Sunday, January 9, 2011


I don't want to offend anyone. It's funny how we say that followed by a giant "BUT" meaning that we most definitely will offend someone. Truly, that is not my intention with this post, but something really rankles me and I need to speak to it.

Twice in the last few weeks, I have visited blogs of adoptive parents. They have both adopted children with Down syndrome, which is fantastic! They are both amazing women and wonderful mommas. I have great respect for them. (here comes the "BUT"...are you ready for it?)

But, they both refer to their children with Ds as "downsies". Just writing it out raises my blood pressure. I tried seeing it from their perspective. I understand that they view it as a term of endearment. They obviously love these kids. They are smitten with the characteristics that make them unique. They use "downsie" as a pet name for their cherished children.

The problem with pet names, however, is that they often make the designee seem like, well, pets. It puts these kids in a separate, cutsie category from the rest of the family, even the rest of society. It makes them seem slightly subhuman. Even with the best of intentions, calling children with Down syndrome "downsie" sounds condescending and even demeaning.

You may think I'm over-reacting. Perhaps I am, but imagine if these same families (both white) had adopted children of another race. What if they, loving the characteristics that make their new kids unique, chose to call them "darkies"? Would that be acceptable? Does that make you cringe as much as "downsie" does me?

One problem I have with this terminology is that I have found that there are two camps in the general public when it comes to attitudes about Down syndrome. There is the "burden" camp: those that believe people with Ds contribute little to society, are a burden to their surviving siblings when the parents pass on, and that it's even irresponsible to carry a Ds pregnancy to term. That camp deserves a post of their own.

The other camp is the one that's pertinent to this discussion. It's the "sweet" camp, as in, "Ahhhh, they're so sweet". Of the two, I prefer this one, but neither are accurate. People with Ds experience the whole range of human emotions and attitudes. Eon is alternatingly sweet and crabby, easy-going and stubborn, happy and mad, just like the rest of us.

"Downsie" sounds very much like it came from the uneducated sweet camp. I know of self-advocates, young adults with Ds, who are struggling to be taken seriously. They have to overcome unbelievable obstacles to earn the respect typical people are afforded at birth. Parents who call their children "downsie" are perpetuating the stereotypes that are limiting these individuals. In so doing, they are limiting their own children and decreasing their potential. They are also limiting my child.

The other problem I have with this label is that it shows that these moms, as awesome as they are, have not spent a great deal of time immersing themselves in the Down syndrome community. I wish they would. They would quickly learn about "people first language" and correct terminology, but more importantly, they would have instant support and answers for questions about medical problems, IEPs, best toys, behavioral issues, nutrition, speech/language, therapies, potty training, etc. That would be the best for their kids. They wouldn't have to rely on the, often uninformed, medical community for answers. We in the Ds community would benefit from their ideas and input, as well.

One day, I hope to join these women in adopting a child with Ds. But please note: That child may have Down syndrome, but will also have the same respect, status in the family, and unlimited potential as his siblings. While we will love him dearly and, I'm sure, find him incredibly cute, he will not be a "downsie".


  1. My mom has said the same thing, basically...although she ADORES Lily she tells all her friends "Patti had a Downs baby." Which has nothing to do with political correctness, and everything to do with how I feel after she says that. Like..there are girls...and boys..and then there are "Downs babies." It feels like- a breed all to itself. I am sure she does NOT mean to make me feel that way. But it is how I feel. And Downsie creeps me out.
    Just sayin'.

  2. I don't want any of this to come off as sounding hostile, because it's totally not. We are all entitled to our own opinions, and I love that our Down syndrome parenting community is such a rich source of ideas.

    One thing that I think is important to remember is something we're usually quick to remind the "outside world" of: our children are not public property just because they have Down syndrome. I'm sure we've all encountered people who think it's okay to put our children (figuratively speaking, of course) into this big melting pot of generalization, and who seem to act as if they belong to the world by virtue of their extra chromosome. I believe that every child with Down syndrome has the potential to be a beautiful ambassador of the truth, but first and foremost, they are their parents' children. The topic of what a mother chooses to call her children as a term of endearment really isn't up for discussion. I've known people who call their kids "Stinky butt" as a term of endearment. I find that rather gross. But it's not really up to me.

    I happen to know three beautiful, chromasomally enhanced little girls whose mommy calls them her Downsies (one is bio, BTW), and she has also adopted children of other races, and I can assure you, none of her children seem like pets, and she is quite involved in the Down syndrome community. She is just celebrating something that we are all so desperate for the world to see---that our children's Down syndrome is something to be embraced and celebrated. She's refusing to let it be a stigma. And by doing so, she is robbing the semantics of their power to degrade. She is saying that having Down syndrome is to be celebrated along with having blue eyes or curly hair or porcelain doll skin, or a whole host of other features that we don't hesitate to play up and come up with terms of endearment for when speaking of our children.

    Okay, sorry for the exceedingly long comment! Thanks for blogging! :)

  3. I have never heard anyone use the term "downsie" but I agree with you 100%. It is incredibly demeaning. Adopting a baby with Down syndrome is a wonderful, wonderful thing to do, but it is very important that the new mom immerse herself in her new "culture". You are very brave to post this, risking the "offense", but I'm glad that you did. Those moms that you're referring to probably don't even realize what they're doing.

  4. I hate this term. I recently found a blog that had this as part of the title, and while it had some good posts, I just counldn't bring myself to follow along because of the title. Just don't like it.

    When Claire had her OHS surgery one of her nurses referred to another patient as a downser. It just came off as ignorant and dismissive.

  5. Yep, you're almost always going to offend someone but when you have a blog, it's a given. I agree Tara. I can also agree that we can't really tell a mom what not to call her child as a nick name, I mean, we just can't but "Downsie"? I'm sorry but if ANYONE ever called Bennett "Downsie" I would be extremely offended. And I would let them know too. I feel like we work so hard to tell people are kids are very much like other kids and for a mom to nick name their child that, it's just telling everyone to look and it's almost saying:
    "my kid is way different than yours", and I'm going to make sure everyone knows. Don't get me wrong I think it's fine to be different, in fact I encourage my 6 year old to step out of the box and if she's the only one wearing something a little "different", I tell her to go for it or if she likes something that none of her friends like, so what-silly examples but I'm working my way up as Bennett gets older and she will see that he is different eventually. But to label your child with that name, I just don't get that.

  6. I am with you on this 100% Tara. It's dehumanizing and demoralizing and just serves to emphasize differences, furthering the general public's marginalized views of persons with Ds.

  7. I definitely choose not to do this, call my three daughters Downs kids, or Downsies. I actually cringed for a long time when I saw it written, though the people who do use this term of endearment have all been exceptional moms. I am a People First mom, I take PC to the nth degree sometimes, so I feel like I am a bit too sensitive about certain things. I have to admit that writing, "My daughter with Down syndrome" takes much longer than my Down's Girl, so being PC takes much longer, but all my girls are PEOPLE first, their syndrome offers challenges for certain, but I never want it to be all anyone every thinks about when I talk about them.

    What I truly dislike hearing is how someone "suffers from" Down syndrome, oh, that never fails to annoy me.

    Reading what another parent wrote in a comment, we often call our kids Kara Butt, or Amanda Stinker, mostly because when they go poo, it is incredibly awful...we certainly do not mean they are butts. ;o)

  8. I'm posting anonymously so as not to receive any hate mail:) But I respectfully disagree with a previous comment that "what a mother chooses to call her child isn't open for discussion."

    I'm going to use an outrageous example, only to demonstrate that this is a good discussion to be had, and I'm glad Tara blogged about it.

    If a mother chose to call her child "tardy" or "my little retard"- wouldn't every one of us want to throw up and say that is completely WRONG? I don't think anyone would have a problem with saying we disagree with that mother's chosen term of endearment.

    So Tara is saying...and I am saying...that I feel repulsed when I hear the term "Downsie" used.

    I realize these moms are choosing to use "Downsie" as a term of endearment, and of course it IS their right to do so as a parent.
    It's also my right as a parent of a child with Ds to say- I wish those moms would not use that term of endearment, exactly because of the reasons Lisa (above) just stated.

  9. Downsie? Really?! I think your parallel to the word "Darky" is perfect...and that would be totally unacceptable and everyone knows it. Maybe I'm splitting hairs, but a term of endearment to me is not the same thing as a nick name.
    Terms of endearment rarely have anything to do with something factual, whereas a nick name is usually given because of something factual. Think about it..."sweetie pie", "honey bun", "cupcake" or most any other term of endearment is just that-something over-the-top sweet and endearing.
    A nickname can be given out of affection, but many times can be annoying and hurtful too. I'm quite certain that my two adult friend with Ds would both take great offense at being called a "Downsie"
    It's not cute.
    It's not a term of endearment.
    It's awful.
    Maybe these moms think they are being clever, but it is offensive to me.

  10. I agree with your post. But what makes me really struggle with the "Downsie" terminology is that sometimes the moms who use that in regards to their own kids with DS are actually moms who are excellent advocates of their kids and active in their development. I just can't reconcile the fact that they are DS "power moms" but still use that kind of term. It frustrates me. I wonder, though, how my opinion on issues like this will change by the time my son is 18. Maybe at that point I will feel more comfortable using less PC jargon, but for now, I wholeheartedly agree with you!!!

  11. I have to say, most of the time I am pretty easy-going about words. I don't get all worked up about WORDS as much as ATTITUDES. But "downsies"... it's a little creepy. It actually made my stomach turn a little bit. But let's just hope that the ATTITUDES of these moms speak louder to their children and the people around them than their WORDS. And let's all hope we can prevent our own children from ever hearing that term directed at them.....

  12. Wow, I have never heard that term until today. I must confess, I am horrified! It makes it sound like children with Down syndrome are not completely human.

  13. I really enjoyed this post. Being in the process of bringing home two children with Down syndrome, I have been thinking about some of these things, and have been interested in the many perspectives parents seem to have.

    I want to be respectful of my children and of others born with Down syndrome, I think especially because I will be receiving my daughters specifically through adoption. I want to delight in who they are, which INCLUDES their extra chromosome (which I sometimes refer to as "sweet", NOT because I think it automatically makes them sweet 24/7, but because it is something I value in them, if that makes sense. Plus they're little girls--I wouldn't say their "sweet extra chromosome" if they were older.) ANYway, it's interesting to see the spectrum of opinions.

    When I think about the girls we are adopting, I want them to have dignity just like anybody else, and to be appreciated for who they are. This includes Down syndrome, but they definitely should not be defined by Down syndrome.

    Thanks so much for sharing these thoughts! (I have interestingly only seen the word "downsie" used by a biological mother. It's not a word I would use, but of course I respect someone else's decision to use it, especially with their biological child.)