To ask for advice on using child's DLA?

[kerrypn]

DS receives HRC and LRM (ASD, new diagnosis), Im feeling really overwhelmed and whilst I am sure there are a million and one things I already spend the equivalent amount of money on (replacement clothes, shoes, laptop, taxi fares for appointments etc etc!) I feel weird about it, probably as he is nearly 9 and we have only just got diagnosis and dla, im really grateful for it and want to use it for DS-what do other parents use DLA for that improves life for their LO? Could I use a little bit to make Ds's siblings lives a bit better too (they miss out a lot as DS needs constant supervision) sorry if it sounds stupid, im just feeling overwhelmed with it all

Really helpful supportive thread.

OP. Id start with some swimming lessons and maybe a cleaner to help out

Same situation as you OP, ds1 (9) has just been awarded DLA and we're not sure how to use it. So far we've thought of a water feature for the garden, to develop a sensory area, loft/cavity wall insulation as our house is cold and he feels it, private lessons for horse riding/swimming as he can't handle group lessons, and maybe a big bean bag. It's hard though, because I don't want the other two boys wondering why ds1 is getting new stuff and they aren't....

I'm also looking at the Spacekraft site and considering getting him some fiddles for school (although maybe they should supply them).

www.spacekraft.co.uk/shops/sk/Default.aspx

At the moment we are using ours to pay for speech therapy. In the past we have used it for a trampoline, then another when the first one broke, an Ipad, sensory toys and books.

DS is quite a fussy eater and his diet is quite expensive - it nearly doubles the price of our food shop so some of it in the past has been used to help there.

Oh and shoes! We go through lots and lots of shoes.

Ouyvre - I would try the NHS again. We got pullups on the NHS until very recently (we stopped because we dont need them any more rather than the NHS stopping them). We got ours delivered by NHS via Tena Home Delivery.

DS gets MRC and LRM and its used to pay for days out, holidays and a little bit towards the household budget because I can only work within his school hours as he can't go into childcare. Last year we went on a holiday to legoland, a holiday to center parcs, he got a big trampoline and new tri-chews. It's paid for swimming lessons in the past but now he has them at school. It pays to replace/repair things he breaks like doors and his dvd player for his school taxi. Use it for whatever you want.

We have 5DC,two of our children are registered disabled ASD.We use the money to help make everyone's life easier.I'm also disabled now,I don't just use my disability money for myself because me being disabled affects all 7 of us,so I use it for our family.

It helps us pay for things like Merlin passes,days out,a holiday every year.Extra clothes,shoes,electrical items,toys ect that we go through more readily because of having two children that are autistic.

This is such a nice thread, and shows how many thoughtful and helpful posters there are.

Can't add much more OP, but I've also nominated a family in the past for a wish from Starlight.

So add that as you can self refer, or get a nomination. It's separate to the family fund and from memory it doesn't affect any family fund entitlement.

It's a small recognition of the extra costs that occur that having a child with a disability brings. I get DLA for our youngest - I don't put it towards the costs I know we will incur in hospital parking fees etc but it covers piano lessons (outside the home) and general expenses in the household.

It sounds like it will benefit your DS and you and will hopefully go some small way to easing the burden.

If he hasn't already got his own bedroom I'd use it towards that.

Most people just incorporate it into their budget just like people do with child benefit.

Other possibilities could be: a specialist diet, soft furnishings if he has sensory issues, taxi/car travel rather than public transport

We have bought a Hot tub with our sons dla, he has asd and really suffers with sensory issues. The calming effect of the water has really helped him and us too ;) he is now sleeping better and we can really tell the difference in him when he hasn't been in for a couple of days !

I recognize a lot of things that I spend ds's DLA on. He was awarded it about the same age as your DS and it made a vast difference to our crap lives. Things like:

"Replacing things. We have lots of broken things"

Attendance at clubs for dc with disabilities. Most of these have receiving at least Middle rate care component as their admission criteria.

An above ground swimming pool - at least a 12ft one, preferably with a metal frame. You will end up turning into a pool attendant, obsessive with chlorine and alkaline levels, but definitely one of our best buys.
Even if it takes up the entire garden. Hopefully you have one.

A 3 seater garden swing seat - relaxing and can provide shade from bright sunshine.

Football - we had a failed attempt at this about 18 months ago - what I think I should have done is try and find an older club member to help with integration and mentoring, possibly someone interested in coaching and/or special needs education as a career direction, and pay them to help ds with this. I'm going to try this approach this year with the Cricket Club.

I cant tell you how grateful I am for all the lovely, lovely replies and ideas, I am methodically working through the suggestions and now I can see how much I can do extra for DS and us all really. I suppose because we have managed for 9 years without the additional help, we are just used to replacing the furniture every 5 mins, shoes last two days (!), having to buy special foods etc etc
We are very lucky that we have a decent sized garden so a lot of the outdoor ideas are really helpful-he has a trampoline but isn't really keen on it surprisingly. He desperately needs a room of his own, we live in a 3 bed atm, he shares with his younger brother. I qualify in 5 months and have a job lined up already so I am hoping once that happens we can afford to move :)

One thing I am really struggling with atm (bit off topic but hey ho) is because he struggles so much with a change to his routine, if he goes to a friends in the week (or they come here) we get a two day meltdown following it. I am trying to work out if the social benefits of him going (huge step forward he even has a friend!) outweighs the fall out afterwards :/ Does anyone else have this problem?

I used to limit after school play to half an hour when DD2 was 8 and then pick her up or drop the other child home. This appeared to be more manageable and didn't set her off for the rest of the evening.

We increased it to an hour after a while and then a bit more as she became more able to cope with it. Then she changed schools and, as we were from out of catchment, it just stopped happening.

Kerry, your son not liking the trampoline could be down to vestibular sensory issues.

OP you will very soon find that the DLA does not cover all the extra expenses associated with your child's disability. I always ask myself would I be spending this if my son did not have a disability? If the answer is no then legitimately it is associated with the extra costs of making your child's life easier and reducing your caring costs.

Just noticed that this is in AIBU so may reach a wider audience than the special needs board.
Recent purchases with my son's DLA care component:
Baby wipes ( he is a teenager and incontinent)
Disposable bed protectors (copious vomiting and bowel problems)
Dettol wash to cope with the dirty laundry
Extra sets of pyjama because of frequent changes
Night light for waking carer
Postural support cushions ( memory foam from Lidl!)
Wheelchair rain cover and fleece blanket for wheelchair
Petrol for hospital and hospice visits
Contribution towards increased heating costs ( heating on 24/7 at 21degrees)
contribution towards new shoes (cannot buy cheap as feet deformed)
Printer paper for daily medical records
I could go on and on ........

If there is any money left over at the end of the month I am saving it in a special account because he is life limiting.

(Apologies OP , I am becoming a little sensitive to benefit bashing and want to highlight here that the DLA care component just does not cover the extra costs of disability)

Hi, sorry I don't have much to add- I have no personal experience with DLA or anything but I do have some close friends who receive it for their children.

We bought some sensory gifts in the past for an adult we know with learning disabilities. If you are worried avout the heat from a lava lamp, would a fibre-optic light do the same job? Our friend was delighted with hers and her carers said that watching it change colour and move really helped her to relax come bed time. They don't heat up the same as lava lamps. She also had a small fish tank with a light in that she liked to watch. My DS (no special needs, sorry if that is the wrong term to use) has trouble settling at night and we have a lava lamp for him but we bought a plug-in timer that plugs into the wall socket, then the lamp plugs into the timer so you can limit how long it stays on for and prevent it from overheating- maybe that would help?

A friend of mine is in the process of getting a diagnosis for her son, and she has been given some information that she can apply for grants on top of DLA that can go towards equipment for
things like a trampoline or outdoor equipment etc.

Sorry if that wasn't really helpful, my experience is limited. I hope you enjoy the new opportunities the DLA will allow you all to have

I have slowly turned Ds room into a sensory room.

this takes a lot of electricity to run, so the money also goes toward the electric.

I tend to always use a chunk of it on sensory toys etc for DS but he also needs expensive boots, new uniform constantly as he chews them, and I use it to fix his iPad or buy new cases for his ipad. Also for nappies, we get some free but it doesn't cover what we actually need

DD's is mostly used for activities (swimming and riding), replacing things that she forces (we've had to replace 2 doors!), such as her retainers, which have snapped in half at least 4 times, presents for her friends, clothes, expenses for Granny when she's providing respite care...

DD is 16 and, unlike her younger brother, she can't go out and get a paper round and a washing up job in a restaurant, so we also give her 'wages' for helping around the house. She likes to help anyway and she feels very grown up when she gets paid!

@antiopa im sorry I certainly didn't mean any offence, its just that all the things my DS needs associated with his additional needs have always been covered by ourselves and its hard to differentiate usual costs and extra costs at the moment, and very overwhelming for us as we have had a diagnosis, dla award and all this additional info in just a few months. I didn't mean to offend anyone :(

re sensory issues, CAMHS were querying this-but ive not heard anymore since diagnosis-I assumed they had ruled it out-should I push for assessment? we have been discharged as we are coping well xx

Yes you should push for a sensory assessment because sensory issues can be a very real problem for those on the spectrum and if you can get any sensory issues dealt with you may be amazed at the difference it makes to your boys overall wellbeing.

In the meantime though there's much you can read up on and put into place yourself till an appointment comes through.

Just dont be put off by the likes of CAMHS not pursuing it with you, and last but not least - know that you are coping well isn't always the best message to send to the powers that be and any discussing you do with them should always be based on a 'worst kind of day scenario'.

And whilst its great you are coping, it really is - life for all of you in the family is about more than coping.

Oooh thanks will get onto CAMHS on Monday :) Yes I know what you mean about coping well being a hinderance with getting support, its frustrating though because we have had to work very hard to get where we are now with very little guidance. She did talk through some strategies for sensory issues, like pressure (like big hugs and blankets can be calming) at the pre assessment, then at the post assessment she didn't mention anything ensory. we were promised sensory therapy before the ASD assessment but that never came so I just assumed they had decided he didn't need it :/ will definitely chase up x

Kerry, This was one of the first links I came to and it might help you to understand why your son doesnt like trampolining, and why applying pressure and weighted blankets aren't for everyone.

www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

Also, Jessica Kingsley Publishers do loads of fabulous books on the spectrum, it might pay off to have a look and see what they have in general.