Could I please ask for some help with the bl**dy DLA form?

[siblingrivalry]

Hi

I am doing DD's renewal form and it's a new type. Seems to be specially designed to trip you up and commit to certain answers

For example, it asks you to answer yes or no to the following question:
'Can your child recognise and react to common dangers?'

DD is 11 now and I could probably trust her to stay away from ponds/busy roads etc BUT when she is anxious or stressed or has sensory overload, she is incredibly unpredictable and I wouldn't feel confident that she would be aware of dangers.

There are quite a few other questions where there isn't a simple 'yes' or 'no' answer eg 'Can your child communicate with someone they know well?'
She has AS and other dx and can communicate her basic needs. However, when she is over anxious or has 'shut down', she withdraws and refuses to talk to anyone (even me) about what's bothering her -she just can't find a way of doing it.

I was thinking of leaving the answers I'm unsure of blank, with a prompt for the assessor to read 'other information', where I can elaborate.
Do others think this will be acceptable?
Otherwise, I can't answer all of the questions properly, because as we know, with ASD there is rarely a definitive answer.

God, I need chocolate on tap to get through this

I may be right or wrong on this but I tick both 'yes' and 'no' answers on questions like that. Then I use the comments box or type out on additional paper that my DSs reactions vary and are unpredictable. For instance in the 'common dangers' question, one day he may be hyper aware, the next day he may just run off - as he does frequently, with no regard to danger at all.

Again with the 'communicate with someone they know'. I tick yes and no and explain that because my DS can communicate okish with someone they have learnt to know and trust, it is in simple sentences, often in the third person and he will only speak because he knows them. For any stranger, he would curl up on my lap and say "I don't know" or "stop talking at me". He also has a strange way of talking and I frequently have to explain to my family what he is trying to say, even though it is clear to me.

So yes, I agree with you approach. I have used that myself (rightly or wrongly - I'm waiting for his renewal as we speak).

Have you seen the Cerebra Guide? This may give some useful tips

Always answer the questions based on the worst case scenario, she may not always needs help but she might therefore she needs help etc Good luck, try some of the charities, we have a child with CP, SCOPE helped us. Chocolate is a must!

Thank you
MsNobody-the Cerebra guide has been a Godsend, particularly as it is one of the few which has been updated to accommodate the new questions.

I am going to follow your lead and tick both boxes- they may come back to me about unticked boxes, which only just occurred to me. Good idea of yours!

Robski, I agree and am trying to picture her when she's struggling (sadly, most days at the moment).
I have chocolate now-dh is feeling guilty at how stressed I am, so went to the shop

robski. I was told years ago by a SW to fill the form in based on the worst case scenario. But I decided not to do that as my DSs behaviour is so variable. If I based it on a bad day I would be saying my DS doesn't speak, eat or sleep. That's not true. It varies.

Most nights I get 5 hours sleep. Some nights I get none as it depends on the weather (noises upset him greatly).

Oh, and I agree, chocolate is a must

x-posted sibling. Good luck with the renewal. x

Thanks- I'm incredibly nervous about it. Just can't wait til I can take the thing to the post office and be done with it.
DD has had another bad day, so it's hard to find the mental energy to think straight and to be articulate

It's s depressing, isn't it, to have to sit and think about all of your child's limitations?
Still, I will get there.

I would interpret that as ALL common dangers, RELIABLY, ALL the time (because you only have to be unsafe once, after all) and tick no.

Yeah, Ouryve, that makes sense, thanks.

She may know not to grab a pan of boiling water, but we've had near-misses with hot baths and showers-and that's just one common danger.

She usually knows to stop at a busy road HOWEVER, when we were on holiday last year, we had to repeatedly grab her when she kept stepping out.

I think that I just never assume she's aware of dangers, because there are so many other factors to take into consideration. I can't rely on her awareness at all.

It's important to remember that the test for Children's DLA is 'care needs significantly higher than a typical child of their age without disability.'

That means, that when you are looking at the question, you shouldn't take it literally, but you should take it to say:

"'Can your child recognise and react to common dangers as you would expect an 11 year old to do?"

So, if you were to compare your daughter's danger awareness with that of a two year old, or even a 3 year old, you would tick 'yes'. But you're not doing that. You're assessing the needs of an 11 year old.

You should be ticking 'no', then giving further detail in the comments box.

I actually think that it's important to give examples of when things are 'less bad' (not phrased in positive language) to show that there is variability, because IMO that increases the risks, not decreases them. For example, if a child will always bolt at a roadside, you may develop an instinctive reaction to hold your child's arm as you approach. If they sometimes act with some awareness, then at other times not, you have to be so much more alert to assess what they are like on the day.

"'Can your child communicate with someone they know well?'"

Again...what is her communication like compared to a typical 11 year old? Don't forget, communication is both expressive and receptive. So:

-Can she understand her communication partner?
-Does her communication partner understand her?
-Does she keep her attention on the subject?
-Does she receive cues well, or does she just ramble about her own interests?
-Does she cope with communicating with distractions?
-Does she communicate with some familiar people much better than others?

Etc...

Think outside the box. The question is only a closed question if you let it be!

DD1 is quite a complicated little thing, and my forms must make the decision maker weep! I type all my answers, and if the text is too big for the box, I print it, stick it in, and fold the paper!

Lougle, that's what I do , too -the form ends up 6 inches thick

I suppose, as an 11 year old, dd hasn't got a reliable concept of the dangers her peers deal with automatically. All it takes is for a loud motorbike, or a wagon, to thunder past her outside and she will panic and lose the ability to think straight. Her hands go over her ears and she tries to walk away from the 'danger' as she perceives it.

That's a good point, about variables. I am trying to find a way to say that her behaviour is so unpredictable that I never rest on my laurels-but without inferring that dd has days when she is 'fine'.
I don't want to imply that she can't do anything her peers can, but that she is on par with a much younger child.

Sometimes, she can cross a road with me beside her, by watching the traffic and listening. Other times, she will say 'It's safe' and a car will be coming out of a side-road. At the moment, she is learning to deal with looking left and right; she just can't cope with the additional need to check other places.

Do you think it may be helpful to say that she is working on various life skills, but that they are more appropriate to a much younger child?
For example, I ask her to check on her bath to see when there is enough water in it, but most 11 year olds would be able to run and take a bath unsupervised?

It feels like a minefield!
Thanks for your help.

I use 'on a normal day.....' 'on a better day.....' 'on a worse day....' and 'on the worst days....' if it's variable. Then I make it clear that the 'normal day' is normal for her and that by anyone else's books it would be a verry bad day

Great advice from Lougle and others. I think that is a really important point - concentrating on what is 'normal' for her and how that is different from 'normal' for a child of her age. Yes, there will be good days and bad as all children have, but 'normally', would you expect your child to be able to do these things. If no, tick no and put in as much information as possible.

I have all this coming next year!

I just had to fill this in for the first time and asked our Portage Worker to help. She said to always use the worst possible case, so if he has 5 good nights to 2 bad ones then refer to the bad nights. "luckily" DS1 has 6 bad nights to 1 good one so no problems there LOL.

She also said to use the phrase "compared to other x year olds" all the time. I added at the end that I run a Toddler Group so I'm comparing him to over 100 different toddlers I've known and he's behind all of them in his development!

I used the word "reliably" alot, as in "he can't reliably do this thing" for times when he came sometimes do things if he's in the right mood. Also, with an older child it's not just the physical ability to do things that matters, it's having the will to do them too. They may be capable of dressing themselves but do they have the ability to know which clothes to choose or even to realise they have to do it by a certain time in the morning so they're not late for school?

My form must have been good, we got middle rate approved in just one month!!

Good luck!