Posts tagged Down Syndrome
37: Redefining the Down Syndrome Diagnosis w/Meg Wilkes & Stephanie Meredith

We talk a lot about how doctors deliver a Down Syndrome diagnosis on this podcast, but we've never discussed doctors and diagnoses and DS with actual medical researchers!  Meg Wilkes and Stephanie Meredith are shifting the diagnosis narrative through their research. Meg is pursuing a masters degree in genetic counseling at the University of South Carolina and her thesis is on: ‘Redefining the Essential Informational Needs of Parents Receiving a Diagnosis of Down Syndrome.’  Stephanie is the medical outreach director at the University of Kentucky who is overseeing Meg’s research, and her 19-year-old son has Down Syndrome!  Thankfully, this medical duo knows that a newborn with DS has a lot more than health issues and doctors appointments ahead of them, and that’s why they’ve created a survey for all of you!  Parents of children with Down Syndrome, you’re invited to tell Meg all about your diagnosis experience: what you needed to know, what you did not need to know, and what you wish you knew! Take the 10-15 minute survey here, tell a friend (or 10), and help us redefine the Down Syndrome diagnosis.

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36: A Tough Conversation About Sexual Abuse in the Down Syndrome Community w/Lindsey Strickland

“This is a complicated issue, but I truly believe that the Down Syndrome community is powerful enough to tackle this,” Lindsey Strickland on sexual abuse against children with Down Syndrome. We know sexual abuse is tough to talk about, but our kids are #WorthTheConversation.  Lindsey, today’s guest, has spent many years working for Child Protective Services as a case manager for at-risk families, and she also grew up with foster siblings who had experienced abuse.  After working as a child advocate in a sexual assault clinic, Lindsey began to educate her community about the realities of child sexual abuse. Her extensive background, heart for outreach, and 6 year-old-son with Down Syndrome all lead her to create Worth The Conversation.  Lindsey’s online platform serves to empower parents to protect their children with different abilities.  She acknowledges the many risk factors for our kids and encourages families to combat those dangers with fierce advocacy and clear communication.  Let’s shout their worth and protect our kiddos, it’s definitely #WorthTheConversation.

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35: Mercedes & Andy answer, "What's it like traveling with your kids?"

Hi friends- Mercedes & Andy Lara (@hooray4sunny) here!  We’ve been traveling with our three kiddos all summer long and you wouldn’t believe the stories we have for you!  Between all of our crazy fun adventures, we’ve picked up on quite a few #TravelHacks along the way, especially for children with different abilities!  Snacks, sunscreen, and no screen time are just a few of our keys to a fun vacation. But we get it, traveling with kids isn’t always easy, especially if you’re traveling with people who don’t quite understand why your child responds a little differently to the world.  It’s okay to wonder why on earth you left the house in the first place when your child refuses to walk back to the car or stand in line. And it’s okay to pack an entire pantry full of snacks to get you through the day.  What matters most is that you keep showing up.  The world needs to see your beautiful family and interact with your extraordinary children.  

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34: Our Response to the East Family's Negative Down Syndrome Diagnosis

With all the chatter surrounding the recent videos from Shawn and Andrew East and their negative Down Syndrome diagnosis, we thought it best to chime in (with grace and compassion, we might add!).  The East’s have been extremely (and admirably!) open about their pregnancy journey thus far, but controversy arose when they shared what the media deemed “disappointing news” that their baby had markers for Down Syndrome, in their video, “pregnancy complications | the east family.”  Their next video titled, “answered prayers. | the east family,” featured the couple celebrating news that their baby would be born “healthy,” AKA without Down Syndrome. Naturally, the online Down Syndrome community went wild.  And even more naturally, the media celebrated this “uplifting update” from the couple. But how does someone with Down Syndrome or someone who has a loved one with Down Syndrome celebrate this? How can we jump for joy to celebrate that your child won’t be like ours? 

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33: Heather & Josh Avis answer, "How has Down Syndrome created your family norm?"

Heather and Josh Avis (@theluckyfewofficial) here! This week, we’re answering a question that we get asked a whole lot! “How has having two kids with Down Syndrome created our family norm?” We should probably start by saying that we’ve never really been a family with “norms.” The two of us moved to Hawaii just weeks after getting married at the ages of 20 and 23. A few years later, we came back to California and adopted three kids (not all at once, thank goodness!). Macyn is 11 with Down Syndrome, Truly is 8, and August is 5 with Down Syndrome. Our free spirited nature definitely helped us adjust to the rollercoaster of these unique adoptions, but they still came with plenty of uncertainties. One thing we know for sure is that having two children with Down Syndrome has allowed us to know the fullness of humanity and we consider ourselves very, very lucky (hence our name, The Lucky Few!). So friends, join us for a chat about our 17 years of marriage, our family vacation in Hawaii, and how Truly (and all of us!) have been made better because of Down Syndrome.

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32: The (Beautiful) Reality of Befriending Someone with Down Syndrome

We believe that one of the most powerful ways to shift the Down Syndrome narrative is by creating meaningful friendships with people who have DS. But let’s be real, creating those friendships isn’t easy, especially at the grade school level.  Who better to talk about doing hard things than Heather Avis? Open and honest with her 11 year old daughter Macy’s friendship journey on @theluckyfewofficial, Heather is tackling this topic on behalf of all three of our hosts today. Alongside Heather is her friend Rachel Haack, a mother of five girls ages 2-13, an interior decorator, a devoted wife, a future clinical psychologist, and a true narrative shifter. Today, Heather and Rachel are recounting the friendship story between their 11 year old daughters. Macy and London are two friends with different amounts of chromosomes brought together by two very, very intentional mothers. These mamas credit communication, genuine desire for friendship, willingness to embrace the discomfort, and lots and lots of grace as the reasons for such a beautiful friendship.

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31: An Important Conversation About Abortion & Down Syndrome

Buckle up, friends. Today we’re diving into an important yet tricky topic: abortion and Down Syndrome. You may have seen in recent news that many states are suggesting laws that allow for abortion of a fetus with Down Syndrome at any point in the pregnancy. You may have also seen that a few states have begun to enact legislation that would protect babies with DS against such laws. Regardless of which side you support, we invite you to engage in this conversation with us. The way we see it, this is less of an abortion conversation and more of a humanity conversation. After all, who determines the value of an unborn life? If you’re pro-life, then what are you doing for the vulnerable lives who have been born? What if we shift the Down Syndrome narrative so much so that there is no such thing as Down Syndrome adoption at all? Do we see people with Down Syndrome as fully human and fully capable?

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30: Surviving (& Thriving) This Summer!

Hi friends, we’ve missed you! Summer is here and so are we! What better way to kick off your vacay season than with an episode full of tips, tricks, and travel strategies to keep you and your family going all summer long? Because let’s face it, these supposedly kick back and carefree months can be a little (or maybe a lot) hard. Asking our kiddos (especially those with Down Syndrome) to break out of their routine and embrace the unexpected might feel impossible. But friends, we promise you that is always worth it! 

Our best advice is to prepare your child for their summer activities. Wait it out while they adapt to their new environment/expectation. Then shake it off if your plan doesn’t quite work out. Most importantly, never stop celebrating your kiddos with Down Syndrome and all the joys of these sunny months.  So Happy Summer, friends! We are so glad to be BACK, and did we mention? This time- we’re here to stay. You heard it here first, no more long breaks between each season of the podcast. In fact, no more seasons at all. Get ready for an episode each and every week, dear listeners! We hope you’re as excited about this as we are! 

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29: Heather Avis On Her NEW Book: Scoot Over and Make Some Room!

Hey friends! Welcome to the last episode of season three, and it’s a treat. We’re finishing up with a special BONUS interview with one of our favorite people (though we may be a little biased), Heather Avis. Not only does she co-host this podcast, she is mother to her three adopted children, two with Down Syndrome, and creator of the hit Instagram account: @theluckyfewofficial. In case you haven’t heard (and we sure hope you have), Heather’s newest book, Scoot Over and Make Some Room: Creating A Space Where Everyone Belongs, comes out on June 25th! In this special episode, we’re chatting about the writing process, the inspiration, and the reason behind the timing of this extraordinary book. Scoot Over and Make Some Room captures Heather’s funny yet fierce spirit as she tells stories of her children and champions anyone on the margins. Tune in as Heather reads a portion of her “Wildflowers” chapter and discusses who this book is supposed to challenge- which is anyone who has some room to make for others! So friends, who is missing from your life? Can you make some room for them on your couch?

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28: Owning Your Influence In ALL Your Spaces!

“Moral of the story: Potty training is the worst.” - Heather. That’s right friends. We’re tackling this fun topic today, but most importantly, chatting all about the many memorable moments from this season! We even have Tesney Davis back on to tell us what just might be every parent’s favorite piece of good news- her 13 year old son Kirill is now officially potty trained!

This season has been a blast sitting down with extraordinary women who advocate in unique ways. We’ve discussed privilege and perspective with Amy Julia Becker, dual diagnosis with Tesney Davis, and how to own your influence every single day with the lovely ladies at the Dear Mom, Conference. Friends, thank you for joining us this season. As we admire our guests, don’t forget to celebrate the work you’re doing too! You are owning your influence by raising your child. Keep showing up. Keep shouting the worth. We are so grateful to shift the Down Syndrome narrative together.

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27: Owning Your Influence By Using Your Gifts with Michelle Sullivan

Michelle Sullivan has found her voice, and she’s using it to host a podcast, run a clothing company, and most importantly— advocate like a mother. She credits all of this to her 5 year old son, Eli, who has Down Syndrome. Eli helped his mama own her creative influence and launch an apparel company, Littlest Warrior, and the Advocate Like A Mother Podcast. Michelle uses her gifts to recognize (and outfit) mothers and advocates everywhere who shout the worth of their kids with different abilities. So friends, what’s your fave Littlest Warrior Tee? Join us for Season Three Episode Eight to hear which shirts we have in our closets (hint: pretty much all of them!) and then shop online to support worthy causes and valuable messages. Happy Advocating, friends!

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26: Owning Your Influence By Using Your Words with Amy Julia Becker

When Amy Julia Becker received her daughter Penny’s Down Syndrome diagnosis, she mourned the loss of a hypothetical child, the one she had always expected. However, Amy Julia and her husband quickly found joy, love, hope, and perspective in their now 13 year old daughter. So much so that Amy Julia wrote, “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.” She chose to share Penny’s story when she noticed the consistent lack of hopeful information that comes with a Down Syndrome diagnosis. Penny’s vulnerability and fight to be included opened her mother’s heart and eyes to other people that society often marginalizes and excludes.  With this in mind, Amy Julia put pen to paper to discuss the important topic of privilege in her newest book, “White Picket Fences: Turning toward Love in a World Divided by Privilege.” When she isn’t writing, she’s speaking or enjoying life with her family. What a gift it is to chat with her today for Episode 7 of Season 3! So friends, join us as we chat with Amy Julia Becker about authors, advocates, affluence, oh and Penny’s new pointe shoes for dance class!

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25: Owning Your Influence and Broadening The Spaces - Tesney Davis on Dual Diagnosis

Tesney Davis always knew she wanted to adopt a child with different abilities, but she never checked the box for Autism. When she discovered her adopted son with Down Syndrome had an additional diagnosis, her world changed, yet so did her mindset. Kirill was adopted from Russia at the age of five, thanks to what Tesney calls, “the first miracle she’s ever witnessed.” After months of living in Russia with only a few days clothing packed and fighting the court’s initial denial, Tesney and her husband finally brought their son home.

Join us and Tesney Davis as we discuss breaking down the barriers that moms of kids with Autism often feel, accommodating and including children with Autism, and reaching parents of the 8-9% of kids who have dual diagnosis.

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24: Owning Your Influence in the Business World with Mica May

Mica May believes every day life can be magical and lovely. She is a mama to three kids, Jackson (who has Down syndrome), Madelyn and Harper. Through her multimillion dollar company, May Designs, Mica teaches the world to see beauty in design and in Down Syndrome.

Mica is definitely owning her influence. May Designs has contributed thousands of dollars to Down Syndrome advocacy groups, and has even provided a scholarship for a Ruby’s Rainbow participant! She believes in starting small, and always showing up. So friends, grab a coffee and your May Designs journal and join us for a chat about translocation Down Syndrome, advocating in your business, and how to hold loosely to expectations and tightly to beauty.

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23: Owning Your Influence in the Spotlight with Lisa Gungor

Hey, friends! Thanks for joining us! Today, we’re chatting with Lisa Gungor, a wife, musician, and mama to two girls, one who has Down Syndrome.  Lisa is one of the curators of the two-time Grammy nominated musical duo "Gungor,” the author of the book "The Most Beautiful Thing I've Seen," and a contributor to The Liturgists Podcast. She’s a creative soul who owns her influence to shift the Down Syndrome narrative through her music.

Lisa and her husband Michael created their band “Gungor” over a decade ago and wrote mostly Christian songs. Later, they would write the song, “Light” to celebrate their second daughter, Lucie, who has Down Syndrome.  Join us today as Lisa shares her infamous faith journey, what she believes now, and how Down Syndrome shaped her spiritual world.

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