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children, ADHD and DLA..do you receive it & what do you use it for?
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# 1
lolly1981
Old 13-02-2010, 11:35 AM
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Default children, ADHD and DLA..do you receive it & what do you use it for?

Hello
I know this subject has been on here before...but i have a few questions

My soon to be 6yr old has been under pedeatric care for 18 months for the diagnosis of ADHD...we are now in the final stages of that diagnosis.
Alot of people have pointed out that after the diagnosis he would possibly be entitled to DLA (even his learnings support teacher said this). This has not been my main concern...i have too many things to worry about than this...however if he could be entitled to it why shouldnt i?

his paturnal grandmother has suggested it isnt a good idea to get him statemented and claim DLA as thats what she did for his father and it caused all sorts of problems as he got older that she was spending HIS money!

well my questions are...do any of you have children with ADHD and claim DLA?...if so what do you use the money for...id be very conscious about paying bills etc with it as its not MY money.
and as parents with children with ADHD know it is very tiring...and you always have to be on the ball so how does the DLA help? if it even does that is

thanks in advance for any replies
lolly x
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# 2
Indie Kid
Old 13-02-2010, 11:46 AM
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If he gets statemented then it means he'll get the support he needs.

DLA is given for the care and /or mobility needs and not the diagnosis. You have to prove that your 6 year old with ADHD has more needs than the average 6 year old.
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# 3
lolly1981
Old 13-02-2010, 11:54 AM
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he does need alot more care than an average 6 yr old...the usual mantra of..if he hurts himself he wont do it again definatly does not apply...he has no sense of fear in that he will climb up anything jump off anything talk to anyone, no matter how many times he is told something is dangerous he will still do it...even if he hurts himself doing something he will still do it.

he lacks the concentration to do simple tasks such as getting dressed just purely because he'll get halfway there forget what he has to do,...then do something else instead...he constantly needs to be reminded of simple tasks.

his thinking is very literal if you dont explain something him with the tiniest detail he is unable to complete such task effectivly...which again can lead to dangerous situations.

you need eyes in the back of your head with him...if not there could potentially be dangerous situations...it is very difficult on shopping trips, days out, because he do things that are deemed inappropriate i.e climbing on things.

it isnt that he is naughty but his brain is busy if that makes sense.

and im not so concerned about if he does get it....my question is if they feel he is entitled to it...how do others use it and how does it make the job of taking care of an ADHD child easier
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# 4
munchings-n-crunchings
Old 13-02-2010, 1:00 PM
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To claim DLA, you do not need a diagnosis, it goes on the care needed.
So, from the stage you are at now, I would apply for the forms.

Get some help with filling them in. You can contact your council, and ask to speak to Welfare Rights. The benefits system is their area of expertise, and they will help you fill the forms out in the correct manner,

List all your son's behaviours, and it will help you when filling out the forms.
I know exactly what it's like, as many of your sons behaviours are the same as my daughter who is on the autistic spectrum,. Even at 14, it can be like going shopping with a toddler!
Think also about issues relating to sleep, and the night time.

Keeping a diary is also really useful, and can be used as supporting evidence.
Always remember, it's the care and supervision he needs over and above a normal 6 year old. It may be obvious, but you need to make it so clear the difference in care.

It helps if you understand the terms used when referring to the care of your child.
Words such as 'attention' 'supervision' 'frequent' 'continual' 'prolonged' are used, and if you apply these to your child, it will get the message across loud and clear.
The Decision Makers Guide refers to these terns, and how they are viewed, so take advantage of it.
Here is the link http://www.benefitsnow.co.uk/dmakers/default.asp

Here is some information where DLA relates to children http://www.benefitsnow.co.uk/special/children.asp

The more supporting information that you can send in with your application, will help the Decision Maker.
A report from the school will save time. As your child spends most of his day at school, this will normally be the first point of contact. It sounds as if they are supportive. Many schools seem to be fearful of putting anything in writing, and I can only assume this is in case you use it for trying to get extra support. But if the report focusses on you son's care needs, compared to his peer group, this will help.

Don't get disheartened. It's not an easy process, but trying to get your application right, with help, will ease the process.
If you are awarded DLA, it will change very little.
You still have the same child, with the same difficulties.
The money, which you use as you see fit, will just help ease the financial burden.

Don't worry about the grandparents. Mine said 'let's not use the word autism!' as if it would magically disappear.

Good luck, if you have any questions, you can always pm me,

Regards
Munchie
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# 5
lolly1981
Old 13-02-2010, 1:36 PM
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thank you so much for that.
its so over whelming because i feel like maybe its all in my head and i should be able to control him better...but then school have difficulties also....they filled out a conners questionnaire for him...they let me look at it before they sent it and many of the things i listed they had too....made me feel a lil less insecure!
i also see others coping with their cildren and think that they dont see him the same way i do...but it has to be said he behaves that way no matter where he is!

its the constant ds stop that, get down from there, stop doing that, get dressed, leave your brother alone, etc etc that completly wears me out but does that constitute as more care....obviously some of the things that i have to repeat is to prevent someone getting hurt or something getting broken...i am so worn out...nothing i try helps....he seems to make up his own rules...we set rules, boundries, reward charts etc but after a while he then starts dictating how it should be done and it stops working....oh and the incessant talking...the second he wakes up to the minute he goes to bed.

a good example of him not understanding how dangerous things can be...he has tiptoed downstairs in the past and used the toaster...even tho as a smaller child he biurned himself...we do unplug it and put it away but he has been known to plug it in...and we spend forever explaining its dangerous but it doesnt stop him.
hes forever taking things apart...not destructivly but kind of like hes on aurto pilot.
he touches things absent mindedly as he walks past it...regardless to wether it might be hot...pushes buttons even tho we have a split second ago told him not too...but it really isnt him being defiant.
when he was 3 he went to a dance class and they told me in no uncertain terms not to take hjim back. because he was so busy!

sorry rambling now
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# 6
panicos
Old 13-02-2010, 2:27 PM
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Default Adhd

My son has ADHD and I have been claiming DLA for 7 years, it is not an easy job living with someone diagnosed with ADHD the whole family suffer. My son is now 16 however the money mostly goes towards breakages, he has punched his fist through ever bedroom door in the house through sheer frustration
We recently recieved a visit from DHS as he can claim in his own right however he has no comprehension regarding money, would.nt know how to handle his own financial affairs etc.
On the positive side he is now in 5th year and just sat his prelims. Hope this helps
Waddle you do eh?
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# 7
Savvy_Sue
Old 13-02-2010, 2:58 PM
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How would it help? Well, panicos says 'breakages' and I wouldn't disagree with that, but also, you could pay for some help around the house, to let you devote more time to him and his brother (rather than cleaning, IYSWIM). Or you could pay for some respite care - someone to care for him for an hour so that you could do something with his brother, or even vice versa.

I think the way you present it is key - your MIL maybe thought of it as 'his' money, and that caused problems, but I'd see it as 'family' money which you've claimed because one of the family needs extra help in some areas.
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# 8
Alchera
Old 13-02-2010, 2:59 PM
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Quote:
Originally Posted by lolly1981 View Post

it isnt that he is naughty but his brain is busy if that makes sense.

and im not so concerned about if he does get it....my question is if they feel he is entitled to it...how do others use it and how does it make the job of taking care of an ADHD child easier
The only way I can think of is if you get a respite carer to care for him while you have a break.
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# 9
shazrobo
Old 13-02-2010, 4:56 PM
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i have twin boys aged 14 with severe adhd, oppositional defiant disorder, and conduct disorder. both lads get high rate care, and low rate mobility, the money is spent on things they need, eg, they go thru a lot of beds and bedroom furniture,
or things to make life easier in caring for them, eg a qualified childminder, for a few hours respite occasionally, meals out once or twice a month, saves trying to cook when your so totally worn out, and the boys still need supervising, also a lot is spent on petrol for days out to keep them entertained etc
enjoy life, we only get one chance at it
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# 10
lolly1981
Old 13-02-2010, 5:18 PM
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thansk for all your kind replies...i find it so difficult with the amopunt of people who say ADHD isnt real!

my sons ADHD probably isnt as severe as others...but it still wears me out.

ariane5 i know exactly what you mean about bedtimes...we have a playroom which should be locked but of course DS1 has forgotten where he hid the lock...we usually find asking him when hes asleep usually gives us the answer lol....but he had to take everything out of his room except his bed and wardrobe but he's drawn all over the walls his bed his bedding etc.
he draws all over himself too! he now takes melatonin to help him drift off to sleep and thankfully it does work so at least i get the evenings to recover lol.

another thing...im not sure if this is related to ADHD but i have read somewhere it could be....he eats non stop...all the time he is hungry he even sneaks out of his room to 'steal' food!

i have noticed as well that thinks happens in spurts...it started of hitting people...then it was incessantly talkg....now its lieing..but they seem to start as quick as they stop.
luckily he isnt violent....he doesnt seem to have much temper on him!

and truthfully sometimes i feel like a fraud because i see other peoples children who are rude, answer back etc and hes always really polite i just think what makes him so hard is that its always constant
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# 11
karmacookie
Old 14-02-2010, 9:34 AM
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Hi

My DS is 15 and we have been getting DLA mid care low mobility since he was 5. He has Aspergers and dispraxia..

We have used the money for breakages i.e. h went though 4 beds in 5 years .

It helps fund his obsesions, he has a large fish tank in his room, laptop etc. It has been used to fund family things like holidays which have helped him see more of the world and know how to behave in different situations. It has funded swimming lessons, horse riding and any other thing that has taken his fancy. all of these activities have benefited his immensely and helped to bring him out of his own little world.

It has also meant that I get carers allowance so that I only work part time I'm always around at the beginning and end of a school day to help him get orginised. It helps to fund a second car, OH works long hours in another town so without a second car it would have been very diffiult for DS to get to any activities after school.

But, i understand where your MIL is coming from. we have this award until he is 18 and I'm aware that the money needs to go directly to him once he is 16. I really don't know how I'm going to explain to him. He sees everything in black and white so I'm quite sure he will view it as me spending his money. Goodness knows what he would spend it on. He was out alone the other day and bought 2 pencils, 2 pens, a packet of buttons and a piece of felt. I asked him why? He has loads of pens and pencils and god only knows what the other stuff is for. He couldn't explain, says he got very stresssed and panicky and just felt compeled to buy some stuff Just as well he only had a couple of pound on him!

It's a worry Oh, i I often feel like a fraud x
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# 12
Indie Kid
Old 14-02-2010, 9:56 AM
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Quote:
Originally Posted by karmacookie View Post
Hi
But, i understand where your MIL is coming from. we have this award until he is 18 and I'm aware that the money needs to go directly to him once he is 16. I really don't know how I'm going to explain to him.
I think you can get appointed to look after his money once he reaches 18 if he's not able to do so?
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# 13
karmacookie
Old 14-02-2010, 11:04 AM
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Quote:
Originally Posted by sh1305 View Post
I think you can get appointed to look after his money once he reaches 18 if he's not able to do so?
This is something I need to look into. I think DS would have to agree to it and one of the problems we have is that he doesn't have much insight to his problem. He found this autism quiz online

http://psychcentral.com/quizzes/autism.htm

he was quite aghast to find he got 38 points

Most people with ASD will score over 32!

I forgot about the food thing, when DS was younger the kitchen needed to be locked up tight. Even now he stilll needs a bit supervision around food. I'm not sure if it's bordom or what but he can get through an amazing amount of stuff. sometimes I don't think he has any tastebuds everything just gets shovelled down!
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# 14
lolly1981
Old 15-02-2010, 10:54 AM
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yeah the food is a real issue in our house....its just always...mum im hungry, mum can i have this, mum what can i eat now...unfortunaty we cant lock the kitchen as you have to go through the kitchen to get tho the bathroom lol.
but im not sure if that would fuel it tho wanting something more cos he cant have it
hes been like it ever since he was a baby...thankfully it isnt always junk food he wants..its yougurt, fruit, cheese, cucumber etc but if i let him eat all the time all that he wants he would eat a weeks shop in a day lol.

we had a fun weekend lol...we sorted out his play rrom..as he was sent to tidy it and we heard things dropping out the window! hes also drawn all over his arm and windowsill in bright red felt tip!

i think i might explain from the off abouyt the extra money (if he is entitled), he is very intelligent and when things are explained in complete detail he will understand...he likes to learn new things, hes like a sponge always asking questions. so hopefully if he understands that the money we get is to help look after him and do get to spend time as a family, he loves his 'us' time, he wants to go on all sorts of holidays....we're off to scotland in may hes super excited lol. he might not be so put out when hes older
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angelheart-xx
Old 15-02-2010, 6:33 PM
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i have an 11 year old daughter who has been diagnosed with adhd and dyslexia i get low rate mobility for her i try and give her things she needs and i couldnt afford otherwise and take her and brothers on holidays..

im just back from an appoitment with a nurse therapist who is looking into adhd for both my sons and within 5 mins of seeing them he says he is in no doubt they both have adhd but still a long way to go to diagnosis i believe.. im just thankful ill be getting an answer after all these years of waiting and wondering and ppl telling me no they havent got adhd when they werent qualified to even assess the kids
mother of 3 great kids (well they do try lol)
1 girl age 11 (who has adhd and dyslexia)

2 boys age 7 & 8 (who are both being diagnosed with adhd in the near future)

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# 16
lolly1981
Old 16-02-2010, 11:38 AM
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im still in 2 minds about this...ive been reading other threads where other people are saying that the money being used by the parents is abuse!

i wouldnt go so far as to say that but i am wondering whether claiming it is for the best...me and OH have been talking about he...he feels that it will be taking things away from DS1 ...such as scouts (we are thinking of sending him) as we wouldnt be able to pay for it without the money....but i am really concerned that when he gets older it will be a problem...or the other option is to put it in the bank for him...only use it for repairing things hes broken..and any thing that comes up for his care i.e hospital visits....and the rest of iot to save....but then when he gets to 16 he will ahve that money to do what he wants with..and if his 'father' is anything to go by that might not be a good thing!

or lastly tell him that because his brain is 'busy' (hes only 5 thats how we explain it at the minute)...that we get some extra money to help look after him etc what would he want to do with it....but again explain that if he breaks things it will have to be paid for from that money!

i do think the money could help relieve some of the stress as he could have things to occupy his time (thats a big problem for him he always has to be doing something!) that might last till his a teen so will give him something to focus on etc but i feel like a fraud..as he doesnt have a 'major illness'...i dont want to be seen to be making money from ADHD...as im sure a lot of people on here know that some parents want their children to have the diagnosis because they can claim the money (im not saying people on here do it but that they have probably come across it)...thats why im glad his 'father' doesnt know about the diagnosis as he would be on my doorstep ina flash!

oh decisions decisions...
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# 17
Indie Kid
Old 16-02-2010, 12:10 PM
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Quote:
Originally Posted by lolly1981 View Post
im still in 2 minds about this...ive been reading other threads where other people are saying that the money being used by the parents is abuse!
Doesn't that depend on how the parent uses it though? Because you could argue that using it for petrol (so you are technically using it) could be for his benefit.
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# 18
lolly1981
Old 16-02-2010, 12:12 PM
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yeah...thats why i dont agree with that statement lol
but where does it go from being for there needs to using it as an excuse that youre spending the money for their needs...im just quoting what someone else had written with regards to it being used to fund the family piggy bank lol
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# 19
angelheart-xx
Old 16-02-2010, 12:44 PM
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end of the day ,you would be giving your child things that you would not normally afford and to me thats giving them a better chance in life ,i know some parents who abuse it they seem to go out every other weekend but myself i use it for my daughter and give her things like a second holiday she so wanted to go to blackpool last year (weekend away) ,which she said she would love to do as a family so thats what i did and made it as fun as possible and now she wants to go back to same place but for longer,i definatley could not afford to do that normally (holidays are usually only and hour away at a caravan park which we have been going to for going on 10 years),day trips in summer,going into town on girly days shopping,when she comes food shopping she ha an opinion on what i should buy lol...all appoitments transport i dont drive hosp,play therapy,nurse therapist every so often

i spend all my time and money on all of my kids rarley go out....

i dont see anything i am doing wrong maybe someone will but thats how i work it certianly dont look at it as family piggy bank though
xoxo
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# 20
blue_monkey
Old 16-02-2010, 12:49 PM
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We use ours for:

Garden play equipment - also got a 'circuit' put into the garden so he could ride his bike around it. We cannot go out to the park like other people can as he just goes off so they have everything they need here, climbing frame, swings, trampoline, climbing ropes, etc... In the summer it bought a huge inflatable water slide and paddling pool.

Replacing clothes that he eats holes in (one top a day at least - not cheap)

Food. He ate my 2 large boxes of Thorntons Chocolates and Milk Tray this week and I had no idea, they were ALL gone in the space of 2 days - I was bought them as a gift. I was gutted.

Replacing the stuff he has broken in a tantrum. Our new TV is on the wall so he cannot knocl it over and that already has a scrath on the screen.

Paid for a carer to come on holiday with us as hubby was at home replacing the bathroom and we could not be in the house. It also paid for us to have an upgrade into 1st class on the train so he could have more room to move around.

Currently paying for 1:1 swimming lessons as he is petrified of the water.

You know - what have no life, we cannot do the things normal people take for granted, I always have to have a carer for him so if it gives us extra money to have a holiday then so be it. We have no family to help us out either.

If he rips a hole in my clothes and they need replacing then yes, I will use 'his' DLA money.

The money is actually the families money as far as I am concerned as we are all suffering because of his disbilities. Last week he cut the feet of his sisters Gabriella doll. That will need replacing too.

if I was going out and p*ssing it up the wall then yes I'd agree this is not what it is for, but it is there to make life better for all the family IMO. Also, we have paid out at least 3 times more than we get DLA (over 2 years) on stuff for him so it is irrelevant tbh. Just how much have you spent to date, before getting it, more than what you would have spent on another child without his condition?

Oh, and because he has ADHD/Autism our travel Insurance - quoted at 8 online without him having it - actually cost us a whopping 28 for a 3 day trip!!!!!
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