Most of me knows this post needs writing because of the lack of interaction and information most people have, but part of me is a little sad this needs to be said.  Please know that I am sharing not to condemn, but to enlighten and well, to raise awareness, since that is what Down Syndrome Awareness Month is all about.

As a woman who has worked with special needs children for more than half her life (see how I avoided years there?), helping others learn non offensive terminology has been important to me for a long time.

It got personal a bit over six months ago when we learned of Jubilee’s diagnosis. So, for my last post for this year’s Down Syndrome Awareness Month, I’d like to share some words we should say and words we shouldn’t say in referring to people with Down syndrome or in regards to Down syndrome.

Words to Say and Not Say Down Syndrome Awareness Month 2015 WEB

A person with Down syndrome.  Not a Downs person. And not a Down syndrome person.

A person with Down syndrome is a person first and foremost.  Their syndrome is a part of them, it isn’t all they are.  Person first language puts the emphasis where it belongs.  Saying that my Jubilee is a Downs baby instead of a baby with Down syndrome sounds like we are arguing over semantics, but semantics matter and me hearing that you see her as a baby first matters to me.  And it matters to most mamas I know.

I hurt a little bit when someone says, “Oh, a sweet Downs baby.”

While it takes a bit more effort to use person first language, it’s worth the effort.  Plus, see the next note.

Down syndrome.  Not Downs. Not Downs syndrome.

It’s really common to add the s to the end of Down, but it isn’t there.  It’s not a huge deal, but to be accurate there is no s.  So the well informed person knows that it is one kind of syndrome (hence the lower case letter for syndrome) and this one is Down syndrome, for the following reason:

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.


Intellectual disability.  Not retarded. 

In the past, the term mentally retarded was used to describe people with intellectual disabilities.  Due to the negative connotation and stereotypes, that term is no longer used.  So, choose intellectual disability, intellectual difference, developmental disability, cognitive disability, or cognitive delay when referring to the mental ability area for someone with Down syndrome.

Annoying, unintelligent, messed up, or whatever.  Not retarded.

When we are less than impressed with someone or something and we want to use a disparaging word, retarded shouldn’t be the word.  Attaching retarded to a negative comment is insulting and rude to those with mental challenges (formerly known as mentally retarded), who can’t do anything about their disability. It equates two groups that shouldn’t be equated.

Someone was maybe clueless.  Not retarded. Something is messed up.  Not retarded.  Someone may have been immature.  Not retarded.

Every time I hear someone say something is retarded, I twitch.  This was true before I had a daughter with Down syndrome, but now it seriously seriously aggravates me.  Choose the right word.  Retarded isn’t it.  I promise.  #spreadthewordtoendtheword

There ya go.  Four little vocabulary lessons.  These apply to Down syndrome, but all but one of these could apply to lots of situations and people with disabilities of all kinds.  For example, a child with cerebral palsy is not a CP kid.  He’s a kid who has CP.  An adult with a head injury causing cognitive disabilities is that, not a head injured retarded person.  Do you see and hear the difference?

These seemingly little changes in vocabulary make a big difference to those with Down syndrome and their families and community.  I’d be blessed if you shared these mini lessons with your friends and family. They may not know.  And that’s what raising awareness is all about.

Are any of the little language lessons new to you? 

My only other post for Down Syndrome Awareness Month this year… here.

The Brouse House/Morning Star Academy Students & Curriculum for 2015-2016

October 27, 2015

School started over nine weeks ago, but I was and have been and continue to be otherwise occupied, so I hadn’t shared the photos yet.  Or taken them. Whatever. But with much joy and pride, I share my students for the 2015-2016 academic school year.  Only five in Morning Star Academy this year since HB is […]

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New to the Team, Here’s What I Want You to Know about Down Syndrome

October 13, 2015

Since Jubilee is only ten weeks old, I’m new to the Down syndrome community and new to special needs parenting. Sure, I’ve worked with children with special needs of all kinds for over twenty-five years, but this side of the zone is much different.  And well.. October is Down syndrome awareness month.  I have wanted […]

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If We Want Planned Parenthood Supporters to Admit They’re Wrong, We Must Set the Example

September 29, 2015

The ten undercover Planned Parenthood videos should have startled our nation.  And today Cecile Richards of PP testified on Capitol Hill, having to admit to lies and deception.  I certainly haven’t seen the uproar that either of these hould be causing.  And part of the reason {yes, there are more, but this blog post is […]

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{A Second} Letter to My Mom in Heaven

September 24, 2015

Dear Mom, Well, it’s your earthly birthday and while I doubt you pay attention to that now in heaven, I do.  September 24 is your day. This is the eighth time I celebrate your birthday without you and I have even more questions I wish I could ask and news I wish I could share. […]

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My First View of Holland was Scary {My First Six Weeks as Jubilee Mila’s Mama}

September 18, 2015

I sit here in my living room, taking a breather from trying to get a firm routine in our home.  Six and a half weeks out from Jubilee’s birth and almost two weeks since we came home from the hospital.  Life is different.  And so am I. I thought I was prepared for having a baby […]

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Jubilee Mila is Here! {our adoption story}

August 14, 2015

Eleven days ago my life changed in a way I can’t fully appreciate yet.  I became a mother via adoption. I stood in the OB operating room and watched as a dear friend delivered her daughter and my daughter.  A squirming, beautiful, and instantly loved baby girl came forth. And I wept. And MH wept. […]

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Why I Will Wait a Few Days to Share Photos and Baby Girl’s Name {our adoption story}

July 23, 2015

The countdown is real.  Baby Girl could arrive any day.  The estimated due date is August 15, but we know she will arrive before that because the doctors aren’t letting her go past her due date (risks associated with Down syndrome) and that day falls on a Saturday.  So, if she doesn’t arrive before the […]

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How the Last Steps of Our Private Adoption Work {our adoption story}

July 21, 2015

I shared nine months ago about how our agency adoption works.  I wanted to help explain the process a bit more.  The steps are nearly the same, even though we are now on a private adoption path, with only weeks until our daughter’s birth. Still, I hadn’t realized how fuzzy all of this is to those […]

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How I’m Inducing Lactation for Baby Girl {our adoption journey}

July 19, 2015

We are about four weeks from estimated due date for Baby Girl.  I am seriously excited.  And distracted from all other tasks. It’s party hilarious how much so this is true and partly annoying.  Just like when I was pregnant with our other six kiddos.  Ahem. And just like our other six kiddos, I plan […]

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