Now that I have three children, I’ve come to realize that having a child with Down syndrome (like Charlie, my oldest) is just like having any child — but with a pendulum of emotions that may just peak a little higher and dip a little lower at times.
For example, I’ve spent hours sobbing and getting fired up after hearing someone call a person with an intellectual disability a “retard.” Phew. Nothing brings out my Mama Bear like witnessing that.
Likewise, I’ve done the ugly, sobbing, red-faced, snotty cry because I’ve just been so unbelievably proud of Charlie and how he just keeps on going and keeps working hard to keep up with his buddies. That’s a state of elation I cannot describe — but I’ve learned to pack tissues.
Then I have the moments of absolute lunacy. The moments when a complete stranger makes either a well-meaning but ignorant comment or they just so clearly open their mouths when they should have chewed on their toes.
So, join me as we dive into the wonderful world of "OMG did she just say that?!" Names have been changed to protect the innocent and to prevent the not-so-innocent from making things worse by following up with any form of, “Oh, gosh, wow, you know I didn’t mean it that way.”
1. “Does he still have The Down syndrome?”
Laurie has two boys with Down syndrome, one of whom is adopted. She also has the sweetest, cutest little neighbor who cannot help herself from asking if little Junior “still has The Down syndrome.” As we say in the South, bless her heart! Even though we might want to reach in and extract that extra chromosome sometimes, someone cannot undo his or her Down syndrome. Much like the sweet lil neighbor can’t undo her strange embrace of vernacular that makes me think of The Clap.
2. “I can’t believe you let your child stick his tongue out at you!”
I remember with bitter fondness the time an older woman chastised me in a grocery store for “letting” Charlie stick his tongue out at me. First of all, he was an infant. An infant, people! That’s like reminding a giraffe to send a thank-you note. In this case, it was an opportunity to educate her about how a child with Down syndrome often has low muscle tone, including oral motor skills. So, Charlie wasn’t sticking his tongue out at me on purpose — but in retrospect, he might’ve been targeting her pretty appropriately! Unfortunately, I was still a new mom, so I gritted my teeth, kept moving and perfected a new form of under-my-breath profanity.
3. “You know, there are drugs for that…”
Oh, dear. The night a neighbor cornered me in my husband’s elaborately designed Halloween Garage of Doom and reassured me we could treat Charlie’s “thing” (I assume he meant Down syndrome) with “drugs” was also the night I began imagining how we could integrate our neighbors into the Garage of Doom. As corpses.
P.S.: Down syndrome is not a disease or an illness. It's an extra chromosome. The best prescription is love and inclusion. Pass it on.
4. “But she doesn’t look like she has Down syndrome!”
What Karen wants to say in response is, “Oh my gosh, you mean we forgot to put the sign around her neck again?” She admits she has to tame her inner crazy person when she hears people remark on how her daughter “doesn’t look like she has Down syndrome.” Which seems totally unreasonable. I mean, I often hear, “Wow, you don’t look like you have depression!” It’s just too much effort to reply, “Really? And you don’t look like you fell off a pickle boat!”
5. “He doesn’t even look Mongoloid!”
OK, I had to include this one even though it’s similar to “she doesn’t look like she has Down syndrome” because… OMG. Really? Someone actually said that? Lee says she still cracks up to remember it. To give you some background, the term “Mongoloid” is about as outdated and inappropriate as it gets in the world of genetic conditions and terminology. It was widely used in the days when families would institutionalize children with genetic conditions. Is it too much to wish we could institutionalize people who make these comments today?
6. “Awww! Down’s kids are so sweet and happy all the time!”
Ginger couldn’t miss the irony in hearing this one as she was being slapped in the face by her dear, sweet cherub who has that extra chromie. Look, y’all. Kids are kids. No matter their chromosome count, they experience every wonderful, frustrating, cranky, loving emotion every other kid experiences. And sometimes Mama’s face takes the brunt. When you make those comments on Facebook threads like Jen’s, after she just took a moment to share her frustration at her child’s less-than-compliant behavior, well, you come across as someone both insensitive and in need of a reading comprehension class. P.S.: Please use “kids with Down syndrome,” and not “Down’s kids.” The guy who identified that extra chromosome neither owns nor defines my little firecracker!
7. “Oh, I can tell he’s going to be high functioning!”
Jen’s comment as she shared her response to this comment made me laugh out loud: #MagicSkills! When a baby is born — any baby under the sun — no one, nowhere, no-how can tell anything about what that baby will or will not be able to do. Period. Ever. Never-ever.
Likewise, it may be impossible to envision the child who eats peas through his nose and proudly wears underpants atop his pajamas will one day become a world-renowned surgeon… but it could happen! #PresumeCompetence!
8. "I'd definitely want a kid with Down syndrome. They're like having a really loyal dog!"
This one warrants absolutely no explanation, but please let's all stand and applaud Anne, the mother who had to hear this nurse's comment as she was about to have a colonoscopy. Anne, may we all have access to sedation before fielding these absolutely asinine comments!
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