dla help

[angel9199]

Hi I am in the middle of filling in a dla form for my son ( 3 and diagnosed with autism and severe speech disorder) and I have been told not to use the word tantrum as it could describe any child, so I'm wondering if anyone knows the correct term to use.

 

Also is there any other terminology I should use. I'm a bit confused over frequent, prolonged etc

 

My son had severe behavioural problems and you cannot let him out of your sight at all during the day, wakes at least once during the night and also wakes at 5.30 every morning.

Could someone please help me!

[baddad]

Hi angel -

 

Here's a link that you should find helpful:

 

http://www.cerebra.org.uk/parent_support/DLA_guide.htm

 

It's taken from a pinned topic in this site's 'Help and Advice' section, which is here:

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/20218-claiming-dla

 

The cerebra one used to be the 'best' (i.e. most user friendly)but if that's changed the second link above has lots of alternatives...

 

Most improtant thing to bear in mind is that you have to show why your child's needs are not the same as that of any other 3 year old, so there's no strict right term for i.e. 'tantrum' (lots of people use the word 'meltdown' but it's one I personally dislike) - it's just a matter of explaining why it's not the same kind of 'tantrum', iyswim. That comes down more to things like theory of mind and the way your child perceives the world, and words like 'frequency' 'duration' and 'triggers' help to explain that! You should find lots of helpful definitions in the cerebra leaflet.

 

The leaflet also used to (hopefully still does) contain info about the 'evidence' they need - i.e. what frequncy/duration of night time waking etc meets the criteria for the night time component. It has to be times when other family members aren't awake, so if you/your partner are milk 'person's' or bakers or farmers and are up at 5:30 anyway early waking won't count!

 

HTH

 

L&P

 

BD

[LisaKaz75]

hi started receiving DLA for my 3 year old son in January

 

He does not receive the highest rate

 

However, the key thing seemed to be to stress the things that we different between him and his peers. The things i stressed were

 

danger awareness (running off, not coming back)

not responding when called

does not eat or drink without being prompted

Still in nappies

Puts everything in his mouth

Still use reins for walking

Can not ask for things, leads to frustration and outbursts that put himself at risk. (head banging -even concrete)

 

I used examples both at home and using situations at nursery (where he needs his one to one worker)

 

When we were awarded it seemed to be the toilet training and lack of communication that got it for us. The evening thing about waking and waking early was not taken into account

 

hope this helps

[angel9199]

Thank you so much for both your help, I will check cerbera out now.

Salisbury Hill you have just described my child apart from the eating and drinking my son is always trailing us to the cupboard (about fifty times a day) to get biscuit, icelolly etc and when it comes to tea time he will eat a bit, smear some in his hair then throw the rest across the room (actually this is every meal which can be very messy)

 

It such a hard form and I really want to get it right because I am struggling so much finacially I child mind and only look after two kids part time and I am too scared to get any more in case ds hurts them. (which is very possible if the bruises on me are anything to go by.

 

We still use a buggy for ds, if I try to use reins he either twists himself and nearly gets strangled or just sits down and refuses to move, but he is getting too heavy for his stroller so think we will have to look at getting a newone.

Shoule I put that in dla form as well?

 

Thnaks so much again x

Edited April 14, 2011 by angel9199

[JsMum]

Thank you so much for both your help, I will check cerbera out now.

Salisbury Hill you have just described my child apart from the eating and drinking my son is always trailing us to the cupboard (about fifty times a day) to get biscuit, icelolly etc and when it comes to tea time he will eat a bit, smear some in his hair then throw the rest across the room (actually this is every meal which can be very messy)

 

It such a hard form and I really want to get it right because I am struggling so much finacially I child mind and only look after two kids part time and I am too scared to get any more in case ds hurts them. (which is very possible if the bruises on me are anything to go by.

 

We still use a buggy for ds, if I try to use reins he either twists himself and nearly gets strangled or just sits down and refuses to move, but he is getting too heavy for his stroller so think we will have to look at getting a newone.

Shoule I put that in dla form as well?

 

Thnaks so much again x

 

 

Hi angel.

 

I would describe that you have to use preventaive measures to ensure your son does not harm others or himself this can be visual disaplays, low arousal, verbal commands and physical restraint.

 

I would defo describe his beahviour outdoors too as this will help with care outdoors and there is also a seperate componant called mobility when they turn five.

 

I would also request a referral to your local Occupational Therapy Department for an assessment wether he may need a referal to the wheelchair services as you can get specially adapted special needs strollers.

 

You need express as much as possible to extent you have to go to keep him safe and others safe.

 

Once you get writing them down that is when it hits us in the face how much we do which is why filling in the DLA forms they can be like a roller coaster in itself, I remember when I finished my sons application it was like a biography, remember when you have finished to photo copy it for future reference and also when you post it do it by recorded delivery that way if it gets lost you can trace it.

 

Do not send any original letters or documents, photocopy them and attatch them.

 

I recommend the welfare rights services too at the National Autistic Society and there is Local Authorities welfare rights too.

 

Good luck it is stressful and difficult but its your sons right so think it as his entitlement.

 

JsMumxx

[angel9199]

Still trying to fill this form in and have got a mind blank about what to put in the commuication box, it is asking do they difficulty and need help to communicate.

My son is non verbal so does not communicate properly with anyone unless he is draggin me to the kitchen to get him a biscuit but apart from that he will just stand ans scream if he wants something. should i just write that or try to go into more detail?

 

Thanks again

[Kathryn]

Hi angel,

 

I merged your last post with the existing topic.

 

Go into as much detail as you need to. As Baddad said, you need to show why your son nas more difficulties than the average 3 year old. Just standing and screaming for something could describe a lot of 3 year olds on a bad day so you probably do need to explain this behaviour a bit more, and give examples.

 

K x

[LisaKaz75]

i put that Leo could not express himself verbally and would drag us to what he wanted and point/ grunt

 

I explained that often it was still unclear what he wanted and that it was often frustrating for him

 

I also used this as a way to say that we would say "want drink", "want car" etc.. to show that we were trying to help him, and that this was time consuming and took a lot of time during the day

 

Hope that helps

 

LisaKaz

[angel9199]

thanks again for everyones help, i have very nearly finished the form

Hopefully I have went into enough detail, i am worried I am telling them too much about what he cannot do but not enough in what i do to help him.

 

Also the very last thing i promise ( I am so grateful for all your help)

The last box says Tell us anything else about the difficulty or the care they need. I dont know what to write should I summarise everything I have written before. So far I have an additional 18 pages to go with it and this does not include reports from professionals), or write just about how life is with Luke on a daily basis.

 

i have also put 3days worth of daily diary, Is this enough?

 

okay that's it! I have a meeting with cab on tuesday so want to get as much done before then.

My friend was there last week and they were terrible in the part about playing, they wrote one line x can play with his sister! That was it, my friends little boy cannot play with others and does not play by himself either, she told me she just told , her son is going over to his sister more when she is playing but is not getting involved.

 

So I am worried about them writing from scratch on my form

 

Sorry I am waffling now

 

thanks

[emmasmum]

Well done for finishing the form

 

Personally it sounds as though there isn't much point in taking it to CAB after the advice they gave your friend!

 

You don't have to write anything in the further information part of the form but at the same time it doesn't hurt to re-iterate what you've said before. Have you done a daily diary? I've heard the new forms contain this now - sometimes that can help to illustrate just how much you do that's over and above what you would do for a "normal" child of this age.

 

If he wakes at night have you put how long you're awake with him? I believe it needs to be at least 20 mins you spend with them to qualify for needing help at night.

 

Make sure you get the forms back before the deadline date.

 

Good luck!

 

Carol

[angel9199]

Well done for finishing the form

 

Personally it sounds as though there isn't much point in taking it to CAB after the advice they gave your friend!

 

You don't have to write anything in the further information part of the form but at the same time it doesn't hurt to re-iterate what you've said before. Have you done a daily diary? I've heard the new forms contain this now - sometimes that can help to illustrate just how much you do that's over and above what you would do for a "normal" child of this age.

 

If he wakes at night have you put how long you're awake with him? I believe it needs to be at least 20 mins you spend with them to qualify for needing help at night.

 

Make sure you get the forms back before the deadline date.

 

Good luck!

 

Carol

 

 

I have put in three days worth of daily diary, including how long it takes to het ds up , washed and dressed. went through what we do during the day e.g. playing playdough have to sit with him as he eats it and smears it through his hair. About lunch, dinner and bedtime.

 

I have out it in the daily diary and in the section about bedtime that ds gets up once for between 15-60 mins a night then wakes at 5.30am but they will probably say that any young child will do this.

I think I have covered everything but have repeated myself so much throughout the forms, so was going to bring it to CAB just so they can have a read through it to see if it sounds okay.

My mum was going to put in a statement for me as she sees my son at the worst, he does not like her at all and will not go near her and if she comes over to him, he punches, kicks and bites her.

I also went to see our gp to let her know they will be contacting her, and the whole time we were there ds was very destructive and agressive so she got to see how he behaves.

Our paed, speech therapist, and health visitor said we can put them down as well, but when ds goes to therapy he is as good as gold does everything he is supposed to then. He is like a different child, my friend came with me to one session and she could not believe how different he was during therapy. But I suppose that is what happens if they are in the right environment.