The Heroes I've Found in Our Down Syndrome Community

What is your definition of a hero? Has your definition changed over the course of your life? Over the course of your child’s life?

This past weekend, my family was fortunate to spend time with some people who we would define as heroes.

This past weekend was the Race4Respect in Washington DC. It is a race designed to bring awareness to Down syndrome and show how much more alike our children are than different. To show my child with Down syndrome wants joy, happiness, success and love — just like everyone else.

Mother and teenage son with Down syndrome hugging

For the race this year, they flew out the cast of “Born This Way,” the Emmy award winning TV show. The reality show takes you through the activities and daily lives of seven young people with Down syndrome. It shows dating, living independently, jobs and family — just like the lives of any typical family.

But these families are different — by allowing the cameras in their homes, they opened up their world to public opinion.

Unlike many reality stars, they are not well paid. Unlike many reality stars, they aren’t there to be popular. They are doing this for the community. They are doing this for awareness and to open people’s hearts and minds about Down syndrome.

These families were some of the first families that pushed to have their child fully included in school. Even 20 years ago, they understood we live in one world, and that we each have an important part in this one world. They understood in order to be successful, our children with Down syndrome need to be around their typical peers to learn to model their behaviors, learn their social cues and be around their rich language and conversations.

By allowing the cameras in their homes, they opened their lives to criticism. The online trolls spewing hate and judgment are hard to deal with. They comment on physical features, facial features, they use the R-word and they clearly don’t value anyone but themselves. But, when you know they will never understand, and don’t want to understand, it can be easier to deal with.

But the comments from our own Down syndrome community is the unexpected hurt. There are people who will say mean and ugly things and think they are justified because they do have a child with Down syndrome. They say things like: my child will never have the opportunities like yours; my child isn’t high functioning like yours; I’m not rich like you. They comment on the families homes, what they are wearing, their hair, their makeup, the cars they drive, etc. They say rude remarks about the cast members themselves, slamming them for things they say, things they don’t say, who they are dating, what they are wearing, their hair styles, etc. These parents often have to remove themselves from social media just to avoid the negative comments and personal attacks. These comments are so hurtful when it comes from our own community. This shouldn’t happen.

These families have stepped up to allow the cameras into their lives — to help. They go to events with the cast members, they get them up early and ready to attend the events, they help their child with jet lag and time changes, they turn their lives upside down to make last minute trips happen, they make sure the cast attends important events and appearances across the country, often having to cover their own expenses, and out of pocket monies.

While not all moms and dads automatically qualify as heroes, for me, these parents do.

I am so appreciative of their commitment to this show. I love their passion for showing kindness and kissing babies at these events. I love their encouragement to new parents to stay positive. I love their message of: just keep pushing forward, one day at a time. I love that they stand for hours greeting people, posing for pictures, and helping shuffle the cast to where they need to be and helping them with their speeches.

These parents define hero to me.

They make me want to do better, and do more for the community. They make me want to gather our tribe together and celebrate our Down syndrome community.

They make me proud to be a part of the special club we didn’t know we wanted to be a part of!

As a community, let’s do better for each other. Let’s celebrate each other’s strengths. Let’s bond together as a community and lift each other up!

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