Posts in General
THROWBACK: What if my child with Down syndrome can't?

You know how much we love celebrating people with Down syndrome all year long! We’re so excited for all the amazing self-advocates doing big things. But if you’re a parent of a child with DS who felt a little lost, sad, and maybe even lied to when you see certain posts on the internet.. then this episode is for you. We’re chatting about what happens when your child with Down syndrome doesn’t achieve all the things our society celebrates. Are they still worthy? Where does our value come from if not accomplishments? Our kids have been the greatest invitation to see the worth in others (and ourselves) apart from achievements.. and today we’re talking about why. We’re also chatting about how to share content about our children in honorable ways and how to receive content about other people’s children without comparing. Plus we’re exploring the “dark side to positive representation” that causes us to only celebrate people with DS who act the most like people without DS. WOW! So much to unpack here, friends. It’s a good one.

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THROWBACK: Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani

Dr. 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?

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THROWBACK: Organ Transplant Discrimination Against People with Disabilities (ft. incredible advocates!)

Did 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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THROWBACK: 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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192. Tis' the Season!

Tis the season to be jolly.. and maybe also a little stressed?! Because let’s face it, the holidays are filled with fun and joy and magic but they can also get a little complicated. What are some of the challenges you’re anticipating? Maybe your family members have unrealistic expectations of your children with disabilities? Maybe your kiddos get a little overstimulated at times? Maybe you feel like there’s an extra pressure on your child with Down syndrome? No matter where you find yourself this holiday season, we’re here to walk you through it (or at least try to). So grab your hot coco, pause the hallmark movie, and join us for a chat about how to prepare your family members (and yourself) for fun (and inclusive) celebrations!

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191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP

When it comes to thinking about the future for your child with Down syndrome, we know that even hearing the words “special needs trust” can be stressful! How do you even begin to save enough money? What will happen to your son or daughter if something happens to you? What is expected of their siblings? So much to unpack here. That’s why we’re thankful to have Phillip Clark on the show once again to walk us through his planning strategies that actually work! For your WHOLE family! As a brother to his sister with Down syndrome, Phillip remembers the stress of these tough conversations from a young age, and now he’s determined to give families access to an abundant life for their loved one with Down syndrome. Be sure to check out Enable Special Needs Planning to get started. You won’t regret it!

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190. Disability & The Church Pt 2

You asked for it, friends! We’re back with another important conversation about disability in the church! We really appreciate all the feedback you gave us and we’re diving into it today. We’re asking.. Are disability ministries actually creating more separation in the church? Do pastors receive training on inclusion in seminary? And who’s responsibility is it to get inclusive practices started? Plus, we’re sharing some examples from you all about what to do (or not to do) when welcoming in a child with a disability. And stay tuned until the end for some resources you can share with your church leadership. Thanks for thinking about these tough topics alongside us!

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189. Motherhood, DS Advocacy, and Selling Funky Hawaiian Shirts (ft. Holly Simon, 21 Pineapples Shirt Co.)

Holly Simon is a mama on an advocacy mission.. all because of her son Nate, who was born with Down syndrome almost 20 years ago! Now, he’s the CEO of 21 Pineapples, a t-shirt company that’s changing the world, one Hawaiian shirt at a time. And though Nate is the face of 21 Pineapples, Holly’s goal is to use this opportunity to support the WHOLE disabilities community.. with creative employment opportunities and fierce advocacy for everyone. We love Holly’s energy and we’re so excited to chat with her all about what it takes to sell 2 million t-shirts, how to prepare your loved one with DS for life after high school, and why you shouldn’t believe everything you see on social media.

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188. Our 2022 Holiday Gift Guide!

Tis’ the season to support small business that are shifting the narrative in BIG ways! Check out our 2022 HOLIDAY GIFT GUIDE for our personal recommendations on gifts for everyone (and we mean EVERYONE) in your life. We’re shouting out diverse companies that support our community and sell wonderful products! Shop for books and bikes, art pieces and experiences, silk toys and sensory bins, + so much more using our links! It’s time to open your laptop and get ready to make some loved ones very happy.. Bonus points if you shop while watching a holiday movie!

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187. Dental Anxiety & Down Syndrome (ft. Dr. Samantha Healy)

We are SO excited to (finally) share an interview with Samantha Healy, a pediatric dentist and mother to a child with Down syndrome. She’s taking us through every moment of her son’s surprising birth story + giving us all the info we need to keep up with our children’s oral hygiene! We’re getting specific about tooth brushes, tooth paste, floss, and more. Samantha also shares her top tips for easing dental anxiety and why you should think twice before sharing a spoon with your baby! Get ready to take some notes!

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186. Our Response to the Ableist Comments on Netflix's "Love Is Blind"

You’ve likely seen the conversation surrounding Down syndrome and abortion that recently took place on Netflix’s popular dating show, “Love Is Blind.” When discussing family planning with her new fiancé, a contestant on the show stated that she would likely terminate a pregnancy if given a Down syndrome diagnosis, after seeing the “trauma” it causes a family. Here’s the thing: this contestant is a pediatric speech therapist who is very familiar with children who have Down syndrome. So we have a lot to unpack here.. starting with ableist thinking, bold claims about how people with DS affect their families, Netflix’s lack of acknowledgment, and feeling safe (or maybe not) at our children’s therapy appointments. Remember, just because you love someone with DS (or work with them daily), does not mean you’re not ableist.

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185. What if my child with Down syndrome can't?

We had SO much fun celebrating Down Syndrome Awareness Month in October. We featured many wonderful self-advocates who are shifting the DS narrative in big ways. And we’re so excited for all of them. But if you’re a parent of a child with DS who felt a little lost, sad, and maybe even lied to this past month.. then this episode is for you. We’re chatting about what happens when your child with Down syndrome doesn’t achieve all the things our society celebrates. Are they still worthy? Where does our value come from if not accomplishments? Our kids have been the greatest invitation to see the worth in others (and ourselves) apart from achievements.. and today we’re talking about why.

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184. Busting Myths About Down Syndrome - ft. Madison Tevlin

Madison Tevlin is a young woman with Down syndrome who enjoys listening to music, hanging out with her friends, and hosting her own talk show (she’s basically living OUR dream). In her mini interview series titled “Who do you think I am?” Madison connects with people from diverse backgrounds to get to the heart of who they really are. When she’s not on camera, she’s busting myths about Down syndrome on her Instagram page! Today, Madison is sharing all about her advocacy work, her future goals, and why she says that having Down syndrome is the least interesting thing about her.

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

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.” It’s a good one.

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182. A Day In the Life of Our Friend Jeremy (self-advocacy, independent living, + more)

When it came time for Jeremy to move away from home, he soon realized that the housing options available didn’t suit him. That’s until his older brother Nathaniel (who you may recognize from episode 122) started Cohome, an inclusive housing program in Morristown, New Jersey. Today, Jeremy lives independently at Cohome and spends his time working at a restaurant, ballroom dancing, and book writing. He also happens to be Micha’s neighbor (we’re jealous!) which means he has become her son Ace’s unofficial mentor.. and his perspective on being a role model might just surprise you! Join us for this episode as we chat about learning American Sign Language later in life, Jeremy’s dreams of becoming an interpreter, and the day to day life of an adult with Down syndrome.. the future is bright.

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