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Applying for DLA for son with dyspraxia - couple of questions if I may...

(15 Posts)
FolkGhoul Wed 07-Nov-12 12:00:14

Hi

I've decided to apply for DLA for my children. One has mild/moderate hearing loss and I've been advised to apply by the National Deaf Children's Society and they can provide support in completing it.

but my son has dyspraxia. It's only mild. He attends a mainstream school and is doing ok. He was only dx recently.

Anyway, his main issues are following instructions and daily routines, organising himself - we had a huge palava last week when he tried getting himself ready for a school trip and even though we made a list the night before of the things he needed to do, got his clothes ready, packed his bag and I got up early to sort out his lunch etc and help him, he put the wrong clothes on in the morning, packed his lunch items almost one thing at a time, got distracted, forgot what he was doing... and we ended up leaving the house late. We have to have a list - he has to be constantly referred back to the list, I make him read out the next item on the list (so i know he's paying attention) and then he goes to do it (but not without me standing behind him reminding him (without getting frustrated!) of the list and what was on it).

For his bedtime/morning routines I have organised his things in order to prompt him, and have laminated some 'visual timetable' type things which seems to make it easier for him. I've also devised a timetable which enables him to be a bit more independent with things like his homework, chores, practice for things. But they only 'help' they don't 'solve' the problems.

He struggles to ride a bike and swim, so the paed told me we need to make more time for these things as I have to be with him to support him rather than just letting him go and do it on his own (at nearly 14) or us doing it just for fun. The paed has said that until the OT appt comes through, we need to spend time just practising skills like cutting with cutlery and tying shoelaces. And all these take time.

He's seen the paed once who, because he said that there were no issues regarding muscle tone or nerves, that he was discharging him from the hospital. And he is on the waiting list to be seen by the OT.

I'm wondering if it's worth applying for DLA for him. I think he'd be eligible just for the sheer amount of support he requires to do everyday things. But I'm aware that I only have him as my benchmark and that there are other parents on here who describe their children and their situations sound a lot more demanding.

I suppose my real question is that, on the DLA forms it asks about outside agencies you are involved with. We aren't involved with any atm. Is this going to go against us? Is it purely a case of providing evidence of a dx (the letter from the paed to GP confirming dx) and then detailing the impact etc. on our daily lives? Will it matter if there isn't a lot of supporting evidence from outside agencies?

thanks.

FolkGhoul Wed 07-Nov-12 12:00:39

god I really need to try and be more succinct! sorry for the length of that!

alison222 Wed 07-Nov-12 12:11:10

I don't know the answer to your questions but I wanted to say that I recently found out that my local Contact a Family office helps with filling in DLA forms, and there is a CEREBRA guide too which helps you to pin down the exact amount of extra things that you have to do for your DS.

porridgelover Wed 07-Nov-12 12:16:33

Folk I dont have much advice about the DLA procedure but I'm sure a wise person will happen along soon.
One thing I would recommend is to start a diary if you can. Note all the 'little' supports that you offer him.
You may not realise the amount that you give him over and above what a typical child of this age needs.

He sounds as if he has difficulties with working memory..which would not be unusual with Dyspraxia.
If you google 'training working memory in kids', you will see lots of games that can help like this.

coppertop Wed 07-Nov-12 12:27:27

DLA is awarded based on whether your child needs more help than a typical child of their age. It doesn't matter whether someone else has a child who can't do as much as your ds or who needs more support.

If you go through the form writing your answers like this:

DS needs help with [name the task]
He needs someone to [describe exactly what you do to help]
Without this help he would [describe the consequences]
A typical child of DS' age is able to do [task] with [no help/only a little help]

you will start to see for yourself just how much support your ds needs.

When I filled my application for my ds (HFA but lots of signs of dyspraxia) I even made some comparisons to his younger siblings to highlight the differences. So, for example, my 6yr-old dd can ride a bike without stabilisers, use a knife and fork, but my 12yr-old can't.

Ds didn't have any recent contact with outside agencies. Instead I just included his dx report from when he was pre-school age, copies of his recent IEPs from school, and lots of detail about what he needed help with from day-to-day.

He was awarded middle-rate care and lower-rate mobility until his 16th birthday (or whenever they decide to do away with DLA for children!). He's in a mainstream school and does't have a statement.

FolkGhoul Wed 07-Nov-12 12:40:24

Thanks.

So coppertop you included the comparisons in the form? DS is nearly 14 and has a 6 year old sister who is far more competent in some areas than others. The example I always give is that when they were baking together about 12 months ago (so 12 and 5) he read the recipe and she interpreted, understood and followed it.

so if the recipe says "sieve 125g of flour into a bowl", DD will understand that they need to measure out the flour beforehand whereas DS would just stand there flummoxed by a meaningless sentence and you have to talk him through it until he realised he needed to measure it out first!

School don't really have any involvment at the moment, they are waiting for the OT recommendations.

coppertop Wed 07-Nov-12 13:03:36

Yes, I included the comparisons on the form. I think it also shows them that you have a realistic idea of what other children are typically able to do at various ages.

I'm supposed to be making a start on my 9yr-old's renewal form (ASD) so you've also helped to give me the kick up the backside to take my own advice and make a start on it. grin

nothinginthefridge Wed 07-Nov-12 16:42:01

My DS has dyspraxia and SLI and I listed all sorts of difficulties relevant to dyspraxia. I treated the form like an application form for a complex job. Unless you specify all the difficulties, what you need to remedy them and how it affects your family life, the person make the decision won't know how much help your DC needs.

So, for instance being sent to get ready for somewhere in our house.

Takes about 6 or 7 attempts to get DS (12) upstairs.
He will forget to wash
He will forget to brush his teeth.
He will have a bath and completely soak the bathroom with water/soap.
He will forget to wash his hair
He will wash his hair with condition instead of shampoo.
He will then go into room to get changed.
2 DS although sharing a room need to be separated constantly or they will fight or mess around and not get ready.
He will need to be reminded 4 or more times to get ready.
He will insist on putting on shorts/tshirt in freezing weather and visa versa
we may need to physically put a jumper etc on if he refuses
He may completely refuse to get ready and sit on the floor in his undercrackers
we may need to 'negotiate' and make deals to get him ready.
He will deliberately wind his DSis up, going in and out of her room whilst she gets ready
he may be so engrossed in a game he forgets or refuses to get ready.
he won't remember where he's put his trainers
he'll refuse to wear a coat
he'll say he's ready and will come downstairs to be found watching TV with no trousers, socks, shoes etc on.
He'll need help to fasten shoe laces, do up a coat, do buttons.
He'll run out of the room and completely misjudge the size of the door and bang his head on the door frame, needing extra time to give a cold compress.

and so on......

I think you get the drift. I didn't list exactly but did a descriptive sort of script.

Hope this helps

auntevil Wed 07-Nov-12 18:02:53

Have you been stalking my DS nothinginthefridge ? grin grin
The only clue that you might not have is the Dsis - he only has Dbros!
That is just the morning routine - add that to the time at dinner, bedtime, homework etc etc it all adds up.
I haven't applied, but keep thinking about DLA.
The other week DS was away, and I realised that I had instantly gained an hour and a half each of the days just by not having to get him up and out , then in and to bed. this was with 2 others that i had to do the same with, so it wasn't as if I wasn't in the same routine. I even got an extra half hour in bed grin
You probably take a lot for granted time wise as you have always done these things and don't see the extra time as out of the ordinary. Do you have a friend that could give you some perspective? Compare what you do and what they do for similar aged DCs each day?

FolkGhoul Thu 08-Nov-12 10:16:30

grin @ auntevil

Yes, nothinginthefridge give me my son back!!! grin

I do take a lot for granted. yes it's interesting even reading fridge's list because we do all of those. god the going upstairs and down again a hundred times. Getting distracted. Having to be reminded several times to do something he was on his way to do, even if it is something that will benefit him - so it's not deliberate. None of it's deliberate. I'd completely forgotten about the washing hair with conditioner instead of shampoo. He sometimes forgets to use anything at all! it's getting difficult now, because he's nearly 14, but he really needs to be supervised bathing so that he does it properly. and I know that a lot of people start saying things like "but all 13/14 year old boys don't like bathing". but it's not that he doesn't like doing it, he can't do it!

My son takes a liking to an outfit and then wears it everyday rain, snow or shine whether it's minus 10 or 24 degrees and doesn't even seem to be aware of the need for more/less clothing. His current one is a particular red t shirt, a pair of jeans and a brown zip up hooded top. I may as well have not bought him anything else! But he's been wearing that particular combination since last winter and he wore it like that in winter, through the summer and he's still wearing it now. I sometimes have to hide them, or say I haven't washed them yet to get him to wear something different!

the thing is, he isn't a 'naughty' boy - his behaviour is great. From being a toddler I always used to say that if he knows what the rule is, he'll follow it. school said he had a "clearly defined sense of right and wrong" (I think they mean he's very black and white, inflexible and unforgiving grin)

I've spoken to a couple of other parents about their children of the same age. One of them also has a son with a dyspraxia dx so it was just very similar! The other parents don't really seem to do anything for their kids anymore. They are pretty much independent when it comes to getting dressed and self care skills.

Thanks for this reassurance and ideas.

If you don't mind, when the form arrives I might run through some ideas with you because I'm aware that a lot of the time, being awarded or not DLA is more about how you've expressed yourself/completed the form than whether the person qualifies or not. if that makes sense.

nothinginthefridge Thu 08-Nov-12 11:29:40

Actually folk the whole "all 12 year olds are like that* comment I get really makes me angry

I feel like saying come and live in our house for a day and then tell me that. I have a good friend who usually comes on holiday with us along with her 13 DD and it's so nice when she understands that it really isn't the same. It makes me feel a whole load better iyswim.

Another thing that makes the routine difficult is if you are going somewhere new. The questions and 'rehearsal' of what will happen. Over and over again

where are we going
what time are we setting off
what time are we coming back
who will be there
why's dad not coming
why does DD need to come
where is it/do they live
who's going
who lives there......

each question over and over again, because he can't remember the answer from when he asked the last time sad

nothinginthefridge Thu 08-Nov-12 11:32:21

btw I was awarded HRC and LRM for DS and it does help as we put it towards activities to build up his core stability and for replacing damaged/broken things in the house, and clothes he has damaged or chewed (of which there are a lot!)

auntevil Thu 08-Nov-12 17:46:56

Seriously nothinginthefridge you must be stalking DS as you have just listed his list of questions for every trip - including school!
V impressed with HRC - I might get you to advise me on my form - when I ask for one.

FolkGhoul Thu 08-Nov-12 18:35:48

<lines up behind auntevil>

nothinginthefridge Thu 08-Nov-12 20:15:59

auntevil it is worth applying. I've said on here before that I filled the form in but got DH to check it before I sent it. Tears rolled down DH cheeks as he read it as he saw in black and white how much extra we are doing for DS and how debilitating it is for him.

DS also has SLI and has working memory below 1st centile so they cause a lot of issues, but I do think the difficulties with SLI and dyspraxia overlap.

He gets HRC because we need to see to him through the night. He gets very anxious about things which we need to talk through with him before he can get back to sleep. Plus his legs ache terribly and we need to give him pain killers and rub his legs to ease the pain.

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