Podcast Clips

This week we are fortunate to have Ben Hughes back on the podcast to discuss the Down Syndrome Diagnosis Network’s (DSDN) annual “Rockin’ Retreats” that offer our community the connection and respite caregivers truly need.

Retreat information page: https://www.dsdiagnosisnetwork.org/dsdn-retreats

*Trigger Warning: The r-word is used in this conversation.

This week we revisit our interview with Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understand why, but we highly recommend listening all the way through to the end.

Dr. Ilona Kleiner has been both our children's pediatrician since birth. Today we discuss with her the importance of always seeing the whole child and how her care for Liam really isn't any different than that of a typical child.

Dr. Kleiner's Bio: https://www.pamgdocs.com/copy-of-about-our-doctors-1

October is Down Syndrome Awareness Month and in this episode, Stephen and Lori discuss another angle in your next Awareness Campaign. Some of the most important people to make aware of our community's potential are educational professionals. We as parents can advocate but it just might be our children who change the minds of those in charge of their education.

Today we are joined by Sandra Baker from the Down Ssyndrome Association of Los Angeles (DSALA) and Dr. Brian Skotko from the Down Syndrome Clinnic To You (DSC2U)Sandra Baker from DSALA to discuss their collaboration and how they are supporting Spanish-Speaking families that have a member with Down syndrome.  

DSC2U: www.DSC2U.org

DSALA: www.DSALA.org

We had such fun talking to Liz Plachta, the founder of Ruby’s Rainbows! Ruby’s Rainbows grants scholarships to students with Down syndrome who are seeking post-secondary education, including enrichment or vocational classes, and helping them achieve their dreams of higher education while spreading awareness of their capabilities and general awesomeness.

Ruby’s Rainbow: www.rubysrainbow.org

In this episode we give an update on our son Liam, a 13-year old in middle school, and discuss how far he has come, what supports have helped us navigate his transitions into middle school and how we are helping him find the independence every teen wants to cultivate. 

This week we revisit the story of Jad Issa, a man with Down Syndrome who is a husband, father and respected citizen. At diagnosis, parents of children with Down syndrome are immediately told all the things their child won’t do. Jad’s life shows us that these preconceptions aren’t only untrue but the very belief in them often cause limitations. As with every child, all things are possible. We hope that this conversation with Jad’s son Sader, a dentist in Damascus, brings comfort to parents to believe in what may be thought of as impossible.

This week we are joined by Abby Brandon-Livits and Misty Adams from the National Down Syndrome Society to talk about the 2023 NYC Buddy Walk and it’s wonderful Times Square Video presentation that redefines the image of the Down syndrome community.

Today we’re joined by Dr. Tom Mahan, who specializes in Alzheimer’s research with a focus on individuals with Down syndrome. Tom is a father of three boys and his oldest son, Teddy, has down syndrome which is what sparked him into taking his already existing research of Alzheimer’s and guiding it to a focus on individuals with Down syndrome.

In this episode, we speak with Johan Lindborg, founder of t21 Coffee. We have a beautiful conversation about his journey with his 12 year old son Cooper and how he has transformed from the doubts he had and the darkness he felt when receiving his son's diagnosis.  T21 Coffee employs individuals with Down syndrome and donates a portion of every bag sold to Down syndrome research.

T21 Coffee: https://www.t21coffee.com

Ted Green is a documentarian whose latest film, ‘The Best We’ve Got: The Carl Erskine Story’, is an in-depth look at Carl Erskine, a Dodgers pitcher whose son Jimmie was born with Down syndrome 63 years ago. Carl and Betty, when faced with the inevitable institutionalization of their son, which was the option that was customarily given by the medical community to protect the integrity of their family unit, made the choice to take their child home and raise him.

Stream The Film: https://watch.eventive.org/heartlandfilm

In this episode we speak again to Zen Buddhist Priest, Karen Maezen Miller and discuss the art of letting go, letting the answers be in the moment, and finding surrender in acceptance of that moment.

Maezen's Website: https://karenmaezenmiller.com

Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1

In this episode we speak with Araon and Julie, parents of 5 year old Elyse, about the lessons learned, the changes seen and the realizations made from diagnosis till now.

In this week's episode we have a wonderful conversation with Indira Cruz discussing the impact a non-inclusive environment had on her brother, now 50. By looking back at our past we learn from the injustices and see the consequences they had on generations of people with disabilities. Some of those lessons can be hard. This is one of them.

In this episode we celebrate Citizens of the World Charter Schools whose approach to inclusion was a life changing discovery for our family.  We sit down with  Dr. Maureen and Mrs. Aries, Co-principals of CWC, and discuss the importance of inclusion, its impact and why we as parents, if it is what is best for our student, should insist on our child’s right to an inclusive classroom.

Dr. Mona is an attending physician in the Department of General Pediatrics at Children’s Hospital Los Angeles and an Associate Professor in the Department of Pediatrics at the Keck School of Medicine of the University of Southern California. She sat down with us to challenge the many medical myths and stereotypes surrounding children with Down syndrome.

This week Liam turns 13. We recorded this episode on Valentine's Day with is fitting because love is the driving force of this family. Becoming a teenager is a milestone we have been looking forward to and we are thankful for all the ups and downs that have gotten us here.

We talk today about how we learn to do things differently, the way we learn from our past, and how the seemingly smallest memories can hold so much in them, like the little lessons along the way. We also explore the need to accept when it’s easy, and how that can be a challenge in itself.

In this week’s episode we discuss, with Hollywood casting director Michael Sanford, the importance of inclusion in everyone's life and the responsibility the film and television industry has to uphold a fabric of diversity that is reflective of our global society.

We’ve talked about self-care on this podcast and the importance of 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.

In this episode we talk about hope. Losing hope when challenges become overwhelming and finding it again on the other side.

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.

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.

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.

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.

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 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.

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.

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.

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 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.

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 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.

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.

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.

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.

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.

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.

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.

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. 

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. 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.

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 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.

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.

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. 

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 Lori and Stephen visit with Jake Pratt, who with support, advocacy and inclusion is living his dreams and changing the narrative. 

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

We are thankful to have Dr. Brian Skotko on today’s episode. Dr. Brian 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.  Today we talk about his new online clinic, DSC2U, the importance of inclusion and how we as a community can help the medical profession improve their delivery of a Down syndrome diagnosis.

The summer is a time to play and relax but if you use it as a time to front load for the coming school year, as well, it can be that academic advantage you have been looking for.

Chris joins us again with his parents, Nik and Patty to discuss how they have changed their approach to learning and how that has prepared Chris to do things no person with Down syndrome has ever done before.  Chris’s Website: https://chrisnikic.com