son been diagnosed with autistic spectrum disorder DLA

skips_mum

My son gets higher rate care and lower rate mobility - autism and other problems. Take your time filling in the forms, even tho its traumatic listing all the awful bits. If you don't get it first time, appeal - many people are turned down flat and then suddenly are entitled to everythin on appeal.

Sarahsaver

It is depressing, a friend whose son has CP said you have to imagine your worst days and describe them.

sweetangel63

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

wilkies5

My son has been receiving DLA for a while now and the money comes in really handy. Also remember to complete ICA forms to indicate you are his main carer. This is useful but it does 'cap' the earnings you can have...I thinks the ceiling is £85.00 per week - do check this.

remember to make copies of everything you return...as in a few years' time you will need to reapply. You will therefore need to remember what you have written on the first set of forms.

Sarahsaver

sweetangel63 wrote: »

I'm in the grieving process about my son, always thought it would go away if that makes sense.

I feel opposite to that.
I feel sad that the world is not more understanding and accepting of 'difference'. But it is their loss.
I have known my DS is 'different' for a long time, it is trying to get other people to see that and understand that is the problem. I have had DLA for a long time for him and we do not yet have a diagnosis. Copies of any 'official' letters you have about a child's health may help with your claim.

My DS takes things very literally.
A supply teacher yesterday said she was a 'spy teacher with a camera in the back of her head'. DS got told off because he was trying to test the 'camera' by sticking his tongue out behind her and waggling his fingers.

He is how he is and I would not have him any other way.

finallydebtfree!!

I cant offer any advice but wish you luck in getting what you deserve

My best friends daughter was diagnosed as autistic earlier this year, she is almost 6 now and was originally assesed when she was 2 and a half so it was a struggle for them to get an appropriate diagnosis!

she has just started a special needs school as her statement of special needs has been altered to reflect the diagnosis. My friend is only just finding out what she is entitled to and this advice is mainly coming from the parents at the new school!

I think you parents are wonderful and deserve all the support you can get!

novelli

I have just had to complete the review form for my sons DLA. He has been on high rate for care and mobility since he was 7, he turns 16 in December.
I find filling the forms in an incredibly depressing experience!! U have to go over all the negative aspects. I could only do a little at a time, as it wore me out!!! Ive helped many parents fill out forms over the years, but not had to do one for myself for years, it totally drains u!!!!!!!!!! I also think that we get used to the things we have to do for these children that we forget that actually most of what we do is so much more than for our other children, but we have been doing it for so long we dont see it as anything over and above normal day to day living!! its only when we have to fill one of these forms in that we begin to realise why we are always so tired!!!

Hope i dont have to do anther for a while!!

Swan_2

wilkies5 wrote: »

remember to make copies of everything you return...as in a few years' time you will need to reapply. You will therefore need to remember what you have written on the first set of forms.

very good point

I failed to do this & caused myself no end of grief when reapplying, until I found out that if you forget, you can ask to be sent copies of your previous applications

novelli wrote:

I find filling the forms in an incredibly depressing experience!! U have to go over all the negative aspects. I could only do a little at a time, as it wore me out!!! Ive helped many parents fill out forms over the years, but not had to do one for myself for years, it totally drains u!!!!!!!!!! I also think that we get used to the things we have to do for these children that we forget that actually most of what we do is so much more than for our other children, but we have been doing it for so long we dont see it as anything over and above normal day to day living!!

I can identify with that, it used to take me weeks & I'd write screeds & screeds & get really wound up & exhausted
I eventually found a social worker to help me do the form & I couldn't believe how streamlined she made the whole process
I'm never, ever going to attempt one on my own again


other points from posts above I'd like to talk about, but too late at night for me, maybe tomorrow

wornoutmumoftwo

I'm applying for DLA at the moment as my son is suspected of having ASD, I also have a younger son who is delayed in all areas and it has been suggested that I should apply for him too, (they're 4 & 5).

Sarahsaver

go for it, you must apply. Far too few people claim. Even when DS was a baby suffering with severe eczema we got DLA for him, no one tells you about it unless you ar elucky. I just happened to see a leaflet and thought 'this applies to us...' bathtimes were taking an hour, things like that.
I have something to look forward to :eek: we have a meeting with a consultant next Friday

How is everyone else who posted here? Good to know how you are getting on.