mum22boys

Hi, M was diagnosed a couple of months ago and it took over 6 weeks for his 'written diagnosis' to arrive. It stated background information that we had given them, info from the AA teacher, Ed Psych, school and SALT. Then it had their findings from observation followed by the diagnosis. It ended with a management plan for M (these were the things the consultant says he needs in the way of additional support) also included were referrals to ADHD clinic and behavioural and sleep therapy and dietican. Hope this helps. mum22boys

Yes i've been there. M's school made me feel I was going mad for 2 years until he was diagnosed. I actually felt relief when he got his diagnosis because I knew I was right. They made me feel a liar. They told me he did role play . His assessment proved no imaginative play has ever developed! they told me he gets dressed no problem, then I find out the LSA helps him and he still is last. I could go on and on about everything they have fought against me with. Now he has a diagnosis it hasn't changed. The Head now tells me he hasn't got a disability, he is different. Sometimes things just won't change. I've accepted that now and am searching for a new school for M. I won't leave him in the environment he is in now and I won't battle any more. I wish you luck and hope they see things your way because it will sure be easier if they do. mum22boys

I read your post and wondered if five was too young to tell them. M is 7 and it is only the last couple of weeks I have thought they might be getting to the age they will understand. The Head however won't even tell the staff about M's autism so I have no hope of her explaining to his class. M will not be staying at this school hopefully as i have found him a new much more caring school. However, because I know this will come up shortly I have ordered a book from the NAS called 'Play with me' it is for classmates age 5-9 to give them a better understanding of children with autism. I ordered it over a week ago and am still waiting so can't comment on it. It cost �4.99 but if you are a member you get 10% off. mum22boys

How weird mine has re-appeared. I also noticed there was a recent one by Pumkinpie so perhaps hers has turned up again as well. Anyway problem sorted mum22boys

Mine seems to have disappeared too Does anyone know why. mum22boys

Hi all, Have decided to stop moaning about the useless uncaring school i send my kids to and have decided to look at other schools. I know there are lots of you out there who have done this but would really like your advice about how you went about it. I have looked on the internet for local schools and have decided he would be better suited to a very small village school where there is a high teacher to pupil ratio. I have seen two, checked the ofsted reports and think i will ring them. I am going to ask for an appointment and have some questions I know I need to ask but could some of you reading this please let me know how you made your decision. Also once you found a school how easy was the procedure in changing schools. M is in mainstream school. Thanks mum22boys

Had reply from school, am in tears, they blame me again mum22boys

Thanks for your replies. M was diagnosed about 6 weeks ago by a peadiatric consultant. She is lovely and although we didn't by any means go into our problems with the school we think she guessed by the message book that the school supply me with (took me over a year to get that). She has written a very long report with a management plan for M which involves him needing lots of classroom support, support with moving round the school, and support at lunchtime. She also phoned the Head to go through his problems and will be coming into the school next month for a meeting with the Head, us, and Autism advisory. Although I am very pleased it feels it is our last hope before we make the decision of whether to move him if they won't support him. Now the funding system has changed who knows if she will actually commit to spending any of her budget on M. The AA teacher is actually useless. She constantly tells me things could be worse, something i just don't want to hear. The Head seems to have her version of how m is at school, but i must say since the school diary/message book began it will prove she is a liar. She told me the other day she can't remember the last time M had a tantrum, yet the book tells another story with things happening sometimes on a daily basis. I have photocopied the book in case the Head confiscates it, I doubt she knows it exists. we have decided to request a statutory assessment when we attend this meeting, hopefully the consultant will back us and so will M's 1-1 private tutor that he has twice a week after school. I doubt if the school will. I would love to move him from the school and he hates it there anyway, but his younger brother is in Nursery there and due for his assessment in September at the CDAC so we are holding out for then until we make a decision. I hope my letter makes them see how we feel but i just don't think it will. Loved the fact i used the word disability constantly throughout it so she can't ignore it. mum22boys

Hi, I have come to the conclusion that I can't be the only one who is treated like dirt by their childs school. I may be the only parent at the school made to feel like it there but I am sure there are others on here that feel the same way i do. M's school have no understanding of his problems. The Head hates to be told anything and even if she does suggest something she doesn't bother to act on it. But what really gets me is the staffs attitude towards me and M. They regard him as a naughty child and me i'm sure as a neurotic mother who can't control her obviously undisaplined child For the past two years everytime he has had a tantrum and i'm at the school (you know what it's like, they usually kick off at the beginning or end of the school day) the staff just walk past me like i'm not there. I am holding down this incredibaly strong 7 year old whilst he headbutts me, kicks me, bites me and shouts abuse at everyone that walks past and it's like i'm not there. I thought that once I proved them wrong that I knew there was something not right and had a diagnosis that things might change but they haven't. My guess is that the staff are told to ignore me and M. I don't even know if she has told the staff that M has ASD. I doubt it, or if she has they don't know what it is. Yesterday he had problems with some kids, the Head has told him to come and tell her if he has problems. She never told him what to do if she wasn't there, and suprise suprise she wasn't there. He came out of school gave me no background information as they don't, just assumed i knew what had gone on and demanded I take him to find the Head. Ok I thought he has just had a problem and he needs to see her, so we go to the office. i tell the stroppy bulldog looking woman who regards herself as the secretary M would like to see the Head. She bluntly replies, 'I've told him once shes not here' Now he starts crying and screaming that he needs to see her. Then the teacher PA shouts out 'If you carry on crying we won't tell her at all' He them goes into a massive tantrum and I have to hold on to him for half an hour whilst 5 members of staff walked past like I wasn't even there. His support teacher from that day got a load of abuse from him because apparently he tells me he kept getting into trouble because she didn't call his name first and he had no idea she was talking to him as well. The support teacher looked at M when he shouted at her and smirked Now am I the only parent being treated like dirt or do others have this sort of treatment at their childs school? I sent in a letter of complaint today about their attitude towards us and also their lack of understanding of M's problems. Please let me know i'm not the only one treated like it. mum22boys

Hi, I can't comment on the worry about the LEA but I have experience of these playschemes. M has ASD, he is nearly 7. He has very controlling, oppositional behaviour and will not acknowledge anyone out of their normal setting or anyone apart from immediate family really. He started at a Special Needs playscheme over a year ago. He is never parted from me except at school, he doesn't go to any clubs as he can't even cope with thinking about it BUT the playscheme has been the best thing ever. Ok so the first time he needed me to stay a while and then kicked off big time because a child looked at him but it has got better. He needs 1-1 and they provide it, they have a wealth of experience and I trust them completely unlike his school. I actually used the fact he attends this playscheme as a point on my DLA form to let them know he can't attend a 'normal' playscheme. If your worry is with the playscheme and how your child will cope i can only say they will probably have seen it all before. M's helpers are not phased by anything he or any of the children do. I hope it all goes well. mum22boys <'>

Hi, M had social skills put on his IEP when he was in year 1 (now in year 2) His target was to develop role play skills!!!! Also to mix with more than the one child he would approach. As a short term target I think it did help a bit. The teacher made an effort to get certain boys to ask m if he wanted to play and slowly he was taught how to approach other children. The only problem was no one prepared him for when a child said No. So after one term of this being on his IEP and despite his teachers request to the next teacher that it be an ongoing target it was dropped off his IEP. Now if a child has social skill problems do they honestly think they will disappear in one term Now he is in year 2 and we had no end of problems with a child (who M is very fond of) refusing to play with him and as no one had taught him that a reply may be no he started to lash out at the other child. If you ask me putting it on an IEP is only any good if help is going to be put in place and it is on going. Unfortunatley I feel IEP's are a waste of time in M's school as nothing seems to get done. The targets are unrealistic and no one sets out to give the kids additional help. Roll on next week when M's school has the OFSTED inspectors in mum22boys

Hi, The doubting!!!! All normal i'm afraid. M spent 18 months on just the list to be assessed by the communication disorder team. I did plenty of doubting, studying him, reassuring myself i wasn't going mad and trying to convince the school i wasn't some neurotic mother just trying to label her son I would have days when I thought 'perhaps everything is ok, there's nothing wrong' Then it would hit me hard, the special ways things have to be done, the routines in the morning, the terrible tantrums when school was bad, the not speaking to friends once outside the 'normal' school setting. Then I would feel like there was no doubt about it he needed to be assessed. M was assessed five weeks ago. His diagnosis was ASD. I am still waiting for the report and until i have it in my hands I can't get it straight in my head. Yes, I knew there was 'something' but it still hits you hard when you're told. M is exactly the same. With me the need for routine and order is greater than when he is with his grandparents. He always displayed good behaviour in school and let me get the side of his frustrations when he got out of school. this has changed over the last year or so and now school have the same problems I have. I don't think anything anyone says will make you stop doubting. Some days you will be so convinced he must have aspergers and other days you question yourself. I know how hard it is as I have been there, and now I find myself questioning the diagnosis instead. Seems I can't win Take Care mum22boys

Hi and welcome <'> I'm from the same area too. Have you visited the library? They have a section on situations/disabilities. They are books designed for children but they are not in the childrens library (in our library they are with the childcare section.) Hertfordshire County Council produced a set of books for children with autism or children that know someone with autism. I borrowed a book called I have Autism, and although I felt it was more written for a child who knew someone that had autism, it did cover the different issues that autistic kids have written very simply. I didn't need the book in the end, I had borrowed it in case M asked any questions after his assessment. It would certainly be a good idea to have a look at your local library. mum22boys

Just wondering how you managed to get a dyslexia diagnosis at five. M was screened for dyslexia just to see if he would need the proper test, that was when he was 5 and he came back as medium to high risk. The school said i would have to wait until he was 7 before he could be properly assessed. I was also told that by the dyslexia people who do the assessments. mum22boys

We usually wait about a month for an EP report. Hope that helps mum22boys

MichelleW, Your letter from the DLA telling you how much your child has been awarded will have the period on it that it will be paid till. It could be anything, M's first one was for 18 months, this time it is for 3 years. They send out the renewal six months before it is due to expire. Hope that helps. mum22boys

Oh Hev <'> <'> <'> I am so sorry life is so tough. Please don't punish yourself, it is not you that is the bad person here it is this so called system. I really don't have advice but your post worried me so much. Go to your GP tomorrow, tell him everything, you can't carry on like this. You are a good person that is just wanting help for your son and yourself, that is not wrong. Don't give up, feel proud of yourself that you have such great self control that you didn't take it out on him. Are you ok? Are you still logged on? mum22boys

You are not alone in feeling like this <'> <'> I too went to my GP not knowing what to say. At that time I knew very little about the autistic spectrum and i didn't dare mention my concern, that it seemed to me M was likely Autistic. I simply went there and said 'I am concerned about M's behaviour' He asked why and i told him about the terrible tantrums. At this time I didn't mention the obsessions etc just the inability to cope with change. My GP was great, he told me to spend 2 weeks writing down everything that concerned me, which i did. I went back and he referred M to CAMHS. Now they were useless, I had to spell it out for them what I thought was wrong with M and she doubted what i was saying because...he made eye contact with her I still went on and on until he was referred to the community peadiatric team, they agreed to refer him to the CDAC unit. M spent 18 months on that waiting list and yes I spent the whole time trying to get the school to understand that there was something wrong with M. Schools are either understanding or not, M's isn't. After the battle we finally got a diagnosis for M- Autistic Spectrum Disorder. The relief was so great to realise that I knew even though the school had me labelled as a neurotic mother - I was right. Even though I have told them they still i think disbelieve me and tell me they need it in writing. Do not be afraid of telling people you believe there is something wrong. Even if they doubt you keep on at them, i am glad I did. You are his mother you know him better than anyone. Also I have exactly the same as you with the school saying M is fine in the playground. It was only when he started hitting the kids who wouldn't play with him that they listened. Remember their observation is probably with their head in a cup of coffee from the staffroom window Write down what you want the doctor to hear and go for it. Let us know how it goes, when is the appointment? mum22boys <'>

We reclaimed at the beggining of the year and used everything again and more. The lady i had round even put things on the form like he needs extra help and support when visiting the cinema. This was something that wasn't even suggested the first time round but this lady put it all down. We also made a list and mentioned everyone he is under for additional help e.g the advisory teacher,CAMHS, his IEPs and extra tuition after school plus the special needs dentist and special provisions made with the GP so he sees the same one each time. Even though you're not sure if it is beneficial still put it down - we did. mum22boys

Hi, I'm very late it seems coming into this discussion, must have missed it! Not sure if you still want info but we went through the assessment process last month. I must say firstly, we didn't prepare M at all. We thought let them see how it is when he goes to a new place with people he doesn't know, let them see the communication difficulties etc. M had already been under SALT for 2 years and their reports were taken into account. The ed psych did a assessment visit to the school. She met with us after and we had to go through the pages of questions with her...things like ' do you have any concerns regarding your child interacting with others' they had to be marked on a sliding scale of 1=no concerns to 6=very concerned. That sort of thing. it took a long time. The school also had to answer the same questions. M's assessment was held in a local hospital. The consultant made us aware there was a team assessing. The room had a two way mirror so we don't know who was watching. M was supposed to be assessed seperately regarding his play skills but he tried to run out the building when it was mentioned so he stayed in the same room as us while the consultant asked us lots of questions. It took over an hour to answer the questions. Everything from him being a baby, through toddler stage to nursery then school. She asked the questions we answered and then she asked if there was anything we wanted to add, and believe me there was. She took all the reports from us(we took copies of every recent report we had on M - even IEP's and school home/message book) They went away and spent over half an hour discussing M. I actually found the play thing with m very interesting. I couldn't continually watch as we were being asked questions but he was so M, IYGWIM. He broke the playmobil up in pieces and fired it round the room with his fingers, sat it on his head etc. She tried to get him to go through the cards that show emotions but he refused and instead turned them over, found they had numbers on and sorted them into order. M was then diagnosed with ASD, with her strongly suspecting ADHD as well. She was very nice and has offered to come into M's school to go through his problems. We will recieve his written report and diagnosis next week. Just go along to the appointment with the knowledge that they will and do see everything you do. They noticed M flapping his arms in the waiting room, bursting into conversations without me even mentioning it. I am sure it will be fine. Good luck for june and don't forget to keep us well posted. mum22boys <'>

Hi, It seems to me you partly answered your own question. I can't do quotes so will have to point you to your last paragraph. You are concerned about his social side, interacting with others etc. It really annoys me these teachers who just don't seem to get it. How dare his teacher say 'what do you want us to do about it' Provide the right and appropriate resourses would be my answer. Unfortunately me like many others on here do not have a good relationship with our school due to their lack of understanding. My son is the same age as yours, going into year 3 in Sept. He has just been diagnosed with ASD and he recieves no help at school at all. I sometimes can't believe I have a child with autism in a mainstream school and he gets no help. M's school are good with excuses, this time (last weeks meeting) it was , well when we get the consultants report and the written diagnosis (like i'm lying) then we will look at what he needs. In my opinion schools just don't want to help. Mine has until Sept to provide M with help and if not I will move him and his brother to another school. Try not to be fobbed off like i was with comments like' we can't get him any help until he's diagnosed' The funding system has now changed and they can help. If you decide to seek that diagnosis please do because although he may be fine now things do change. M has definatlely got worse. Barely a day goes by when they haven't had problems at school with M. Depending on how good your school is will depend on how they are prepared to help. You are worried about his social skills and maybe they could provide social skill classes, something i have been battling to get M 's school to do. Good Luck, and next time you are faced with that sort of question make sure you can wipe the sarcastic look from their faces!! mum22boys

Hi, As already mentioned CAMHS is Child and Adolescent Mental Health Service. Now it appears to me that depending on where you live depends on what CAMHS actually do. In our area I would say not a lot!!! They don't assess for Autistic Spectrum Disorders they seem to be more mental health side of things, I think. In some areas it appers they do diagnose.I thought maybe they deal with ADHD but as M has now been referred to be assessed for ADHD it seems they don't do that either. In our area we have a Child Development Team who deal with children pre-school age, then they decide where to refer them on to. You mentioned casbat, now we don't have that here but our equivelent is CDAC, Communication Disorder Assessment Clinic which i assume is the sort of thing your child will be assessed at, M was. Hope that help. mum22boys

Not sure if you have mentioned it or not.....but with M's claim i sent in the paragraph in Tony Attwoods book about the child being a jekyll and hyde character, ok at school and then different at home. I photocopied it and also the front cover of the book so they knew where it had come from. mum22boys <'>

Hi, Do you have a local money advisory unit? Ours is attached to our local council and they help filling out forms for benefits etc. They also represent you at appeal, although i don't know if they only do this if you go through them from the beginning. May be worth a try, although i know ours is usually very busy. You may get some advice though. mum22boys

Hi and welcome <'> Look i'm certainly not going to go too in depth here because others have far more worthy things to write! I like a lot on this forum have been 'in your shoes' (I hope no one takes that literally, I do think before I speak when talking to M, really!!!). I think go with your instinct, you are his mother, you know him best. I can't say, yes he has AS or no he doesn't. It seems to me you are worried about labelling him. From experience I have realised to worry about getting M labelled would have been selfish, I would have denied him the extra help and support he desperately needs. I read somewhere a mothers comment which went something like....'I either have a label of autistic or spoilt little brat for my child, therefore i would rather have the label of autistic' I agree, my son has behavioural problems and I knew if I didn't get a diagnosis be would be kicked out of school pretty quick. If you are concerned go to your GP. He can refer on to the necessary people. Depending of where you live depends on the wait. M was on just the Communication Disorder Assessment list for 18 months, that was after being seen by CAMHS. I knew M needed an assessment. He was diagnosed a month ago with Autistic Spectrum Disorder. I although he is now 'labelled' believe it was the best thing we could do for him, particually as the autism appears to be showing itself more. Good Luck in what you decide, and remember to ask any questions here, it's what we all do. Oh and Emily I hope I haven't offended you with anything I have written as your answers are so spot on that it made me quite nervous replying this time! mum22boys