#1
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Hi, i have 3 children. Ages 5, 2 and 1. My 2 year old will be 3 in December. He has recently been diagnosed with dystonia. I've been trying to find out more about it. I know there are different types and that some are progressive. I've been trying to find out more about it. Also find out if it is considered a disability. Not sure who to ask for help.

My son cannot walk far and when he does walk he constantly falls. He can't use stairs alone as he is to unstable. It is not a balance problem. Dystonia causes his muscles to spasm and contract. The dystonia can also cause him pain. This is all i know about it. I joined the forum hoping for a few answers.

Jox
#2
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Hi,
The thing with a child with a disability is that your always looking for answers,believe me!!!
The fact is the Dystonia is classed as a disability as it effect's the way he lives his life style.

I would advise that you now apply for Disability living allowance and other benefits you are entitled to.
Determination for eligibility is not based on a medical assessment but on care needs.
So you can say that you provide care such as:
Helping him with the stairs which means that he could come into harm without your help.
You also must help him use the toilet in the night if the toilet is downstairs and also when your out and about with him you also must be with him as he cannot walk long distances so when he turns 3 years old look at the mobility allowance aswell.

Obviously your son does have care needs so you would also be able to apply for carers allowance aswell dependent on your working arrangements.

If you keep a diary for a week listing all the help you provide no matter how small that is a result of his condition you will see it soon adds up.

Please find a useful guide that we have put together.

http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=25

But as far as it being classed as a disability then yes it is.
Would he also be needing extra support at Nursery and if so a SEN policy may also be needed in order that his care needs are met.
So much to do......
But worth it as it will make your life easier long term.

Do ensure you claim for the DLA though as you are entitled to it judging by your post.

There you go you find a forum and gain a few extra quid to help.
Not bad for a mornings work eh?

In regards to the managment of his condition medically what is in place in regards to the care plan i.e treatment?
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#3
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Also just wanted to add you can apply for DLA online.

http://www.dwp.gov.uk/eservice/

If you need any help just let me know.Smile

Before you do this though really determine what the care needs are in detail
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE
#4
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Thank you very much for your reply and help. Its great there's actually getting some answers. Its difficult sometimes i don't know who to ask most of the time. So does a child have to be 3 to claim moility allowance? Thanks again.

Jo x
#5
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(10-15-2009, 12:44 PM)Jo+3 Wrote: Thank you very much for your reply and help. Its great there's actually getting some answers. Its difficult sometimes i don't know who to ask most of the time. So does a child have to be 3 to claim moility allowance? Thanks again.

Jo x
Yes a child has to be 3 and has to be eligible for higher rate mobility,if they are only eligible for lower rate then it does not get paid until the age of 5.
Also you would most likely be entitled to a blue badge.
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE


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