Aspergers/ASD support thread

Vickieh1981_2

I'm not sure whether it's right to just post on this thread or not.

I have a son who is 8 and was diagnosed in January with aspergers syndrome.

I applied for DLA for him and was told at the Citizens advice bureau that they were sure I would get it.

My friend has a son the same as Andrew and got DLA however today I got home to a letter saying I didn't qualify for DLA and stating the criteria he has to meet to qualify for it and he did meet all of those so not sure why they have turned me down.

I rang them and asked to be spoken to about why the claim was denied but they jsut said someone would call me back within 48 hours so I am no wiser yet.

I am really worried now that we won't get it. I was just so sure I would that I have made plans and thought I would send Andrew to clubs that I really think would benefit him.

I have no idea about how to appeal against this and whether I will be successful. I just burst into tears when I got the letter this morning

Can anyone who has been through this give me some advice on what I should do. As far as I know they did not contact his paediatrician so I am waiting for her to call me back to see if I can get a letter to put in with my appeal

Snaggles

Hi Vicky - welcome - of course it's okay for you to post here.

Sorry about the DLA decision. I haven't any experience of appealing (haven't even applied for it yet ), but I'm sure some of the others may know more. Do you have any support groups around you at all? They may have people who could help with the appeal. When we were going through a bad patch, Ryan's school referred us to Surestart, and a lovely lady came out to see us - she basically came to make sure we were aware of any support groups and facilities in our area that Ryan would be entitled to use, but she also mentioned the DLA forms and said she could help us fill them in if we needed assistance too.

I hope you manage to appeal successfully - if the decision is overturned, I think they backdate it to the date you put the form in, so at least that's something.

Snaggles

Grrrrr, just got Ryan's school report and it is full of comments about his absence.....well, firstly, his attendance is over 90%, so not that bad really. But more importantly, he has had 3 medical appointments included in that, plus 4 days where he was perfectly well enough to go to school but because he had been sick, they wouldn't let him back to school for 48 hours (2 separate lots of 48 hours that we could do absolutely nothing about). He only had a cold too, but is always sick when he coughs a lot, but even though they know this, and were aware it wasn't a stomach bug, they stuck to the rules.

The only other absence he has had has been when he was too upset and violent to go into school. If I had taken him in, he wouldn't have learned anything, and would most probably have ended up being excluded (I have tried taking him in when he's having a meltdown, to see if he calms down, and it ended with a classmate needing hospital treatment ).

And yet apparently, ensuring we improve his absence levels will mean he progresses better at school.....grrrrrrrrrr.

Yet again, I am a shiit parent. :rolleyes:

mandy.h_2

Vickieh1981 wrote: »

I'm not sure whether it's right to just post on this thread or not.

I have a son who is 8 and was diagnosed in January with aspergers syndrome.

I applied for DLA for him and was told at the Citizens advice bureau that they were sure I would get it.

My friend has a son the same as Andrew and got DLA however today I got home to a letter saying I didn't qualify for DLA and stating the criteria he has to meet to qualify for it and he did meet all of those so not sure why they have turned me down.

I rang them and asked to be spoken to about why the claim was denied but they jsut said someone would call me back within 48 hours so I am no wiser yet.

I am really worried now that we won't get it. I was just so sure I would that I have made plans and thought I would send Andrew to clubs that I really think would benefit him.

I have no idea about how to appeal against this and whether I will be successful. I just burst into tears when I got the letter this morning

Can anyone who has been through this give me some advice on what I should do. As far as I know they did not contact his paediatrician so I am waiting for her to call me back to see if I can get a letter to put in with my appeal

its all about how u fill in the forms you have to be very precise the NAS have a helpful download showing you how to do it

and google dla form filling ansd thew one that is bhs or similar is really good

we keepa diary just before and detail everthing i do or say to help ds, such as prompting him to get dressed three times, having to tell him every day to brush his teeth etc

Tashja

Awww Snaggles thanks for the welcome

Your not a !!!! parent (I should know I have met one of them today and got so upset and worked up I have had 4 panick attacks ) It is so hard when you can't even count on support from the school. 90% is god - better then most kids !!!

Just waiting for the 23rd . . . .

T xx

P.s. - How is Natasha !!! xx

sarah1975uk

Hi all, havent been about for a while. Just wanted to update everyone. George still not in school yet. Statement has come thru but is a load of crap and ive emailed the powers that be with my concerns and what i want amending in the statement. Just waiting for an outcome.

Had a call today from the ed psych and has now after 10 years finally formally diagnosed ASD. Not quite sure how i feel. Just feel like ringing every !!!!!! who failed george over the past 10 years and saying i told u so! Hopefully finally George will get recognised for the ASD to get him the help he needs rather than every one thinking Naughty!!

Snaggles

Tashja wrote: »

Awww Snaggles thanks for the welcome

Your not a !!!! parent (I should know I have met one of them today and got so upset and worked up I have had 4 panick attacks ) It is so hard when you can't even count on support from the school. 90% is god - better then most kids !!!

Just waiting for the 23rd . . . .

T xx

P.s. - How is Natasha !!! xx

Oh no, are you okay? Do you get panic attacks a lot? It certainly stresses you out, all of this.

I've suffered with them all my life, but touch wood I haven't had any since I was pregnant (Natasha is doing really well by the way, she's a proper little girlie now, loves shoes, hairbrushes....and has just learned how to have a proper tantrum! How's your little one?)

Snaggles

Hi Sarah, glad you have finally got your statement and diagnosis, even if you have some concerns about the statement.

I know what you mean about the diagnosis - I think that although I was certain Ryan had AS, a tiny part of me was hoping they would say he didn't. But I do really believe that it's just a word on a piece of paper, and should be treated as such. It's a useful tool for getting people to take you more seriously, but it doesn't change who George is.

Tashja

Sadie is great !!! 9 months old now - it is going so fast

I got severe PND after having her so trying to deal with that on top of DS is a bit of a nightmare . . . but what can you do - you just get on with it.

Sarah - Glad you have a diagnosis hun - I would ring everyone too, in fact I might start keeping a list - lol

T xx

Snaggles

Wow, I can't believe she is 9 months old already. You really must feel like you have your hands full, coping with a baby, plus all the aspergers stuff and battling PND at the same time.

Does anyone else use the 5 point scale thing? We read a book (I think it's called 'A 5 could make me lose control' or something like that), and we now have a 5 point thermometer to help Ryan tell us how he is feeling. It's working really well. The 'points' (which you just change to suit your own child) are:

1 - happy
2 - niggled/uncomfortable
3 - stressed/really nervous
4 - mad
5 - lose control

If he is getting to a 3, 4 or 5, he goes to his room for a bit and puts a 'do not enter' sign on the door until he has calmed down. Since we have put it into practice, we have had much less violence from him at home, although he is still lashing out when we are out and about, as there often isn't anywhere he can go to calm down.