By on

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/

By on

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/

Drumroll Please!

By on

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.

Read more…

We Need Your Creativity!

By on

While that may very well be true, we are powerless to come up with THE name for Josiah’s new business.  After many months creating behind the scenes, this new business venture remains unveiled, all due to lack of a name. 

Josiah and one of his amazing caregivers embarked on this new enterprise about 6 months ago.

The Josiah whisperer shared this business idea with me when Josiah was still in the midst of difficult challenges.  I’m well aware he works miracles with Josiah but from my perspective, this seemed like a stretch, even for him.   We were struggling to get through the days with no painful episodes of aggression/self-injury.   Contemplating a business endeavor at that point was not on my radar.

I should know better than to doubt the whisperer’s wisdom.  He and Josiah have a special connection that defies description.  He speaks and Josiah complies.  Truly remarkable. Read more…

Hallelujah ~ Praise the Lord!

By on

JOSIAH NO LONGER WEARS A HELMET!!!!!

Today is day 7 without that bulky face-masked obstruction hiding his handsome face.  And, all it took was a trip to Florida.

If you know anything about Josiah you know it has been 3 years (how could it possibly be THREE years) that he has been wearing a padded helmet nearly every minute of every day.

He bathed in it, he slept in it, he ate in it.  He lived in that thing.  In fact, he needed several helmets so two could air out while one was on his head.

Over the past year or so there has been some success in removing the helmet for short periods of time. Depending upon who he was with and what he was doing, Josiah was even able to go 4-6 hours more recently without it.
Read more…