Friday, January 18, 2008

What's in a name?

If you look at the top, right-hand corner of my header you'll see the words "Trisomy 21." I kind of regret putting that there (and am too unorganized to find the original file to change it right now.)

Why "Trisomy 21?" Why not just "Down syndrome?"

I don't have a problem with other people using the term Trisomy 21, to be clear. I've just been trying to figure out why I put it there.

I remember when I was creating the header that I paused - just for an instant - then typed out the words. I suppose I still don't want my son to have Down syndrome and that if I put it up there, all official-looking, then it's the real deal. Because when you tell me that Ian has Trisomy 21, it's this scientific mystery, something that doctors in white lab coats huddled in sterilized medical facilities are working around the clock to figure out. If you tell me he has Down syndrome, well, you know the stereotypes.

Did you know that the scientific name for the gall wasp is Preseucoila imallshookupis, named after Elvis Presley's song, I'm All Shook Up? It's true. The internet told me so.

When I was a kid I knocked down a wasp nest with a broom handle and was stung a dozen or so times. If the doctor had told me that I had been stung by a Preseucoila imallshookupis, I'm pretty sure my response would have been, "I don't care what you want to call it, doctor, it hurt like hell."

Trisomy 21. Down syndrome. Hurts like hell.


Anonymous said...

For me, the attachment to the words Trisomy 21 lasted for a long-time. I mean it was easier to hear than Down syndrome. Part of it was because it was the medical technology that explained what happened to the chromosomes rather than the founder of whom discovered it.

I guess that was it for me. After a while I graduated from both terms, neither of which I use with any real frequency. I elected to use "just a little bit of something extra" that seemed to lessen the effect of most lay people who knew nothing about it.

It almost sounds wonderful doesn't it? Just a little bit of something extra. The problem is that most people don't have a clue about what I am describing when I express it this way.

I hate labels, but the reality of the world is that they exist everywhere.

I don't want my child's ability to be determined by how many chromosomes she has, or the negative stereotypes people naively hold in their heads...people who don't know any better...but should.


Elbog said...

I've been through a lot of iterations. I think my favorite, and I almost started a website called T21 - The Next Generation. I had, and still kinda do, have trouble with the word "Down" - the connotations. I do like to joke that it's good that it wasn't 'discovered' by Dr. Shitzenheimer or some other name.
Then there's the realization, as I became more aware of this world, that there's a whole spate of trisomys out there - trisomy 21 wasn't so exclusive, anymore. I agree with anonymous that I sometimes want to dissociate from Dr. D, even when I learned that he had a grandson (born 9 years after he died) with DS. Ironies abound.
Do they 'have' T21, or 'are' they T21? What is in a name?
"A rose, by any other name. . . "

Leah said...

I don't have a problem with either. Most syndromes have names, that's just how life is. This one happened to be named after a guy who had the wrong name. I also wish it wasn't "Down" Syndrome. If I were to name it after Angela, it would be "incessantly talking" syndrome, or "Dumbass" syndrome (one of her favorite words. Cute huh?) or even "Why?" Syndrome.

But, I'm getting a new license plate for my new ride. T21Mom See, I can embrace both names! (well, and T21MOM fits on the plate!)

Terri said...

I'm here no matter what you decide to call it.

Christina said...

I know what you mean. I used to think DS sucked. The first 2 people we told in person that Vince had DS both responded with what is that? That sucked worse. To try to explain it. Then one said, well as long as he is not mongoloid... (Same thing, old terms). THat sucked way worse again. But you know what, it changes. Sometime in the last 20 months the word Down Syndrome changed from something that made me have a big lump in my throat to something that is pretty darn cool. Or maybe not cool, but at least something I am very proud to be part of in life. And, I have a feeling you will get there soon enough too.
Till then, hang in there! Focus on the goods and of course on Ian!


Kim Ayres said...

In my experience it really is just a matter of time. At the moment, with medical things going on, the DS or T21 side of things is still making itself felt. Once things settle down and Ian's a bit older and more interactive you'll find it doesn't matter as much.

Of course it will rear its head from time to time, but day to day it ceases to be an issue.

Imagine if Silvi was colourblind or tone deaf. It might be an issue sometimes (like when she wanted to join the school choir), but it wouldn't ever be her "defining" characteristic. It would just be one part of her make up.

You will reach that point with Ian. You're already much further along that route than you were 3 months ago.

Tom said...

Rebecca: I hate labels, too. Even though I often default to them. I'm leaning toward using "Down syndrome" exclusively with people who don't know Ian just because it's easier, and I'm all for easier these days. :)

Elbog: "To boldly go where no one wanted to go, but are learning that there isn't half bad."

Good tag line?

A friend of ours had a child who died of trisomy 18; it didn't sink in until I had Ian and heard of trisomy 21.

Leah: Ha. "I.T." for Incessantly Talking. I'll be on the lookout for a motorcycle with those plates. :)

Terri: Thanks.

Christina: Hard to believe people still throw around the word "mongoloid" in everyday conversation. Yuck. Thanks for the encouragement.

Kim: I do admire how you seem to have just allowed your daughter's Down syndrome to become part of the background of your lives. I hope to get there one day myself.

A few things that are hard to "get over" or come to terms with are that Ian will most likely never marry, have children, this or that.. You know? Lots of loss to come to terms with. A little more change than colorblindness, but I get your drift.

bella said...

It's odd, isn't it?
I still have a hard time saying I had cancer. I call it "the surgery". I say I have anxiety instead of OCD.
And really these pale next to what you struggle with now, what you come to terms with, how you choose to define.
Words are what we have. And sometimes they are just not enough.

LAE said...

Actually, if you hadn't used the term, Trisomy 21, new to me, I wouldn't have gone to Google's search engine, which led me through a magical wardrobe to the T21 Universe, currently under the spell of a witch, and all of her mysterious protagonists.

Thanks for helping me kill my prescientific cognitive suppositions with simple (yet appropriately provocative) semantics.

Kim Ayres said...

If Ian turned out gay, he wouldn't get married or have kids either, but I'm sure you'd come to terms with it sooner or later ;)

fallingdown said...

Tom, sending you hugs down the line. Or am I supposed to say (((hugs)))? Whatever. Sending 'em anyway.

Yes it does hurt. How could it not. Acknowledging and going on to accept the loss of what you hoped for has to be part of the process.

Yes, a child without Down syndrome may not go on to marry and have their own child - but, at birth, the 'possibility' is there. And remains for a good long while. Isn't that what we all hope for deep down? Knowing that the possibility may not be there at this early stage....isn't it valid to feel the need to come to terms with this loss (especially if, like me, you were only planning to have one child)? I think it is.

I don't particularly like the term "Down syndrome" (Down's here), but T21 is not very well known. I have had a few people use the 'm' term to me as well and I cringe. I try to change that where I can.

Small steps.

Jennie said...

Hey, Tom. Thanks for keeping up with our blog and praying for our little guy too. Regarding the loss of future possibilities, i.e. marriage, college, etc., I was given some grand advice from a friend. Don't think you need to grieve everything all at once now. Enjoy your life with Ian as it comes. If he doesn't get married, for example, then feel free to grieve it later. You'll have many more opportunities to grieve. But right now, he's a darling little baby boy who loves you unconditionally. It's okay to feel sad, but don't let yourself live there. Trust me... I'm preaching to myself too!

Jeff said...


If it means much I don't use either much unless someone asks a question or I am in a discussion about issues.

In my world today and our surroundings Nash is just Nash. And when we are running late on those mornings we just can't get in gear and I take him to school it always makes me smile when I hear kid after kid yell...Hey Nash!

As far as college and weddings and such...who thier anything that says any kid will do this? Is there anything that says someone with ds won't?

Peace Dude.

Tammy and Parker said...

I remember sitting in the doctor's office one day with Parker. The doctor asked what Parker's diagnosis was. I went through the whole litany: pulmonary hypertension, chronic lung disease, IA, colostomy, on and on.

Then after I finished I caught on that he was asking about the Ds. doh!

I think that with Parker coming with so many health issues, several that we had never even know were possible, that the Ds simply took backseat and was just never an issue.

Losing Parker has been our one and only fear.

But that has just been our experience.

Tammy and Parker

Tom said...

Isabel: Thanks for your own words... they really do help. Wish I had some better ones to offer you than "cancer" or "OCD."

LAE: Your welcome... and glad to know you're still alive and kicking. I'll give you a call this week.

Kim: Or George Clooney... :)

Fallingdown: Thanks for the encouraging words... so funny how words change over time... people used to call kids with DS "idiots" and "morons", and those were the "scientific" terms of the day. Guess I'll take T21 anyday :)

Jennie: It's been good to follow your journey.. thanks so much for the right words at the right time.

Jeff: Here's to the day when Ian is simply called "Ian." Appreciate it :)

Tammy: I haven't commented on your latest post yet (about Parker's weight) but have been thinking about you and him this past weekend. In fact, I spent some time on your blog first thing this morning. Hoping and praying that he'll progress as God sees best, and for your family. Thanks for the words...

Carole said...

I always said Downs Syndrome before Nebraska was born. Then I started to say Trisomy 21 because I heard some parents are offended at the DS words.

But what ticks me off is why can't I just call her Nebraska. When I brag about my granddaughter and show her picture, people look at me like I have just lied to them. No I didn't lie, I just didn't give you a diagnosis and really sir I don't want you to give me the diagnosis of your child. When I have future grandchildren will I have to label them also? GRRR.

annofthejungle said...

How about Lejeune syndrome, after the man who discovered the gene that causes Down syndrome? A nice fancy French name might give it some class. Maybe we could petition the powers that be to have it changed.

Have you read the book "Gifts" yet? Don't let the upbeat title fool you. The majority of us whose kids have Lejeune syndrome (I like it already) struggled in the early days. I wanted to be anyone but me for a very long time. Let me know if you need a copy of the book and I'll get one to you.

(By the way, I don't have a blog, but my son does have a Caring Bridge website. I hesitated posting it because I'm always afraid I'm going to freak out new parents of kids with DS. My son has leukemia, one of those things that our kids are at greater risk of getting. So as not to freak you out, even though our kids are at greater risk the risk is still very, very small. We just got lucky I guess. So lucky that we started buying lottery tickets on our way home from the hospital after his initial diagnosis! See, you can still have fun even though your child has DS and a life threatening illness. In fact, morbid humor has become a way of life for me. Here's the link to his site: )

Anonymous said...

Easy is good. I like easy, go with your gut, do what feels right. You won't go wrong.

It's certainly better than my cowardly way of not addessing it at all. I'm sure there are times when people are completely baffled about what I am talking about because I neglect to use "those words".

Funny because I work for a non-profit and my business card has "those words" in the company name. Your right about labels we can easily dislike them, but they exist, so settling on the expression you are most comfortable with is up to you.



Anonymous said...

Oh and Tom, if you want a copy of Gifts, just email me at: rebecca.phong [at]

and I will pop one in the mail to you tomorrow.

I think Anne's right, it's a good read...not that I am biased or anything. :)

Tom said...

Carole: I feel the exact same way about Ian. Who really has the energy to always bring up DS when talking about their child, anyway?

Annofthejungle: I like it (Lejeune)! Of course, there are all those people who hate the French...

Buy me a lottery ticket while your at it.. I could use the cash. Thanks for the link; I'll stop by.

And I haven't read the book yet; I'm still trying to get over the shyness of being one of the only Dads writing about these experiences on the web; I perused a copy at the bookstore one day and will get a copy for my wife. Thanks.

Rebecca: I've been toying with telling people that Ian has "morphologic variations due to nondisjunction in chromosome 21." Then while people are left scratching their heads, I can slip away. :)

Thanks for the kind offer of the book.. I'll let you know.

Anonymous said...

I love it, keep em' guessing.

If you decide you want the book, you know where to find me.

Have a wonderful night!