son been diagnosed with autistic spectrum disorder DLA

rev229

sweetangel63 wrote: »

I'm in the grieving process about my son, always thought it would go away if that makes sense. The course I am doing early bird is helping me come to reality.
angela

I understand how difficult it is coming to terms that you child is 'different'. I have a DD9 who has Autism, epilepsy and other problems. A few years ago I was put in contact with Face2Face. They have a befriending service which I can recommend. They can put you in touch with someone who has been through what you are going through now. I am not into all this normally but I was feeling low at the time greiving for the 'normal' child I no longer had. It really made me much more positive about the situation as the person I was talking to had had the same emotions when they had the diagnosis about their child. It really did make me change they way I felt about my child and I have become much more positive. I can honestly say that having a child with special needs has made me a much better parent. It is early days for you but things will move on and you will learn to cope with his needs. Another good website is Special kids in the UK. They are all parents of kids with special needs so have been through all the emotions and feeling you are having. It is sometimes difficult to share how you feel with friends and families who don't have the problems we do. Take care.

Karen1980

I have just had a letter to say we wont get it for my daughter who has asd and is 7. So I have to appeal arghhhhhh

Sarahsaver

Depends how you filled the form in. if you tell us old hands what types of problem you encounter we could tell you how to word it.
You have to prove your child needs more help than an average child of their age.
Don't give up;)

wornoutmumoftwo

Everyone that I know who receives this benefit was turned down and had to appeal, so that's what I'm expecting to happen anyway.

I phoned up today to request a claim form for both of my sons; one with suspected ASD and the other with delays in all areas.

Swan_2

wornoutmumoftwo wrote: »

Everyone that I know who receives this benefit was turned down and had to appeal, so that's what I'm expecting to happen anyway

Karen1980 wrote:

I have just had a letter to say we wont get it for my daughter who has asd and is 7. So I have to appeal arghhhhhh

my son's first application was turned down, & if it hadn't been for our visiting home teacher who encouraged me to appeal, I'd have let it go
the doctor who came to examine my son actually said to me 'I think he's just a bit of a mummy's boy' :mad:

he's 20 now & is still getting DLA

as Sarahsaver says, don't give up

Sarahsaver

I must be lucky. Never got turned down. Make sure you fill in all the 'what would you do in the daytime if you had help ' boxes. I have a load of things I thought of which all happened, not just making things up! Keep a notebook so you can write down if something is a problem, so when you fill in the form you can use that as an example.
Like for instance walking through town to visit shops and look at the market which my son likes doing but gets panicky, angry, scared and confused and either runs away cos he can't cope, or takes it out on me, and a couple of times near misses with complete strangers :eek:...therefore I would need help because of this. Whether or not I get it (NOT!) is another matter;)
Oh there are loads, having a bath, going to bed, getting out of the house, needing to be reassured if he is scared in the night, constant reminders to use the toilet not pee in his trousers...

quietheart

Karen1980 wrote: »

I have just had a letter to say we wont get it for my daughter who has asd and is 7. So I have to appeal arghhhhhh

What a pain, I really feel for you. I'd recommend bhas again, this is a guide to DLA appeals.

http://www.bhas.org.uk/freeguides/DLA-appeals.pdf

Get into the mindset that you are owed this allowance and then you just need to convince the decision makers.
Sorry they are making you jump through hoops.......

disney2007_2

DLA are gitts, I have a disease (Lupus-Joint problems, Double hip replacement) and it took us 4 months to get my benefit. I had full backing of my specalists and G.P had all the x-rays to prove I was a genuine case and still they dragged it out. When you fill out the forms you have to put down everything that happens on a really bad day.(Worst case) Fill out all the spaces, and really make a pain of yourselfs. I have had 2 house checks even though I have all the medical backing helping me.
Just keep going, there are people that get it for asthma and back problems.
Keep going!!!!!!!!!!!!!!!!!!!!

PasturesNew

I have found out in the last month that I have an ASD, Aspergers.
No WONDER life's been bloody hard! I could never work out why ... and now I am on my journey to learn to deal with it.
Already created myself loads of coping strategies.

Just got back from the Samaritans (needed somebody just to talk to) ... bloke's eyes glazed over after half an hour... he kept looking at the clock... then he chucked me out after an hour

Thought they were supposed to listen!!

I'd not ever make any benefits claim ... I really can't see what that would be for! So things are harder. A LOT harder. So I figure I'll avoid those things, or leave extra time.

It's so nice to know. Now everything "makes sense" and I can identify and "expect" my triggers, so I can work round them. Nobody suspects a thing ... OK, some people at work get annoyed with me about some things, but they don't know. They think I am stand offish because I can't get the coffee as I can't balance the tray/cups ... but sod 'em! Let them think what they want, I'd rather they thought that than go through the meltdown moment of trying and having the lot slide onto the floor half way up the stairs then collapse in a heap of frustration and be unable to function for the rest of the day.

It's hard to work out who you tell, how much you tell them. I tend to only tell individuals when it's an issue (When I've done something really peculiar and they've got annoyed by it, and I've got annoyed by them being annoyed, so I explain what went on between us and tell them that in those situations I'll do the same again ... then they know so we can laugh about it)

PasturesNew

Sarahsaver wrote: »

... gets panicky, angry, scared and confused and either runs away cos he can't cope, or takes it out on me, and a couple of times near misses with complete strangers

I do that
Then I run back to my car and cry all the way home and don't go out for days/weeks after that....
Except now I know why ... I can at least know why I am not going out, rather than staying in not sure why I feel the way I do...

Although now I just talk to myself as I walk. I think "nobody knows, think calm thoughts"

I also find that walking at half the speed of "normal" helps. I was finding at the points when I was getting panicky, I'd really increase my pace. So slowing everything down to "half normal" makes it doable. Less meltdown moments!