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How to talk to 3 year old DS about his disability?

(5 Posts)
ditziness Fri 05-Oct-12 09:33:29

My three year old has an ( as yet) undiagnosed muscle disorder. His mobility is impaired, meaning he can walk, but has an extremely unsteady gait, falls over constantly and can't do much of what his peers can do. He's amazing and just copes with it, but I'm aware that he's starting to realise he's different and getting upset about falling over and not being able to do things.

I don't know what to say to him about his condition. Has anyone got any experience of this? Also what to say to his friends who are asking why he falls over elect. And other adults who call out helpful things like " is he drunk" or are just concerned when he falls about? Any have experience and perspective on this?

So far I've said that his muscles are broken just now and that if he keeps trying then he'll get stronger. Doesn't feel satisfactory somehow. Any ideas?

fanjoforthemammaries7850 Fri 05-Oct-12 09:39:45

so shocking that adults would shout that, sadly people seem to assume that little children cannot have disabilities.

Sorry I can't be much help with what to say to him as my DD doesn't understand about her issues but I am sure others will be able to advise from experience smile

Galena Fri 05-Oct-12 10:36:25

I say that about my own DD when she staggers around blush I'd never say it about another child though! DD is 3.5 and has CP so also falls over a lot and is wobbly walking. She also has a wheelchair for longer distances and wears ankle splints.

If I do talk to her about it I simply tell her that her legs don't work quite right and don't always do what she wants them to. Same with if other children ask. One little girl asked her in playgroup last week what her splints were. DD simply said 'They're my magic shoes.' (which is what we call them) and the other child just accepted that answer!

I must look like an awful mother though to other adults - she falls over and I just leave her and say 'Come on then, up you get...' Where other adults rush to help her up. It's not that I'm unfeeling, but I know that, if she's hurt, she'll cry and I'll go over and see to her. If she's not crying it's best that she gets herself up as 'helping' her up often unbalances her more.

Monkeychops41 Fri 05-Oct-12 14:30:51

My nearly four year old daughter has ataxia (walks like she is drunk) and we say she has wibbly wobbly legs. That is enough so far.

ditziness Sat 06-Oct-12 10:23:47

I could have written your last paragraph galena! It's difficult isn't it. I always feel judged because he falls over so much.

Thanks all. We don't have a diagnosis, despites years of tests. It's apparently a genetic muscle disorder, but without a muscle biopsy we don't know what. Very worrying, don't know what we're facing. But I want to try and Help him some how, but do difficult to know what to do .

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