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205. Healthcare Equity in the Down Syndrome Community w/Dr. Spinazzi & Dr. Skotko

205. Healthcare Equity in the Down Syndrome Community w/Dr. Spinazzi & Dr. Skotko

Friends, we’re so excited to have the brilliant Dr. Brian Skotko and Dr. Noemi Spinazzi back on the show today! They’re here to tell us about a big research project they worked on involving patients with Down syndrome who identify as Black as well as parents of patients who primarily speak Spanish. This work included conducting surveys of parents and primary care physicians from across the country over the last two years. Its primary goal was to identify the barriers for families looking to access adequate care that shouldn’t only be found at specialty Down syndrome clinics in large cities. We chat about structural racism in medical care, striving for cultural humility, some of the surprises they found in their research, and so much more. They share some valuable resources for those without access to a Down syndrome clinic and how we can all strive to be champions for the Down syndrome community. Thank you to Dr. Skotko and Dr. Spinazzi for their continued work in making sure everyone in the Down syndrome community has access to quality health care.

GeneralAshley FraccalossiMay 2, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

204. Self-Advocates On Capitol Hill w/Kayla McKeon, Matthew Schwab, & Charlotte Woodward

204. Self-Advocates On Capitol Hill w/Kayla McKeon, Matthew Schwab, & Charlotte Woodward

Today we’re catching up with three self-advocates from previous episodes! Advocating for the Down syndrome community from the steps of Capitol Hill we catch up with self-advocates Kayla McKeon, Matthew Schwab, and Charlotte Woodward! We were so excited to chat with them during the National Down Syndrome Society’s Down Syndrome Advocacy Conference in Washington DC! From advocating equal rights in employment, healthcare, and education for people with Down syndrome these self-advocates are putting faces and names lobbying for these legislative priorities! They share the bills they’re passionate about and we catch up on the fun and interesting things they’ve been up to. From bocce ball, to ballroom dancing, to graduating college these incredible self-advocates have been busy since we last talked to them! Friends, you’re going to love this episode!

GeneralAshley FraccalossiApril 25, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

203. Beyond Checking A Box

203. Beyond Checking A Box

Friends, some harmful statements were made recently by an online commentator about a recent SKIMS campaign and it got us thinking about all things inclusivity in the media. She who will not be named asked, “how far are we going to take this inclusivity thing? Girl, we’re taking this inclusivity thing ALL the way! Today we ask all the questions that harmful narratives like this leave us with. What’s worthy of being seen as beautiful? Are companies being genuine or just checking an inclusion box? How we define ableism and so much more! So, listeners, we might be left with more questions than answers on this one, let’s keep this conversation going!

GeneralAshley FraccalossiApril 18, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

THROWBACK: Politics & Down Syndrome w/Kayla McKeon & Ashley Helsing

THROWBACK: Politics & Down Syndrome w/Kayla McKeon & Ashley Helsing

Friends, next week many of us are headed to DC for the NDSS Down Syndrome Advocacy Conference! Take a (re) listen to this fantastic episode! The last time we chatted with Kayla McKeon back in November 2018, she was lobbying for the ABLE to Work act that allows individuals with disabilities to save money without losing their benefits. Today, the act has passed, but Kayla (the first registered lobbyist with Down Syndrome) has certainly not stopped working hard!

Her and Ashley Helsing are part of the National Down Syndrome Society’s policy team that lobbies on Capitol Hill and advocates for Down Syndrome in DC! They’re telling us all about what matters most for people with disabilities in the current political world: Covid-19 relief packages, marriage equality, meaningful employment, virtual school, and so much more.

GeneralAshley FraccalossiApril 11, 2023Down Syndrome, Advocacy, VotingComment

202. Living In Technicolor & Listening To Your Heart w/Jennifer Varanini Sanchez

202. Living In Technicolor & Listening To Your Heart w/Jennifer Varanini Sanchez

Sofia Sanchez helped us celebrate World Down Syndrome Day on March 21st and today her Mom Jennifer Varanini Sanchez is here to chat with us! This mother of four opens up about the Down syndrome diagnosis of her youngest son Joaquin at 3-months-old that led her on a pursuit to learning more. Listen to how a charitable donation in honor of a family member's memory led this mama on a path to completing her family through international adoption. We chat about celebrating each child’s individual gifts, fostering independence, inclusion and diversity on a blockbuster film set, and so much more! Friends, you’re not going to want to miss this episode!

GeneralAshley FraccalossiApril 4, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

THROWBACK: Following the Lead of Self-Advocates (ft. Matthew Schwab)

THROWBACK: Following the Lead of Self-Advocates (ft. Matthew Schwab)

Hey, Friends! Before next week’s new episode we want to (re) share another one of our favorite self-advocate episodes! Matthew Schwab is a 25 year old man with Down syndrome who is absolutely slaying it at life. There’s no better way to describe him! Since we last chatted with him in 2020, Matthew has moved into an apartment with his brother and started his own podcast! He’s officially entered the world of “adulting” where there’s no one around to remind you to do your chores! Today we’re chatting about the highs and lows of living away from home, the future of Matthew’s relationship (and why the law makes it SO difficult for couples with DS to get married), and what we think of the phrase “nothing about us without us.”

GeneralAshley FraccalossiMarch 28, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

201. Sofia Sanchez: Filming ‘The Hunger Games’, Her New Book, Self-Advocacy, & Middle School

201. Sofia Sanchez: Filming ‘The Hunger Games’, Her New Book, Self-Advocacy, & Middle School

Today we have a very special guest here to celebrate World Down Syndrome Day, the one and only Sofia Sanchez!! We just happen to be the first podcast interview (many more to come!) for this actress, model, author, and self-advocate. She has some fun projects going on: a new book, cartoon series, a feature film, and advocating on Capitol Hill, just to name a few! Sofia gives us a tease of her experiences filming ‘The Hunger Games: The Ballad of Songbirds & Snakes’ coming to theaters this November! We’d say the odds are in this middle schoolers (almost high schoolers!) favor! We’re cheering you on Sofia! An episode you won’t want to miss, friends!

GeneralAshley FraccalossiMarch 21, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

200. It's our 5 year anniversary!

200. It's our 5 year anniversary!

For the last 5 years, we’ve worked hard to bring you expert resources, meaningful connections, and loving encouragement each and every week. And we’re so grateful for those of you who have stuck with us for the last 200 episodes! This is a milestone we are celebrating with ALL of you! You’ve listened to us navigate parenthood, education, new diagnoses, and so much more with our kiddos. And today we’re taking you behind the scenes of the last 5 years! Join us for a chat about our origin story, quotes from our guests, and feedback from all of you. It’s been a rollercoaster but the heartbeat of the show remains the same: your child with Down syndrome is enough just as they are.

GeneralValerie SchliederMarch 13, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

199. What We Wish We Knew, Had, & Told Ourselves In The First Years…

199. What We Wish We Knew, Had, & Told Ourselves In The First Years…

Take it from us, parenting is hard and those first years can feel like the hardest, especially if it’s your first kiddo. Today we’re passing on all the wisdom from our first years of parenting. We’re going to give you all the things we wish we knew, had, and what we’d tell ourselves to get through those first years!

GeneralAshley FraccalossiMarch 7, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

198. The Best We Can: An Unscripted Conversation on Inclusion In Our Schools

198. The Best We Can: An Unscripted Conversation on Inclusion In Our Schools

Raise your hand if the phone number of your kid's school popping up makes your stomach drop? Hands raised over here too, friends. Today, we (Heather + Josh Avis) are chatting about recent challenges with our children’s IEPs.. what’s working, what’s not working, and why we’ve hired a lawyer. We’re asking tough questions.. Why does it feel like this system is built on something broken? Are separate spaces made to actually accommodate children with disabilities or to make others feel more comfortable? Bottom line: giving someone a seat at the table or a high five in the hallway isn’t inclusion.

GeneralValerie SchliederFebruary 27, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

197. Exposing The Roots (Racism, Ableism, Microagressions, + More)

197. Exposing The Roots (Racism, Ableism, Microagressions, + More)

Friends! Did you know that not only are we in the middle of Black History Month but also Inclusion Month?! Today we’re honoring the adversities faced by advocates before us and celebrating the changes we’re making now that will impact future generations. After all, the end goal is the same: creating spaces of belonging for everyone, and we mean everyone. And we know we’re in a vulnerable moment in society, and in order to make lasting changes for future generations, we need to put in the hard (sometimes uncomfortable) work. And that’s what this episode is all about. We’re discussing microaggressions towards the Black and disabled communities, how we challenge systems to change, why separate programs can sometimes be a valuable asset, and what inclusion looks like in our own lives.

GeneralValerie SchliederFebruary 20, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

196. Couples Q & A! (ft. our husbands)

196. Couples Q & A! (ft. our husbands)

Happy Valentine’s Day, friends! In honor of the holiday, we have three very special guests joining us.. Josh, Andy, & Chris! That’s right! We each sat down with our husbands to answer all of your questions about relationship dynamics and Down syndrome. How do you make time for each other (and away from each other)? How do you team up to advocate for your child? How do you process your feelings after the diagnosis? We’re not experts or anything friends, but if there’s one thing we’ve learned it’s that lots of grace, vulnerability, and some therapy can go a long way. Join us for this fun and practical conversation all about parenting styles, nontraditional partner roles, ableism in the household, + more!

GeneralValerie SchliederFebruary 13, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

195. Connecting with the Black Down Syndrome Association (ft. Kelli Caughman & Crystal Lotterberry)

195. Connecting with the Black Down Syndrome Association (ft. Kelli Caughman & Crystal Lotterberry)

Happy February, friends! We’re celebrating Black History Month with two of our favorite mamas (and returning guests!), Kelli Caughman and Crystal Lotterberry. Both of these ladies are raising kids with Down syndrome while running their new non-profit organization: The Black Down Syndrome Association. And friends, the work they’re doing is SO good. Today we’re talking about the many inequalities Black individuals with DS face, tokenism vs. intentionality, and how we can advocate and support every member of the DS community.

GeneralValerie SchliederFebruary 6, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

194. Undoing Ableism & Telling True Stories with April Aguilera (writer of "For Paloma")

194. Undoing Ableism & Telling True Stories with April Aguilera (writer of "For Paloma")

April Aguilera is a mother of three beautiful girls, including her daughter Paloma, who has Down syndrome. She is also the writer of the short film, “For Paloma,” that stars brilliant actors with DS and details a mother’s unexpected journey through receiving a birth diagnosis. We’re so grateful April has joined us today to chat about undoing ableism as a mother of a disabled child, creating “For Paloma,” and disability representation in the media. We’re also getting vulnerable about mental health and recognizing how individuals with DS invite us to recognize our own worth.. you might need a tissue for this one!

GeneralValerie SchliederJanuary 30, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment

193. Lets catch up!

193. Lets catch up!

It’s a new year and we have a new recording platform! Which means we now have access to sound effects.. so you’re welcome for that! We’re back with new episodes all year long, starting with a conversation about what we’ve been up to these last couple of months and what we’re doing (or better yet, NOT doing) in 2023! We’re rejecting hustle culture and prioritizing connections over accomplishments this year! Who’s with us!? Join us for a chat about all the things on our minds as we head into this new year.. therapy schedules, goal setting, medical vs holistic interventions, and MORE. Thanks for joining us!

GeneralValerie SchliederJanuary 23, 2023Down Syndrome, Advocacy, Education, independence, inclusionComment