On p. 313, Beck writes that having Adam is like going to the store, expecting to get a dog, and coming home with a kitten instead. Which reminds me of another popular metaphor, that says having a baby with DS is like planning a trip to Italy, and finding yourself in Holland instead. What do you make of these metaphors; how are they helpful, and how are they unhelpful, when used to describe real people and families?

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Jennifer Graf Groneberg

I have thought about this a lot since T was born--about how our expectations color our experience. Do I expect Thomas to be just like any other child, just a bit slower to do things? Am I going to push him to close that gap as much as possible? Is "normal" the goal?

As has been said many times in many places, kids with DS have more similarities with typical kids than they do differences. But as far as the differences go, I'd say I want my other children to be more like Thomas than I want Thomas to be more like them.

So, to answer your question, I think it's valuable to acknowledge that there may be more than one paradigm of life, more than one way of evaluating success, more than one value system.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2

I know the Holland reference, in particular, draws strong reactions. I think the puppies and kittens is just more of the same...trying to put words around experiences that might be too big for a short answer.

And too, everyone has a different experience. While we share much in common, each child is unique, as is each family. So it becomes very difficult to generalize, in my opinion.

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Jennifer Graf Groneberg

Yes... "they" is just as lousy a term for parents of children with DS (and families that include a member with DS) as it is for individuals with DS themselves. I sometimes lapse into it myself (like when I'm trying to articulate thoughts about why so many of these kids have something especially beautiful about them). But you're right, it can be a dangerous practice.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2

I think it is the journey that is different, not necessarily the children.

And it is different for us as mothers and people when we have a child with a disability.

It makes us re-evaluate what is important. And that's a good thing. And each family does that differently, depending on their experience and culture...

But as you said, Aaron is more the same than different. I think the Holland analogy is saying the JOURNEY is a bit different. The kitten/puppy thing I don't agree with - because I don't think the KIDS are that different....

But that's just my opinion. I could be talking out of my a**. Haha.

Speaking of a**, in the same paragraph MB says that a difference in chromosomes is what separates a donkey from a mule.

Which is true, as far as I know, but I am not sure that this applies to children with DS. It's my understanding that they don't have _different_ chromosomes, but only slightly more of one, which is the same in all other ways.

I know I am splitting hairs here, but it seems important to me to clarify: the mule/donkey analogy is untrue. And I think that's your point too, Suz, about the kittens/puppies thing. It should be more like Labradors/Golden Retrievers, or something along those lines.

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Jennifer Graf Groneberg

That's an interesting point about the donkeys/mules. I agree it's important not to classify kids with DS as a different species!

Here's my thought about the puppies/kittens. If I'm remembering correctly, she brings that up when she's talking about her futile efforts to get preschool-age Adam to learn spoken language. I think she's trying to make the point that we can cause ourselves (and our kids) a lot of pain by trying to get them to perform like typical kids. That kids with DS are highly successful in their own ways. They have different gifts and strengths. The puppy-breed metaphor describes this perfectly.

But I think it's important to point out that the so-called (by M) puppy strengths (e.g. academics) pale in value when compared to the so-called kitten strengths (e.g. warmth and sincerety). I think kitten-ness is where it's at, and that we're all kittens at heart, we're just confused and have let our puppiness get in the way. I think those two parts of us--the part that's mind/body driven vs. the part that's heart/spirit driven--are as different as kittens and puppies. So that's what I liked about the metaphor.

Again, it's important not to imply that there's some kind of line between typical people and people with DS that can't be crossed. As I said elsewhere, anything especially beautiful about someone with DS is something any of us are capable of, if we're willing to follow the path that leads us there.

Methinks I'm making no sense. But thanks for reading anyway!

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2