mum22boys

I am so pleased for you. I still remember that wonderful feeling when M got his DLA, and I got the same feeling again when he had it renewed last month, this time for 3 years. Glad life will be that bit easier now. It is for us, particularily since M requires different things that maybe others wouldn't keep paying for. mum22boys

If successful, yes you will get it backdated to when you first applied. M's took 8 months to be awarded and he was back paid for the whole 8 months, as was my carers allowence. mum22boys

Yes we had exactly the same problem. School said M had no problems at all. We called a meeting with the school, told the Head why we disagreed with her and gave her examples of why. We listed the behaviour problems she should have put down, the fact that he was a danger to himself and others etc.... We clearly asked her for a more accurate picture of M. Now we were very careful with our words, we don't like her but knew we had to get another statement from her. We explained that maybe he has shown these problems after she wrote the initail report (he hadn't but we knew we had to get another letter). She agreed to re-write it. We asked for a copy once it had been done. I then rang the DWP and told them she was sending in a up to date report. They gave me a direct number to fax the copy to which i then wrote a letter to the school telling her she had 2 days to fax the letter off. She did it and she gave us a copy. this time she had detailed his problems. I also wrote a letter to the DWP as they asked for it, detailing why i initially disagreed with the school report. I know I have answered your posts on DLA before, and you may remember that they can still reconsider after reconsideration that is before it goes to appeal. M's was and he was finally awarded it. Good Luck. P.M me if you want any more help with this. mum22boys <'> <'>

I was wondering how long any of you waited for your written confirmation of diagnosis and report after your childs assessment. I know these things take time but M's school will not do anything in the way of helping him until they say they recieve it. He was assessed and diagnosed with ASD almost a month ago. I was thinking of ringing the clinic next week to find out but wondered how long others have waited. Thanks mum22boys

I did ask at the pool about special needs lessons but at that pool they don't do them. i was hoping by staying at this pool i wouldn't loose the money i had paid already. i am waiting for a phone call to find out more. mum22boys

I know you have all been at this point at sometime. I am fed up today. Fed up with not having 'normal' everyday things that others take for granted, just the stupid little things IYKWIM. I had the day from hell today. I battled with DS2 stuck on toilet with constipation. DS1 up late for school again and i have a meeting at the school at 9.15. At 8.55 I resort to phoning mother in law and asking if she will take R who is still sat on toilet and so can't go to nursery! Get M to school and he goes mad because the teacher refused to sort out his 'friend' issue straight away (she was in the middle of taking the other kids to assembly) He ends up being taken to a room to calm down and do some 1-1 with TA. R eventually goes to the toilet but by now nursery has finished so we go to his swimming lesson. Now 1st lesson was a disaster, he hit and kicked the teacher all the way through. Today was 2nd lesson and all went ok until he decided he wanted a yellow woggle. The only colour left after the others had picked theirs was red. No good! He screamed and screamed. Eventually the teacher took a yellow one from another kid to try to entice him back to the class but he shouted a load of abuse (he's only 3) then hit her. She told me she won't have the hitting and asked me to take him out. I am so fed up. To be fair I hadn'd given her any background on R. He is waiting to be assessed on the CDAC list. My eldest (M) has ASD and for once I thought if I don't have to say anything about R then maybe he will prove me wrong and fit in. I know it was stupid of me but I wanted it to be normal. No warning everyone about the tantrums and communication problems just a normal swimming lesson. I have now decided to end the lessons and have gone down the route of asking about 1-1 which costs a fortune. I think it is so unfair we are financially penalised for having kids that can't cope. I am sure you have all felt like this before but it really gets to me at times having both the kids like it. Perhaps tomorrow will be better mum22boys

Hi, Usually any correspondance you receive will also tell you who is to receive a copy. Have you had a letter about your sons referral to CAMHS? have CAMHS sent you a letter confirming he is to be seen by them? If so usually it will say who has been copied in to receive one. I have had contact with m's school nurse several times and copies have always gone to my GP. Hope this helps. mum22boys

Thanks for replies so far. No there is no behaviour plan. He has a target on his recent IEP with regards to behaviour it reads: At times M needs support with managing frustration & anger Target: To develop skills to cope with these situations. Action: Monitor incidents in chart to note any common triggers Allow M time to calm down Discuss incident together and attempt to resolve Peer mediation. So no, they are not helping him deal with it more trying to stop the outbursts. His IEP was due for review at easter. If I don't chase them up it will be JUly! I have just noticed the school is holding a meeting next week on special needs ( they like to make out they are good at helping these kids) the teacher who is in charge of SEN for key stage 1 will be there. i will ask for a meeting with her. I know i also need to think on the lines of statementing but not sure if the school will back me or not. I think not, she hates being told to do anything and she only likes the kids that achieve! Am at support group tonight so will seek more advice. Thanks. mum22boys

Hi, I need some advice but not really sure where to begin. M is nearly 7 (in year 2). He was diagnosed a couple of weeks ago with ASD and possible ADHD (needs to be seperately assessed for this). Now it has taken almost 2 years to get to this stage so school have known about M's problems since he was in Reception. School have always given me the impression they think i am a neurotic mother and I have had to fight all the way to where we are today. I fought to get him an IEP, get him referred to the AA teacher and outreach support, yes at the time he wasn't diagnosed and all the Head said was' I don't think we will be sucessful'. We were and he has had an AA teacher who drops in to the school when they can be bothered to arrange it for a year now. She has been to the school twice now. M can barely read and write, we have given up hope with the school and pay for him to have private 1-1 tuition after school twice a week. In Feb school finally admitted he was behind!!! and gave him 15 minutes 3 times a week 1-1. Not too impressed that was all he was to get but it was better than nothing. The school have always fobbed me off with 'we can't do anything until he is diagnosed' I have spent 2 years hearing that, along with 'he's not the only child we believe to be on the spectrum' . I don't care about the others only mine IYGWIM. Things hit a low point in January and we wrote a letter of complaint to the school, the governors and the education director. We got no where. The school twisted the letter to look like I had implied the teachers weren't doing their job, in fact the only one who wasn't doing her job was the Head who is also SENCO. Parent partnership came in to a meeting with us at the school and as usual the Head talked a good story. She never followed through anything she said she would do. Now M has a diagnosis his consultant has said she will come into the school and meet with us, the Head, AA teacher and Ed Psych. I don't know when this will be though. i am pinning all hopes on this meeting. Anyway since just before Easter the school eventually agreed to write in a message book at the end of the school day anything that had happened. Since then it is almost a daily occurance with M losing his temper, losing Golden time, being kept in (then he just runs out anyway) and generally getting very distressed. Today I have another page full of problems. I am worried, things are getting worse and they seem to have no idea of how to deal with him. I believe if he had 1-1 with a familiar face who gets to know him well a lot of this can be dealt with. M like many others with ASD has no concept of waiting, yesterday he got in trouble for losing his patience about waiting for the teacher to get him a rubber (she told him to wait while she finished with another child). It worries me he goes into juniors in Sept. no teaching assistant only a teacher and who knows how he will cope. I think our only route to take is to apply for a statement. He has been on school action plus for almost two years now, surely there is a time scale when the school realise this isn't working and seek to get a statement? Any thoughts on this would really be appreciated. I admire anyone who actually reads the whole lot, sorry to have gone on and on......... mum22boys

Could relate to the hands and knees bit michelle. M does this when things get really bad. He actually did it at his CDAC assessment a few weeks ago. We have also been to the Natural History museum and he has crawled all the way back to the station. mum22boys

Just read your post. Have you heard anything yet? I know how frustrating it is when no one seems to listen. happened with my eldest, luckily hasn't happened with my youngest who is on the CDAC list and is just 3 years old. Hope you had the response you were hoping for. mum22boys

Just Wondering..... I took m to get new shoes today. ALWAYS a disaster, always ends in him trying to trash the shoe shop!!! Today we sat waiting, which he managed to do for about 5 minutes. He then became very edgy and distressed. Usually he shouts things at people but today he started making this noise, a bit like a animal calling, very high pitched. He did it over and over until he was so loud and everyone was watching him that I decided to explain to the manager his ASD and asked her if she would come out the shop when it was our turn. He was screaching the whole time we waited. Once it was our turn he became agitated and then got really excited about the football shoes he picked and started jumping up and down flapping his hands, which he does do sometimes, although i have noticed it getting more frequent. The screaching out these loud noises continued until we were at home. He was still doing it at dinner. Do your children do anything like this? I know it was stress related and am actually glad it was this rather than a full blown tantrum. Can anyone relate to it? Thanks mum22boys

Hi, Not sure how old your son is but my son is 6 and we always have problems. Last year we not only did him a visual timetable but also bought a book on airports and let him have the holiday brochure. The airport book was a godsend and although we still had problems it did limit them on the travel side of things. You can never prepare your child for everything and that is the hardest part. Our problems begin if people speak to m so avoiding that is not possible. I can only suggest you get as much info together as possible. Go on the internet and print off(if possible) pictures of the place you are staying, places you may visit and how you intend to get there (boat i assume!) You can never have too much info at hand to help smooth things over. Perhaps once you have printed it out you can stick it in a book especially for him, make him part of it and make him feel he is in control. Good Luck, i know how hard it is, we go through it every year! mum22boys

Hi, I really wouldn'y worry too much. We had great trouble getting M DLA first time, it took me 8 months of fighting. He was turned down, we went to reconsideration, he was turned down again and then I asked for appeal, it was only then that he was awarded it. He was initially turned down due to the school report. He was awarded DLa for a year and a half, being that I had spent 8 months fighting for it, it then meant I only had six months til i had to reapply. I reapplied in Feb. I sent in supporting info and about 6 weeks later was told he had been awarded it for over 3 more years. And whats more they didn't even contact the school this time. I'm sure when the time comes you too won't have anything to worry about. mum22boys

Thank you all. <'> Still have all the things the pead said whirling around my head and no doubt will have for some time yet. I just wanted to thank you all for the support. I will be going on holiday tomorrow so am having a break from the internet!!! Not having a break from the Autism though. Think it will do us all good to get some sea air for a week. mum22boys

Hi, We have returned from M's assessment at the CDAC. He has received a diagnosis of ASD with possible ADHD as well. He needs to go on a seperate list for the ADHD assessment. Feeling glad that we finally have an answer. And the pead was lovely. She is going to visit the school to outline all his problems and tell them he needs lots of classroom support. mum22boys

Hi, I am no expert but have had lots of Speech & Language assessments with M. Bearing in mind M is 6 so this may not apply to your dd. Whenever m is assessed i too think 'he is being helped, guided towards the answers' and wonder how a true picture can be formed but M's therapist (who is NHS) scores his twice. he recieves one score for what he has achieved with her help and guidence and another score with what is achieved with no guidance. this is usually quite interesting as it can vary between several years of the scale he is at. e.g at his last assessment for his use of language he scored for a 7 year old when helped (help meaning first letter given to him for telling her what the picture is of - he has word retrievel problems) but when no guidance is given and he tries to access these words himself he scores for a 4 and a half year old. Perhaps this would have helped you if your dd had been scored for both being helped and recieving no help. As for a SALT with ASD knowledge i'm not sure as i've not needed to go down that route. Not sure if any of that rambling would have helped but i'm sure someone will come along shortly with much more experience. mum22boys <'>

Hi, When I asked for reconsideration (this was last year) the wait was 11 weeks. What I mean by that is they have 11 weeks to reconsider the case. In that time i submitted everything i could. I even asked complete strangers to write down what they witnessed when M went mad in shops and tried to hit people, throw things off shelves etc. I know 11 weeks sounds a long time but it did give me time to send in lots more info. I wrote a diary for a week detailing everything I had to do for M. I asked a friend with a child the same age as mine to write a letter telling them that he was not age appropriate and I asked my mum and dad to write detailing how routine based our life is as well as the account they gave of how stressed he was on holiday etc. Appeal I think will only come if your reconsideration is turned down. Our reconsideration was and we went to appeal stage. However I was told even before appeal it is looked at again and can be awarded before the appeal. Ours for M was. As far as I know you have to wait for the decision before you go any further. You may not even get to appeal stage. Good Luck mum22boys <'>

Hi di30, Read your post and was wondering if you have asked the DLA how they based their decision. Did they apply to any of the people you put on the form? When I put in M's first DLA claim they wrote to the school and she brushed everything over and said he was fine. I only found this out because I requested from the DLa the info they had regarding M and they had to give me a copy of his schools report. i challanged the school and she re-wrote the form outlining ALL his problems, just as she should have done first time round. It took me 8 months to fight for M's DLA and we got to appeal stage when they agreed to look again (this was after being turned down at reconsideration stage). They then awarded M middle rate care and lower mobility. I have just had his renewal reply through and it was awarded same rates for another 3 years and I didn't send in nowhere near as much info as I did first time round and they didn't write to the school so that was a bonus!! I would advise you to keep in regular contact with the DLA office though. On one occassion as we asked for appeal I spoke to a lovely lady who gave me her contact details and fax no and she had a collegue of hers dealing with the claim and when she looked at all the info I had sent in she said she was amazed he wasn't awarded it. I am sure it was through keeping in contact reguarily that got me there in the end. Good Luck mum22boys

Hi, I had M's DLA renewal which I submitted in February (think it was about the 5th). Amazingly i had my respose today, so took about 8 weeks at the most. He was awarded it this time for another 3 years. Am so glad as last time round it took 8 months of fighting, and then it was only awarded for 18 months. It takes longer depending on who they write to for reports. Amazingly this time they went only by the info i sent in and didn't contact the school Good luck with yours <'> mum22boys

Did no one have any advice on how to prepare for this assessment? mum22boys

Am feeling quite nervous now! Had a phone call late this afternoon from the CDAC. They asked if I still wanted an appointment for M! Must have been enquiring as I hadn't telephoned to check where he was on the list for a couple of months, which may have been because they gave me a date. I think now that something went wrong IYGWIM and there was no appointment. AA teacher said she would check appointment on Monday. So CDAC secretary tells me they have a cancellation for 3 weeks time as M has been waiting so long. Feeling very pleased it is in the school hols as now nosy Head won't attend!!!! Anyway feeling like this road we've been on so long waiting for assessment is finally coming to an end, although i know that another journey will be waiting! mum22boys P.S Any advice for preparing for this assessment? Thanks

Hi, I have exactly the same problem with my son, who is 7 this year. It is such a problem when he is trying to tell us something and can't find the right words. I don't have a magic solution but yesterday whilst he was getting very angry at us for not understanding him and was verging tantrum (sure you get the picture ). I told him quite calmly that we do not understand but we will try to. I got a piece of paper and started to draw pictures of the things i understood he wanted to tell me. It was a sequence of events at playtime he was struggling with telling me. I drew him drew others and slowly we labelled the picture until i could understand what was wrong. Yes it took a while but eventually we got there without a tantrum Not saying it would definately work for you but try it, sometimes it is easier to draw pictures just like social stories than to speak. Good luck mum22boys <'>

Just to give an update. I went to see the Head today about the kids bullying M. She took it seriously but did imply it could be a one off incident. HOWEVER, he came out of school and said it had happened again, this time he was kicked first and then called various names. He ran off but they caught up with him and taunted him some more. I think the Head may have witnessed this though as M said when they went back into class the boys were called to her office. M was called in afterwards and she told him she had dealt with it. Lets hope so, unfortunately I doubt it as the ring leader is pure evil, and he's only 6. Even the AA teacher who visited today implied it may be a one off then told me off for not taking M straight to his class and breaking his routine by seeing the head first. i told her if I had taken him straight to class he wouldn't have believed i had dealt with it and a tantrum would have followed. Her answer, perhaps you should have got to school earlier. Does she know how hard it is to get our kids to school on time, and she's supposed to know about Autism! Say no more! mum22boys

Just wondering how many of you have had to deal with bullying. A child in M's class told me he was being bullied. After close questioning of m we discovered he is and didn't realise that what the other kids were doing is bullying. I believe he is being taunted so he becomes angry and goes into a tantrum Needless to say the Head will be expecting a visit on Monday. I would be interested to hear how others have dealt with this problem. Thanks mum22boys