Tuesday, April 23, 2013

You Knew You Were Having a Downs Baby and You Didn't Terminate? How to Respond to Rude, Crude and Crazy Comments

"You knew you were having a Downs baby and you didn't terminate?"

I swear, this is a direct word for word quote from a conversation I had just a few weeks ago. Sometimes things like this take me time to digest. I tell my mom about them. I tell my husband. I tell my best friends and then I kind of put it in the back of my mind for awhile until I can actually digest what transpired. This post could have easily been titled "Crazy shit people say to me without thinking", but that seemed a little extreme. And yet, that is what goes through my head when people say things like this. It's not every day. It's not every other day. It's usually about once a week. Sometimes I can go two weeks without something this crazy. . .and then I see this little boy and I completely come apart and don't understand why or how anyone could ever think such a thing, let alone say such a thing out loud to his mommy.

Dorothy and Joey hanging at the juice/snack bar.
The thing the scares me the most is the source of this comment. This came from a highly educated and worldly individual. The entire conversation was surreal. They said, "Tell me more about Down syndrome."

I said, "It occurs when an individual has an extra copy of the 21st chromosome, thus trisomy 21. The person has three copies of the 21st chromosome instead of the typical two copies most people have."

They said, "I knew that. I just wanted to hear how you said it."

Awkward pause.

They said, "Now, you knew when you were pregnant?"

Me, "Knew what?" 

Those were the words I spoke, but inside my head I was struggling to remain standing up and not drop the phone. I knew in those surreal few seconds exactly where this conversation was headed and I did not shut it down because I was in shock. In my head I thought, "There is no f-ing way you are about to say what I think you might say."

They said, "You knew you were having a Downs baby and you didn't terminate?"

Me, "No. We did not terminate. Joey is sitting in the kitchen right now."

Inside my head a million thoughts and reactions were sprinting through. Thoughts like, "If you only knew how many times we were asked if we wanted to terminate. If you only knew how scared we were to have a child with a disability. If you only knew the struggles we went through when we were told at 13 weeks Joey would never survive a pregnancy and we should just end it before it was too late. If you only knew how I almost didn't have the precious baby who is sitting right here, right now because of people like you and people who scared the crap out of us about having a child who has an extra chromosome. If you only knew."

But I can't say things like that in moments like this one. I have to be unfaltering in my strength. I have to be strong in the face of ignorance. I have to stand strong and try to continue to show the world that one extra chromosome is absolutely nothing to be afraid of.

The craziest part of this story is that this happened not only once, but twice. TWICE! Within weeks! The second person who asked me almost the identical question was a mom of a child with a disability. You could have knocked me over with a feather. We met at a wine bar and started talking about kids and when she found out about Joey and how we knew before he was born that he has Down syndrome she literally said, "You knew he had Down syndrome and you didn't terminate?" 

Is it a Down syndrome thing? Is this what the general public thinks about Down syndrome? I am trying to figure it out and I am having a really hard time. How do you respond to a comment like this? 

The Incredible Tommy and Super Joe at the hospital checking Joey's thyroid, CBC, RBC, WBC.
The thing is-- and there is a thing. The thing is that having a child with specialized needs comes with stuff. It just does. There is stuff. Some days the stuff isn't really that much. Some days the stuff is too much. Parents of children with special needs don't want you to feel sorry for us. We don't want you to feel sorry for our children. We would like people to know that there is a lot of "stuff" going on. For some of us it is multiple doctor and therapy appointments. For others it is medical equipment and specialized support gear. For some it is serious illnesses and prescriptions to manage and keep track of. For others it is trying to figure out our child's schooling or job. There is stuff. For parents of kids with Down syndrome there is a variety of "stuff" at any time. For almost 50% of us there are congenital heart defects to worry about. For at least half of that 50% there is heart surgery and a lifetime of care making sure our children don't ever get too sick or put too much stress on their hearts. 

Super Joe leaves nothing behind. 110% every day!

Then there is the issue of cognitive, language and verbal delays. This is stuff. Stuff we think about constantly in the back of our minds even as we try to navigate the regular every day stuff that everyone has. There is always the leukemia and dementia and Alzheimer's stuff that also haunts the back of our minds. We try to live one day at a time and appreciate every single second without letting that stuff fill our minds and hearts with worry, but it is almost always there in the back of our minds-- some of the stuff.

There is the concern of whether or not our kids will have friends. Will they fall in love? Will they live on their own, in a group home, in an apartment, with friends, with family, with us? Will our kids have a job, enjoy their job and feel fulfilled. This is the stuff we all worry about with all of our children regardless of special needs. However, for those of us who are parents of kids with extra needs-- this is more of the stuff we think about. That we worry about despite our most positive attitudes and most sunny outlooks. See, we have to be strong. We have to be strong for our other children. For our families. For our spouses. We have to be the one who says it will all be okay no matter what happens. We will manage the stuff.

I read the following article just a few days after my insane "termination" encounters, but I literally printed it off and put it in my purse. I have memorized a few favorites such as, "excuse me", "why do you want to know?" and "why would you say that?". What I love about this amazing list from one of my new favorite blogs, is that these can be used in all sorts of uncomfortable or awkward situations! 

One of my dear friends has beautiful children who have amazing and beautiful names and she is constantly getting remarks about their names-- this is perfect for that. Nosy strangers? Pick one of these! Intrusive comments? This is your list! This is from the Friendship Circle Blog: Special Needs Resources for Parents & Educators.

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive.
It may help to have a response prepared for that day.  Having that comeback line at the tip of the tongue gives a little edge of confidence that actually prevents people from saying rude things in the first place.  Here are ten simple responses that work in real life situations.
10. “Excuse me?”  Miss Manners says that this is always the most polite response.  It causes the person with the original comment to pause and re-think his words.  If he repeats the rude comment, simply repeat in a sweet voice, “Excuse me?”  Keep going with it until the light bulb switches on.
9. “I’m sorry that my (or my child’s) permanent disability has caused you a temporary inconvenience.”  One of my buddies uses this line, and it is a conversation-ender.
8. “Thank you for your concern.”  With a smile.
7. Silence.  With a smile.  And walk away.
6. “Why do you want to know?”  Sometimes it is necessary to answer a question with a question, especially when you are cornered by a personal question on a delicate topic.
5. ”Why would you say that?” Force them to think about what they just said.
4. “Nothing is wrong with her.  Is something wrong with you?”  Ask with genuine concern, without sarcasm.  Often the person is asking because of a family member with a similar condition.
3. “Yes, he can talk.  He can also hear and understand everything you say about him.” For just a little guilt trip.    
2. “I respectfully disagree.” 
1. “I have (or my child has) an equal right to be here.” This is the line I’ve been saving all these years – but I’ve never had to use it in any of the many, many awkward public situations I’ve found myself.  My belief in equal rights is what makes me stand taller.
What is your standard response to unhelpful comments or questions?  


  1. I have only ever had a do ment about terminating once when Kamdyn was about 6 weeks old. I was shocked too. I have never been asked since. But now that I thi k about it, I get asked a lot if we knew while I was pregnant. Since we didn't, the conversation always ends there. It makes me wonder if people would go there if we had known.

    1. I'm so glad you haven't been asked since--there is definitely a "thing" out there about people who knew and chose to have their children anyway. I have also heard some parents who did not have testing performed and they received similar responses asking them why they didn't test.

  2. SO proud of you!!!! I think you are educating a whole lot of people on the "mystery" of Down Syndrome. I also hope people, although a right to speak their mind, do not make uneducated comments or questions because they want to seem concerned. Sometimes it is better left unsaid if you do not understand what you are talking about.

    1. I think you are exactly right-- some things are better left unsaid. I have tried to keep that in mind when I am in a situation that I am not familiar with. Instead of feeling like I have to say something I know try to think about whether I really need to say anything at all. Thank you for your note!!

  3. Whoa! I cannot believe people have asked that. . . not only once but twice. What the hell is wrong people? I wonder if I don't get that because Chunky Chicken was hiding away her extra chromosome until birth. Seriously, I just. . . Grrr! I am so angry. I want to say #4 when I hear inconsiderate things but I tend to just stand there open mouthed and silent. I have all sorts of saucy comebacks after the situation and they are long gone. I think that perhaps we all need to carry a little pamphlet showing the awesomeness of Joey/Ellie/Kamdyn and facts about Ds and facts about their rudeness to hand people when their ignorance runs along the extraordinarily rude side. Then I can be silent and just shove the pamphlet in their face.

    1. I like your idea, Anna!!! Kind of like those cards they give out in a soccer game-- red card, yellow card-- I think we just need a "rude" card to hand out with their precious pictures on one side!!!

  4. I, thankfully, have not encountered anyone like this... But I am sure the time will come. And when it does I will remember your list of responses and may just utilize all ten lol

    1. I hope you never have this kind of encounter, but I hope this list helps everyone feel a little more prepared for the unexpected comment!! :-)

  5. Most people are sympathetic when the parent didn't 'know' the child had special needs prior to birth. However if you dare to have a child KNOWING they have a disability, that's a whole nother crowd right there. We usually don't encounter bias when it comes to Spidermans special needs, because he suffered brain damage due to medical Mal-practice. So we didn't 'do' it. However I've seen Spidermans special needs classmates treated horribly because they were 'born with it'. It's completely weird but it's definitely real.

    1. Isn't it weird how real it is? I had no idea this kind of prejudice existed. This kind of judgment. I still have a hard time wrapping my mind around it. Tell Spiderman hello from Super Joe!!

  6. It just floors me that people actually say such things. I get asked all the time if we knew. I always wonder why they want to know, and in the back of my mind it seems like it HAS to be because their thoughts are going in that direction. So perhaps I will start asking why they want to know. But answering like I do, like Tricia, it usually ends the conversation. But lately I have been keeping it going by telling the person that I am glad that I didn't know and why. But in this context I would have to seriously be held back. I'm not a violent person, but my initial thought is that I may just come out swinging. Or saying something horribly rude. I think I'm going to have to put #4 in my pocket, just in case. In the meantime, I'll practice my sweet smile with #1. Thanks for posting these comments. Too much of the time we are left dumbfounded.

    1. #1 is the one that sticks in my mind and I like Deborah's response below "Did you mean to say that out loud?"-- might have to use that one too!!! :-) I also like your idea of asking them why they want to know. I'm going to use that one and see where the conversation goes. I'm glad you liked the list-- the Friendship Circle Blog is such a great resource!!

  7. One of the best responses I've heard was "Did you mean to say that out loud?"


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