Explaining disability (in particular Downs) to young children

[Utka]

Can anyone recommend a good website, or leaflet that might help me explain to DD about Downs, in due course?

DD is 3, very articulate, and also already inquisitive about disability (e.g. wheelchair users, the reason for disabled parking). This is perhaps because one of the mums in our regular coffee group is severely visually impaired, with a guide dog.

DD understands that this means we have to be careful about practical stuff, such as leaving toys around that could be tripped over, not 'petting' the guide dog etc.

However, one of DD's new friends at nursery has a 6 month old sister with Downs. Already, the little girl has had to have quite a bit of hospital treatment, and I anticipate it being more difficult to explain Downs to her - particularly as I don't necessarily understand the different degrees of Downs, or the challenges that this little girl is going to face. I really want to make sure that I'm explaining it, not only in a way that DD will understand, but that will be sensitive to the child's mother's feelings, since we are likely to have quite a bit of contact over the coming years.

Thanks

I would suggest asking the girl's mother what she would like you to say. She would already have had to explain it to her first child. No specific experience on this but I have found with other potentially awkward situations, just to ask the person concerned what they would prefer you to do and say and they are normally thankful that you have spoken about it.
HTH

i don't have any advice - thomcat may be the best person as her dd has downs and she's great at explaining things.

I hwever have a child with CP who can't walk and we explain to her cousin that she has poorly legs and that's why she can't walk - i think it's great you want to find out as there are so many ignarant parents out there that just snub our children (not all but some)

So from me thankyou there is some hope

Well first Utka can I just say how lovely, kind and considerate of you,

I do have a couple of little ideas but to be honest I agree with Tommy, as this is about someone else's child with DS she may be the best oerson to advise you and no-one else. how I may like my daughters DS explained may not be how she would choose to have her daughter described.

I think the mother would be so touched that you care enought to ask her.

The only thing I was going to suggest, that no-one can take offence to, are 2 books - 'All kinds of people' and 'All kinds of bodies'. They are really nice books and help the child to understand that we are all so different, some people have freckles, some wear glasses, some use wheelchairs etc might be a nice way to get the conversation started???

Anyway let me know how it goes maybe, if you don't mind?

If you do need to know anything before speaking to the mum or don't want to work it that way come back and say so and I'll do anything I can to help.

TC xx

This is a really good question as all kids want to know the answer to every question then and there and I have always tried to answer them honestly but I am always aware of possibly answering wrongly especially if the parents are in earshot. My close friend's dd1 has ds, she is a year older than my ds - and they have asked me lots of questions re. her - like why can't M speak very well, why does she look different etc. I have tried to explain in simple but honest terms. I felt that this paid off recently when my dd was taking part in a joint activity with another pack, there was a little girl with downs (more severe than M) in that pack. Apparently, there was a session where they had to do something with a partner - that partner had to be from the other pack - dd happily chose to partner this little girl. When I talked about it later, she said that she looked a bit like M and acted a bit like M and she understood the 'juice sign' like M does. M is fun so I thought she might be too.

Sorry - that should have read Brownie activity - not just activity.

Oh Jaybee, have you any idea of the rush of goosebumps up my legs when I read that. Also just had to swallow a very large lump in my throat! Every mother fears their child will somehow not fit in or be excluded somehow, or worse still - bullied. When your child has SN, or any kind, and stands out from the crowd a bit you worry even more. I can hardly bear to think about it really and when I read / hear stoies such as you have just told it just fills me with hope and helps me to not fear the future too much,

message withdrawn

Ohh Utka - how exciting - I look forward to hearing of the safe arrival

Oh and thanks Galaxy. Lovely name btw - suits you much more

message withdrawn

Thomcat - my friend has worked very hard with M - she attended a state primary school and was all set for going to a state secondary last September but the more my friend looked into it - she felt that M would not cope so now goes to a special school - where she has found her first boyfriend - she is 11.
I have always explained differences and illnesses etc., however, it is the 'put-you-on-the-spot" type questions that throw me. 'Mum - why is that little girl in a wheelchair' - answer would probably be - I am not sure of the exact reason, but maybe she has hurt her leg, or has an illness which means that she cannot walk' - would that type of answer offend anyone?
Worst ever situation (funny now) was when my ds who was about 2.5 (and his favourite story was Three Billy Goats Gruff). There was a man who was physically and mentally handicapped at our local leisure centre, ds states quite loudly and matter-of-factly - "Look Mummy, there's a Troll' - Mummy trying not to choke on her coffee - no darling it is not a Troll it is a man, he just looks a bit different. Don't you just love 'em.

Jaybee - I think your responses to questions about 'why is that person in a wheelchair?' are spot on.

When Lottie was born my friend said to me -'What shall I tell A' (her little boy 3 years older than Charlotte)? I said 'don't tell him anything, not until he asks why she's not doing something yet, or why she doesn't speak clearly'. I didn't want any of the kids having anything planted in their heads and always being aware she was different somehow. If her differences show and they ask then that's fine but I don't want an issue made beforehand.

Funny though she is always the centre of attention with all the kids in our social circle. I've never really understood why. It's like they have a 6th sense or something? They all make a bee line for her and many of the closest kids in the group are very protective of her for some reason.

I remeber once I was trying to chat to A's mum and I said 'A, why don't you tell Lottie a story'? He said 'I could do but I think I might help her to try and walk first'! He was also the one at a party the other day when a liitle girl poked her tounge out at Lottie (being silly and jokey not in a stroppy way), A came over and told the little girl 'Don't be horrible to Baby Charlotte'and told me he'd sit next to her while they were eating and look after her!

That's the other thing - she's never just been Charlotte, they all call her 'Baby Charlotte'!

Sorry I'm rambling again!!!!

Thomcat - I so agree with you - we would never have thought to explain to the kids that M was 'different', kids natural inquisitiveness will bring out the questions if you are happy to answer them and I feel that kids should see us treating M the same as her siblings too. M adores ds and always gives him a kiss on the cheek when she sees him. Ds is a cool 10 year old with lots of equally cool mates, but doesn't bat an eyelid when she walks up to him when he is with his mates at a football match and kisses him on the cheek - he just shrugs and says - oh that's M - she has always done that.

You're really making me feel good today Jaybee - good to have you around xx

the other option is to contact the Down's syndrome association - they have a literature section that have books for children explaining down's syndrome - written with siblings in mind but relevant to all children.

I did manage to find a couple in my parent group lending library - you might like to look into...

'Our brother has Down's syndrome' by Sheila Cairo

• positive book that can be used for explaining ds to young siblings and other young chidren....so the blurb says

A more general one about special needs is..

'My sister is special' by Larry Jansen, Lisa Caldwell, Robert Pepper

• is for children aged 4 - 10 explaining about children who have special needs

If the child is just six months though there may be no real questioning yet by your dd. Perhaps you could just address the idea that this little girl has not been well and that is why she has had to be in hospital.

I have friends with young children who wanted to know about dd's zipper ( scar from heart surgery) so we just explained that her heart was broken and that the doctors need to patch it up and now it is a good as new.

Basically just keeping it simple and focused on the one thing at a time - when they ask why she does not walk yet etc then we will take it one thing at a time.

I think rather than overwhelming your dd with lots of information - just take it a step at a time ... with whatever query she has...eg.. why isn't she walking - you could explain that her muscles are not quite strong enough to hold her up properly yet and so she might take a little longer to walk.

I did this with friend's children and they thought it was fine - they could understand that and needed to know no more than that at this point in time.

Or if you feel awkward and not quite sure what to say - call the other mum and ask if she can explain to dd when you next see her... I don't mind talking to people about dd and I like the idea that I can say what I would like to be said about her.

I just wanted to finish up by saying that the world needs more parents like you.... wanting to educate your child and to prevent her from growing up ignorant and misinformed.

Thanks for all the tips. It's particularly useful to have feedback from Thomcat - thanks for the book recommendations.

Galaxy - I'm intrigued - how did you know I live in Farnham? Did I post it somewhere else?!! Not that it's a secret or anything.

Midwife says the baby's engaged finally, so hopefully it should happen soon. DD one's birthday is Sunday though, so I'd prefer it not to clash (have invited whole family turning up to celebrate - mad pregnant woman that I am.

Thanks again for the tips.

Good luck Utka - can't wait to hear all about it.
Thanks again for being a caring, thoughtful individual!
TC x

Thomcat, my friend's nephew has Downs and is now 16. She says he's always been popular, has never experienced bullying and is very sociable - goest to the cinema, parties, the usual. He has a job in a supermarket which he absolutely loves and has made friends there and also has a girlfriend (I think she has SN and he met her through a social organisation, but don't know if she has Downs). I only found out about my friend's nephew after talking to her about you (!) but I thought you might like to hear that story. He really lives a very normal life.

Thanks Aloha - yes I very, very much like hearing positive, happy stories like that, it's great thank you.

message withdrawn

Thanks Galaxy - not surprised I didn't remember, given the porridge-like state of my brain at the moment. Chose utka as it means duck in Russian - a particular passion of mine (Russian, not necessarily ducks themselves!). It was one of the first words I ever learned and is, as you say, memorable. Anyone else hopeless with remembering their passwords / nicknames online?!!