Show Notes and Transcripts of the IF WE KNEW THEN Podcast.
In honor of Down Syndrome Awareness Month we discuss our part, as a community, in changing the perceptions of Down syndrome through our thoughts and words. We also look back on some lessons we have learned from past guests.
We just had our first Zoom IEP session since the pandemic started and we have found several new things that parents should be aware of. We also further discuss ways to prepare for these meetings and touch on questions every parent should ask their IEP team.
Our conversation with author, wife, mother of three and Down syndrome advocate, Eleanor Baggaley. We discuss inclusion and her children’s books, particularly ‘Eva The Mermaid’. Eleanor also shares about her work with the organization Positive About Down Syndrome and some of her future plans of advocacy in the community.
Eleanor’s Website: https://www.eleanorbaggaley.com/shop
Positive About Down Syndrome: https://positiveaboutdownsyndrome.co.uk
IEP’s can be very overwhelming especially when you feel like you don’t have all the information that you want to have. In this episode we share some of the things we have learned to be helpful during this sometimes stressful process and ways to advocate for your child while still keeping your peace.
Our second interview with members of the PALS Programs. We talk about how the PALS Programs is planning for future camps and some of the more personal experiences the founders of the organization have with Down syndrome. Joining us is Executive Director, Jenni Newbury Ross and her mother Robyn and brother Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.
PALS Program: https://www.palsprograms.org
Congratulations Project: https://www.congratulationsproject.org
Our second interview with Rachel Mewes. Rachel is a contributing editor to Making Chromosomes Count, the Down syndrome community newspaper. She opens up on her not so uncommon birth story and the prejudices she found in the medical profession.
Making Chromosomes Count: http://makingchromosomescount.co.uk
Comedian, actor, producer and disability advocate Nic Novicki joins us to talk about the Easterseals Disability Film Challenge and the importance of disability inclusion in film.
Film Challenge Website: https://disabilityfilmchallenge.com
Our 2020 EDFC entry: https://youtu.be/WiX-rt51szo
All the challenge’s films on YouTube: https://www.youtube.com/playlist?list=PLOhZ4i5Tnk3iq44Tzn03rBMOcr0bqFrnV
Our enlightening and inspiring interview with Sader Issa. As parents we are always told what our children will never do. What if those limits were not part of the conversation?
Paul Denniston has gifted us with a Yoga Nidra Guided Meditation. Enjoy.
Paul’s Website: https://griefyoga.com
Paul Denniston discusses how we can all heal through meditation and his Grief Yoga.
Paul’s Website: https://griefyoga.com
Another informative talk with attorney Georgianna Junco-Kelman. What do parents need to know heading into a new school year amidst COVID-19?
Georgianna’s Website: http://www.losangelesspecialedattorney.com
CA Special Education Guidelines for COVID-19: https://www.cde.ca.gov/ls/he/hn/specialedcovid19guidance.asp
Our interview with members of the PALS Program. We talk about the organization and specifically their Congratulations Project. Joining us is Co-founder and Executive Director, Jenni Newbury Ross and her mother and brother, Robyn and Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.
Congratulations Project: https://www.congratulationsproject.org
Our second interview with Ed Casagrande and Matt MacNeil 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
CDSS “Down Syndrome Answers” Initiative: https://cdss.ca/down-syndrome-answers/
Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community.
Interview with Chris Nikic and his parents, Nik and Patty. Chris is the first person with Down syndrome to complete a half IRONMAN and is training to attempt the full 140.6 mile course in November. We discuss how people with Down Syndrome can do more than ever expected if given the right tools and time.
Our interview with Ed Casagrande and Matt MacNeil 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.
Our second interview with Julie Picot, a mother of a child with Down Syndrome, and some of the challenges she has faced regarding stereotypes and preconceived notions of her child’s disability.
In this second appearance on the podcast, Caroline dives a little deeper about 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.
The Second part of our interview with Melissa Kynoch from the BBC documentary, “Life and Birth”.
Our Interview with Rachel Mewes to discuss her interactions with Twitter and their reluctance to combat hate speech toward people with Down Syndrome.
Our interview with Melissa Kynoch to discuss her experiences as a mother and her involvement with the BBC1 documentary Life and Birth.
Interview with our daughter Sophia to get her take on growing up with her brother, Liam.
Interview with Child Development Specialist, Caroline Bencze-Fernandez. She explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.
Interview with Julie Picot discussing her birth story, some of the misinformation she encountered and how she dealt with the post diagnosis fears.
