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explaining Down's Syndrome to DD age 5

6 replies

emkay · 27/12/2010 21:16

My sister, now in her late 20s, has Down's Syndrome and I am beginning to feel that I need to explain more fully to my DD, aged 5, about what Down's Syndrome is. My sister and DD have always got on very well and enjoyed each others' company. Last year DD asked, 'is auntie learning how to be a grown up?' and I offered a vague explanation that it took sis a bit longer to learn some things. However, my sis has had a difficult three months with a mental breakdown of some kind and now needs much more support than previously. DD is getting very jealous of this extra attention and is now beginning to react negatively. I want to explain in simple terms she can understand. Any advice? Has anyone had experience of explaining Down's Syndrome to a young child? Any suggestions for good books for this age group?
Thank you so much!

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Shallishanti · 27/12/2010 21:24

I'm sure I have seen books, but they all were about children with DS, not adults. I can relate to t his as my uncle had CP and LD also had epilepsy and as a child I witnessed a seizure once which was scary. On the one hand, it was good that he was just a member of the family- not that he was able to have the kind of r'ship your DS and DD have. But, it was a kind of taboo in the family, in that no one was ever explicit about what was 'wrong' with him and why, and I didn't feel able to ask.
'Taking a bit longer to learn things' sounds fine to me, and if she has been unwell recently, maybe you can just say that too? And if she asks why it takes longer for her to learn things, could you say that she has something called downs syndrome that means her brain works a bit differently?

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mummymash · 27/12/2010 21:32

You may already do this but try and involve your DD as much as possible in caring for your sister, even if it is going to the fridge to get things or drawing her auntie a picture to make her smile.
Sorry this may not be much use or support. There are children's story books which show positive images of children/adults with learning difficulties but I'm not sure if there is a specific one on downs syndrome,
good luck x

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emkay · 27/12/2010 21:33

Thanks - Your post makes me think that the key thing is not to avoid the discussion because of the difficulty of having it. I think my hesitation is around the fact that until the last three months I felt there was very little need to say anything because the relationship was very positive and on equal terms between the two of them. Suddenly DS finds she can do so many things that my sis is struggling with and I think she is unnerved about it. As are we all...
Thank you!

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mummymash · 27/12/2010 21:41

would your sister be able to talk to your DD or let you know how she would like you to tell your DD about her needs? does that make sense?? x

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emkay · 27/12/2010 21:43

Thanks mummymash - good idea about involving DD. I'm going to trawl library for a book of some kind, but maybe will have a quiet chat first in any case.

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emkay · 27/12/2010 21:45

Sorry crossed posts! Unfortunately the nature of my sister's breakdown is that she is having difficulty in communicating very simple thoughts and wishes, generally repeating the last thing you have said or speaking very softly and indistinctly. This is part of what is upsetting DD, I think, because she can't understand why her attempts at communication aren't getting the response they used to.
I think that the situation will slowly improve but I want to preserve the excellent relationship they have built up in the meantime.