Has anybody had to explain their illness to a child, and if so what/how did you say?

[jonbon]

I have a 6yr old child who knows that mummy gets tired and has to rest a lot. She knows that I get dizzy and can't carry drinks and thinks my stick is cool ( it's pink, silver and sparkly). I was diagnosed in Oct 2012 but have had balance issues for a few years so she is aware that things are a bit different but I don't want to frighten her or make her worry. The school is arranging family support but that may take a while. People often ask if I'm ok when she is with me and I feel very awkward not knowing what to say. Does anyone have any child-friendly advice on what to say?

[HarryB Administrator]

Hi Jonbon

I asked a similar question a while ago, the link for which is below.

ataxia-uk.healthunlocked.co...

Although I don't personally have any useful advice, I hope you find these comments as useful as I did.

Harriet

[jonbon in reply to HarryB]

Hi Harriet,

Thanks very much for that link. I have read it and Iains explanation was brilliant will def use the term 'balance box' she will relate to that. I have been worrying so long about how to explan it, when I'm still struggling with it, but that certainly helps.

Take care

[wendygirl]

Hello

My daughter was 6 when I was diagnosed. My husband suffers from epilpsy so thought it would be best to explain the best we could that mummy and daddy both have bad days, I call mine "wobbly days". Our daughter is almost 9 now so is now able to do more things for herself and for me. As she is always by my side she has seen many falls & trip to A&E which did start to affect her school work, but the school is now working with her and she does have a quiet room she can go to with a teacher to talk. We try not to talk about the future in front of her or that she may have the illness we take each day at a time.

Each child is different though what may work for me may not work for someone else. I am always here if you need me.

Wendygirl xx

[jonbon]

Hi Wendygirl,

Thank you for sharing your experience with me. Your story has really touched me. It must be a difficult thing for you all to deal with but you obviously do cope well together. I am feeling more able to broach the subject with her. I need to share with her in a light-hearted way to make her feel as if she's with me and I'm not just tired and irritable 'at her'. I will try and answer her properly now and not just pretend I'm ok as I'm sure she knows I'm not.

Will let you know.

Nickyx

[neta]

I am older than you and my ataxia (so far) is much less obvious. But here's the rub. (Good news). Younger children are more accepting than older ones, who remember you/me when you had no ataxia. Older children, even married ones, have a much harder time accepting the change. I saw that yesterday when my 5 year old granddaughter instantly took my hand on the stars when she thought I was unstable with no questions asked. Neta

[february]

Hi Jonbon, I agree with Neta, who said that younger children are more accepting than older ones. I was diagnosed with ataxia 10 years ago, and my two children were 18 and 21. They both had a difficult time accepting it! My grandson is 3, the older of the two I have. He's used to seeing grandma with her cane and has never batted an eye. As my grandchildren get older, I will answer they're questions as honestly and age-appropriately as possible! My best to you..., ;o)

[annasgonesailing]

I have FA, I often have to explain it to children as I volunteer with children; short answer to child who asks why I use a wheelchair - 'because im not very good at walking' and either 'and if i fell over id squish you' or 'do you remember when you/your siblings were little and used a pushchair because they weren't very good at walking yet'. The long answer if explaining that nerves inside your body play chinese whispers with messages from your brain and my nerves forget the message easily. If there are lots of children doing a task learning about it they make a chain of kids (3-5 kids long) the first kid can see the picture and has to describe it to the next and they have to pass it on and eventually the far person tried to draw the picture.