We are parents of two children and one of them just happens to have Down syndrome. When Liam was born we didn’t know very much about Down syndrome and most of the information we did have didn’t seem very hopeful and positive. Well this podcast aims to share stories, break down stereotypes and help change the narrative by redefining Down syndrome.
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176. Revisiting 10,000 Maniacs Founding Member Steven Gustafson
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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. Today we revisit that interview to share this sibling love story. Episode Transcript: Please follow us on Twitter @ifweknewthenPOD you can…
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175. Communicating Our Stories with Sid and Vaish Sarathy
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This week we revisit our conversation with Sid and Vaish Sarathy. Sid, who has the duel diagnoses of autism and Down syndrome. Although he is non-Speaking, Sid is a poet with two published books. Dr. Vaish Sarathy is a functional nutrition practitioner and science educator. She is the founder of Functional Nutrition for Kids and Plum Pudding Chemis…
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174. Advocating For Speech Therapy - Julie Picot
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This week we once again sit down with Julie Picot but this time we are briefly joined by her daughter Elyse. We take a deep dive on the speech and reading journey in our community and discuss different ways to advocate for our children. Teach Your Child To Read in 100 Easy Lessons: https://a.co/d/3CEtpLY Episode Transcript: https://ifweknewthen7018…
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173. The Endless Possibilities of People with Down Syndrome: Revisiting Jake Pratt
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This week we revisit our interview with Jake Pratt, who with support, advocacy and inclusion is living his dreams and changing the narrative for people with Down syndrome. Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/27/173-the-endless-possibilities-of-people-with-down-s…
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172. Happy Mothers Day: We Celebrate You
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Today we celebrate all the powerful mothers who give so much to their children day in and day out. Remember how strong you are. The world runs on that power and we thank you. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/11/172-happy-mothers-day-we-celebrate-you/2/ Please follow us on Twitter @ifweknewthenPOD you can drop …
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171. Alzheimer’s Disease In People with Down Syndrome - Dr. Elizabeth Head
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This week we had the privilege to talk to Dr. Elizabeth Head, Professor and Vice Chair for research at the University of California, Irvine in the department of Pathology. Dr. Head has published more than 150 peer reviewed papers and has dedicated over 20 years to the study of aging and Alzheimer’s disease with a focus on people with Down syndrome.…
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170. Celebrating The Life of Carl Erskine with Ted Green
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The world lost pioneering Down syndrome advocate Carl Erskine on April 16, 2024, at the age of 97. Carl and his wife Betty, were involved deeply with the Special Olympics and charities which aimed at helping people with developmental disabilities such as his son Jimmy. Carl Erskine was a MLB All-Star, World Series Champion, ally of Jackie Robinson …
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169. The Annual DSDN Retreats with Ben Hughes
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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 Dad's retreat registration page: https://form.jotfor…
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168. Liam's 14th Birthday: Sharing Some Insight
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Our son turned 14 last weekend and in this episode we reflect on the joys, challenges and growth we've experienced together on this journey with Liam. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/03/09/168-liams-14th-birthday-sharing-some-insight/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our F…
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167. A Discussion About Using The R-Word with Lynette Louise
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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 understa…
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166. Finding The Right Supports Without Shame - Julie Picot
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This week we have the wonderful Julie Picot back on the show to discuss her experience transitioning her daughter, Elyse from TK to Kindergarten. We also touch upon how very often parents feel shame when guiding their school aged children out of diapers. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/17/166-finding-the-righ…
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165. Picking The Right Pediatrician with Dr. Ilona Kleiner
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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 Recommend books: What’s Going on Down There? by …
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164. Charlotte and Riley: Not Taking No For An Answer
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In this episode, we discuss Charlotte Fien’s path to advocacy, breaking down the barriers of education, the love story between her and her husband Riley, and how her infectious can-do attitude has influenced him to break down barriers in his own life. It is the story of two humans creating the life they want to live and never taking no for an answe…
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163. Revisiting Patience In The New Year with Maezen Miller
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Happy Martin Luther King Day! We start this new year by revisiting with our friend, 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. Karen Maezen …
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162. Living In The Moment and Taking the Time to Reflect On Life
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Follow Stephen while he unexpectedly flies back to Louisiana due to his mother’s illness. He reflects on the importance of experiencing all of life’s moments and truly being present. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/22/162-living-in-the-moment/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a l…
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161. Down Syndrome Awareness Month 2023: Bringing Awareness to Our Community’s Potential
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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 thei…
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160. The Inclusive Hub: A Gym For People of All Abilities with Liam Starkey
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Joining us today is Liam Starkey from The Inclusive Hub. The Hub was started in 2016 helping small groups of Autistic children around Liverpool, England take part in non-contact boxing and fitness sessions. It has now expanded and continues to empower people of all ages and abilities through exercise. Website: www.theinclusivehub.co.uk Order a tee …
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159. DSALA and DSC2U: Supporting Our Spanish-Speaking Community
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Today we are joined by Sandra Baker from the Down Syndrome Association of Los Angeles (DSALA) and Dr. Brian Skotko from the Down Syndrome Clinic To You (DSC2U) to discuss their collaboration in supporting Spanish-Speaking families that have a member with Down syndrome. DSC2U: www.DSC2U.org DSALA: www.DSALA.org DSALA Contact: (818) 786-0001 info@DSA…
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158. Best Buddies with Katelyn Quintero
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This week we were joined by Katelyn Quintero from Best Buddies International, which is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental…
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157. Ruby’s Rainbow with Liz Plachta
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We had such fun talking to Liz Plachta, the founder of Ruby’s Rainbow! Ruby’s Rainbow 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 awesomene…
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156. GiGi’s Playhouse with Nancy Gianni
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Today, we are joined by Nancy Gianni to talk about her foundation, GiGi’s Playhouse, which provides FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages, everyday. GiGi’s Playhouse empowers families by maximizing opportunities for daily achievement and lasting acceptance and in turn, showing…
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155. Using Your IEP to Make the Most of Middle School
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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. Citizen's Of The World Middle School: https://www.cwcsilverlake.org Episode Trans…
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154. Revisiting Our Interview with Megyn Price
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This is our conversation with 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. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/27/154-revisiting-our-interview-with-megyn-price/2/ Please f…
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153. Revisiting Jad Issa’s Story: A Man with Down Syndrome Raises a Family - An Interview with Sader Issa
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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 w…
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152. Revisiting The Canadian Down Syndrome Society’s Project Understood - Training Speech Recognition Technology
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This episode is the entire conversation we had with Matt MacNeil and Ed Casagrande from the Canadian Down Syndrome Society concerning their collaboration with Google AI to create a database that can help train Google’s speech recognition technology to better understand people with Down syndrome. Donate your voice at: https://projectunderstood.ca Le…
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151. The New York City Buddy Walk and Times Square Video with Abby Brandon-Livits and Misty Adams
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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. NYC Buddy Walk website: https://give.ndss.org/event/2023-new-york-city-buddy-walk-r/e478474 National …
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150. Down Syndrome Research, Ableism and The Right To Just Be with Dr. Eric Rubenstein
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Today we're joined again by Dr. Eric Rubenstein, an Assistant Professor of Epidemiology at Boston University School of Public Health. Eric is a researcher, a volunteer for the Special Olympics and a lifelong advocate of individuals with Down syndrome. This conversation is a round table discussion of change and evolution, progress and insights that …
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149. Down Syndrome and Alzheimer’s Research with Dr. Tom Mahan
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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. ABC-DS…
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148. RODS Heroes - Our Interview with Brady Murray
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This week we visit with Brady Murray of RODS Heroes, an organization meant to inspire families to answer the call to adopt children born with Down syndrome and other special abilities. Brady and his wife Andrea have seven children and it was their adopted son Cooper who brought our attention to the Murray’s advocacy though his appearances throwing …
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147. T21 Coffee - Giving Back to the Down Syndrome Community - Johan Lindborg
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In this episode, we speak with Johan Lindborg, founder of t21 Coffee. We had a beautiful conversation discussing 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 the Down syndrome diagnosis. It is an open and honest discussion that touches on fears to which any par…
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146. Down Syndrome Diagnosis Network (DSDN) with Ben Hughes
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Today we are joined by Ben Hughs to discuss the Down Syndrome Diagnosis Network (DSDN) and how it empowers new parents with online supports, information, and resources. We also talk about the in person “Rockin’ Retreats” that offer our community the connection and respite necessary, but not always utilized, on the journey for every parent and careg…
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145. A Grassroots Movement to Change the Narrative: A Conversation with Ted Green
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Ted Green is a documentarian whose latest film, ‘The Best We’ve Got: The Carl Erskine Story’, will be airing on PBS SoCal July 4th. Ted’s film is an in-depth look at Carl Erskine, a Dodgers pitcher whose son Jimmie was born with Down syndrome 63 years ago, a time in our country’s history when segregation plagued humanity. Carl and Betty, when faced…
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144. Non-Speaking Is Not Non-Communicating - Vaish and Sid Sarathy
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Today we are joined by Vaish and Sid Sarathy. Dr. Vaish Sarathy 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…
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143. Letting Go: A Conversation with Karen Maezen Miller
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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. Karen Maezen Miller Website: https://karenmaezenmiller.com Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_by…
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142. Learning From Our Mistakes: Deconstructing an IEP with Julie Picot
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In this episode, Julie Picot shares the experience of her latest series of IEP’s meant to usher her daughter Elyse into the Los Angeles Public School system. LAUSD Complaint Response Unit Website: https://achieve.lausd.net/Page/3581 Email: EquityCompliance@lausd.net Phone: (213) 241-7682 TTY: (213) 241-2511 Directions To File A Due Process (PDF): h…
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141. Julie and Aaron Picot: The First 5 Years of Their Journey with Down Syndrome
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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. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/28/141-julie-and-aaron-picot/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our …
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140. Keeping Up with Bertie - An Update with Melissa Kynoch
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In this episode we reconnect with Melissa Kynoch as her son Bertie begins primary school in Birmingham, England. You may remember that Melissa and Bertie were featured on the popular BBC Documentary Series ‘Life and Birth’. Among many things, we discuss the impact inclusion has made in Bertie’s life and the family's journey. Wouldn’t Change A Thing…
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139. Looking Back and Seeing the Effects of a Non Inclusive Environment - Indira Cruz
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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. Episode …
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138. ’Yes. No. Maybe.’ - Our Entry In The 2023 Easterseals Disability Film Challenge
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This episode marks the beginning of the Easterseals Disability Film Challenge’s Awareness Campaign. It’s our 9th film and it’s taken nine years to realize the Awareness Campaign strives to tell our stories to as many people as possible and by doing that, changing the path and narrative of individuals with disabilities. Our film, 'Yes. No. Maybe.' i…
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137. Citizens of the Wold Charter Schools: Christina Aries and Maureen Lamorena-Tatsui
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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…
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136. World Down Syndrome Day with Dr. Eric Rubenstein and his Co-Researcher Team
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Happy World Down Syndrome Day 2023! In celebration of our community, we are sharing a discussion we had this month with Dr. Eric Rubenstein and his co-researcher team. Dr. Eric is an Assistant Professor in the Department of Epidemiology at Boston University and his research team is comprised of six adults with Down syndrome who engage the research …
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135. Revisiting with Children’s Hospital Los Angeles Pediatrician Dr. Mona Patel Gera
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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 synd…
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134. Your Dentistry Questions Answered - Dr. Jill Lasky
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Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. We also discuss methods and tools for parents who want to support their children in making good dental health habits. Lasky Pediatric Dental Group: https://www.laskypediatricdental.com Episode Transcr…
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133. Liam Turns 13: Let The Teenage Years Begin
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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. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/18/1…
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132. Black History Month: Revisiting Our Interview with Willie Dawkins
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For Black History Month we revisit a phenomenal episode we had with Willie Dawkins. We honor his story and his parents who gave him the 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. Episode Transcript:…
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131. The Things We Learn: The Evolution of An Advocate
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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. Episode Transcript: https://ifweknewthen701833686.wordpress.…
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130. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 2
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This is the second half of a two part interview with casting director Michael Sanford about the work being done to make media more inclusive and diverse. We first met Michael when he cast our son, Liam, in the Lena Dunham movie SHARP STICK. Michael had seen Liam in a film made for the Disability Film Challenge where people with disabilities have a …
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129. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 1
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This is a two part interview with Hollywood casting director Michael Sanford about 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. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/22/129-michael…
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128. The Next Generation of Advocacy
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In this episode we discuss the hope we have for the future and the positive changes we see in the next generation of Down syndrome advocates. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/16/128-the-next-generation-of-advocacy/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifwe…
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127. Revisiting A Loving Kindness Meditation with Paul Denniston
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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 stru…
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