Finally cluing you in

June 12th, 2010

From the very first day I began blogging, until this week, I have been undecided as to whether or not to write this post.  Most of the time, it would come into my mind and go right back out again, anyway.  Just not that important.  But on Wednesday evening, when I heard the labor and delivery nurse introduce us to the NICU nurse by saying, “Her baby is Down’s,” I began writing it in my head.

At risk of sounding like a school-marm, or worse, like a crusader with a chip on my shoulder, I’d like to explain the proper terminology of Down syndrome.  Because there is one, and I didn’t know it before it was explained to me.  And most of us would rather be unobtrusively clued in if our slip is showing, or we have a piece of spinach stuck between our two front teeth!

Down syndrome is named for John Langdon Down, the British physician who described it in 1866.  In Great Britain, the proper name is Down’s syndrome, but in our country, the powers that be decided that since Dr. Down did not himself have the syndrome, and it didn’t in any way belong to him, that it would be named Down syndrome.

That is Down with a capital “D,” and syndrome with a lower-case “s.”

In addition, just like it would be improper to talk about our “Parkinson’s friend,” or my “Alzheimer’s grandfather,” it is improper terminology to say, “Down’s person,” or “Down syndrome person.”  In addition, just as it would be grammatically incorrect to say that someone’s child is cystic fibrosis, it is incorrect to say that someone’s child is Down’s.

The proper way to talk about an individual with Down syndrome is by calling them by whatever they are as people, first, then saying that they have Down syndrome.

For instance, Verity is our baby, our daughter, our little girl with Down syndrome.

My friend has a toddler son with Down syndrome.  Another friend has a teen son with Down syndrome.  An online friend recently adopted two children with Down syndrome from the Ukraine.  I might go to Walmart and see an employee with Down syndrome.  Or to the mall and see an adult with Down syndrome.

If I hear someone say, “Down syndrome child,” or use some other wrong terminology, it doesn’t offend me or make me think less of them.  After all, I would have said the same things myself in the past, because I didn’t know any better.

When I hear someone use the incorrect terminology, it just tells me that nobody ever clued them in.

Now none of you fall into that category.  <smile>

(But please don’t tiptoe around me!  I couldn’t stand that! I can’t even remember everything on my to-do list without looking, and I for sure don’t have either the desire or the mental energy to keep track of other people’s mistakes!)

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10 Responses to “Finally cluing you in”

  1. jennifer76 says:

    Thank you for letting me know :).  I didn’t know that and in my mind I am reliving any time I may have used the term.  I like to be correct when I am speaking so this was very helpful.

  2. Joy Horton says:

    Before I realized what you were “cluing us in” on I was irked on the inside reading that the NICU nurse said she is Down’s. I think it’s good for you to point this out to people and I certainly try to do the same when I hear it. It’s a good thing for people to know. Yes, Verity is your precious baby girl, before everything else! And what a loved and blessed girl she is, indeed!

  3. Patti says:

    Yaaaaaaaaaaaaaaaay!!! Great post! Totally addresses the issue, but gracious too:)

  4. Shari~hotfudgecustard says:

    You are right — I much prefer to be told I have spinach in my teeth during the party than to come home and see it in the mirror afterward!  I will do my best to remember to say, “A child with Down syndrome.”  : )

    AND…. It’s June 14!!!!  Yay, Verity!  Stay in there until July 1.  Only 16 more days!!!!!!!

  5. Thanks Susanna.  That is a great reminder!  I am so excited for you and am praying every day!
    Love and hugs,

  6. Missy says:

    I explained this whole concept to my mom – at first it didn’t quite sink in, but she tried. Now I LOL as I’ll get phone calls from her along these lines “There was a bit on Channel 12 about Down syndrome. It was pretty good, but they kept saying “down’s kids” and “she is down’s” and it made me crazy, lol.”

    Thank you to everyone reading the blog and “getting this!” Verity (and her friends like my Violette)  deserve being talked about like the wonderful little people they are!

  7. Tami Swaim says:

    I am so happy that you posted this.  We have always tried to be good about saying that our son has autism rather than here’s our autistic son.  Oh, you so hit the nail on the head with this!  I always cringed to here, “that autistic kid” in reference to my brother and I feel the same way when it comes to my son.  It’s interesting too because he was recently reevaluated and his “label” has been somewhat readjusted to PDD-NOS (pervasive developmental disorder-not otherwise specified).  The diseases, sicknesses, ailments, disorders, syndromes that some of us have should not define us as a person.  We don’t say, “so and so my cancer friend”…that wouldn’t be right!  Well, again thank you.  I too am not militant about this point but it is good to pass on and reeducate others in this area.

  8. Jennifer says:

    Excellent post.  Although not familiar with the history of Down syndrome (I had to fight myself to not capitalize syndrome), I would think most people would be instinctually aware, maybe not consciously, that a person IS not A syndrome, not an illness, not a disorder.  Would one want to be thought of as such?  I think not.  I hope that the medical professionals would be aware and particularly careful of that.
    Verity IS many things as you wrote: a daughter, a sister, and a child of God; SHE IS also prayed for and anticipated with great joy!
    Grace and Peace,
    Jennifer V.

  9. Stephanie Blanchard says:

    Susanna, for some reason, I’m just seeing this post. It was on the side bar for me this morning. When I read the post, I almost woke up the whole house with a huge, hearty AMEN! Oh how it pains me when people first language is not used. My Xander is first a child and secondly drug exposed. Not a “drug baby” or “crack baby!” He is also my SON first and adopted. It stings when I hear people say “Oh that one is her son and that one is adopted.”

  10. Christina Brown says:

    As a mom of children diagnosed with Asperger Syndrome…  I am so glad you wrote this!

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