Step this way parents with experience of DLA and aspergers / ASD

[OneDS]

I am filling in my form for DS finally and I am almost finshed with it Woohoo!!

I am on Part 24 Help the child needs when they go out during the day or in the evening.

Has anyone done this and can rememebr what they put roughly?

DP just leaving me to get on with it and I am desperate to finish it as it's driving me crazy and will be one less thing off my list.

I am finding this form calls for one to be very repetative, I haven't even tried writing in the tiny boxes, have typed it all on laptop and intend to send it in typed, with each box saying see additional notes p7).

If you email me at [email protected] I'll send you my Part 24 for ds.
x

Hi

Every time I do this I think 'I must take a photocopy' and do I????

Anyway casting my mind back I think I focussed on the vulnerability of the child so the time taken to process information, not respond appropriately to situation, panic, talk to strangers inappropriately, dealing with traffic. I put a lot about interpreting the world and safety. My chap is quite safety concious but its all a bit hit and miss when it comes to crossing the road as he can be thinking about something else. He could be safe but then again . . . Likewise if someone stopped him to ask him the way he might be OK but he might say something daft. He might be able to tell that someone or a group of people were being unpleasant to him but wouldn't know how to deal with this.

The key is to remember How does my child differ to one who is 'normal' of the same age. Mines now 13 (about to be 14 - how did that happen!) and most 13 year olds are going out and meeting their mates in town and being allowed to cycle to somewhere local. I wouldn't let mine even if he dreamed of asking because although it could all be fine it could all be awful and if he started being quirky (bobbing up and down mainly) and people started taking the piss out of him I (and he) would be devastated.

Dunno if this helps.

All the best.

DS is only four and this is what makes it harder to compare.

However I hae pointed out his high anxiety levels, lack of awareness of danger social 'rules', toiletting issues/changing.

I have asked some of his friends mums what their dcs do and need help with and this was a real eye opener - it's amazing how much us mums just get on with on a day to day basis, it is our 'normal' so it's hard on lots of levels to compare to an NT childof the same age isn't it?

Typing it out means I have most of it on my laptop for future reference. I have also had a couple of relatives asking for a read of it too, as some of them genuinely don't understand what is wrong with DS, how he struggles, etc and want to understand.

Streaky Bacon - I will send you an eamil now thank you.

Have emailed you
I type my forms too, which is why I have it so readily to hand!
x

I used this guide when i applied for DDs DLA - i dont think i could have completed the form witout it tbh

cerebra

HTH

Yes I have a cerebra guide it's fantastic thanks twocutedarlings.

I also found a post on this link very helpful too for nayone else struggling.

I have to say I have found the internet such a valuable resource regarding DS.

For ds2 I think I wrote about what help he would need to be able to do the same activities as other children his age. A lot of it overlapped with other parts of the form IIRC. I think as an example I wrote about taking him to a soft play centre, so things like:

• preparing him in advance so that he knew where we were going and how we would get there (visual timetables, counntdowns, route plans etc)

• the journey with things like ds2's lack of awareness of danger, tendency to race off ahead regardless of traffic or other people, meltdowns in the street etc and how all those things needed to be dealt with

• toileting issues while there, eg ds2's constant wetting accidents, taking changes of clothes, avoiding toilets with hand-driers in them

• level of supervision needed, esp with ds2's lack of awareness of danger

• preparing him for when it was time to leave (similar to countdowns and warnings needed for leaving house)

• journey home afterwards.