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  • Writer's pictureAshley Rogers

Why World Down Syndrome Day matters: from the eyes of a mama

Updated: Mar 21, 2023

A few weeks ago I dropped my daughter off in front of the school. We pulled through the carline as my teenagers rushed her out the door, as Esther likes to go at a- let's call it- "more reflective" pace. As she climbed out of our the car like she was climbing off of a horse after a long ride in the back country, she popped out at the same time as another little girl from her general ed classroom. Esther smiled and ran to walk next to her. The young classmate glanced to her side and briskly tried to walk a few steps ahead. My heart sunk. Esther tried again to say hi, walk next to her, and even asked her to wait. The girl walked faster, pretending she didn't see or hear Essie's voice, or notice her scrambling to catch up. The tears began to catch in my throat as I pulled away, knowing I couldn't rescue her from this. Esther eventually slowed, accepting her walk into the school without her classmate. She would, I'm sure, continue on with her day, finding someone else to talk to. I knew she would because I've seen it. On field trips, on play grounds. In the spaces where other kids learn the playground rules of social engagement, Esther has learned other things. She has learned deep inner strength that puts mine to shame. She holds her head up, embraces her sad and then tries again.

World Down Syndrome Day (3/21 for 3 of the 21st chromosome instead of two) is a day of celebration. It's a day where we acknowledge that what those in the DS community bring to the table is beautiful and needed. On average, the US termination rate for those unique babies that will be born with Down Syndrome is 75% (higher in some countries). It's a sobering and painful ratio to wrap my mind around. Now with new U.S. laws in place, there is both a reality and debate happening in court rooms and around tables, even within the DS community.

There will inevitably now be more children born with Down Syndrome in the US. Likely a lot more. While I do consider it a celebration personally, this will not be without it's challenges.

Even though huge strides have taken place in recent years to celebrate those with disabilities and special needs, there is still a long way to go. Pioneers have traveled the road ahead to create laws, programs and advocate for those of us that now find ourselves supporting a child with Down Syndrome. To that we say with every fiber in our beings- thank you. But it's all still so new. I have just now begun to see models with DS used in advertisements (thanks Target and H&M) . We are just now seeing representation barriers broken in the arts industry. This is great, don't get me wrong! But if grown adults are just now getting used the idea of inclusion, what do you think is happening on our playgrounds?

In some ways, children are miles ahead of grown adults. Children have the beautiful gift of seeing a fellow playmate in anyone, or anything for that matter- cue the pet rocks. They care little about how someone's eyes look, the color of their skin, or even if their language sounds the same- as long as they can pretend together. But somewhere along the way, what begins as celebration and open armed acceptance can slowly turn to politeness yet segregation. My daughter is not bullied at school, openly at least. But sometimes her hardest hits come from simply being ignored or misunderstood. If you have ever loved someone that's been bullied in this way, you know the pain deeply. You pray and cry and long for someone to befriend them- to truly see them for who they are; to love them and all their differences and similarities. This is the forever wrestle of a parent of a child with special needs. And yet, and yet. It is my Esther that calls everyone her best friend. It is my Esther that quite persistently chases after a playmate. Don't get me wrong, she can be a meany too sometimes, it's not all sunshine and roses. She's quite human and in need of being taught kindness as well.

Here's the thing my friends- kindness must be taught and modeled. We cannot expect those younger than us to simply "be" better than us, to "see" more clearly than us- though they often will.

When a child sees us roll our eyes at another human, guess what they learn? Disrespect of other people. (gulp) When they see us smile at someone then whisper something nasty when they leave, guess what they learn? Fake kindness. When they hear us comment on the physical appearance of actors and actresses on a screen, thinking it's disconnected from real life, guess what they are picking up? Yup you guessed it- to judge appearances.

This year I let Esther pick out shirts for World Down Syndrome Day. I showed her tons of choices and read off what they said. When we got to the winner, she threw her head back, laughed and said- "Yes. this one mommy. This one." The shirt reads: "Dinosaurs are scary. Down Syndrome isn't." This is the one that hit her hard. Why? Because I know she's felt it. She can tell when people feel nervous around her, or when kids give her raised eyebrows. She loves that she has Down Syndrome and it's something we want her (and those around her) to not be afraid to celebrate or talk about. She jumps up and down when she sees someone else with DS ("Mommy she has Down Syndrome like me!!") She's not afraid that she's a little different- she knows it. But she also knows she's very much a kid just like anyone else. She will always hold this tension space- much like the tension space we hold as if you are a follower of Jesus. Be in this world- present to it, but know it's not forever home. Don't settle in so hard you lose the connection to the other (it goes both ways).

On World Down Syndrome Day we both celebrate the special, different and even challenging things that make Esther and all those with Down Syndrome unique, and also celebrate that it's quite normal and not something to be afraid of.

I pray this world will be blessed with more kiddos like Essie, but it means we have to be prepared to do a little more work on behalf of families and children with disabilities and special needs. Many times we don't begin fighting for something until it hits home. I'll be the first to get in line as a guilty party and something I needed to repent of. I now am eternally grateful for those that fought for us before we joined the team. So what can we do?

  1. Reach out. Befriend a mama or daddy that has a child with special needs. Ask her/him to coffee- or know you might need to go to them. Ask them how they are doing. Ask how you can pray for them or support them.

  2. Teach your kids. If you have kids, ask them if they know anyone in their school with special needs. Some students are verbal, some are not. No matter what- we all want to be acknowledged. Tell them to simply introduce themselves. Prepare your student that the other child might respond, they might not. Either way they can say, "Hi, my name is __. What's yours? Want to be my friend?" Teach them that being a friend is often just including. Teach your children to be includers. Welcomers. One of the greatest pains of those that already feel different is feeling ignored.

  3. Learn. Learn about the people around you. Is there a neighbor with autism? Learn about it. Learn how to engage, then teach those in your household. Is there a child in your kids class that has Down Syndrome or another special ability? ;) Be proactive and ask the teacher. Do your research. Introduce yourself to the mom. Invite them for a playdate to help you and your child learn how to befriend and communicate.

  4. Advocate. There will be countless more Down Syndrome diagnoses and births in the years to come. These families will need both your support and awareness. Join their team. Try to hear the fears with an open heart ("I can imagine how scary this must feel. You won't be alone.") If you know a mama that finds out about a diagnosis, please feel free to pass their info to me, or you can help them find out their local DS association and info. For all the young moms out there that find this out with no support- they need us. They need you. We need you. If we want to lower abortion rates of babies diagnosed with DS, then we have to change how we show up.

So my friends, if you are still with me here, let me say two things. First of all, thank you. Thank you for celebrating with us, sometimes crying with us, and sometimes just reading my very long processing and heartcries. We appreciate you. And second and perhaps the most important-

Dinosaurs are scary, Down Syndrome isn't.

So get out your crazy socks, bring a friend a cupcake, tell the world that we can have open arms and handle the new little wonders coming our way. Let's just make sure that when we say it...

we mean it.

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