Posts tagged Down Syndrome
45: Adoption & Down Syndrome w/Stephanie Thompson from the NDSAN

“My doctor told me that my baby would have Down Syndrome and then they brought up termination, so I came home and googled Down Syndrome and adoption and you were the first thing that came up..” the beginning of countless conversations Stephanie Thompson shares with expectant parents.  A mother of a 27-year-old son with Down Syndrome herself, Stephanie knows the uncertainty that accompanies most diagnoses, and the desire of many to parent a child with Down Syndrome, so that’s why she created the National Down Syndrome Adoption Network. The NDSAN provides support, education, counseling, and perhaps most importantly, options, to parents expecting a baby with Down Syndrome.

Read More
44: Shifting the Diagnosis Narrative w/Carissa Carroll from Jack's Basket

Last month, we went to DSDN’s Rockin’ Mom Retreat in Nashville, Tennessee and partied with over 700 moms who have kiddos with Down Syndrome. And we even sat down to interview a few.. including Carissa Carroll, the founder and president of Jack’s Basket! This mother of three children (one of whom rocks an extra chromosome!) learned the hard way that a Down Syndrome diagnosis is not often met with a “Congratulations!” And so, she took matters into her own hands and created Jack’s Basket, a nonprofit organization that hand delivers complimentary gift baskets to families with a new DS diagnosis. Not only has Carissa changed the diagnosis experience for over 1,700 families in 11 different countries, she has developed educational resources for the medical professionals delivering the diagnosis. 

Read More
43: Back to School & All Things Best Buddies w/Val Schlieder & Allison Covell

We’re all hoping for great friends for our kiddos, right? And as parents of kids with Down Syndrome, we might be hoping for those great friends even more than most. That’s why we are so excited to talk to you all about Best Buddies, an international non-profit organization that focuses on creating meaningful, one on one, friendships between students with and without different abilities. Here today to tell us all about the program and share their amazing friendship story is (our co-producer) Val Schlieder & Allison Covell. Starting out as high schoolers in the program and then eventually going on to co-launch their own college group, both ladies have been involved with Best Buddies for nearly 10 years! So friends, join us as we answer your questions about all things inclusive friendship and Best Buddies! How can parents of kids without different abilities encourage their children to have inclusive friendships? How can we make sure students value friendships with their peers who have different abilities? And, how can you join or start a Best Buddies program at your school?

Read More
42: More Than A Handbag - An Interview w/Shivam Punjya

The National Down Syndrome Society (NDSS) gave his family hope when his sister was born, and now he’s giving it right back. Friends, meet Shivam Punjya, the founder of Behno and the brother of Nini, his younger sister with Down Syndrome. He made fashionable, quality handbags accessible to Nini, and anyone else who might benefit from a rounded zipper and bigger storage space! We love functional fashion, but we love Behno’s collaboration with NDSS even more! Check out this extraordinary partnership and join us for an interview with it’s creator, Shivam!  

Read More
41: Back to School & All Things Teaching, Learning, & Growing!

Another week back to school and we feel all kinds of grateful for the amazing teachers in our lives who literally make learning happen for our kiddos every single day.  Teachers, we’re here to say that we see you, we love you, and we appreciate you! That’s why today we’re answering questions from you dear listeners about how teachers can modify their classrooms, advocate for all of their students, and become lifelong learners in the process!  So friends, join us for a chat about some of the most important adults in our kids' lives, all the ways you can partner with your child’s teacher, and what Heather wishes she knew when she was an educator. 

Read More
40: Back to School & All Things Education, Inclusion, & Down Syndrome

Anyone else feel overwhelmed and under-qualified when the back to school season begins?!  We know we do! But here’s the thing: when it comes to your child’s education, YOU DO YOU. If you doing you means homeschooling, great!  If it means a fully inclusive general education setting, great! If it means a special education class setting, great! This week we’re here to say that we are cheering for you and your child with Down Syndrome at school, at home, and in every space you occupy.  Because when it comes down to it, choosing the “perfect” (if there is such a thing) classroom for your child with Down Syndrome depends on so much more than meets the eye. Remember that we can shout the worth of our kiddos from any platform, in every classroom! 

Read More
39: Back to School w/IEP Experts Vickie Brett & Amanda Selogie

It’s official friends, we are back to school.. and we are taking you all with us!  First things first, let’s talk IEPs with the founders of The Inclusive Education Project: Amanda Selogie and Vickie Brett.  These two bright and beautiful lawyers use their extensive knowledge of education law and their passion for people with different abilities to educate families on special education rights and connect them with pro bono legal aid.  And fortunately for us, they’re sharing their top IEP tips and strategies today! They encourage all of you parents to follow up (in writing) about post-IEP-meeting tasks, provide clear expectations, and create (reasonable) deadlines for everyone on your child’s team.  There is truly no better way to kick off our September Back to School series than with Amanda, Vickie, and their nonprofit - The Inclusive Education Project.

Read More
38: Remembering Jimbo

This week on The Lucky Few Podcast, we are remembering James Eugene Lanto, better known as Jimbo, and even better known as Jimbo_Is_The_Man on Instagram.  For many of us in the online Down Syndrome world, Jimbo’s Instagram account was the first glimpse of what an adult life could look like for our little ones with extra chromosomes.  Jimbo’s spirit seen through those little squares on our phones gave us immense hope and great joy for our child’s future. And for those of us who have other children without Down Syndrome, the loving actions of Jimbo’s sisters erased our fears that our children’s siblings might one day grow bitter or resentful against their brother or sister with Down Syndrome.  In the eyes of Jimbo’s sisters (and all of his 10 other siblings), Jimbo was more than enough just as he was, never a burden, and always a blessing. Hear more from two of Jimbo’s sisters, Pam and Julie, about life with their extraordinary brother and help us pay tribute to the man that showed us what it means to be part of #TheLuckyFew.

Read More
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.

Read More
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.

Read More
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.  

Read More
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? 

Read More
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.

Read More
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.

Read More
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?

Read More