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Ataxia UK
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How do you have that conversation?

My 7 yr old son has fa and so far knows and accepts that he's wobbly. He still isn't asking any questions about his condition - despite me telling him before and after each appointment that he can ask any questions he wants. Lately however he is starting to pay a little more attention at appointments. At his latest one he asked what diabetes was after the neurologist had mentioned it. I want to be able to answer his questions when he is ready but how much should I tell him. How have others managed this conversation?

6 Replies

Hi :-)

If you look on AtaxiaUK - children and young people,

there's a helpline number, you can be put in touch with

others coping with a similar condition.

This might get you quicker contact rather than just waiting

for someone to log on?

Best wishes xBeryl


Thanks for replying. I've already contacted them.


I'm glad :-) you might also be interested in a group

on Living with Ataxia.org which has recently been

set up. You can never have too much support :-) xB


Hi. I never had that conversation with my parents and your messages make me appreciate that it must have been difficult for them. I know it sounds weird, but thanks. Not that I'm blaming them - I was a difficult kid.

I think it's great that he feels okay with asking questions. If I were the parent (and by the way, I'm not a parent, I just know what it's like to be a kid with FA), I'd just answer his questions truthfully and with what he wants to know. If he wants you to elaborate I'm guessing he'll ask if he feels he can. When I was younger I got bits of information that were sugarcoated, and then I went on the Internet to see for myself - it would have been a lot better if I was prepared.


Thanks for your reply. Its good to get a view from the child's perspective. As a parent you want to prepare your child - any child- so that they can have a happy life and hopefully make good choices. I definitely don't want to sugarcoat things but I don't want my son to feel that things are hopeless. I've learnt to deal with the diagnosis by finding out about fa and then NOT assuming that the condition will progress to its worst possible.


It's okay. Honestly, when I first started looking up things to do with FA I was frustrated by the number of parents there were looking for help. I didn't get it and it annoyed me - I mean, they weren't the ones with FA. But now I get it.

Funnily enough, that's how I handle it too. I think younger children tend to live more in the now, and he can live life sort of separate from FA. I try to do do that now (she says on an ataxia forum). I know FA's not going anywhere so I'm hopeful in other areas of my life.

I'm starting to sound a bit like a cliched self help book - sorry! Good luck:)


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