Down Syndrome Center Of Western Pennsylvania Podcast

Listen as Dr. Vellody reflects on the history of this podcast, the history of the Down Syndrome Center, and looks towards the future for both!  To learn more about the Down Syndrome Center, you can visit https://www.chp.edu/our-services/down-syndrome.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Speech language pathologist Heather Vukelich joined the podcast today to inform us about TalkTools and techniques to address feeding and speech clarity in people with Down syndrome.     Websites/Resourceswww.talktools.com www.happykidstherapy.com   www.happykidstherapy.com/feeding-class  https://www.instagram.com/happykidstherapy/   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.   If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.   Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Nancy Gianni, Founder and Chief Belief Officer of Gigi's Playhouse, joined the podcast as part of our "Meet The Nationals" series.  Gigi's Playhouse provides free educational, therapeutic-based, and career development programs for individuals with Down syndrome, their families, and the community, through a replicable playhouse model.  Their mission and purpose is to change the way the world views Down syndrome and to send a global message of acceptance for all. For more information on Gigi's Playhouse: https://gigisplayhouse.org Nancy Gianni's book: https://shopgigisplayhouse.org/shop/generationg-a-true-story-of-miracles-hope-and-unconditional-acceptance/    

Rabbi Mordy Rudolph joined the podcast to discuss the Friendship Circle of Pittsburgh.   This amazing organization was established in 2006 with the intention of creating a more inclusive community. It is a community-based program that brings together people of diverse abilities and interests.  Information on the local chapter in Squirrel Hill PA can be found: https://www.fcpgh.org  

Kelli Caughman and Crystal Lotterberry, founders of the Black Down Syndrome Association joined the podcast today to share their stories and how they led to the creation of this fantastic organization.  For more information, go to https://www.blackdownsyndrome.org/. Co Founders Kelli.Caughman@blackdownsyndrome.org  Crystal.Lotterberry@blackdownsyndrome.org  General : info@blackdownsyndrome.org Website: https://urldefense.com/v3/__http://www.blackdownsyndromeassociation.org__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QDzbgGnUw$  Instagram: @blackdownsyndrome Public Facebook Page: https://urldefense.com/v3/__https://www.facebook.com/profile.php?id=100085879436043&mibextid=LQQJ4d__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QBgGl_ZPQ$ Private Online Support Group for Black Families: https://urldefense.com/v3/__https://m.facebook.com/groups/bdsafamily/?ref=share&mibextid=S66gv

Dr. Brian Chicoine and Dr. Hannah Graham from the Adult Down Syndrome Center with Advocate Health Care in Park Ridge, Illinois joined the podcast today to discuss a listener question on menopause in Down syndrome.  While I had these experts on the podcast, we also discussed other aging related topics in Down syndrome. For more information on the Adult Down Syndrome Center, go to: https://www.advocatehealth.com/health-services/adult-down-syndrome-center/. To access the Down Syndrome Resource Library, go to: https://adscresources.advocatehealth.com/ If you are a provider looking to discuss a patient with experts in Down syndrome, consider using Project Echo: https://www.dsmig-usa.org/Project-Echo To view the latest healthcare guidelines for adults with Down syndrome, go to:  https://jamanetwork.com/journals/jama/fullarticle/277190 If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center,

LaTaasha Byrd joined the podcast today to answer listener questions about homeschooling.  Is homeschooling a legitimate option for children with Down syndrome.  If so, what are some important considerations that may be unique in this population? Countdown to K https://countdowntok.com Countdown Academy https://countdown-academy.teachable.com Inclusion is for the Included Book https://countdowntokstore.company.site    

Gary Cimaglia, Special Olympics North America’s Vice President of Sports, joined the podcast today to give a broad overview of the Special Olympics and how you and your loved ones can be involved.  For more information, go to https://www.specialolympics.org.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Down Syndrome Regression Disorder (formerly called Unexplained Regression in Down Syndrome or Down Syndrome Disintegrative Disorder) is a diagnosis that has previously been missed or misdiagnosed in people with Down syndrome.  It is a topic in high interest amongst researchers in the field, including today's podcast guest Dr. Jon Santoro from Children's Hospital of Los Angeles.  Dr. Santoro gave us a review of the topic as well as current research into the diagnosis and treatment of this condition. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Dr. Katie Frank from the Adult Down Syndrome Center in Park Ridge, IL joined the podcast to answer listener questions regarding sound sensitivity, toothbrushing, haircuts, and nail trims.  So many people with Down syndrome have sensory difficulties with these tasks and Dr. Frank helped explain her approach to these situations. For fantastic caregiver resources on these types of topics, go to: https://adscresources.advocatehealth.com/ Some examples of equipment discussed on the podcast: 3 Headed Toothbrush Weighted Vest Automatic Nail Trimmer Hair Clipper   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

The official pandemic status may be gone, but COVID still lingers.  Listen as Dr. Andy Nowalk shares with us the latest updates on COVID, including the upcoming COVID vaccine boosters.

How do we help people with Down syndrome during times of grief and grieving?  Dr. Rose Reif, LCMHC, CRC, BC-TMH and owner of Reif Counseling Services, PLLC joined the podcast today to discuss her perspective. For more information on Dr. Reif, go to https://rosereif.com/about/. For more information on this topic, check out Dr. Reif's book https://www.amazon.com/Helping-Child-syndrome-Understand-Death/dp/B0BXN5TFCC/. Dr. Reif's recommended this resource by Fred Rogers as well https://www.amazon.com/s?k=when+a+pet+dies+by+fred+rogers&crid=2E7G8G1J0JF8M&sprefix=when+a+pet%2Caps%2C96&ref=nb_sb_ss_ts-doa-p_1_10 If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.     

Dr. Stacy Taylor, with Advance Behavior and Analysis, is an expert in behavioral analysis and special interest in patients with Down syndrome, joined the podcast to discuss her approach to behavioral questions that we received from you!  We discussed inappropriate word usage, dumping behaviors, and scripting among other topics.   For more information on Dr. Taylor's practice, including potentially scheduling a visit with the practice, visit http://advancebehavior.com/.   To find a behavioral analyst near you, visit https://www.bacb.com/services/o.php?page=101135.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

As part of our Meet the Nationals series, Sarah Mulligan, Executive Director of Down Syndrome Affiliates in Action joined the podcast to talk about the great work that this organization does with local affiliates all over the country.  For more information on DSAIA, see https://www.dsaia.org.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Ben Wright, co-creator of Bitty and Beau's Coffee along with his wife Amy Wright, joined the podcast today to discuss the motivation behind these amazing coffee shops!  There will be a Bitty and Beau's Coffee Shop opening in Pittsburgh soon so we asked Ben to join us to give us some background on why he is so passionate about these shops (and it's not just the coffee!). If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Dr. Lina Patel from the Sie Center in Denver joined the podcast again today.  Given that facial sensitivites are very common in people with Down syndrome, tolerance to wearing hearing aids, glasses, CPAP masks, etc. can be a challenge.  Dr. Patel addressed a listener question on this topic on today's podcast. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Unhealthy eating patterns are unfortunately common in people with Down syndrome.  On this podcast, dietician Shannon Frizzell joins to discuss a listener question on some engrained eating patterns in their loved one with Down syndrome.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!

Dr. Santamaria rejoins the podcast to address a listener question on throwing behavior.  What's the best approach when your child with Down syndrome has a tendency to throw objects?  And how do you keep everyone else safe? :)  Join us for a conversation on this specific topic as well as  general thoughts on behavior management.  And keep those listener questions coming! If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Dr. Jordan Jones is an Associate Professor of Pediatrics and Pediatric Rheumatologist from Children's Mercy Hospital in Kansas CIty, MO.  Dr. Jones has a special interest in working with children with Down syndrome and has published numerous articles on this topic.  He joined the podcast today to discuss a listener-requested topic on juvenile idiopathic arthritis in Down syndrome.  For more information on Dr. Jones, please visit https://www.childrensmercy.org/profiles/jordan-t-jones/.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.