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 pra...
Mar 01, 2022•48 min
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, s...
Feb 22, 2022•51 min
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 th...
Feb 15, 2022•38 min
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 th...
Feb 08, 2022•39 min
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 th...
Feb 01, 2022•29 min
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...
Jan 25, 2022•51 min
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, a...
Jan 18, 2022•58 min
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 t...
Jan 11, 2022•54 min
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,...
Jan 04, 2022•32 min
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.” Fro...
Dec 28, 2021•37 min
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 important too? Or does our world only see people with DS as valuable when they accomplish something big?...
Dec 21, 2021•1 hr
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 board of Gigi’s Playhouse in Indiana. We’re so thankful for everything Kelli brings to our DS c...
Dec 14, 2021•53 min
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’re chatting all about how to keep the holidays happy.. including mom guilt, letting go of tradition...
Dec 07, 2021•42 min
*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! There’s truly something for everyone. And don’t pay full price, use our discount codes! Oh and did we ...
Nov 30, 2021•44 min
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. With her knowledge and passion, Lindsey has created Worth the Conversation, an online community dedic...
Nov 23, 2021•34 min
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 letting go and living free.. (if that sounds scary to you, you’re not alone!). She’s also sharing her in...
Nov 16, 2021•1 hr 2 min
(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. And the reasons they were denied are heart breaking. The truth is that many medical professionals, a...
Nov 09, 2021•37 min
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 launching a very special collection of dolls who share features of children with DS, because representation ...
Nov 02, 2021•35 min
“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 mamas of adults, teens, toddlers, and even twins. Thank you to everyone who shared their stories with us...
Oct 26, 2021•1 hr
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 products into stores in her area! When she’s not being a #bosslady, she’s advocating for DS, hanging out wi...
Oct 19, 2021•37 min
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 Down syndrome, who created Oxygen Fitness Coaching! She specializes in work out programs for mamas of child...
Oct 12, 2021•30 min
Alright friends, you asked for it.. and now it’s time to talk about potty training! And who better to learn from than Dr. Lina Patel? (Psychologist, DS expert, and author of Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience). She’s breaking it all down for us today.. because there’s more to potty training than we even realize (hint: medical challenges, cognition, language, and motivation)! We’re talking about when to NOT start potty training, why traditional techniques ...
Oct 05, 2021•53 min
Alright friends, it’s time to talk SOCIAL STORIES, those magical little books that help our kiddos with Down syndrome understand what’s expected of them in a new environment. Social stories are game changers when it comes to managing behaviors and transitions.. but don’t just take it from us. We have a social story expert on the show today! Dr. Lina Patel is a speaker, consultant, researcher, professor, and psychologist with almost 10 years of experience in the DS world. She’s breaking down the ...
Sep 28, 2021•40 min
Whether you’re a few weeks or a few days into #BACKTOSCHOOL season, you might be feeling it. And by ‘it’ we mean allll the feelings and stress that you’re child is experiencing as they get used to their new classroom. We know we are. That’s why today we’re giving you a (very real) update on how our kids (and us) are doing. We’re talking non-negotiables for our child’s education, how other kids see our kids, and what to do when you might need to switch schools (that’s right friends, it’s reached ...
Sep 21, 2021•50 min
We talk a LOT about inclusion. But why? Why is it important to us to fight for it? Does it actually make a difference in our kids lives? In the lives of their peers? (Yes!) Today we have an inclusion expert.. former teacher + mother to 4 (and all around education rockstar) Kristin Enriquez, back on the show! She’s giving us practical tips to “create a level playing field” at your next IEP meeting, because don’t forget - inclusion is a RIGHT, not a special privilege. We’re also chatting about how...
Sep 14, 2021•1 hr 4 min
Looking for practical tips to prepare for this school year?! Look no further. Ashley Barlow is a lawyer, former teacher, member of federal and state DS advocacy boards, and basically an expert in all things IEPS and special education. She’s here today with 3 practical ways to prepare for the school year.. that you can do while watching TV (yay!). Plus she’s sharing her wisdom on least restrictive environments, specific inclusion models, tracking your child’s progress, and how to START the school...
Sep 07, 2021•1 hr 17 min
Well friends it’s officially #BACKTOSCHOOL season and we’re here with your (unofficial) guide to all things inclusion, IEPS, + more! But first, we’re kicking things off with a Q & A featuring questions from all of you! We’re chatting about covid safety measures, talking to your child’s classroom about DS, and what to do when you don’t feel confident in your decisions.. like at all. With our different perspectives (kids in middle school, kindergarten, and home schooling), we’ve got practical ...
Aug 31, 2021•54 min
After over a year of social distancing, many of us have finally started traveling again! But when it comes to vacationing with kiddos who have Down syndrome, there’s so much more to consider! After Mercedes’ daughter Sunny took an emergency trip to the hospital, we figured what better time to have a conversation about keeping our children safe and healthy while traveling.. and WHO better than Dr. Spinazzi to chat with!? That’s right, friends. She’s back on the show with practical tips for travel...
Aug 24, 2021•58 min
We’ve all felt that sense of anxiety as we prepare to bring our children with DS to a new activity. How much can we expect the people in charge to support them? Are staff members prepared to support a child with a disability? Is the parent responsible for sticking around and teaching everyone else how to interact with their child? How can inclusive spaces work if the adults in charge aren’t equipped to support all the children present? The list of questions goes on! And we don’t have all the ans...
Aug 17, 2021•47 min
Meet Sara and Sabrina. They are mothers raising children with Down syndrome who have made it their mission to use social media to educate fellow lucky mamas on feeding strategies. They run the account Able Appetites that focuses on “resources and community for parents feeding kiddos with DS. Support in transition from breast, bottle, or tube feeding to solid foods.” And today, they’re here to answer all of our questions about feeding our children with DS and provide practical tips for doing so —...
Aug 10, 2021•1 hr 3 min
