This week we are joined by 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.
This year Liam turned 11 and in this episode we reflect where we started, what we’ve learned and where we are. Let’s celebrate… always celebrate.
Another beautiful conversation with Zen Buddhist Priest Karen Maezen Miller. We all have fears. What if we could see what is at the root of these fears, acknowledge and deconstruct them and then continue forward free from those fears.
An enlightening conversation with Dr. Mona Patel Gera to answer the questions parents of children with Down syndrome often have.
Health Supervision Guidelines: https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Documents/Health_Care_Information_for_Families_of_Children_with_Down_Syndrome.pdf
As parents, we all find ourselves dealing with confusing emotions and challenges from time to time. In this conversation, Zen Buddhist Priest Karen Maezen Miller, gives us some guidance to help us deal with the negative.
Her books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1
Our conversation with Executive Producer and Director of ‘Bridgerton’, Julie Anne Robinson about the film ‘Coming Down The Mountain’ and the importance of inclusion in media.
‘Coming Down The Mountain’ on Prime Video: https://www.amazon.com/gp/video/detail/B082P67X6D/ref=atv_dp_share_cu_r
Page 2: Episode Transcript
Speech Pathologist, Kerri Wake, joins us to talk about communication, supportive tools parents can provide their children and the pathways to receiving speech therapy in the school setting.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
The Hanen Centre: http://www.hanen.org/Home.aspx
Early Milestone List: https://speechhearing.columbian.gwu.edu/sites/g/files/zaxdzs1996/f/downloads/Milestonesguide.pdf
Article on the benefits of AAC (speech generating devices): https://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1088&context=specedfacpub
In this episode Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself.
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
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
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
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: www.mcrorypediatrics.com
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.
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.
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.
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 improve their delivery of a Down syndrome diagnosis.
DSC2U: https://dsc2u.org
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.
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.
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.
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
Nic Novicki joins us again to talk about the Easterseals Disability Film Challenge and letting your voice be heard through the arts.
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.
