AIBU to apply for DLA?

[DLADilema]

I post quite regularly, but usually name change for anything specific to my family for fear that a quick advanced search would quickly identify me.

My Dd is currently being assessed for Autism. In all stages so far the consensus has been that she shows definite signs of being Autistic.

It feels like a relief to finally see myself as a good mum who just can’t do anymore than I have been - I’d always felt a bit like if I just tried harder, or was a ‘better’ mum then these problems would go away.

So, I’m considering applying for DLA for her. We have got by so far without this, but a few people have suggested that I should apply. It doesn’t take me long to identify things I have purchased specially because of her needs eg: books, laminator, extra curricular lessons (much further away than the nearest available, because of the extra support and understanding she receives from teacher).

I feel really strange about it. I want to claim for her, but something is holding me back. Maybe I feel a bit ‘grabby’. I don’t judge other people for claiming it - dh even told me Katie Price claims it as it is for her son and not for her. I feel like we don’t deserve it because we have been struggling for so long but we have survived.

To make it an aibu, although in honesty I only posted her for ‘traffic’ - aibu to claim DLA even though we have (just about) coped so far on our own?

If it is relevant we have no savings, and significant debt that we are managing and very slowly reducing.

Yes, you should claim it for her. If she gets it and you dont need all of it, then you can always put some in her bank account for later

Thanks threelittlesoliders. I wish there was a document that outlined what care a child should require at certain ages, to correlate with this DLA form. Then I could check if it is normal care or over and above.

I was surprised upthread that someone said that having Dd in my bed while dh uses hers and as a result only my sleep is disrupted doesn’t count. If I didn’t do that, she would be up and down all night, awake herself, disturbing dh sleep and I still would have disrupted sleep. But because I have made a sacrifice and solution for two out of three of us then it doesn’t count? That has baffled me.

But now I’ve reread that post I wonder if I’m just being defensive and prickly as the poster didnt really even say that, just that I have to outline how it disrupts my sleep...

Argh! This is horrible. I want to claim for her, I want to gather it up for her if she is entitled. I want to go onto Amazon and grab the latest book I’ve been recommended for her or buy her three new squishies to replace the latest casualties without thinking how I’m going to pay for everything this month.

You’re overthinking and being emotional about responses (totally normal and understandable!)

Be more detached; write pretty much what you’ve said above - DD has to sleep in my bed as otherwise she would do x, y and z and none of us would sleep. As it is I am woken # number of times and I have to do § to settle her.

Walking - I HAVE to hold her hand rather than choose to, as otherwise she would run away, not stop at kerbs, become excessively anxious, etc. (Whatever applies).

All the way through you have to remember - filling in the forms is NOT a criticism of your child or your parenting. You are explicitly specifying what needs your child has AS A RESULT OF THEIR CONDITION that mean your parenting has to involve x, y and z.

And sadly a child in receipt of DLA is often perceived by professionals as being “properly disabled” and thus entitled to more in terms of education, health, socialising, assistance. It’s almost like an official recognition of their needs.

Be strong and be kind to yourself!

Claim everything she is entitled too and don’t think twice about it. I would speak to one of the autism charities to get advice on this.

Christ alive OP! Please claim, that is what it is there for. I have found that those without an ASD child have no understanding of how difficult a road of parenting it is and indeed the additional expenses that arise because of it. I didn't know about DLA, my son was diagnosed very early but I was contacted by a charity to ensure that I claimed and also to help me fill in the form. I did find that very difficult, you are listing the worst aspects of your child, for want of a better description. It is emotionally draining. However, my son received an award that now stands until he is 16. It has made life easier for us. I also receive carers allowance and enhanced tax credits. As a single parent trying to cope alone on little money, it has meant that I can do things and buy things that I would otherwise not be able to. All of it has helped him grow and develop. I would hope it would make life significantly easier for you. Good luck!

I've only scan read the posts ( am actually at the hospital waiting for DS whilst he is having an assessment for behavioural issues!) but if you can, try and get some help with the form. I believe CAB can help? Or maybe an Autism charity?

Definition of night time and day time

Night time is defined as when the household shuts down for the night, or would shut down for the night if it were not for the caring responsibilities. For example if you would usually go to bed at 10.30pm if you could and then get up at 6am, that is what counts as night time, even if in reality you are often up at night caring for your child.

This definition means that in most cases getting a child ready for bed and settling them to sleep counts towards the day time part of the rules, because it happens in the evening when the adults in the household would usually be up anyway. If a child then wakes in the middle of the night and you have to get up, that would usually count towards the night time needs, because if it were not for the child waking you would be in bed.

Prolonged or repeated attention is needed at night in connection with bodily functions.
Prolonged means about 20 minutes and repeated is twice or more, we discussed the meaning of ‘attention’, ‘bodily functions’ and ‘night time’ above. For example if you have to be up at night time for more than 20 minutes to help a 14 year-old to get up, use the toilet and then get back to bed you could qualify under this rule. Soothing a child back to sleep can count as attention with a bodily function, but only if it is ‘substantially in excess of the sort of help that other children of the same age need.
The child needs watching over at night for a prolonged period or at frequent intervals to avoid substantial danger.
‘Watching over’ means someone being awake to watch over the child. Prolonged means about 20 minutes and repeated is twice or more, and we discussed the definition of ‘night time’ above. For example if a child wakes in the middle of the night, and you have to get up to watch over them because it is dangerous to leave them unsupervised, you could qualify under this rule”

Hope this helps to clarify

Honestly OP, read the Cerebra document. It is super helpful in restructuring your thinking to take account of all the millions of tiny adjustments that you make to your life to facilitate your child. That's what you document. And then the DWP decide if those are age appropriate or not.

Beaverhausen - I find your post supremely unhelpful. You're not a hero for not claiming the benefits your daughter is entitled to - you're doing her a disservice. If nothing else, you could put it into a savings account for her to decide what to do with it herself.

Cerebra is the DLA bible! Definitely have a read

Thank you everyone. There is a local autism support group meeting tonight. I had already considered going and they said I could even before she gets an official diagnosis. Im so confused. I think I need to spend more time with people who have similar experiences. So I think I will go.

I think sometimes I might say to a fellow parent, “Dd is in my bed every night” and for me that means every night. Then fellow parent might say, “oh mine too!” but maybe for them it means more regularly that they would like, iyswim. But then I hear that and I think “oh right so it’s normal.”

I’m sure it’s no great surprise if I disclose that I think I am on the spectrum too, I had a very unhappy childhood trying to navigate school and mask myself to be like everyone else. Still do in a way. But this means I can’t even compare her to my experience and hold that up as normal.

In brief if your dd sleeps in your bed and doesn’t wake or need help during the night, it doesn’t count.

Good luck.

Cross post LunaTrap I have downloaded the form -
Ring up for a form instead then you get payments backdated for up to six weeks.

Please claim. I think what spurred me on to finish it is realising the system almost sets you up to fail because it is so tricky, exhausting to fill the damn thing out.
I also am on the spectrum. In a way it helps because you can be rational. And get help to fill it out. The CAB and autism charities can be super helpful - esp as they know what NT charities do.
Sleeping with your child is not "normal" (I do it too). Each time you have to think about what would happen if you weren't there. I think that you have to be woken more than 3 times or disturbed more than an hour per night. (Night also seemed to be classed as 11pm til 7am.)

OP you do not need to wait for a diagnosis to be able to claim. Read that again - you do not need to wait for a diagnosis.

I sometimes feel guilty for claiming DLA for my DD. She looks normal, she goes to main-stream school. Then you look at the other kids in her class. They are cycling to school or walking on their own. They sleep alone in their own bed. They can use a knife and a fork at the same time. They can tell the time. They dress themselves etc etc. You get so used to your normal that you forget that actually it isn't the same as everyone else's normal.

I use DD's DLA for private singing lessons and other activities that give her confidence. She used to have 1:1 swimming classes until they stopped doing them at our leisure centre; she couldn't cope in a class of 8 with teacher on the side and the acoustics of the pool. Anything to make her life a bit easier.

We have a CEA card for the cinema so I don't have to pay to go with her, which means we can go twice as often. You get free or reduced entry into some attractions (I've only just found this out and she's been getting DLA for years) so again it gives you more scope.

What you need to do on the form is really emphasise that what you have to do is not the same as for a normal 7 yo. What you said about her being in your bed - spell it out like that. Mine sleeps with me because she needs to be in close proximity to someone else all the time, thanks to anxiety. It's really draining, especially when people tell you "well I wouldn't put up with it". It isn't a question of not putting up with it, it's about my DD's mental health.

You do not need a diagnosis, however you do need some evidence of needs. Otherwise anyone could claim!

It doesn’t have to be from ‘experts’ or a diagnosis. It could be from school for example if you are claiming your dd struggles to dress, needs lots of help, prompting, takes a very long time etc School could back you up with changing for PE etc. Or if you are claiming she needs a level of 1:1, then she would possibly need the same level in school to eat, or on outings etc.

Or your GP, assuming if your dd would not sleep all night, every night, you might have spoken to your GP about it etc.

assuming if your dd would not sleep all night, every night, you might have spoken to your GP about it etc.

I haven’t. I wouldn’t consider medicating her if I can manage it by being in close proximity to her. I don’t really understand what seeing the go would achieve. I have mentioned it at each of our assessments so far. Can I request copies of those notes?

I claim for my son who has autism and is in remission from cancer. We could have claimed it whilst he was having treatment for cancer but we didn’t and like you I felt we were being grabby. It’s only when I realised that it would open up doors for him (extra 121 funding at nursery plus 2 year old 15 hour funding) did I realise I was being daft and actually depriving him of extra support. I gave up my job when he was diagnosed with cancer and haven’t felt able to go back (due to multiple appointments for my son) so I now also claim carers allowance which means I will still have state pension contributions whilst I don’t work.
Please look into local charities who can help with the form filling exercise. FWIW my ds didn’t have his ASD diagnosis when I applied and was awarded (but was in the process and had a diagnosis of global developmental delay). We still got awarded mid rate I think.
Good luck with it all and please don’t feel any guilt.

Does your dd actually sleep when in your bed? If she sleeps, forgot about night time needs and focus on other areas.

There is a part on the DLA form where you can list professionals involved in your dd’s care, it could be paeds or other experts, GP, teacher etc.

The DLA should write to them if you don’t supply evidence. I think you have to tick a box asking can they contact school and other professionals etc.

Or you could ask professionals, GP, teachers etc to write you a supporting letter and send it yourself.

I had not spoken to my GP about sleeping when DS was awarded higher rate care because he didn't sleep.

Are you a DWP assessor shed?

OP - I'm not sure this thread is serving you well any more. Fill in the form accurately and honestly and attach as many supporting statements/assessments as you can.

I have another guide that someone here emailed ages ago which was really helpful. If you'd like me to email it to you, drop me a pm.

Orchid, I have no idea why you are having dig!

I am not trying to discourage the OP. I’ve just stated she will need some evidence of need and given her some examples of where evidence can be gained, as she does not have any reports to send.

Anyhow OP I’m not suggesting that you should have spoken to your GP, just IF you had, your GP would have been able to write a supporting letter.

Many years ago I got DLA for my youngest son. I remember writing that if he fell out of bed in the night, he would stay on the floor and cry until I got up and put him back in his bed. This could happen once a week or several times a night. You have to write from the worst situation.
Never did work out why he just stayed on the floor and cried, he was physically fine!

Thank you. Yes, I’m sure I’m just being over sensitive but I do feel a bit ‘cross-examined’. I’m not sure why I wouldn’t put everything down and let the assessors decide if it is relevant.

I think this thread has been a mixture and I thank everyone who has helped, but I agree it has probably served its purpose now.

Apply for it and if you get it it's because you're entitled to it

My apologise if you have felt cross examined by me. That was not my intention.