DLA child?

Confusedmum

Ok I am asking here for advice about what to do next. A few people have made rumblings that I should apply for DLA for my child.

At the moment it's suspected Autism, learning difficulties and possible ADHD.

She is under a paediatrician, which the report it quite negative, she's had a salt report which highlights significant social/communication issues. She has a school report which had to be sent to the Dr.

We have school support plan being made, with early years inclusion applied for. Which will move up to a statutory plan at school.

Now we don't have a diagnosis (yet), however she does have significant issues.

Age 4 and doesn't really talk, will completely shut down in public areas, by throwing herself on the floor, or just curling up in a ball and hiding. It takes an age to get anywhere. Tries to take her clothes off at every given opportunity, so it takes an age to go anywhere.

She's on reigns all the time, we bought a buggy and she throws herself out of it. She hates busy places so we have to use headphones to help.

There have been a couple of serious incidents, one at school and home, where we have to put special measures in place as she's a runner! With no sense of danger at all. She will even lie down when crossing a road. As the paediatrician says in her report, it's clear she needs constant monitoring.

We have to use lots of pictures/pecs and everything. She's quite hyper and will try and climb everything. As the Dr said, she's "quite a difficult child" who flits from needing a cuddle, to lying on the floor and trying to hide. This is a constant "battle" whilst out.

Now to me, yes she's hard work, but she's my child and I look after her, the end. However people keep saying to me DLA will open doors for her, funded groups, events, etc. Stuff like Makaton groups etc.

I'm really reluctant, as to be honest we've been in denial about her issues for a while, now we can't be as disability and inclusion are involved at school and we've got to accept she does have significant issues.

We don't have a diagnosis, but people seem to think I should apply, so what would your advice be here?

lovetowinacar

DLA is decided on her level of care and mobility needs in relation to a child of the same age without her disability (or to put in another way a normally progressing child).

Does she need a high, medium or low level of extra care than another child her age would need?

Medication needs? Mobility needs? etc etc etc

It totally depends on her care needs rather than on being diagnosed with anything since if autistic or adhd or whatever the spectrum is wide from severe to very mild.

Hope that helps a little?

Confusedmum

She's not on medication. She does have a significant level of need yes. Well, I just do it because I'm her Mum. However every report she has signifies her level of need as significant.

Does a "normal" 4 year old need constant supervision? Do they lay down in the road and shut down all of the time? Or not talk/understand?

I don't know, I just do it. It's upsetting to have traits of your child picked up on as "extreme" behaviour I guess!

Yes it helps her needs are significant so I'm told.

nannytone_2

you cant put on a form that she has 'significant needs' as that is almost meaningless.
you need to work out what extra care needs she has, over and above another child of her age and give examples.
personally i woulkd say a 4 year old needs constant supervision. but you would expect to be able to reason with them ( to a defree) and expect them to be starting to behave appropriately

rosie-lee

I can't advise on the DLA, whilst my child has a diagnosis our situation is thankfully not extreme like yours.

What I wanted to say is that, after much reluctance to go down the diagnostic route the doors it has opened have been hugely beneficial and brought about a significant improvement in our day to day life.

Hopefully your local authority will run similar courses. If you are not offered, please do ask.

pmlindyloo

As a first read this might be helpful:

http://www.autism.org.uk/dla

As you will read DLA has 2 components - care and mobility.

For low rate mobility the child has to be 5 yrs old.

For high rate mobility the child has to be 3 yrs old. High rate (as you will read) is extremely difficult to get.

pmlindyloo

Some more help and contact details for support with completing the application form:

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/benefits-for-children-with-autism/dla-for-children-under-16/dla-tips-for-parents-and-carers.aspx

Tigsteroonie

The best guidance I have come across is Cerebra's guide to DLA: http://www.cerebra.org.uk/English/getinformation/guides%20for%20parents/Pages/DLAGuide.aspx

It covers not just autism, but children who have "severe behavioural problems and a severe mental impairment" i.e. undiagnosed problems.

Do not worry about whether your daughter requires more care and/or has more mobility issues than a neurotypical child of the same age. Complete the form honestly with the level of care that your daughter does need, and the mobility problems that she does have. The decision-makers will decide whether that constitutes "more".

(From a Mum who used the Cerebra guide to successfully win HRC & HRM for their deaf/non-verbal/ASD/SLD son )

RaspberryRipple

Hi Confusedmum,

When my son was first diagnosed with autism ( age 3 ) I didn't apply for DLA for a whole year even though his specialist health visitor told me to because I think I was a bit in denial about it all and didn't want it to become 'real' by applying for disability benefits but I'm so glad I got over myself and applied because not only does the money come in very useful for him it does open doors to other things.

If you become a member of your local NAS you should get a regular news letter with lots of info on events which in turn will lead to getting to know all the people who can help you with their wealth of knowledge.

From what you have said about your dd I think you should definatly apply for DLA. My daughter has not been officially diagnosed but she receives DLA. She is in a SEN school and there are similarities to how your DD behaves with the hiding herself away ( exposure anxiety ) not wanting to wear clothes ( sensory processing disorder ) as she can't bear the seams against her skin also she can't cope with bright lights and lots of noise, it's all a sensory overload for her and this can greatly affect a child behavior, some children are over sensitive and others are under sensitive and seek out stimulation like whirling dervishes which could be miss diagnosed as ADHD, could you ask your GP if she can be referred to an occupational therapist to check out if this is a possibility.you said your dd wears headphones to cancel out noise, have you tried also putting a baseball cap and a hood to cocoon her a bit from the bright lights in shops etc. The way it was described to me was that the noise from things like traffic and the brightness of fluorescent lighting in public places is like X 100 for a person with SPD so it must be very stressful to have that onslaught on your senses every time you go out. Like your dd, my dd is selective mute and cannot articulate what she is feeling, so I have to try and put myself in her shoes at any given time and adjust the environment ( no bright lights or loud music )if I can or protect her from it ( ear plugs, hats )She has a quiet bedroom with curtains around her bed so she can feel safe and de-stress in her 'cocoon' after coming home from school.

Obviously I don't know if your dd does have SPD but I thought I should speak up in case anything of what I have mentioned might help. You are at the beginning of finding out about everything and there is so much to take in. it took a year to find out exactly what was going on with my dd as her behaviour could be described as 'bizarre'. My dd and ds are teenagers now, and I've kind of learned what makes them tick even though they speak very little and cannot articulate their feelings, so I now know what triggers to avoid.

Have you read about or has anyone told you about exposure anxiety and sensory processing disorder? There is info on the NAS website as it is connected to ASD, my daughter has almost certainly got aspergers With pathological demand avoidance, exposure anxiety and SPD added into the mix and all the professionals involved with her are in agreement about this. As you are finding out, there are many different disabilities that can overlap, it's just a question of finding out which ones your dd has so you know which path to take in regards to getting the systems in place to help her.
Just to end on a positive note,I have had so many people who have helped me along the way, I'm sure there will be plenty to help you too.

Best of luck, hope this helps.

RR

Confusedmum

It's all very helpful thanks, I will process it. I feel it's a bit like claiming money for looking after your own child. But I have been told to see past it as it is a "passport" benefit or some such.

I am still a bit gutted to be going down this path. I pulled her out of her first pre school due to their concerns. I'm ashamed to admit.

sheeps68

Confusedmum wrote: »

It's all very helpful thanks, I will process it. I feel it's a bit like claiming money for looking after your own child. But I have been told to see past it as it is a "passport" benefit or some such.

I am still a bit gutted to be going down this path. I pulled her out of her first pre school due to their concerns. I'm ashamed to admit.

Try to view it as one of the things you need to do to get your daughter the extra help she needs in order to meet her potential.