Guardianship Should Be the Last Resort—Not the First Conversation

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As parents, we are entrusted with protecting our children. But there comes a point, especially as they approach adulthood, when protection must be balanced with dignity, respect, and a deep belief in who they are capable of becoming.

If you are raising a child with a disability, odds are you have been told, often repeatedly, that guardianship is what you will need when your child turns 18. I heard it so often that I assumed it was simply required. It was presented as a given, not a choice.

What many parents are never told is that guardianship is not just support. It is a legal declaration that an adult is incapacitated. It removes fundamental rights, often permanently, such as the right to vote, to marry, to make medical decisions, to sign contracts, and to decide where or with whom to live. Once those rights are taken away, restoring them is incredibly difficult. Read more…

What 24 Years of Being Josiah’s Mom Has Taught Me

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We’ve walked a long, windy, bumpy road with Josiah since 2002.  I vividly remember not being alarmed when we learned he would have Down syndrome.  I truly felt Josiah would just have a few extra hurdles to jump over.  With four typically developing siblings as built-in role models how hard could it be?

I love a challenge.

But, had I known how overwhelming, turbulent and exhausting life would become I don’t think I would have been so optimistic.

Here are some key takeaways that may help others just beginning this journey:

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Spelling to Communicate

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Spelling to Communicate empowers nonspeakers to overcome communication barriers posed by oral communication by pointing to letters on a board as an alternative means of communication.

Since January of 2023, Josiah has been working on Spelling to Communicate (S2C) with one of his EXTRAORDINARY caregivers.

This angel straight from heaven has devoted herself to daily practice with Josiah and his letter boards.  She has the desire, determination and dedication to work through challenges and situations above and beyond expectation!

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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/