Our 7 year old has fa. He appears to be aware that he is different to other children but he is not yet at the stage where he asks questions.

[castle0365]

The physio has advised that he should try out using a kaye frame. She is not convinced that he needs one yet - he doesn't fall over often - but she doesn't want to leave until he really needs it. Do we let him try out a frame? How do we balance his physical and emotional needs?

[heather778]

Hello Castle0365

I am in the Occupational Therapy and it's very important to work at the pace of your son! If he is not ready for a frame (especially for balence) then try something else. My big brother has FA and he had one crutch to start off with when he was 12 just to help with transfers then he would furniture walk indoors and link his arm with someone for outside mobility. We left it until he said he feels that he needs a rollator frame and a wheelchair. The only issue I have frames are they can he unsafe for balence if they fall backward or loose grip. Physios don't specialise in equipment, OT do.

[annasgonesailing]

Ask if he'd thiwk it'd help, I went straight from walking to wheelchair as my parents were reluctant for me to use anything but that in turn meant I got so tired that my quality of life wasn't that good. It drives me mad when parents say 'at least they don't use a wheelchair' like walking is the be all and end all.

[wildone]

I have no experience in talking to 7yos about this sort of thing but I had FA as a kid so...

As the person before me said, couldn't you ask him about the idea or whether he finds walking difficult? Even if it looks like he's having difficulties it doesn't mean he finds walking too difficult - if you know what I mean. I always resented people telling me I needed help before I needed it (12 years ago I had an OT tell me I needed help tying my shoelaces even though I still manage fine) but at the same time, I didn't like to ask for help (I saw it as a weakness). So I'd just make sure he knows that if he's having any problems he can talk to you because there are probably things that he can use that'll make his life easier.

[SueMillman Partner Ataxia UK]

Hi Castle0365

Yes, balancing 'keeping life ordinary' with meeting the particular needs of a child with ataxia is very difficult, and the cliche 'every child is different' is very true. You may find it helpful to join our Ataxia Parents Facebook Group. It's a closed group, by invitation only. If you email me your details I can get you signed up. [e-mail]

Best wishes

[castle0365]

Thank you for the advice. It helped us making our decision.