If We Knew Then - Down Syndrome Podcast

If We Knew Then - Down Syndrome Podcast

We are Stephen and Lori Saux and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. 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 honest and useful conversations about supports, therapies, education and society as it pertains to Down Syndrome advocacy and parenting. WEBSITE: https://ifweknewthen.com

Episodes

July 29, 2021 57 min

In this week’s episode we are joined by Danielle McKinney and Liv Meriano from the Down Syndrome Resource Foundation to talk about educational tools and strategies parents can use at home and implement in their child’s school IEP.

Foundation Website: www.DSRF.org

Baskets of Love: https://www.basketsofloveds.com/

Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/

DS Education International education...

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In this week’s episode Lori and Stephen visit with Jake Pratt, who with a little support, advocacy and inclusion is living his dreams and changing the narrative.

Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/22/63-just-one-of-the-guys-our-interview-with-jake-pratt/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Faceboo...

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In this week’s episode Lori and Stephen discuss the sometimes difficult action of letting Summer just be Summer.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/01/62-summer-advocacy/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 send us an email with questions and comments. You can jo...

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In this week’s episode we speak to Lauren Costabile, the founder of Hearts of Joy International, an organization that provides life-saving heart surgery for individuals with Down syndrome all around the world. 

Website: www.heartsofjoyinternational.com

Amazon Wishlist: https://www.amazon.com/hz/wishlist/ls/1C1P8TA1C8NBU/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist 

Episode Transcript: https://ifweknewthe...

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Today we interview Máire, Heidi and Liz about their ‘Downright Discrimination’ legal campaign which fights to change the law of the land and create equality for people with disabilities. Presently, in the U.K., it is illegal to abort a fetus after 24 weeks  unless it has Down's syndrome. A baby with Down syndrome can be aborted up to birth. We examine the effect this  inequality has on our community by creating separation and d...

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Today we have a ‘Community Conversation’ with advocate Mary Cole discussing her inspiring experience with inclusion.  Mary lives in Cambridge, England and has a 14 year old son with Down syndrome named Ben.

Ben’s Nursery: https://www.colourboxmontessori.co.uk/

Online Session On Puberty: https://www.downs-syndrome.org.uk/our-work/services-projects/training/

Email 'Wouldn't Change A Thing' at WCATbook@gmail.com for...

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In this week’s episode Dr. Brian Skotko shares the most up to date information surrounding the effects of COVID-19 on individuals with Down syndrome. We discuss the importance, safety and science of the vaccine along with tools to help with the process. As we enter back into the world, post-pandemic, the importance of inclusion in society continues along with so much more.

Down Syndrome Clinic to You: www.dsc2u.org

T21 Research S...

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In this week’s episode we revisit one of our earlier conversations. We had the honor of talking to Chris Nikic and his parents, Nik and Patty last summer. In November Chris became the first person with Down syndrome to complete an IRONMAN. We discuss their 1% philosophy and how people with Down Syndrome can do more than ever expected if given the right tools and time.

Chris's Website: https://chrisnikic.com

Episode Transcript...

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This week we talk to Julia Toronczak about her experiences and the lessons she’s learned by growing up with her twin brother Michael, who has Down syndrome. We focus on inclusion and equity in our community and beyond.

Beyond The Waves Blog: https://www.beyondthewavesblog.com

Beyond The Waves Podcast: https://www.beyondthewavesblog.com/podcast

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/20/56-my-twin-...

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Executive Director of ‘Bridgerton’, Julia Anne Robinson, joins us to discuss a film she directed in 2007 called ‘Coming Down The Mountain’ and starring Tommy Jessop and Nicholas Hoult. We breakdown this film that changed our lives and told some truths about the journey that rarely get talked about.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/12/55-coming-down-the-mountain-part-2-why-this-movie-is-so-imp...

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Happy Mother’s Day! Sunday, May 9, 2021 is Mother’s Day for our Canadian, Australian & American listeners.  Mothering Sunday in the UK was back in March and in Mexico, Mothers are celebrated every year on May 10th. Wherever you are, whomever you are and however you celebrate… this episode is for all the Mothers of the world.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/06/54-mother-noun-an-ultimate-e...

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In this episode, Physical Therapist, Natalie Spiteri shares her personal journey through infertility, the impact of a diagnosis of Down syndrome and the yearning for the life she imagined beyond what she was told.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/29/53-discussing-infertility-and-a-down-syndrome-diagnosis-with-natalie-spiteri/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us...

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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.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/22/52-a-conversation-with-megyn-price-celebrating-uncle-bill/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Fac...

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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.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/16/51-eleven-years-with-liam-celebrating-another-trip-around-the-sun/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our websit...

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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.

Her books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/08/50-acknowle...

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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

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/25/49-discussing-health-and...

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March 21st is World Down Syndrome Day and we discuss our personal journey to find our celebration and what it means to us.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/16/48-world-down-syndrome-day-the-path-to-finding-our-celebration/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...

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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 

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/11/47-what-do-we-do-when-fac...

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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 

Frostig School: https://frostigschool.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/03/46-coming-down-the-m...

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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 o...

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