Conversations about Down Syndrome 101

“Down syndrome isn’t a burden. How people react to it is.” – Stephanie Holland

Ready to learn something new? Welcome to Conversations about Down Syndrome 101! Even the closest family members have been unsure how to bring up Down syndrome or what to ask.  AND THAT IS OKAY! Honestly, language is a big deal to me. Words can either create barriers and promote stereotypes, or words can put people first and show respect. Theo is much more than a label, and I know you all agree. So here is my break down of how to have a conversation about Down syndrome with me.

Tip 1: It is important to put a person before a diagnosis.

Example: You don’t say: “I have a cancer brother.” You say: “I have a brother with cancer.” So DON’T say: “He is a Downs baby.” Please say: “He is a baby with Down syndrome.”

Tip 2: It is important to understand (and use the language) that a person is not the diagnosis.

Example: You don’t say: “My brother is cancer.” You say: “My brother has cancer.” So DON’T say: “Theo is Downs” Please say: “Theo has Down syndrome.”

Tip 3: Saying “Downs” is slag and not appropriate. Please say “Down syndrome.”

In addition to slang, don’t say “Theo suffers from/afflicted by Down syndrome.” Down Syndrome is not a disease. Please say: “Theo has Down syndrome.” Or “Theo lives with Down syndrome.”

Understand? Pretty simple change in words, but a huge difference in meaning. Okay, Great! Now that you feel good about that, let’s talk about having a conversation about Down syndrome. I made a table based on the comments and questions I have had since Theo was born. The first table are questions that I will answer, but uncomfortably. Haha. The second are questions that I LOVE to answer. I am happy to answer any question, but I will answer honestly and may say something sassy back.

Section 1: Uncomfortable conversations
If you say…	I will say…
“I’m sorry to hear that.”	“I’m not. Why should I be?”
“Did you know?” or “Isn’t there a test for that?”	“Why do you ask?” *aborting Theo was NEVER an option* SUPER OFFENSIVE TO ME*
“How bad is he?”	“First. He isn’t bad at all. Second, Down syndrome is not a spectrum disorder. Every cell in his body has an extra copy of the 21st chromosome. He has Down syndrome. He is also a person, so as he grows up he might have more challenges with walking or spelling or multiplication, but that doesn’t make HIM bad, or anywhere on the spectrum of ‘bad.’”
“Can you fix him?”	“There is nothing to fix about Theo.”
If your kid asks you why his tongue is always out and you say, “Because he is sick.”	“Hi. I overheard you giving your child the wrong answer.” Me turning to child and saying, “This is Theo. He is not sick. He has Down syndrome, which means a few instructions in his body were copied too many times and he is a little different than you are. His mouth is actually smaller than average and his tongue doesn’t comfortably fit inside his mouth, so he likes to keep it out.”
“You know you will never live a normal life.”	“It will be a better one than yours.”

 

Section 2: Happy Conversations
If you say…	I will say…
“Can he roll/crawl/walk/etc.?”	“GREAT QUESTION. He rolls everywhere to get around. He is working on scooting.”
“Will he be able to…?”	“Again, great question! Theo will meet every milestone, it just takes a little longer because he has lower muscle tone.”
“How does Down syndrome affect him?”	“Down syndrome causes mild to moderate physical and intellectual delays. We have started early intervention therapy to give him support.”
“Will it be likely that you have another kid with Down syndrome?”	“Actually no. Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).”

Now that you have seen some examples, you get the idea, right? Respectful language goes a long way. :)

Congratulations! You have now completed Conversations about Down Syndrome 101!  Have more questions for me? Please have a conversation with me with your questions using “person first language” and I will be more than happy to answer them.

Lots of love,

Abby