We know that going #BackToSchool isn’t always easy.. so we’re here to support you! That’s why we have Jessica Kuss (the Senior Manager of Education Programs for the National Down Syndrome Society - no big deal right!) on today’s episode. She is a mother of 2 (including a son with DS) + a former special educator! Jessica was even part of the team at NDSS who just released the Inclusive Education Guidelines, a document FULL of relevant info for parents and educators. Today, we’re chatting all about what’s inside this document.. everything from the Down syndrome learning profile (knowing about this is a game changer) to the gaps in our IDEA laws, and what on earth we should do with all this info! Who’s ready to rock this #BackToSchool season with us??
Read MoreFriends! Today is the day.. “Everyone Belongs” by Heather Avis is out NOW! It’s a joyful rhyming book that encourages children to not only value all people but to also make room for their differences in order to make a better, brighter, and more beautiful world. “Everyone Belongs” reminds us that it’s possible to make room for all people and all abilities—and that life is brighter when we give every person a chance to shine. And today we’re chatting about everything from the Gap Kids collaboration, how to use this book to teach children about disability, and what able-bodied authors need to consider when writing books about disability.
Read MoreDr. Priya Lalvani began working with previously institutionalized adults with disabilities in her early twenties.. she later gave birth to her now 20 year old daughter with Down syndrome. She’s been thinking pretty deeply about disability rights for many years and today she’s invited us to do the same. We’re questioning some common practices that might actually be rooted in ableism.. Why do we use the term “fully included?” Why don’t we teach about disability in the classroom? What does it mean to be an advocate vs an ally?
Read MoreHow do we tell the true and real story of what it means to have Down syndrome… That question was the inspiration behind The Lucky Few Foundation and why the Avis family just spent the last MONTH on the road! They travelled over 6,000 miles and collected nearly 300 narrative shifting stories! Along the way, they met so many incredible advocates and individuals with Down syndrome. And today, Heather and Josh are recapping the whole tour! Everything from heartwarming stories to stressful moments and all the memories made in between. We are SO thankful to everyone who supported the tour.
Read MoreDr. Kishore Vellody is a pediatrician who runs the Down Syndrome Center of Western Pennsylvania (AKA he has the best job ever), a sibling to his older brother with DS, and a strong advocate amongst medical professionals. We’re so glad he’s joined us today to discuss some important medical information: new guidelines for healthcare from the American Academy of Pediatrics, life expectancy for people with DS, and even delivering the diagnosis. Dr. Vellody also shares about growing up with his older brother, finding out what Down syndrome is (at age 9), and balancing his own life while looking out for his sibling (great tips for parents raising children with and without disabilities in this one).
Read MoreHave you ever heard the term, “inspiration p*rn?” Think of those videos that show a high schooler with Down syndrome winning homecoming queen, or the star quarterback being praised for sitting next to someone with a disability at lunch. Why is the internet so eager to consume these clickbait videos? If you’ve ever encountered an interaction like this that you feeling a little cringey.. this is the episode for you. We’re chatting about what happens when disability is made into a spectacle, the danger in celebrating someone “overcoming” their disability, and the way these viral videos can actually objectify and dehumanize the disability community. Lots to consider in this one, friends. Bottom line: let’s consider our intentions behind what we consume and post.
Read MoreRaise your hand if you’ve ever felt nervous to have “the talk” with your children.. and especially your children with Down syndrome! (All hands raised over here!) We know it’s a hard conversation but it is SO important. So today our guest is Dr. Katie Frank, an occupational therapist + expert on all things disability and sexuality. She’s here to educate us on boundaries, safety precautions, medical resources, + more. We’re also chatting about parents being the primary sexual educators for children with Down syndrome, how to respect your child’s autonomy, and of course, the general difficulties of adolescence. You might want to take notes on this one!
Read More“Why not just give it a try?” became Rebecca’s motto as she raised her oldest of three daughters: Trista Kutcher. Today, Trista is a 33-year-old woman with Down syndrome running her own business, living independently, and being a role model to SO many.. including the Avis kids! Heather had the chance to sit down with Trista’s mom, Rebecca, to chat about raising a #BossLady, and you’ll see.. that’s exactly what she’s done. Rebecca is sharing stories about Trista making the high school dance team, the first time she went into the grocery store all by herself, the moment she started her own business, and even her thoughts on inclusive employment. This one has a little bit of everything.. enjoy!
Read MoreJazmine Faries is a woman with Down syndrome who is the focus of Iron Family, a documentary directed and produced by Patrick Longstreth. Today on the podcast, we have Jazmine herself, along with her brother Chad, and the film director, Patrick! Not only are we chatting about the film, we’re opening up about complicated family dynamics, the search for independence, and even Jazmine’s desire to have children (warning - tears are shed). We hope you enjoy this very honest conversation with these wonderful guests. After you listen, head to all the links in our show notes to support #IronFamilyFilm!
Read MoreRick Smith is a father of three, including Noah who has Down syndrome, a blogger, an advocate, and the founder of Hope Story! Like so many of us in the DS community, his child’s diagnosis was delivered with an “I’m so sorry,” followed by the doctor offering anti-depressants to his wife. And now, 11 years later, Rick is on a mission to change what happens in the delivery room by educating medical professionals about what it means to live with Down syndrome through his non-profit, Hope Story. Today we’re chatting about dads who advocate, releasing expectations for ALL of your children, what doctors need to know, and even a few tangents about social media advocacy etiquette (trust us - you’ll relate).
Read MoreSchool’s out for summer! When it comes to this time of year.. the excitement for all sorts of activities is at an all time high! But what happens if your kids can’t just fit in at church camp? Or if they need accommodations during swim lessons? Where can our children with disabilities enjoy their summer activities safely? Where will be they included? And what will we do if they aren’t included? So many questions for us to consider! That’s why today we’re chatting about strategies for summer fun.. social stories, email templates for counselors, clear expectations, and MORE. We’re also figuring out our thoughts on sleepovers and just being away from our kiddos in general. There’s a lot to relate to in this one and we hope you do.
Read MoreAs parents of children with Down syndrome, we’ve sat through too many school meetings and doctors appointments walking away feeling the world thinks our kid is not enough. And we know that’s not true but how DO we measure success for our children with DS? Maybe you’ve learned to not compare your child to their peers without DS but how do you keep yourself from comparing them to their peers who also have DS? We asked tons of mothers these questions at the Down Syndrome Diagnosis Network’s Rockin’ Moms Retreat a few months ago and today we’re sharing their answers. And here’s the most important thing we heard: our kids will define their own success. Lets let them do that, friends.
Read MoreSo what happens when someone with Down syndrome graduates high school? When the structure and support from the education system ends, what begins? Today we’re talking about inclusive employment for adults with Down syndrome with our very own, Val Schlieder! She created an employment-prep program for adults with DS that focused on problem solving, social appropriateness, self-advocacy, & so much more. Today she’s sharing about the barriers to inclusive employment (hint: ableism!), the importance of autonomy, all the things people with DS ADD to a workplace, and how parents of young kiddos can start thinking about the future.
Read MoreYou’ve probably seen the recent debates about abortion in the news and on social media. We’re not here to get political but these debates do give us the opportunity to call out a huge issue: people on both sides see individuals with disabilities as less than human. And today we’re talking about it (as best as we can). Because we acknowledge the amount of support it takes to raise a child with Down syndrome and the way that having certain privileges makes things a little simpler. And we also know that our systems don’t support our children well once they’re born. So much change needs to happen.. and we think changing the perception of Down syndrome is a good place to start. You’re invited to sit in this discomfort and uncertainty with us as we discuss disability, abortion, and the value of a human.
Read MoreDid you know that individuals with Down syndrome are frequently denied organ transplants? Just because they have a disability. We can’t believe this is a thing that’s still happening, but we are SO glad that there are people pushing back on this discrimination. Today in this episode, we are sharing two very important interviews with some extraordinary activists: Charlotte Woodward (NDSS employee + self-advocate w/DS), Bart Devon (senior director of public policy at NDSS), & Christy Sellers (lucky mama of 4 with DS + advocate). We’re talking about the Charlotte Woodward Organ Transplant Discrimination Prevention Act, Glory’s Law, the fear and ignorance that has caused this discrimination, and the recent tragedies in the DS community that have added momentum to this movement.
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