If We Knew Then - Down Syndrome Podcast
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.
Episodes
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 us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWe...
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.
Head Lab: https://sites.mind.uci.edu/headlab/
ABC-DS study - https://www.nia.nih.gov...
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 and the last surviving member of the “Boys of Summer” Brooklyn teams of the 1950’s. T...
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.jotform.com/DSDN/2024-rockin-dad-retreat
Mom's retreat registration page: https://form.jotf...
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 Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to se...
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.
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-right-supports-without-shame-with-julie-picot/2/
Please follow us on Twitter @ifweknewthe...
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 Karen Gravelle
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 answer.
Charlotte & Riley Forever FB Page: https://www.facebook.com/autismintune
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 Miller: https://karenmaezenmiller.com
Maezen’s Book on Amazon: https://www.amazon.com...
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 line on our Facebook page @ifweknewthenPOD o...
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.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/...
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 shirt: transalpino.co.uk
Twitter: https://twitter.com/liamstarkey84
Instagram: https...
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
NOTES FROM DR. SKOTKO:
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 disabilities.
Website: www.bestbuddies.org
Champion of the Year: www.bestbuddiescha...
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 awesomeness.
Ruby’s Rainbow: www.rubysrainbow.org
WDSD Pledge: www321pledge.org
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 the world what individuals with Down syndrome are truly capable of achieving as stud...
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 Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/02/155-using-your-iep-to-...
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 follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifw...
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 s...
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