Filling Out a DLA form

[moira199]

With the help of a social worker, I am filling out the dreaded DLA form. It's not actually as bad as I feared but although DS is definitely ASD in that his language and social interaction are limited and certainly nowhere near age appropriate, it's hard to pin down what it is we do that is 'extra'. He sleeps all night, eats well and although he does not respond like a normal child, he is well behaved and placid. In fact he is almost overly compliant in that he will carry out any instruction that he understands. He is easy to take out although he does need a higher level of supervision than a non ASD child. Is that the area that I should focus on?

ooh, just the thread I need.

sorry, not much help, I know. I've been stuck on dd1's form for ages, as I have exactly the same problem as you - dd1 is too compliant, and whilst she is indeed a lot more work than NT childrne her age, it is hard to pin down why.

will have a look through what I've already written at lunchtime (when dd goes for a rest!) and see what I've put.

Meanwhile, will hope for someone wise to come along and solve our dilemma!

I made a point of mentioning every thing that he needed more help woth than any other child his age

Also sad but true I was given the advice to make worse case senario

Mention about sleeping too and waking in the night if your DS does this

MIne does you see even now at nine and you wake up to shampoo conditioner every where or half made sandwhiches in the kitchen in a right mess

Guess what I am a very light sleeper now a days !!!

My ds is compliant too but he has rituals that he has o carry out and you have to watch himlike a hawk most of the time

Do they have mood swings
Do walks to the shops take longer because they get distracted

do things get distroyed out of interest in them

oh thought of another one how they interact social

as it asks how the money would help eg being able to take them to more activities

I too was advised to describe worst cast scenarios which I suppose is good advice but it goes against the grain of trying to keep optimistic. I think that is partly the problem I am having is that I don't want to make things sound worse than they are or even just to put down on paper how big the differences are with an NT child. I was also advised to stress how much effort goes into teaching life skills like using a fork - ie my NT 14 month old can use a fork very well and he was not taught to do it he just picked it up and started eating. I think it is trying to itemise all the little differences that add up to a lot in the end.

It is a very upsetting form to fill n isnt it because you are putting down on paper real differences it took me hours
I wrote a little diary for a week before hand which was upsetting in itself

On my form I put all the extra things we do for DS- so for example as he has no speaking vocabulary I have learned PECS and use it at home. AS he needs help with social interaction I spend more time supporting his play. Also extra supervision keeping him safe making sure he doesn't fall down the stairs etc. Also extra supervision and guidance for things like taking DS swimming and any activities. The fact that he doesn't learn well from observing people so has to be taught most things hand over hand etc.

You have to be careful about the way you describe the time spent- frequently is more than sometimes. ALso add in as much evidence from professionals- doctors Health visitor, speech therapist, OT, etc,

There are people who can help if you get stuck- Welfare rights officer, CAB or if you have a disability rights office in your area.

Here is a guide to help:www.bhas.org.uk/freeguides/dla-child-mentalgrounds.pdf

www.bhas.org.uk/freeguides/dla-child-physicalgrounds.pdf

I would include things like:

• What you have to do to help/make ds understand instructions.

When you're used to phrasing things very simply, using picture cards, or giving general visual clues you don't always realise that parents of NT children just don't do that. The clue in your OP is that your ds is compliant when he understands the instructions.

• Acting as a go-between for ds and other people and generally stepping in to help them understand each other.

• Any preparation you do to help get ds to where you want him to go. With my two I still have to warn them ages in advance that something will happen, give them countdowns, explain what will happen umpteen times, show pictures if needed etc.

• Detail any rituals or routines. Again it's something you tend to presume that everyone else does. Generally they don't!

Mumsnet posts can be useful too. It can be hard reading about how everyone else's child could dress/wash/talk/be left unsupervised at x years but it's also a useful indicator for DLA forms. When I filled mine in I followed the format of "Ds is unable to do X. He needs someone to [describe the help given]. Without this help Y would happen. A normal child of ds' age is able to do X without any help." It's hard but it sets out the individual differences between your child and others.

I agree; focus on

1. the things he needs more supervision with 2)extra care he needs, even if that's you helping him with social situations 3)the extra teaching you are doing to help him to overcome his challenges, whether that's carefully chosen trips to places that will be stimulating or other ways you're finding to help him learn and develop.

Remember you're comparing him with a theoretical 'average' child. It doesn't matter that you would have had to entertain the 'average' child for the day anyway, it matters that you were doing something special to work round/ for your DS's needs.

Don't discount very small actions, such as reminding him about something especially if you do them often.

Remember to include any help that's provided by others so taking him to a specialist playgroup etc- it doesn't have to be provided by you

I was warned that putting the worst case scenario on paper would make me feel terrible - I kept thinking "but he's not that bad is he?"
Include everything which takes you more time than the average child - eg 25 reminders to put his pants on, touching every bush on the way to school or meltdown, holding hands or his coat to make certain he doesn't just run across the road. The time it takes to iron out today's problems and talk about tomorrow before he can go to sleep and I get some time off. Going to bed after midnight repeatedly... Not coping in supermarkets... How many toys are dismantled the day he is given them... Needing to stay with your child during activities when other parents can nip off to Tesco... I even included how many extra pairs of pyjamas we end up buying!
Good luck!

Many thanks for all the helpful suggestions, I have a clearer picture of what to focus on - lack of normal understanding, limited speech, need for vigilance and supervision, the need to help him learn even very simple social activities. I think I know what I need to say, it is just hard when I don't want to make him sound like a vegetable that doesn't understand anything when that's not the way I see him. Although I don't believe in building up false hope, there have been so many hopeful signs recently that it's hard to backtrack the reality of his serious developmental delays

Thanks again.

The important thing is not to focus on what's 'wrong' but on the extra care/ teaching/ attention that he needs and how much of it he needs. Saying what's 'wrong' and how awful it is makes you feel bad and doesn't tick any of thier boxes, although you obviously have to explain why your DS needs the extra help. Doing it that way worked for me and the form was much more positive than the version that a professional wrote for us, although I have to admit, it still didn't cast DS in the positive light that I want people to see him in. Good luck with it.

Keep a diary for a couple of weeks so you can see things written down for yourself. Because you get used to your child, it can be hard to look more objectively and think "no, this is not typical, my child does need more help." When you say something your child needs help for, put in how that compares to a child their age who wouldn't need help in that area. Eg one of the things I pointed out with Ds1 was that he wasn't toilet trained, whereas most children his age would be, at least in the day. The people reading the forms and making the decisions aren't experts, they have to go through a set of criteria and your form.

I've just looked over the bits of dd1's form that I'v already done, and I've filled it in as has been suggested here - lots of emphasis on how much help she needs (I find this quite hard, as dd1 is my eldest child, so comparing her to "normal" is not that easy - everyhting I do for her has been natural extension of a situation over the last 3 1/2 years...)

tbh, I am struggling woith the form for the same rreasons as you - not wanting to make out that dd1 is worse off than she is, but I have recently come to the conclusion that it doesn't matter what the people who read the form think about dd. I know that she is not as bad as it comes across on the forms, as does everyone else involved with her. But (and it's a big but), she is a lot more work (even in the hands-on, supervisory way) than a NT 3 year old. There is nothing she can do for herself (even things she can do, she doesn't want to). It is just like having a large, amiable baby around.

Dd1 is very passive (as I think, you said yor ds is) but this can be as much of a negative as a positive. It means she will sit doing nothing until directed. It means she will not eat until told to. Or drink until reminded. Or get up to get a book/toy/puzzle. Once she has the book/toy/puzzle, she will sit there with it until reminded to do something with it. And then the next action, and the next.

None of this is any more difficult than parenting an NT child, but it is a lot more constant and very wearing. and so, if this means that I have to emphasise dd's negative passitvity for the DLA form, then so be it.

Thanks for the good advice to separate out my feelings about DS with the person reading the form and the feelings they might have - after all they will never meet my son so it really does not matter. One area where I really see the difference is that it is very hard to make joint outings with both DS's due to the high level of supervision both need whereas I see lots of mums outs with a baby and an older child all the time. I would love to take both DS's swimming but it's just not possible unless DH takes time off work.

On the positive side and not for the form, DS can now ask for 'Onj Juice' and 'Affel Juice' ( Orange or Apple Juice) as opposed to just 'Juice' and we haven't taught him this, he has just started doing it!