"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.|
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."
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.|
|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.
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?