rachdvs Report post Posted November 3, 2005 Hi all this is my first post , i have just recieved the dreaded brown envelope from DLA and have been awarded higher rate for care and lower for mobility , why do I feel like crying and feel sick I should be over the moon ! I only sent the form off 4 weeks ago and my son has not yet been diagnosed ,we have had an appointment with camhs but only for them to decide whether they can help us and be put on another waiting list. I suppose recieving this letter this morning has made me realise that the behavior we have to deal with is not normal for a 14year old boy and we will eventially end up with a dx . How would he cope with a dx , does he have to be told ? .Will it make him more angry and withdrawn , I feel like im being pulled down a path I dont want to go, Im sick of fighting for help for my son. I have been asking for help at school for him since he was 5 years old and finally got a statement for him when he was 12years old for help as he is dyslexic ,I was so happy I thought at last he will start to get the help he needs , how wrong I was ! he couldnt cope with the one to one sessions I had spent so long fighting for ,his behaviour at home became so vioent ,he was so unhappy . i feel so angry at myself for recognising the symptoms of ASD i just though his lack of affection and dislike of any form of contact was due to him being so unhappy at school. I would like to say thank you for all the advce this forum gives ,I couldnt have filled out the DLA form without the valuable information. Quote Share this post Link to post Share on other sites
nellie Report post Posted November 3, 2005 Welcome rachdvs <'> Many people on here will understand exactly how you feel. It does get easier, I know that doesn't help. I think it's natural for you to feel upset, receiving DLA is a confirmation that you have a son with a disability, it hurts, I'm sorry. <'> It does get easier.......or maybe we just get stronger. Take your time, reading the many postings on here may help. You are not alone, you are amongst friends. Take care Nellie <'> Quote Share this post Link to post Share on other sites
mel_jayne Report post Posted November 3, 2005 hi, This may sound stupid but i need to ask sorry.I didn't know you could get DLA without dx,i'm still waiting for dx for my son so how did you get it.My son is 9 and i'm having a bad time with him,my doc has put me on happy pills . Not that there working very much lol. Quote Share this post Link to post Share on other sites
rachdvs Report post Posted November 3, 2005 hi Mel Jayne, My son has not yet got dx so I am really supprised to get higher rate , I just put on the form he was on a waiting list for camhs and he had been refered by our gp for suspected ASD. I was also very honest about the problems we were dealing with and answered the questions with him on a bad day in mind. I applied because of advice from this forum saying you dont have to have a dx . Quote Share this post Link to post Share on other sites
mossgrove Report post Posted November 3, 2005 (edited) Mel_jayne DLA is based on the childs needs over and above thise of a typically develpoing child of the same age, the form will ask you in detail about these. Your childs has these needs whether or not there is a diagnosis, so you should not be deterred from applying now. I would ring up for a form today because they date the form on the day you request it, and will back date it to then if you are succesful. Simon Edited November 3, 2005 by mossgrove Quote Share this post Link to post Share on other sites
lynyona Report post Posted November 3, 2005 If i remember rightly my son now 19 got dla from being statemented with learning disabilities and i only applied because i was told so, nothing to lose apart from the tearing your hair out with the forms lol and kieran wasnt dx as being autistic untill after he left school at nearly 18.Lynn Quote Share this post Link to post Share on other sites
Blue-Kat Report post Posted November 3, 2005 hi rachdvs and congratulations on getting DLA for your son, the recognition can be a double edged sword. I hope the money will help. I got so sick of the school SEN provision, and fighting for every little thing, that eventually gave up and deregistered them in 1999 from school and have home educated our 3 kids since then. (They are now 17, 14 and 9. All are variously dyselxic moderate-severe, teenagers also have ME/CFS, youngest has ASD). Taking the kids out of school was the best thing ! Huge burden lifted and kids feel like they'd be sprung from jail ! We pay for 1:1 dyslexia support for all of the kids, the tutor is lovely and has been extremely patient with our youngest. Progress is slow because the dyslexia is really deep and he's highly bouncy , but his self esteem is intact, which I don't think would be the case if her were at school Many people find getting a diagnosis is a very positive thing, thing click into place and they realise they are not alone with these experiences. It might be worth getting Luke Jackson's book on AS ( if this is the diagnosis that you think your son might get?). we've recently told our 9 yr old that he has ASD, because everybody knew apart from him, which wasn't right, and it feels much better now it's out in the open. I've just asked for NHS assessment, but told it could be a very long wait. GP said there are treatments for ADHD which might help if that is part of his official NHS dx. I've got the DLA forms but not filled them in yet, those forms are a bit of an ordeal ! - Katya Quote Share this post Link to post Share on other sites
