Heaven help me these days but DLA turned down again.

[SparkleRainbow]

Well that is it really. I put in a 15 page letter referenced to quotes, reports, etc for reconsideration and supplied 35 pages of additional evidence, but I got the letter this morning turning ds down, no reasons given.I know the knowledgeable amongst you would tell me to go to tribunal, but I just can't, I just can't do this fight anymore, I can't any extra heart ache involved, I want my boy to be "normal", to live a "normal life", I want him to live. No one, no one will help him.
Please any trollers or flamers don't even think of posting in answer to me, I just needed to share my desperation with my friends.

This must be awful for you but it's definitely worth going to CAB - they help people with these forms and appeals all the time and will know how best to approach it from here.

Thanks for the honk and tough love.

Do I have to attend a tribunal, surely there are more forms to fill in? Sorry to be so pathetic, I can't even bear to ring DWP up and ask them these questions.

sparkle You dont have to attend the tribunal ,but your chances of being awarded the dla are much greater if you do.From memory, and things may have changed over the years,there should be no more forms to fill in. If you can get someone acting on your behalf ie welfare rights ,they now do all the form filling for you. It may mean an appointment with the officer who will be dealing with you but this is only so they can get an idea of your ds problems and difficulties.They then look at the reasons you have been turned down (they find that out from dwp)and then they look at the reasons that you should be awarded it ,and they submit the appeal for you.The interview with the officer is so that he/she can ask you the questions that are relevent to your ds condition, its actually quite a relief to talk to someone who is acting for you and not against you as it sometimes feels with other people.I even find it hard with my own family and friends sometimes because i feel like i am always trying to explain my ds difficulties, if i hear "oh my ds does that too" once more ... anyway back to the appeal. The tribunal is your chance to tell the tribunal about the difficulties your ds faces ,again it is a question/answer type of meeting.unless the system has changed greatly it is a panel of three people looking at your case and deciding if your application has been wrongly turned down.You would have the welfare rights officer there with you. They then discuss in private for a short time , then tell you if your appeal has been sucessful or not.Its not like a court or anything ,its all quite informal feeling.I am a very quiet and nervous person but the tribunal honestly was a lot less stressful than i imagined. Give it a try, you have nothing to lose and have come so far now in the process that one more step could be all it takes . I hope i have not given you any inacurate info but like i say my tribunal was a few years ago. and you are not being pathetic :) the appeal is made to look scary on purpose to put people off. good luck.(i am new to typing ,sorry if this is hard to read )

Thank you debinaboat, you typed that very well and I appreciate it.

I guess I am feeling inadequate, for lots of reasons, not all related to my ds but most of them are. It was a horrible thing to have to even consider dla, then to have now bared all twice and been turned down is not only depressing but makes me feel, oh I don't know, like they are saying this is normal, and ds and I should be able to just get on with it. You know what it is like living with this kind of thing, you totally lose perspective, I know I have.

Been there justabout, me unable to calm him down and having to leave him with TA who did a fab job.

sparkle If i could just add , please try to continue with you application for dla, the appeal etc if you can, because i am very afraid for my ds future when his dla stops this year (he will soon be an adult and will have to reapply). I am very scared that the changes the new government are bringing in will make it so much harder to get dla.at least if you do it now it might be a long time before you have to do it all again. sorry to put more pressure on you , but something to bear in mind... will be looking out for your name now when i lurk,i feel like the new kid in the playground here and will be glad to see names i know :)

Still no second wind yet I'm afraid zzzzz. I have been watching ds over the weekend, I know he is going through a really good spell over the last week, pain levels relatively low, mobility much better than usual, and although all the dangers associated with him falling etc haven't gone away, it has so nice to look at him and not think about filling in that paperwork and explain life for him to dispassionate people again.

A positive today is that ds didn't scream and shout at his clinical psychologist, but even answered a couple of her questions about how he feels, this is a major step forward, and she told him so.

Glad your ds is doing a bit better for now Sparkle, think you seem a bit more relaxed, think its given you the sparkle back, lol. Its a lot to go through all the paperwork etc so no wonder your just happy and content to forget dla for now. I hope in time you feel strong enough to go to tribunal. For now im :) that you feel positive.

I know that feeling zzzzz, although these days one glass of wine and I just fall asleep, I am such lightweight.

Unfortunately the low pain honeymoon period ended today, he was so sore and stiff when he woke up he was walking like a little wooden soldier.

I am sorry that your dc are having such a bad time at the moment. Your don't want hypermobility issues on top too!

My dd2 has started going very blue hands, arms, feet and legs again. She has a heart murmour and I think it is rearing its head again, so that is a worry.

Do you feel like you have no RL friends left? We hadn't long moved when ds's problems really started kicking off. I made some friends early on, but they are all disappearing really fast now, they don't want him to play, don't want to meet up. I don't talk about him all the time or anything, we often rabbit on about how dreadful the local school is that all our dc attend. I think I have become marmite. Perhaps I should start a thread for us marmiters. God I am so lonely.

Poor you Sparkle, and your 2 wounded soldiers, lol. You must be worried sick. It does get lonely, i talk to all my neighbours etc however only have 1 real friend. Best friends for 27 years now (im 41 next week). however she doesnt have any dc i have 3 boys. So we tend not to talk too much about kids, i go out with her maybe once every couple months. My mum is a great support, when im down i phone her and go on about everything thats happening with ds, think she's only person who can be bothered to listen and she does worry & care. My dh is here too so we have each other to keep going when things are tough (as they are most of time). Ive only been on MN a few months and find it helps a lot, for help support and also to know people do care and your not alone. Keep smiling, tomorrows another day :), big hugs x

I like the idea of being single malt......I always think it smells and slounds wonderful, but can't stand the taste.

I love my dh dearly, and he is my best friend, but he is out there working all hours to keep us afloat, and even he has admitted that he tries to ignore reality for ds, and pretend all is fine, because most of the time he can't actually do anything to care for ds because he isn't there. My other best friend is in London and I am in the West Midlands, so I just don't see her very often at all.

There is a condescending body language with some people isn't there.....

hi sparklerainbow i'm in similar situation with my ds he has multiple sn and i've applied for mobility 3 times this time tho i've decided i must go for appeal my ds is 5 1/2 has 3 forms of epilepsy cerebal palsy(left hemi) autistic tendensies, gdd, s&l problems and borderline hearing he has no sense of danger and i'm still pushing him around in pushchair. i feel that i must push this now not just for ds but for rest of family also. its so frustrating when you find out that people that really do need the help don't get it and the people who dont get everything. i know of someone who gets high rate care and mobility and doesn't even have a hospital consultant he goes to gp with a bad back and gets everything aaaaargh! wheres the logic.

Sparkle - I haven't read all the other replies -

But I think you must go to tribunal.

I was turned down over and over again the first time we applied for DS. (I am filling it all again in now, 3 years later and have looked back at my original form and I had filled it our really really badly!)

Anyway - i ticked the box to say I wanted to go to tribunal and they phoned me up on the day of the tribunal offering me DLA at middle rate - they told me not to bother coming to the tribunal.

My feeling was that the tribunal was too costly and they just wanted to get rid of me.

Its as if they turn you down and put you off hoping that you'll give up - and when you refuse to give up they just give in.

That's why I don't think you should give up. Do just say you want to go to tribunal and see what happens.

Thank you for that, I am still too wobbly to face it at the moment. Didn't sleep last night for worrying.