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In this episode I talk with Jacquelyn Stephanou about her 20 year old son Will who has a dual diagnosis of Down syndrome and Autism.  Will’s diagnosis brought challenges, especially regarding communication.   By constantly reading, researching and connecting with others, Jacquelyn learned about Spelling to Communicate, a technique that teaches individuals with Autism & Apraxia the purposeful motor skills needed to communicate by spelling.   Students are taught to point accurately to letters on a letter board to spell out words and eventually create sentences.   For the first time in many years Will is now able to express his thoughts and feelings and even share his dreams for the future!  Jacquelyn believes in presuming competence and continually pushing boundaries to raise the bar.  The potential is there.  You just have to figure out how to tap into it to give your child every opportunity for success.

Books:
Prizant, Barry: Uniquely Human: A Different Way of Seeing Autism. NY: Simon and Schuster, 2016
https://www.amazon.com/Uniquely-Human-Different-Seeing-Autism/dp/1476776245

Podcasts:
Uniquely Human, Barry Prizant and Dave Finch, cohosts
https://podcasts.apple.com/us/podcast/uniquely-human-the-podcast/id1532460901
https://uniquelyhuman.com/

The Heumann Perspective, with Judy Heumann
https://podcasts.apple.com/us/podcast/the-heumann-perspective/id1558688277

Movies:
Crip Camp
https://youtu.be/OFS8SpwioZ4

Spelling2Communicate:
International Association for Spelling to Communicate (I-asc).
The best place to learn about the basics of S2C and to find practitioners around the globe.
Spelling to Communicate | S2C | I-ASC
https://i-asc.org/

Rapid Promoting Method/HALO
https://www.halo-soma.org/what-is-rpm

Communication Choice as a Human Right:
Communication First
https://communicationfirst.orghttps://i-asc.org

Books By and About Spellers:
Handley, JB, Handley, J. Underestimated: An Autism Miracle, 2020.
https://www.amazon.com/Underestimated-Autism-Miracle-Childrens-Defense/dp/1510766367

Tino, Gregory. The Autistic Mind Finally Speaks: Letterboard Thoughts, 2020.
https://www.amazon.com/Autistic-Mind-Finally-Speaks-Letterboard/dp/B08LJN18BY

Pena EV, Editor. Leaders Around Me: Autobiographies of Autistics Who Type, Point, & Spell to Communicate, 2019.
https://www.amazon.com/Leaders-Around-Autobiographies-Autistics-Communicate/dp/1791505953

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/https://uniquelyhuman.com/

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In this episode I talk with Heather Burdeaux, case manager and multi-talented, super busy mom of 3 about navigating life with 2 children who have special needs.  Her oldest, Arabella has Down syndrome and her youngest, Darin, has a dual diagnosis of Down syndrome and Autism.  A  few years ago Darin’s behavior began to suddenly shift.  Heather took courageous steps to help her son through a very difficult period.  She believes in expectation management which ensures every family member is able to fully enjoy vacations and holiday gatherings as defined by each person’s individual needs.  She also encourages making time for your own friendships.  And, as an entrepreneur herself, Heather already has some great ideas about what the future might hold for Bella and Darin.

Connect with Heather:
Blog about raising her kids: http://shantijoy.wordpress.com
Medicaid Resources Website:  http://texasmedicaidwaivers.com

Connect with Arabella:
Arabella’s Wonderful Life YouTube Channel:  http://tinyurl.com/arabella911
Arabella’s Wonderful Life Shop: http://tinyurl.com/arabella911shop

Connect with GHFEDS ~ Greater Houston Families Exploring Down Syndrome
Website:  http://ghfeds.org/

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

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In this episode I talk with Jennifer Vincent,  part time nurse and busy, full time mother of 3, who shares about her youngest daughter,  Alexandra.   Born with Down syndrome and a heart defect,  Alexandra was diagnosed with diabetes at age 9.   She is also a thrill loving, sensory seeker who water skis, zip lines and indoor sky dives.  Alexandra has a very full life with lots of opportunity and adventure, including  going to Nationals in Chicago to represent Texas in the Miss Amazing Teen Pageant.  Jennifer believes having a disability should not stop your child from doing things.  You just need to provide the necessary accommodations and give them every opportunity to try new things.

Connect with GHFEDS ~ Greater Houston Families Exploring Down Syndrome
Website:  http://ghfeds.org/

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME

Drumroll Please!

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You guys are awesome!  In a very short time, 54 entries from 28 people came POURING in.  Thank you for your thoughtfulness and creativity in helping Josiah name his budding new business.   It was extremely difficult to narrow down the list but Josiah’s amazing caregivers were up to the challenge.  I may have sent a few too many text messages to them with lists of names that were continually needing to be tweaked.  Everyone liked different ones so identifying the 3 favorites for Josiah to choose from was a bit of a challenge.

When the finalists were decided, the whisper guided Josiah through the selection process.  It was just after an evening shower, when Josiah usually prefers to head straight to his room.  He had just 4 hours of sleep the night before and walked a few miles that afternoon. Though he was tired, he complied.  Josiah was called over to the counter where he promptly sat down on a stool.   Three index cards were placed in front of him and the names read to him in order.

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Living in Mama Odie Minutes

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Three years ago Josiah had no interest in his ipad.  We thought it would change his world, give him a voice, allow him to communicate with us. Instead, he tossed it aside.

He has never been the kind of kid to sit for hours on end engrossed in passive entertainment. He ignores T.V., preferring to turn it off rather than attend to it.  He rarely pays attention to the large screen at movie theaters (until the credits roll) and only stays in his seat if he has popcorn.

One of Josiah’s initial objectives was to endure the ipad for 5 seconds.  It required persistence and consistency to attempt such a lofty goal.  Five seconds felt like an eternity.

We rarely left him alone with his ipad for fear he would break it.

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