The Lucky Few

We’re fresh off of the excitement of World Down Syndrome Day and we LOVE seeing all the ways our community advocates to celebrate our loved ones on 3/21. But does anyone else ever feel a little (okay a LOT) of pressure during these busy months, especially when it comes to advocating online? Does it ever seem like everyone is doing more? Or like all the good ideas are already taken? Today we’re cha...

Happy World Down Syndrome Day! And happy 3 year (or maybe 4 year??) anniversary to our podcast! If you listen.. you’ll see that we’re still really not sure. Annnyway, today in honor of 3/21, we are chatting all about.. well pretty much everything! Because we have a special Q and A from each of you. Join us for a chat about what educators should know about our kids, how we balance our family dynami...

We talk all the time about the importance of story telling when it comes to shifting the Down syndrome narrative.. but how do we actually do that?! What if we’re not an influencer? What if we don’t have a stage or online platform? We’ve all thought things before.. but what if we told you that the most transformative stories are actually told around a dinner table? Today we are chatting with Katie...

Today we are joined by Jo Lopez, a fellow lucky mama + IRL assistant to Heather Avis! Jo has made it her mission to find community within the Down syndrome space and today she’s sharing all about how she’s found her people. It started with an early (and confusing) diagnosis, an overwhelming google search, and then a sweet Facebook message that changed everything! We’re also chatting about finding...

Friends! We have Cole Sibus (maybe you’ve heard of him!?) on the podcast today and in case you couldn’t tell.. we’re so excited! He’s a 24-year-old actor with Down syndrome who starred on ABC’s Stumptown. And when he’s not working, he’s living with his roommates, learning how to surf, spending time with his girlfriend, and working at a restaurant! We’re chatting about all of it today.. everything...

Heather met Ashley Dirks last fall at a retreat for moms of children with Down syndrome. And one of their first conversations was about how Ashley wanted to leave the retreat. She was the only black mama the whole weekend and it left her wondering, “Do I fit in.. Am I supposed to be here.. Where are the other black moms?” And all this makes us realize that the Down syndrome community is not immune...

A few months ago we had the chance to attend the Down Syndrome Diagnosis Network Rockin’ Mom’s Retreat and meet SO many wonderful women! And our girl Mercedes grabbed a microphone and sat down with a few lucky mamas from the DSDN Black Families group to chat all about diversity within the Down syndrome community! These mamas shared about what it’s like to google “Down syndrome” and not see a pictu...

This month is all about listening to and learning from the Black community. And if you don’t know where to start, we got you covered! We’ve compiled a list of our favorite resources for Black History Month into this episode! From board books for your littlest kiddos to thought-provoking shows for your teens, there’s a little something for everyone! We’re chatting about our favorite podcasts, IG ac...

Friends! February is Black History Month! You know what that means.. lots of important conversations between us and some of our favorite Black advocates in the Down syndrome space. Because let’s face it, many of us have been able to skip out on these tough conversations our whole lives. Growing up, the month of February just meant coloring a picture of Martin Luther King Jr and then moving on with...

Three weeks into January isn’t too late to wish y’all a Happy New Year right? Let’s just go with it! Because today we’re catching up with each other after our holiday break.. we’re talking all things schedule changes, behaviors, covid cancellations, (already failed) resolutions, and how to entertain our children during their school break (and why it’s okay not to)! We’re also discussing some heavi...

We’re back with one of our favorite episodes with one of our favorite questions.. “If you could go back and talk to yourself when you got your diagnosis, what would you say..” Micha grabbed a microphone and walked all around the Down Syndrome Diagnosis Network’s Rockin’ Moms Retreat and asked this question. We got the most amazing (and tear-jerking) responses from you rockin’ mamas. And we’re shar...

We’re back with another one of our favorite videos, featuring one of our favorite advocates. Here we go.. “There’s not a right way to have worth.. you just have worth.” - Heather Avis. We’re honored to chat once again with Gail Williamson who has been showing the media the worth of actors with Down syndrome for many years! It all started when her son Blair auditioned for a running commercial.. he’...

Time for another one of our favorite episodes! You might have seen the popular social media trend where people describe a relatable situation and others know exactly what they’re talking about - or at least that’s what we think it means.. So we’re here with a fun game of “tell me you’re raising a child with Down syndrome without telling me you’re raising a child with Down syndrome.” If you are par...

What better way to kick off the new year than with this extraordinary self-advocate? She’s the first person with Down syndrome to swim across the English Channel, she’s spoken to crowds across the nation, she’s started a non-profit foundation, she’s earned an honorary doctorate degree, she’s been a hard working employee for several years and she hasn’t let this pandemic stop her. She’s Karen Gaffn...

Time to revisit an important conversation about the connection between dignity, accomplishment, and disability. We love our friends with Down syndrome (many of whom have been on this show) who are doing BIG things in the world! Representation is important and we are cheering them on! But what about the people with DS who aren’t running marathons or starring in movies? Does society see them as impo...

We’re so excited to re-release an amazing episode from earlier this year.. all about the intersection between race and disability, featuring our friend Kelli Caughman! She is a mother, wife, and a leading Black advocate in the Down syndrome community. Not only is Kelli the Black Families Director for the Down Syndrome Diagnosis Network, she created the Black Family Village in Indiana and serves on...

The holiday season is officially upon us! And with that comes only magical moments of joy and peace and love.. just kidding! Between the family photo sessions gone wrong and the yearly debate between cooking or takeout, the holidays are complicated. And they get even more complex when your children face new foods, sensory overload, changes in routine, and even unsupportive family members. Today we...

*Cue the holiday music…It’s the most wonderful (& also sort of stressful) time of the year… holiday shopping time! But don’t worry, we’ve got you covered with our 2021 HOLIDAY GIFT GUIDE! It’s here, friends. We are so excited to share about all these wonderful, narrative-shifting small businesses! Shop for soaps and sweatshirts, books and beach towels, art and educational resources, + more! Th...

Trigger warning: topics of sexual abuse. Did you know that children with disabilities are 3x more likely to experience sexual abuse? Even though the risk is high, Lindsey Strickland believes that with more conversations, we can prevent sexual abuse in the Down syndrome community. Lindsey is a mama to 4, including her son with DS, and she has a background in sexual assault prevention and healing. W...

Anyone else ever felt a little lost (and by that we mean very anxious) when it comes to balancing motherhood, Down syndrome advocacy, and in some cases, international adoption too? There’s a lot to unpack here, so we have an expert on today! Rebekah Lyons is an author, speaker, podcaster, mother to 4 (2 kiddos with DS), and emotional health advocate. Today she’s encouraging us to surrender by lett...

(Trigger warning: infant loss, heart defect). Thanks for joining us this week as we discuss a heavy topic: organ transplant discrimination in the Down syndrome community. This topic was born out of a recent tragedy with the passing of Zion Sarmiento, who was born with DS. Zion passed away on October 8th, just a week shy of 4 months old, after being denied a heart transplant by multiple hospitals....

When Alex’s daughter Penny was born with Down syndrome almost 3 years ago, she had no idea how it would impact her family, especially her oldest daughter. But today, Alex and her daughter work together on a special project called: For Kids By Kids where they sell products with a purpose. That’s because each purchase helps support the National Down Syndrome Society. And this month, they’re launchin...

“If you could go back and talk to yourself when you got your diagnosis, what would you do tell yourself..” Micha grabbed a microphone and walked all around the Down Syndrome Diagnosis Network’s Rockin’ Moms Retreat and asked this question. We got the most amazing (and tear-jerking) responses from you rockin’ mamas. And we’re sharing them with you all today. This episode is full of wisdom from mama...

According to Trista Kutcher, the key to being a #bosslady is feeling special and confident, and we totally agree. Trista is a self-advocate with Down syndrome, a business owner, a hip hop extraordinaire, and an IRL friend of the Avis fam! Trista and her business (Trista’s Sunshine Company) are based in Charleston, South Carolina. Not only does she sell products online, she recently got her product...

Raise your hand if you feel like you have no time or energy to work out! And maybe you spend so much time caring for your kiddos that you put your own health on the back-burner.  And let’s face it, after a full day of therapies or an intense IEP meeting, the last thing you want to do is head to the gym. We’re so grateful we found Megan Libassi, a fitness coach and a mom to a little one with D...