Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 2 we re-air Caroline’s second appearance on the podcast where she dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down Syndrome have changed over the years.
Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 1 we re-air an extremely informative interview with Child Development Specialist, Caroline Bencze-Fernandez where she explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.
In this episode we discuss our journey with awareness. We explore how we are learning to cultivate what awareness means in our lives, the way in which awareness has changed over the years and its impact on our advocacy.
Stephen recorded a solo episode this week, unbeknownst to the family, to express some things that have been on his mind and as a nice surprise to Lori and the kids whenever they come across it. It’s kind of a time capsule episode focused on this present moment and how there is nothing as important as right now.
This week we talked to Dr. Eric Rubenstein and one of his co-researchers, Kaethe Sigelko to discuss self advocacy and the importance of including people with Down syndrome in shaping our community.
For everything they ever told you your child would not or could not do - sometimes it takes an example of what is possible to remember who we are and that every child’s life is one of possibility.
Documentarian, Ted Green visits with us to discuss his most recent film “The Best We’ve Got: The Carl Erskine Story”. As a teammate and close friend of Jackie Robinson and then as the father of a person with Down syndrome, Carl played a pioneering role in two human-rights movements.
In this week's episode we are joined by Zen Buddhist Priest, Maezen Miller. We discuss having patience and letting go in order for it to all unfold. Believing and having patience can enable our children to be who they are, go where they go and do what they do, to become exactly who they are.
Mother Asana merges the focus of Ally’s art and expression with Gina’s yoga practice and meditation insights. Gina is a devotee to her Spiritual Practice for over 20 years influenced by many practitioners & styles. Creating Connection is the cornerstone to her parenting & personal style. In her journey as a ‘warrior mom,’ Meditation & Asana has been instrumental in understanding & healing while raising a family with a special needs.
Vaish is a Functional Nutrition Practitioner and Science Educator. She is the founder of Functional Nutrition for Kids, and Plum Pudding Chemistry, both practices designed to optimize the learning potential of kids with Down Syndrome and/or Autism using both Functional Medicine and Non-Linear Education Principles.
We have learned a lot, some harsh realities and beautiful truths. We now move forward with eyes wide open, ready to learn from where we have been, into the unknown of middle school.
In this episode with Ellen Coulston we discuss Self Determination as a tool to promote independence, confidence and participation by student led IEP planning, making that student a part of the dialogue instead of a 3rd person participant in a conversation about their life goals.
In this conversation we sit down with Dr. Beverly Celotta. Bev is a retired School Child Psychologist who shares her knowledge about how to set all children up for success.
In this episode we sit down with Caden Cox and his parents, Mari and Kevin, to talk about their history making and game changing journey to inclusion. Caden is the first person with Down syndrome to play as well as score in a NCAA/NJCCA College football game.
This week we have a wonderful conversation with Dr. Eric Rubenstein, an Assistant Professor in the Department of Epidemiology at Boston University. We discuss equality and inclusion in research as it pertains to Down syndrome.
Today we have an open and candid conversation with the author of ‘An Uncomplicated Life’ Paul Daugherty and his wife Kerry about their approach to early education, college, dating, sex, marriage and lots of other things we are told our kids won’t do. ‘An Uncomplicated Life’ is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others.
In this episode we find a way to inclusion through empathy. Our conversation with Micah Kessel was an empowering and insightful discussion offering ways to focus our advocacy and to come from a more nurturing and loving place. Micah is the creator of Empathable and Playground of Empathy. These organizations work nationally with world-renowned academics to bridge science, technology, and art to amplify the intersectional experiences of the underserved at your place of business or learning.
Liam graduated from elementary school, on curriculum, in an inclusive classroom with his peers. We reflect on the moments that led to his accomplishment and what we could have done better if we knew then.
It was so nice spending some time with founder Ila Halby to talk about the Zeno Mountain Farm Camps, their feature film “Best Summer Ever” and the power of representation in film. Whether used as a noun or a verb, Zeno stands for inclusion.
We are joined by Rob Snow, the founder of The Improvaneer Method. The Improvaneer Method uses improvisation to build skills that will greatly improve social, workplace and lifetime opportunities in those with developmental disabilities. With both in-person and online classes, it is widely assessable and has been a real game changer for many people in our community. We also talk briefly about Rob’s book, ‘What I Should Have Said’ and his ‘Minimize The Mountain’ talk.
This week we are honored to interview actress, writer, producer and director Lena Dunham. Lena cast our son, Liam, in her film SHARP STICK and it was one of the most supportive, inclusive and beautiful experiences we’ve had on this journey. Her set was a model environment for our society and we talk to her about how she developed her advocacy for so many marginalized groups and individuals, what she learned from working with Liam and her future family plans.
This week we get to talk to Dr. Brian Skotko again! Dr. Brian has some updates to DSC2U.org to discuss and we also chat about the T21RS International Conference that will be taking place in Long Beach, CA. June 9-12. Dr. Brian Skotko is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies toward children with cognitive and developmental disabilities.
We were so fortunate to get to spend some time with Michelle and Paul Tesori. We met this Dynamic Duo through our good friend, actor Andy Buckley, and it is fitting that this episode is being released on PGA Championship weekend since Paul has been a PGA Tour caddie for nearly 20 years. Inspired by their son Isiah, Michelle and Paul created the Tesori Family Foundation to help support the Down syndrome community. We talk about education frustrations, what the Tesori's are doing to make a change and how we can harness our anger into a motivator to make a change.
Well here we are! We’ve learned so much in these two years and one hundred episodes and take this time to reflect on this experience and focus on where we go next.
In this episode we sit down with Maezen and discuss the different paths this journey has taken us, the pivot in directions we have chosen, how to trust those choices and allow some ease and embrace the gifts.
In this episode we talk about some of the language/words we have learned that have had a profound impact on our journey and more specifically our quest for equality in Liam’s education.
In this episode we talk with Jesse Norell whose daughter’s diagnosis of Down syndrome and a heart condition inspired him to write an album. Using music as a cathartic means to heal and find his way through the unknown, Jesse shares his story in hopes of helping others find their song.
Today we are joined by Dr, Vaish Sarathy to discuss her Non-Linear Education method and to explore the positive affects that assuming intelligence has on all students regardless of presumed abilities.
In 1969 Willie Dawkins was finishing first grade when his mother received a letter saying he would be transferring into a desegregated school the following year. In this episode we honor his story, his parents who gave him a foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion.
This week we talk about our personal experience discussing education and inclusion with someone we love who is of the belief that educating our children is asking 'extra' of the school system. We also talk about our new IEP and a story that demonstrates: it is a change of heart that will change the mind that can change the world.
This week we are joined by Paul and Kerry Daugherty to discuss Paul’s book about his daughter, Jillian. It is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others.
In this week's episode we discuss perceptions and our experience with Lena Dunham's new film, SHARP STICK, which premiered at the Sundance Film Festival last week and starred Liam Saux. We discuss our concerns with Down syndrome representation, the affects of misperceptions and ultimately the overwhelmingly positive and insightful experience the project was to our entire family.
We have the privilege of speaking again with our friend Paul Denniston. In this episode we discuss Paul’s new book where he breaks down his practice of healing.
This week we have a wonderful conversation with photographer Houston Vandergriff and his mother Katie. We discuss education, advocacy, focusing on the positives and the importance of finding your passion. Houston has traveled the world and his pictures communicate its beauty in the most breath taking ways.
This week we welcome a New Year and a new school. We discuss how the educational system can make us feel and the importance of making a change when we know it’s right. We address the perceptions of failure and how to more forward after feeling broken.
Today we explore the Self Determination Program in California with Kelly Kulzer-Reyes of Club 21. Eighteen states in the US have similar personalized programs that distribute state funds in a way to insure that people with disabilities have access to appropriate services throughout their lifetime. An extremely informative episode for those who want to have more control of the state services provided for their loved ones.
In this episode we discuss advocacy in action with entrepreneur and advocate John Cronin and his father Mark. Together they have built the company Johns Crazy Socks, with a business model that Fortune 500 companies aspire to achieve. Through highlighting the strengths of others, cultivating dignity and spreading happiness they are making differences in our community and the world.
If all the world were a skate park, celebrating our abilities and individual expression would be a given. In this episode we talk to Miki Vuckovich from USA Skateboarding about their “Skateboarding For All” initiative. The beauty found in the inclusive skating community is one we strive to cultivate in the classroom and the world. You can join them on December 11th for a Virtual Wrap Party which includes members of the U.S. Olympic team and several skateboarding legends.
This week we are grateful to have Melissa Kynoch back with us to tell the story of her son, Bertie’s, heart surgery. It is a very scary experience that about half of all family’s in the Down syndrome community experience. We thank Melissa for opening up to us about the emotions she felt and for sharing all the things she wished she knew then.
In this episode we revisit Julie Picot and talk about what the past year has held for her family and their journey. We discuss the milestones reached on her advocacy path and what she wish she would have known earlier.
In this conversation we sit down with Sader Issa to get an update from the past year after graduating from Dentistry school and what his future holds. Being a man raised by a father with Down syndrome, we also discuss the rewards of advocacy and the awareness and change it creates vs. the negativity that can exist when his story is exposed to the many opinions of social media.
November is known as the month of gratitude and there is no one better to talk to about gratitude then our good friend Karen Maezen Miller. Maezen is a Zen Buddhist Priest who consistently gifts us wonderful words of wisdom. Today we discuss the practice of gratitude and how releasing expectations brings us closer to true thankfulness.
October is Down Syndrome Awareness Month and to end the month we revisited with Melissa Kynoch. Melissa is a past guest who may be best known for her appearance on the BBC Documentary Series ‘Life and Birth’. We discussed her experiences of the past 18 months and what changes she would like to see in society regarding the perceptions of people with Down syndrome.
October is Down Syndrome Awareness Month. We’ve talked about self-care on this podcast and the importance for parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves.
Cousins, Jack and Caitie, join us to reveal their concept of a Superhero Cinematic Universe where everyone has the courage to unapologetically be themselves. We discuss how their characters will celebrate the hero within and also the importance of inclusion for mental health. Caitie’s brother, Luke, stars as ‘Ultra Luke’ and we talk about their relationship and how she hopes to change the future by changing the perception of people with Down syndrome.
October is Down Syndrome Awareness Month and in this episode we discuss the true meaning of awareness and advocacy. Many self advocates have blazed a trail for the new generation in our community and we name a few of them so that we know who to look up to when we need encouragement.
In this final episode of our three-part sibling series, we sit down with Sophia and Jake Pratt’s sister, Amy Hyde, to discuss some of the gifts of having a sibling with Down syndrome. We also explore topics including advocacy, emotions and the R-word.
In this second installment of our three-part siblings series, we visit with Dr. Brian Skotko and Sue Levine to talk about the book they wrote entitled, ‘Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters’. This is the first book written exclusively for teens with a brother or sister with Down syndrome and tackles a broad range of their most common issues and concerns.
In this first installment of a three-part sibling series, we sit down with our 14 year old daughter, Sophia, to talk about her experiences as a sibling of a brother with Down syndrome.
As we return to school to find a new unknown, we may find ourselves facing familiar challenges and feelings. In this episode we discuss the importance of a support system that reminds us we are never alone.
What is the purpose of a Special Needs Trust? What is a Living Will? How do I set up a Conservatorship when my loved one is an adult? How much does all this cost? Attorney and advocate, Enrique Perez, sits down with us to answer all these questions and more on this extremely informative episode for the entire disability community.
We have the honor again of visiting with Zen Buddhist Priest, Karen Maezen Miller, to discuss the Zen term of a “beginner’s mind” which means an open, innocent and non-judging mind, the mind we bring to everything we do when we are beginners.
In this episode we visit with Dr. Brian Skotko again and talk about the impact of Alzheimer’s in the Down syndrome community and we discuss some pro-active steps that may help to improve the long-term wellness for people with Down syndrome.
This week is part two of our conversation with Liv Meriano and Danielle McKinney, from the Down Syndrome Resource foundation based in British Columbia, Canada. In this episode we continue the discussion on education, supports, inclusion and changing the mindset and approach to supporting students to access the curriculum and reach their potential.
In this week’s episode we are joined by Danielle McKinney and Liv Meriano from the Down Syndrome Resource Foundation to talk about educational tools and strategies parents can use at home and implement in their child’s school IEP.
In this week’s episode Lori and Stephen visit with Jake Pratt, who with support, advocacy and inclusion is living his dreams and changing the narrative.
In this week’s episode we speak to Lauren Costabile, the founder of Hearts of Joy International, an organization that provides life-saving heart surgery for individuals with Down syndrome all around the world.
Today we interview Máire, Heidi and Liz about their ‘Downright Discrimination’ legal campaign which fights to change the law of the land and create equality for people with disabilities. Presently, in the U.K., it is illegal to abort a fetus after 24 weeks unless it has Down’s syndrome. A baby with Down syndrome can be aborted up to birth. We examine the effect this inequality has on our community by creating separation and discrimination that follows us through life.
Today we have a ‘Community Conversation’ with advocate Mary Cole discussing her inspiring experience with inclusion. Mary lives in Cambridge, England and has a 14 year old son with Down syndrome named Ben.
In this week’s episode Dr. Brian Skotko shares the most up to date information surrounding the effects of COVID-19 on individuals with Down syndrome. We discuss the importance, safety and science of the vaccine along with tools to help with the process. As we enter back into the world, post-pandemic, the importance of inclusion in society continues along with so much more.
In this week’s episode we revisit one of our earlier conversations. We had the honor of talking to Chris Nikic and his parents, Nik and Patty last summer. In November Chris became the first person with Down syndrome to complete an IRONMAN. We discuss their 1% philosophy and how people with Down Syndrome can do more than ever expected if given the right tools and time.
This week we talk to Julia Toronczak about her experiences and the lessons she’s learned by growing up with her twin brother Michael, who has Down syndrome. We focus on inclusion and equity in our community and beyond.
Executive Director of ‘Bridgerton’, Julia Anne Robinson, joins us to discuss a film she directed in 2007 called ‘Coming Down The Mountain’ and starring Tommy Jessop and Nicholas Hoult. We breakdown this film that changed our lives and told some truths about the journey that rarely get talked about.
Happy Mother’s Day! Sunday, May 9, 2021 is Mother’s Day for our Canadian, Australian & American listeners. Mothering Sunday in the UK was back in March and in Mexico, Mothers are celebrated every year on May 10th. Wherever you are, whomever you are and however you celebrate… this episode is for all the Mothers of the world.
In this episode, Physical Therapist, Natalie Spiteri shares her personal journey through infertility, the impact of a diagnosis of Down syndrome and the yearning for the life she imagined beyond what she was told.
This week we are joined by actress Megyn Price to discuss inclusion, the importance of encouraging others to express their uniqueness and how her Uncle, who had Down syndrome, affected her family in a positive way.
This year Liam turned 11 and in this episode we reflect where we started, what we've learned and where we are. Let's celebrate... always celebrate.
Another beautiful conversation with Zen Buddhist Priest Karen Maezen Miller. We all have fears. What if we could see what is at the root of these fears, acknowledge and deconstruct them and then continue forward free from those fears.
An enlightening conversation with Dr. Mona Patel Gera to answer the questions parents of children with Down syndrome often have.
As parents, we all find ourselves dealing with confusing emotions and challenges from time to time. In this conversation, Zen Buddhist Priest Karen Maezen Miller, gives us some guidance to help us deal with the negative.
Our conversation with Executive Producer and Director of ‘Bridgerton’, Julie Anne Robinson about the film ‘Coming Down The Mountain’ and the importance of inclusion in media.
Speech Pathologist, Kerri Wake, joins us to talk about communication, supportive tools parents can provide their children and the pathways to receiving speech therapy in the school setting.
Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself. Originally set for release a year ago, this episode celebrates Liam's 10th birthday and all the accomplishments and lessons learned over a wonderful decade.
Occupational Therapists at McRory Pediatrics, Erin Stanford, visits us to discuss at home and at school OT and helps us more clearly define the overlap of this therapy with Physical Therapy, Speech and Behavior Therapies.
Occupational Therapist at McRory Pediatrics, Erin Stanford, visits us to discuss at home and at school OT and helps us more clearly define the overlap of this therapy with Physical Therapy, Speech and Behavior Therapies.
Clinical Supervisor of Behavioral Services at McRoryPediatrics, Kyle Davis, visits us to discuss behavioral issues at home and at school. He also answers questions about when, how and why behaviors need to be addressed.
Nikki McRory is the founder of McRory Pediatrics and in this episode Nikki gives us an insightful look at the different therapies that can help support your child in reaching their potential.
Steven Gustafson is a founding member and bassist of the band 10,000 Maniacs. His sister, Cathy, had Down syndrome and we got a chance to discuss with him the impact she had on his life and the lives around her.
In this episode we talk with Cristina Bowman of Diff-Ability about the British soap opera Emmerdale and it’s recent storyline which depicts a couple having an abortion because their baby has Down syndrome.