Uncategorized – If We Knew Then – Down Syndrome Podcast for Advocacy and Parenting

44. Looking Back At A Decade: Liam Turns 10

In this episode Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself. Page 2: Episode Transcript

43. Occupational Therapy: Erin Stanford of McRory Pediatrics – Part 2

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. The McRory Pediatrics Website: https://www.mcrorypediatrics.com Page 2: Episode Transcript

42. Occupational Therapy: Erin Stanford of McRory Pediatrics – Part 1

41. Behavior: A Conversation with Kyle Davis of McRory Pediatrics

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. The McRory Pediatrics Website: https://www.mcrorypediatrics.com Page 2: Episode Transcript

40. Discussing Supports with Nikki McRory of McRory Pediatrics

Nikki McRory is the founder of McRory Pediatrics and in this episode she gives us an insightful look at the different therapies that can help support your child in reaching their potential. The McRory Pediatrics Website: http://www.mcrorypediatrics.com Page 2: Episode Transcript

39. Our Interview with Steven Gustafson of 10,000 Maniacs

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. Page 2: Episode Transcript

38. Moving Into A New Year One Moment At A Time

In this episode we discuss facing some of the difficulties of 2020 and how to move onto a fresh new year in a positive way. Page 2: Episode Transcript

37. Our Community’s Response To Emmerdale’s Negative Storyline About Down Syndrome with Cristina Bowman

In this episode we talk with Cristina Bowman of Diff-Ability about the British soap opera Emmerdale and it’s recent storyline which depicts a couple having an abortion because their baby has Down syndrome. Page 2: Episode Transcript

36. Giving Everyone Access to a Down Syndrome Specialty Clinic with DSC2U – Dr. Brian Skotko

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 improveContinue reading “36. Giving Everyone Access to a Down Syndrome Specialty Clinic with DSC2U – Dr. Brian Skotko”

35. Building a Realistic Approach to a Healthy Dental Routine – Dr. Jill Lasky

In our second interview with Dr. Jill we discuss the methods and tools for parents who want to support their children in making good dental health habits. Page 2: Episode Transcript

34. How To Use The Summertime To Your Advantage

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. Page 2: Episode Transcript

33. Our Congratulations Message to New Parents

We originally created this podcast to support parents of children with Down syndrome and this episode is directed specifically to new parents who have just recently received their child’s diagnosis. Our message is of hope and possibility in a world which often offers very little. Page 2: Episode Transcript

32. Changing Our World – Chris Nikic’s 1% Philosophy

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  Page 2: Episode Transcript

31. Using The Arts To Tell Your Story – A Conversation with Nic Novicki

Nic Novicki joins us again to talk about the Easterseals Disability Film Challenge and letting your voice be heard through the arts. Page 2: Episode Transcript

30. Down Syndrome Awareness Month: Working Together To Change Perceptions

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. Page 2: Episode Transcript

29. Insights Into Our First COVID-19 IEP Session

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. Page 2: Episode Transcript

28. A Story of Inclusion with Eleanor Baggaley- Author of ‘Ava The Mermaid’

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 DownContinue reading “28. A Story of Inclusion with Eleanor Baggaley- Author of ‘Ava The Mermaid’”

27. Our IEP Process: Some Things We Have Learned

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. Page 2:Continue reading “27. Our IEP Process: Some Things We Have Learned”

26. PALS Programs – A Deeper Conversation About Down Syndrome

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 alsoContinue reading “26. PALS Programs – A Deeper Conversation About Down Syndrome”

25. A Right to Celebrate – When the Medical Profession Steals the Joy of New Parents – Rachel Mewes

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  Page 2: Episode Transcript

24. The Importance of Disability Inclusion in Film – Nic Novicki

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  Page 2: Episode Transcript

23. Raised by a Father with Down Syndrome – Our Interview with Sader Issa

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? Page 2: Episode Transcript

22. A Meditation Gift from Paul Denniston – Yoga Nidra Guided Meditation

Paul Denniston has gifted us with a Yoga Nidra Guided Meditation. Enjoy. Paul’s Website: https://griefyoga.com Page 2: Episode Transcript

21. A Conversation About Healing and Self Care with Paul Denniston

Paul Denniston discusses how we can all heal through meditation and his Grief Yoga. Paul’s Website: https://griefyoga.com Page 2: Episode Transcript

20. A New School Year – COVID19, IEPs and Supports – Georgianna Junco-Kelman

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  Page 2: Episode Transcript

19. PALS Programs – Congratulations Project

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  PageContinue reading “19. PALS Programs – Congratulations Project”

18. Project Understood – Part 2 – Two Perspectives of Down Syndrome – Ed Casagrande and Matt MacNeil

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/ Page 2: Episode Transcript

17. Creating a Positive Dental Health Relationship – Dr. Jill Lasky

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. Page 2: Episode Transcript

16. Pushing The Limits – Chris Nikic’s Road To IRONMAN

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.Continue reading “16. Pushing The Limits – Chris Nikic’s Road To IRONMAN”

15. Project Understood – The Canadian Down Syndrome Society

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. Page 2: Episode Transcript

14. An Honest Conversation with Julie Picot

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. Page 2: Episode Transcript

13. Early Intervention: At Home Tools and Supports – Caroline Bencze-Fernandez

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. Page 2: Episode Transcript