not checked your profile yet. I was told that you can represent your child and qualify for legal aid on his behalf,(a solicitor told me this) as to what happens after that i am not sure. Just sorry that you are having to go through this, i have been there and got the t shirt as they say. Hope this helps somehow and hope you get this sorted, don't give up. Best wishes sarni