mum22boys Report post Posted April 13, 2006 I feel stuck in this diagnosis whirlpool - well thats the only way i can describe it. Today i got a report from the Ed. Psych. who has yet to assess M but has had a meeting with myself and school nurse. She reported everything I said then put all the things school said-No problems, M copes. Have seen tantrums at end of school day (makes it look like i'm to blame) and he likes school but hates homework. She then puts in a load of leaflets about managing your child. I'm thinking what has become of trying to get help for your child. I initially went to the GP because his behaviour was difficult. We are stuck on this long list for assessment. CAMHS can't help because they don't deal with M's problems. The school are sweeping everything under the carpet and i am going to appeal with the DLA. Perhaps I am imagining everything as the DLA refused his claim twice. The school say he is ok! Then write up an IEP that states he needs to mix and do role play as well as use visual calendars. The pead and CAMHS say he is showing sogns suggestive of ASD.I feel as though i am stuck in time. I just want answers and I feel I am the one being challanged constantly. Once I might have said I am a strong person but I no longer feel like that. i feel fed up and at the end of the road thinking is it worth it. I was only trying to get help for M. I don't want him suffering. I know deep down i have to carry on. I know something is not right. Had a nightmare of a day yesterday. Went to London. he was stressed all round Natural History Museum then train station was closed and we had to walk for an hour. He then started crawling along the pavement because he was screaming his legs hurt. I endure the stares and comments and yet I feel no one seems to be listening to me. Think I need to get some fresh air and hopefully will feel better later. Perhaps it's just a bad day. Thanks for listening to me whinge. mum22boys Quote Share this post Link to post Share on other sites
bugbug Report post Posted April 13, 2006 Stick to your guns. You know your child better than anybody. I don't really know what to say but try to keep strong, your doing the right thing. Let other people think what they like, you know best. Thinking about you Bugbug Quote Share this post Link to post Share on other sites
stressedmumto2 Report post Posted April 13, 2006 Sorry to hear you had such a bad day. I know what it's like when everyone is saying there are no problem's I had that for 2 years even dad was saying he's like a normal child because he didn't want them to think he couldn't cope. In the end time took it's toll on son and his coping at school was no more. He was excluded 6 times in the space of just a few weeks and then that led to him not wanting to go back. In the end noone could say it was just me he had problems with as very quickly it spiralled out of control. I don't want to alarm you but it could happen all so quickly. Keep fighting for your son and the help you need as a family, even though he's coping at school there may be a day when he doesn't. Do you get any outside support ? Try and get some, maybe just a worker coming to the hom for a few hours a week then they too would be able to see what it's like. As hard as it is and we all want our children to behave when others are around but others need to see how it is affecting you. Please don't give up, let everyone know the problems you are having, write letters and cc everyone in, so everyone know's what is happening then it can't be swept under the carpet. Good luck and stay strong <'> Quote Share this post Link to post Share on other sites
OPooh Report post Posted April 13, 2006 Am sorry to hear this is happening - and doesn't it happen all too much - it's so frustrating. I'm sort of where you are too - hang on in there. <'> Quote Share this post Link to post Share on other sites
Tylers-mum Report post Posted April 13, 2006 Been there and got the t-shirt! I had to fight for 4yrs just for someone to listen. Pead didn't think he was ASD so refused to refer him for assessment. In the end, I completed loads of online questionaires along with his LSA at school and via that, got the referral. He was finally dx HFA and I had an apology from his Pead. Believe me, it is well worth it in the end. I also had to fight for DLA after being refused but finally won at tribunal. I have had to fight for everything b/c nothing is dealt to you on silver platter, if only!! Hun, stick to your guns, I did b/c i KNEW that T was on the spectrum and I was proved right in the end!! The school said he was an angel bar his meltdowns etc etc and it was only via the help of his brilliant LSA that I got the referral (she helped fill in forms). She's left now but if it weren't for her, I'd still be fighting. Hang in there hun, you will get to the end of this dark tunnel soon. I did and I know you will! <'> <'> <'> Quote Share this post Link to post Share on other sites
oracle Report post Posted April 13, 2006 Read this again Today i got a report from the Ed. Psych. who has yet to assess M but has had a meeting with myself and school nurse. She reported everything I said then put all the things school said-No problems, M copes. Have seen tantrums at end of school day (makes it look like i'm to blame) and he likes school but hates homework. This is 'classic' ASD behaviour. Don't give up! Why not give the NAS help line a ring and ask for some advocasy here? OK you don't have a dx but they will fully understand how difficult it can be to persuade some professionals that our children do have ASD. It looks to me as if the Ed Psy is trying to save the school and the LEA some money by being dense here. Either that or they could do with some re-training. Have you a local support group that could help you here? They could give you some support and maybe a couple of pointers. The DLA is probably being turned down because the school are putting 'no problems' on the form It took me 10 years and my son a complete breakdown before we finally got a dx for him. We were right and they were wrong and my gut already knew that. <'> Oracle Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 13, 2006 You have got some good advice there. The meltdowns after school are because behaving so well while he is there is so hard for him. NOT because you are doing anything wrong. I was interested in what you said about your son's legs hurting. Does he walk/run in a slightly unusual knock-kneed/flat-footed way? Simon Quote Share this post Link to post Share on other sites
cmuir Report post Posted April 13, 2006 Hi I'm going through exactly the same hassles just now. Many a time I've felt like giving up, but I too damn stubborn. My feeling is that if I don't kick up a fuss, write letters, make phonecalls in an attempt to get these so-called specialists to listen and do something, then no one else will. I believe that pester-power will help. I've spent night after night last week writing nasty letters and was amazed when I got 3 resonses ? more than I've had in a whole year!!! Keep going and be strong (although you are allowed to have your 'weak' moments ? I know I have plenty of those!!!). Thinking of you. Caroline. Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted April 13, 2006 in same boat too honey <'> <'> <'> ive no dx as yet only global development delay for my nearly 5 year old,school also think im a nutter as they cant see nowt wrong or shall i say they tend to look the other way so they dont have to face anything so draining isnt it i used to be quite nice about it all now i loose my rag at these appointments and also follow up with sharp letters ect..... as i too have had enough of dealing with it all on my own. take care xxx keep up the fight xxx Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted April 13, 2006 <'> <'> <'> mum22boys Don't give up, the diagnosis road can be a very long one and there are many times it seems like you are going 5 steps forward 6 steps back. We first recognised Martin's problems when he was about 3 years old but he wasn't diagnosed until he was 9 years old. We kept being told "he's a perfectly normal little boy" even by an educational psychologist because of course he was well behaved at school and above his academic levels. Even now, despite his official diagnosis and his DLA, the school still fails to recognise all his problems which is why he has never received anything more than School Action. It was only thanks to Martin's SENCO who advised us to go through the GP rather than the school that we got anywhere and from GP to Peadetrician and CAMHS the whole dx finally took just a few months. Hang in there ...... make a diary of everything he does on a day to day basis and take it and him to the GP Quote Share this post Link to post Share on other sites
