The Lucky Few

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37. Redefining the Down Syndrome Diagnosis w/Meg Wilkes & Stephanie Meredith Aug 19, 2019

Show notes

Do you want to help us shift the Down Syndrome narrative in a super practical and very simple way? Then this is the episode for you!

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 literally 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 dynamic 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, tell a friend (or 10), and help us redefine the Down Syndrome diagnosis.

It’s time to bridge the gap between the matter-of-fact-scary-medical stuff that the doctors warn you about, and the wonderful-life-giving-hopeful stuff that social media advocates promise! So join us for and our fabulous guests as we chat about the research that will challenge doctors to rethink the Down Syndrome diagnosis. Then, share your thoughts by taking Meg’s survey!

SHOW LINKS

Survey for Parents

Survey for Genetic Counselors

Stephanie is the author of the materials on lettercase.org as well as the co-author of the books on downsyndromepregnancy.org.

Stephanie is also a contributer to Amy Julia Becker’s blog, you can read her post here. And most recently, she wrote for Think Inclusive.

SHOW SPONSOR: PRIDE SOCKS

Pride Socks empowers wearers to be proud of who they are! They also collaborate with Ruby’s Rainbow to help send individuals w/Down Syndrome to college! That’s right, a great product with a great goal!

Visit https://pridesocks.com/ and use code: theluckyfew at checkout for 15% off your purchase!

36. A Tough Conversation About Sexual Abuse In The Down Syndrome Community Aug 12, 2019

Show notes

“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 are so grateful to have our wise friend, Lindsey here to engage in this important conversation and empower us all to make a change. We know sexual abuse is tough to talk about, but our kids are #WorthTheConversation. Thankfully, today’s guest is well-versed in this conversation. Lindsey 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, she 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. Remember listeners, you have the right to be present during your child’s therapies, the right to drop in unannounced, and the right to set expectations and boundaries with your child’s doctors, teachers, aides, baby sitters, care givers, and more. Let’s shout their worth and protect our kiddos, it’s definitely #WorthTheConversation.

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SHOW LINKS

Follow Worth The Conversation on Instagram and be sure to check out their website for more resources.

Keep up with Lindsey Strickland and her family on Instagram at @lindseystrickland.

Read Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality by Terry Couwenhoven.

Read God Made All of Me by Justin & Lindsey Holcomb.

Read Come As You Are by Emily Nagoski, PhD.

Lindsey used Terry Brown’s So Happy To Learn teaching methods to homeschool Ben, check those out here!

LET’S CHAT

Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes.

HELP US SHIFT THE NARRATIVE

Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

35. Traveling with The Lara Family Aug 05, 2019

Show notes

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.

So friends, join us for the perfect episode to listen to on your next plane ride or road trip. And remember, you are a narrative shifter and worth shouter no matter where you are! Happy travels!

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To join the Lara family on all their fun adventures, follow @hooray4sunny, @thatsmrslara, & @andylikeswords on Instagram!

LET’S CHAT

Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes.

HELP US SHIFT THE NARRATIVE

Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon.

Head to Youtube and subscribe to The Lucky Few’s NEW Channel: In Search of The Lucky Few. Click here to start watching now!

34. Our Response to the East Family's Negative Down Syndrome Diagnosis Jul 29, 2019

Show notes

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 that your child won’t be like ours?

So friends, now that you’re all caught up on recent news, join us for a conversation all about health and Down Syndrome, fear of the unknown, the challenges of being a public figure, and grace for families with a potential diagnosis. We’re shouting the worth of our kiddos extra hard right now, and giving lots of extra grace too. Because that’s what people with Down Syndrome have taught us to do. Shawn and Andrew-- see why we are who we are, #TheLuckyFew.

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SHOW LINKS

Read, ‘As Long as the Baby’s Healthy’… But What If He’s Not? by Micha Boyett

You can find the videos everyone is talking about here:

pregnancy complications | the east family

answered prayers. | the east family

The East’s Feature on The Today Show

LET’S CHAT

Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes.

HELP US SHIFT THE NARRATIVE

Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon.

Head to Youtube and subscribe to The Lucky Few’s NEW Channel: In Search of The Lucky Few. Click here to start watching now!

33. How Has Down Syndrome Created Your Family Norm? Jul 22, 2019

Show notes

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.

How would our extended family react to having someone with Down Syndrome in the family? How would having an older and younger sibling with Down Syndrome affect our middle daughter, Truly? How would we ever create “normalcy” out of this? One thing we do know for certain 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!).

Clearly, we have A LOT to cover today. 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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Keep up with the Avis’s on Instagram and their website! For more on their family’s story, read The Lucky Few and Scoot Over and Make Some Room by Heather Avis

Join The Lucky Few mailing list for updates, stories, events, and more!

Connect with Heather’s friend Christy on Instagram at @cjpics

LET’S CHAT

Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes.

HELP US SHIFT THE NARRATIVE

Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon.

Head to Youtube and subscribe to The Lucky Few’s NEW Channel: In Search of The Lucky Few. Click here to start watching now!

32. The (Beautiful) Reality of Befriending Someone with Down Syndrome Jul 15, 2019

Show notes

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 we’re not just talking about those forced, obligatory, hero-complex infused friendships. We’re talking about people without DS who might have no previous interaction with the DS world intentionally creating meaningful friendships with their peers who have extra chromosomes. But let’s be real, those friendships aren’t easy, especially at the grade school level. Parents of kids with Down Syndrome often feel overwhelmed when trying to make playdates for their child with peers who do not have DS. Likewise, parents of neurotypical children might feel the same discomfort when thinking about how to initiate a friendship their child’s peer with Down Syndrome. Oh friends, it’s so hard. But, 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. When Rachel found out that the Avis’s were moving to her city, she immediately reached out to Heather and assured her that Macy would always be welcome in her home. Shortly after, Heather dropped Macy off for her first solo playdate, and we’ll let you listen to this week’s episode to find out the rest. (Spoiler: this story only gets better). Today, Rachel’s home is a place Macy can be herself and play with her friends without the fear that once accompanied a playdate. 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.

So mamas of all kiddos, recap those playdates together, have grace as we ALL learn, and let your kids have fun with people a little different from them. We’ll all be better for it.

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Keep up with Rachel Haack and her family on Instagram at @raescornerblog

LET’S CHAT

Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes.

HELP US SHIFT THE NARRATIVE

Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon.

Head to Youtube and subscribe to The Lucky Few’s NEW Channel: In Search of The Lucky Few. Click here to start watching now!

31. Abortion and Down Syndrome Jul 08, 2019

Show notes

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. Know that we acknowledge the circumstances that often lead to abortion, the support needed to sustain a full term pregnancy and then to raise that human, the various perspectives that can shape your view on abortion, and the long term effects of having an abortion.

Yet, 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?

We’re tackling these tough questions and a whole lot more this week. Friends, help us remove our blinders and engage in this conversation with us by visiting our Instagram and leaving us a comment or message! And as always, thank you shouting the worth and shifting the narrative with us, dear listeners!

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SHOW LINKS

See abortion rates for babies with a prenatal Down Syndrome diagnosis here

Discover what people with Down Syndrome say about their quality of life here

Read “A Word On Pro-Life” by Heather Avis

Read “Stop Dragging My Child With Down Syndrome Into Your Arguments About Abortion” by Micha Boyett

Read “I would’ve aborted a fetus with Down Syndrome. Women Need That Right.” by Ruth Marcus

Learn more about legislation that protects unborn babies with Down Syndrome here

30. Surviving (And Thriving) This Summer! Jul 01, 2019

Show notes

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!

When your child refuses to transition between summer camp activities, but then just an hour later conquers her fears and climbs to the top of a very tall ropes course, it’s worth it. When you worry over your child’s health because they won’t eat new foods on summer vacation, but then you see him giggling with his grandparents, it’s worth it. When your child requires some extra support from a camp counselor, and you have to explain all the things about her again and again, but then you see all the fun she has with their peers, it’s worth it.

To all of you Lucky Mamas, Dads, Friends, Caregivers- we get 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!

One last thing, do us a favor and let us know what you want to hear us chat about! Submit your questions to our Instagram page or shoot us an email at hello@theluckyfewpodcast.com. Oh and don’t forget to call in your good news. Let us know how awesome your loved one with Down Syndrome is by calling and leaving a message at: (424) 442-9147. We want to feature your voice on our next episode!

29. Heather Avis on her new book: Scoot Over and Make Some Room May 20, 2019

Show notes

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?

We hope you’ll join this powerful movement to make some room by pre-ordering your copy today. Help Heather reach her 25 by 25 goal: 25,000 copies sold by the release date, June 25th! Plus, when you pre-order, you get special freebies-including the first chapter of the book!

Thank you for joining us for another season! We will be back very soon, and we are very excited! For now, keep shouting the worth and shifting the narrative by making room for anyone missing from your couch. And as always, don’t forget to own your influence wherever you are.

SHOW LINKS

PRE-ORDER your copy of Scoot Over and Make Some Room by Heather Avis here.

Head on over to scootoverbook.com for more content and insight, and then join the book launch team!

Learn more about Heather Avis and her family at theluckyfew.com or on Instagram at @theluckyfewofficial

You can find every episode from Season 3 here!

SHOW SPONSOR: HOPE*WRITERS

Have you ever thought about writing a book but didn’t know where to start? Well, Hope*Writers believes that you’re already on your writing journey! Take their FREE 30 second quiz to find out where you are on your journey and where you can go. Visit hopewriters.com/quiz to take the quiz today!

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is available for pre-order on Amazon.

28. Owning Your Influence In ALL Your Spaces! May 15, 2019

Show notes

“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! Tesney says her hope that her son can accomplish anything has been restored. What a gift it is to celebrate this milestone with her, and all of our listeners!

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. Don’t forget to join us next week for our final episode of the season featuring an interview with the one and only Heather Avis. We’re talking all about her new book: Scoot Over And Make Some Room, and you won’t want to miss it!

You can find every episode from Season 3 here!

Do you need potty training tips? We got you covered!

Read the James Carr/Linda Leblanc research that Tesney used to potty train her son here.
Check out the book that Heather found helpful in potty training her daughter here.

SHOW SPONSOR: HOPE*WRITERS

CHECK OUT HEATHER’S NEW BOOK

Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is available for pre-order on Amazon.

Head to Youtube and subscribe to The Lucky Few’s NEW Channel: In Search of The Lucky Few. Click here to start watching now!

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