What is a good answer?

Speechless, me? Not so often. But there is one thing that I get asked every now and then, that I just do not have a good answer to. The other day I got the question again.
It was someone who just found out I have a son with DS, in fact it was a customer who was flipping through Aussergewöhnlich:Väterglück by Conny Wenk that I have on the cash register. It got the usual  comment of the wonderful pictures, and did they all  have Down syndrome? etc.

For some reason we started talking about DS and she asked:

How does Down syndrome affect him? (don’t know exactly how to translate what she said, but basically she meant what is it that is different about him? She did not mean it ina  mean way at all, just curious).

I never have a good answer. I say he is behind in some areas, but in others he is just like any other kid. Usually I end up saying some blahablaha about only having one kid and I do not know exactly other 3 year old’s know. What do you say? Am I the only one getting this question?

I belong to the group who choose not to be offended by this type of question. I could very well have asked it myself, did I not have the experience with Vince. But what is a good way to answer?

12 Responses

  1. I always LOVE it, when people ask me questions. This is my chance to spread the message! I love talking about my daughter and DS … and I think they “get” my attitude. And attitudes are contagious, aren’t they? 🙂 Seriously, I have people rather ask than only starring. And then I have to remember, what I knew seven years ago. Which is really really nothing, I have to admit. I knew nothing! I always tell people they can ask me just about everything … they do … and then it’s okay. I always experience that there is still so little knowledge about down syndrome. The other day I was introduced in a café: “BTW this is Conny Wenk – the woman who photographs mongoloid children.” Ooops, since it was a very kind and lovely woman, I didn’t say anything (that was my speechless moment) ….

  2. fist of all: good question!
    second: i don’t get offended as well by that question – i feel like conny: rather ask and talk than just look (away).

    and then: i can give you an answer by saying what i said so far to the people asking me – which were mostly people at work or friends… no unknown people of the street. so – my answer will probably change with time going by and people who ask – but especiall with me growing up – ben is just 8 months – so what did I learn so far?

    anyways, back to your question, what i say: ben is like most other boys – he smiles, cries, sleeps and likes to play with mom and dad (at least right now). but while you might ask yourself whether your kid will go to the university and become an engineer one day i ask myself whether ben will be able to read and talk one day. and i know already that he won’t be the one ever to pick me up from late day at work or a visit at the bars with friends – at least not with his own car since he won’t have a license. sounds too negative? no, not at all to me. it’s just facts – it’s different, not worse!!!

    • Martin,

      There are a lot of people w DS that drive. I met a girl, I think she was 22, 2006 in Salzburg for the Austrian DS conference, she had a presentation where she told us parents how she learned to drive, bought her own car and works a normal/real job (25 hrs a week not more, then she looses som of the money she gets fr the state).
      So the driving I am not sure about, the engineering will be fine with me. One engineer in the family is plenty (love you Bookie).

      So just wait and see, and never say never;)

  3. I had a great conversation with a friend of a friend this weekend. She had heard that our youngest son has Down syndrome and asked me tons of questions…..like is it hard to have a son with Ds, how is he different from his siblings, etc. I don’t think people are looking for answers about what your son will be doing in 20 years. I think they want to know what he’s like now and what your experience has been as his parent. I would just tell them all the things he can do, likes to do, that he’s had therapies to help him along the way, will be included in his local schools, etc. Like Connie said, this is our chance to spread our message!

  4. I agree with you as well – I have no problem with honest questions and inquisitive people who want to learn more. I as well did not know much before Sam’s birth and instead of someone breaking into a tirade or be offended I would have hoped that they would have turned around and explained something that they knew about.. having said that, I have had similar discussions and I tell them that a diagnosis of Down Syndrome means some learning delays/impairments, and that each child is as different as any other and why not take the opportunity to tell them all the things that Sam CAN do as well. Great comment Conny, about spreading around the positive attitude!

  5. I agree…I like it when people ask questions and are genuinely interested in Bridget, or in our experience with her. I’m more comfortable answering questions today than I was when she was tiny. (People asking questions used to remind me that something about Bridget was different, and other people noticed. I’m not as sensitive any more).

    Today, I always say that a diagnosis of Down syndrome means that a person will be developmentally delayed and may have other health issues related to the diagnosis. However, there is a huge range in health, ability and personality among people with Ds, just as there is with anyone else. (There is no way to predict what or how much anyone will achieve in their lifetime.)

    I am always open and positive…I think people do follow your lead, like Conny said. I adore Bridget and am proud of her…and I think that shows/encourages others to see the best in her.

    Parenting any child is filled with risks and rewards. We have four older children, and we are finding that Bridget is going through all the same developmental stages they did. Some just last longer. She is on her own timeline for milestones.

    The biggest difference (between Bridget and our older children at her age) is her style of communication and lack of spoken words. She is beginning to say more words, but signs many also. We are trying to give her lots of tools to communicate and interact with others.

    She has so much to offer, and my goal is to help others see that!

  6. For us, Down Syndrome is like a filter or a veil covering the child. Some children have thicker ones than others, and this cover weighs them all down to some extent, slowing them, and perhaps hindering others in the process from seeing what really lies beneath all the cloth. An occupational therapist once told us that DS was like doing beadwork with ski gloves on, or walking through mud with boots that are too big. You can eventually get the work done, get to the destination, but it takes more time and patience.

  7. I love Conny and Veronika’s response (not so sure if I could maintain my enthusiasm is I was described as the ‘woman who photographs mongoloid children’!!! but maybe that is a bit lost in translation.
    I love being able to just say what it is like to parent Hannah – I like to say what it is like to parent Kit too – neither is a picnic although both are wonderful!
    I like the “she is just like her twin brother – a bit easier to deal with at times – because she is less like her father(Conny – attitude is definitely contagious)! She is better than him in some things but generally is a developmentally behind him. She will do what he can do but at a slower pace and in her own way. She is a really good influence on him and her silly sense of humour really helps him not be too serious. He is a better kid because she is his sister and she is a better little girl because she adores her ‘typical’ brother.

  8. oops – that isn’t a ‘good answer’ just mine! A good answer is one that doesn’t make the person feel awkward for asking – and one that honours the wonderful life that our kids have opened up for us.

  9. I, like you, would not get offended by the question but would much rather people ask…so I can educate! I love it when people ask questions about Jack because I feel it gives me the opportunity to enlighten them and change any negative views they may have towards DS. So many people, like many of us before we had our DS children, are in the dark to what our kids can actually do and will do one day. I can honestly say that I do not get that question that often. Most people catch on just by watching Jack do all the things the other kids are doing…he just has to go to 3 different kinds of therapy a week to get there!!!

  10. He is more similar to us than not-like us. And I find that true more and more everyday.

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