Posts in General
155. A Candid Conversation About Raising a Child with A Dual Diagnosis

Hey friends, it’s April! And in honor of April being Autism Acceptance Month, we’re chatting about Micha’s journey parenting Ace, her son with a dual diagnosis of Down syndrome and autism. And before we get started, we want to just say that we’re not experts on this topic and we are approaching it as learners. That’s why we’re grateful for the many autistic adults who share their stories for us all to learn from! And we appreciate your grace as we navigate this conversation too. So join us as we discuss finding community in the dual diagnosis space, the complexities of ABA therapy, and the root behind our hopes and dreams for our children. Let's keep learning together!

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154. Community Over Competition, ft. Chantele Holm - Podcaster + Lucky Mama

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 if you’re anything like us, you might 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 chatting about how the scarcity mindset hurts our community and how we can support our fellow advocates. That’s why we have Chantele Holm, fellow lucky mama + host of TALK Down Syndrome podcast on the show to chat all about her advocacy journey and the importance of community over competition. What better way to support the DS community than to support one another?

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153. It's World Down Syndrome Day!

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 dynamic for siblings without Down syndrome, and of course.. our #WDSD plans! Happy 3/21, friends. Hug your loved one with DS extra hard today.

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152. Restoring the Down Syndrome Story - ft. Katie Quesada, Storytelling Coach & Speaker

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 Quesada, a speaker, storytelling coach, and Heather’s friend of many years! And she’s breaking down the art of story for us in a very practical way.. sharing about advice for fellow advocates, believing in the power of your story, our personal spheres of influence, and where to start (all you need is a one page word doc).

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151. Finding People That Don't Feel Sorry For You (ft. Jo Lopez)

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 your people in-person, the right time to join an online group, and how having a child with DS shapes your social life.. especially as they get older.

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150. Cole Sibus on Being An Actor w/Down Syndrome, Moving Away From Home, + SO Much More!

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 from moving out of his parents house to inclusivity in Hollywood! Cole is also sharing about the pranks he played on set, the impact he had on the cast, and why he wants to play a role where DS is not the focus.

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149. The Only Black Mama In The Room - ft. Ashley Dirks (mother/advocate)

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 to exclusion. So today, we’re talking about it. Join as we chat about tokenism, toxic positivity, social media advocacy, and what happens when we know the importance of diversity but don’t do anything about it.

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148. Diversity in the Down Syndrome Community

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 picture of a child that looks like yours, how the recent events in the country have continued to shape them, and why they sought out a group for fellow Black families. The DSDN Black Families group has grown to 1,000 members and we encourage you to join them if you are part of this community. We’re so grateful for these mamas sharing more about their experiences in the DS community!

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147. Resources for Black History Month - Movies, Podcasts, Books, & More!

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 accounts, books, & movies — say hello to a guilt free night on Netflix! You do not want to miss this one, friends.

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146. It's Black History Month! Let's Talk About It.

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 the day. Not anymore friends. We’re doing our best to highlight Black voices this month (and all the time really). And today we are chatting all about celebrating diversity, why talking about race is important for talking about disability, what it means to be an ally, and how to talk to your children of all ages about Black History Month. We’re committed to doing our best to listen and learn alongside all of you.

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145. Just the Three of Us.. on Grief, New Year's Resolutions, & What's to Come in 2022

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 heavier topics today as Micha is diving deep into how the loss of her father in December has affected her and her family.. including Ace. Processing grief with your children with Down syndrome is complicated.. to say the least. We’re sending all our love and support to our beloved Micha and her family.

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#THROWBACK: What do you wish you knew when you got your child's diagnosis?

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 sharing them with you all today. This episode is full of wisdom from mamas of adults, teens, toddlers, and even twins. These perspectives are a whole lot better than a google search. So grab your tissues and get ready to nod your head along with all of these interviews. We think you’ll relate.

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#THROWBACK: Disability Representation In The Media w/Gail Williamson (Talent Agent & Mother)

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’s built quite the acting career since and so has Gail - but in a much different way! She developed the children’s division in the Media Access Office and then went on to work for KMR Talent in the Diversity Department. Gail has blazed such a trail in this business that in 2019, the actors she represents made $3 million collectively. You don’t want to miss this chat with Gail as we discuss disability in the media, current barriers facing actors with DS, her proudest moments, and more!

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#THROWBACK: Tell Me You're Raising A Child w/DS Without Telling Me You're Raising A Child w/DS

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 parenting a kiddo w/DS, you might relate to the endless amounts of abbreviations you have to learn (OT, PT, ABA, the list goes on), the feeling you get when watching your child run for the first time, and maybe even buying extra locks for the bedroom doors! We love this community and all the little instances that bind us together.. especially what it feels like to hug your baby with DS! Enjoy the episode, friends!

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#THROWBACK: "A Life Meant to be Lived," w/Karen Gaffney (Self-Advocate & Open-Water Swimmer)

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 Gaffney. And today she’s telling us all about her motto: “Down syndrome is a life meant to be lived.” We are SO thankful she’s here with us to chat about a lifetime of self-advocacy, her non-profit foundation, and all the daily routines (including 2 mile swims before work) that keep her going! You don’t want to miss this one, friends!

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