Our culture today has a terrible problem. It is not an inclusive place for people with Down syndrome. It starts with what’s said in the doctor’s office, and it extends to schools and workplaces across the world. But we can change this together.
In this live AMA, Chris Calacci—Dad to Emmy Joy—shares his story and discusses how to transform the cultural perception of down syndrome. But let’s face it—Emmy Joy herself was really the star of the show.
Whether you’re the parent of a child with down syndrome already or you just know someone who is, Chris will help you become a more effective advocate for your friends with an extra chromosome. Click the video below and hit start at the 3:33-mark to watch.
Here’s an overview of the show.
[6:44] Chris sees the world differently because of Emmy: Emmy has helped Chris appreciate everything a little bit more. His heart is bigger, and he is slower to anger and quicker to love. He calls Emmy a “blessing I don’t deserve.”
[8:37] How Chris reacted to the diagnosis: Chris had just gotten back from a trip when his wife Amy shared the news. He doesn’t remember exactly what was said, but he does remember quieting down at the weight of the news.
[11:11] What Chris was thinking when he heard the news: He was focused on what the diagnosis meant, what the next steps were, and how he could best comfort his wife in that moment.
[14:38] When Chris became an advocate: Chris has always considered himself an advocate. Even before Emmy was born, he felt a pull in his heart to care for people who are different. “We won’t get anywhere by just standing still,” he says.
[18:52] Harmful reactions from well-intentioned people: Chris and Amy switched OBGYNs because they were consistently being asked if they wanted to continue with the pregnancy. Their new OBGYN was far more welcoming: “We know all about you. Congratulations. It’s gonna be awesome.” Chris also pointed out the dangers of stereotyping the behavior of people with Down syndrome, even if those stereotypes are positive. First and foremost, individuals with down syndrome are human just like everyone else.
[24:15] What an empowering response looks like: React the same way you would if the child hadn’t been diagnosed with Down syndrome. Ask if it’s a boy or a girl, how the mom is doing, etc. There’s a new life coming into this world, and that deserves to be celebrated.
[26:35] Chris’ letter: Chris shares the powerful email he wrote to his closest friends breaking the news of Emmy’s diagnosis. This is a tear-jerker!
[41:45] How parents of down syndrome kids can find their voice: Go online and find out where your closest local resources are. The internet gives families a community of positive voices they couldn’t access otherwise.
[46:21] Advice for dads working through a down syndrome diagnosis: Don’t read anything, at least not from Google. The internet has a lot of great information, but it’s not always correct. Instead, focus your attention to other parents who have walked this journey ahead of you. Chris wrote this article to share some advice for new dads.
[48:28] How to help if down syndrome hasn’t affected you: There’s nothing to be afraid of with kids with Down syndrome, so keep an open heart and try to learn as much as you can.
[52:40] What Chris wishes more people understood about Emmy: She’s no different than the rest of us. She may have to go to a couple more therapies, but we all have our imperfections. Emmy makes the journey that much better by taking it a little bit slower.
[56:12] Advice for dads who just got the diagnosis: You’ve hit the jackpot. With the right heart and mindset, your life is going to be so much better than you’ve ever imagined. Unexpected things happen all the time, and this is just one of them. You can do it. We’re the lucky ones!
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