Dancing in the Rain

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One of my all time favorite quotes, the one that helped me through countless days like the one I’m about to describe for you sits in a prominent place in our home.  I put it there for a reason.  At least 500 times a day I walk past it and have the constant reminder that I am not in control over much of what happens in this life.  However, I am able to choose how I respond. And that is only by the grace of God.  I most certainly am not able to do any of it in my own power!

Around here we have lots of stormy weather.  I think it all started when Josiah was just about 5 years old.  Seemingly out of the blue, our sweet little guy decided to crank up the noise.  He went from cuddly, loving and curious to becoming explosive almost overnight. Looking back though, those were just heavy rain showers.  As he’s gotten older we’ve endured gale force winds and frequent flash flooding much more often than I’d care to admit.

There were no warnings, no Space City Weather guys preparing us for the impending doom.  It was just us, fumbling our way through with a house full of kids, trying to figure it all out.  Most of the time it was not pretty. Read more…

Today’s Episode – WHAT Were We Thinking?

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I enthusiastically mentioned to Rick this morning that a visit to the Houston Museum of Fine Arts might be a great thing to do with Josiah today.  Since Josiah hasn’t been attending many activities with our local Down syndrome group or with any of the other amazing disability groups in our area I suggested we make a plan to do a new and exciting adventure each weekend.  Gradually exposing Josiah to different environments will open up his world a bit more and get him (and us) out of the house.

He recently spent a week on vacation in San Antonio with the Josiah Whisperer.  Just the two of them.  They explored every mission, restaurant and art show within a 20 mile radius, not to mention a trip to the Japanese Tea Garden and a hike (up hill at times) through the Natural Bridge Caverns.

The Whisperer blew up our phone with pictures of Josiah staring intently at art pieces and smiling at sculptures, meandering through art installations as if an art connoisseur.

So, surely a trip to our local Art Museum would be right up his ally.   I was actually quite proud of myself for even thinking of such a great idea.  Read more…

Oh, the Joys of Anesthesia

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Josiah has had quite a few adventures with anesthesia this year.  He had his 3rd surgical procedure of 2024 one week ago.  He doesn’t typically have surgical procedures.  It just so happens they were necessary this year.

Each time Josiah was blessed to have the world’s most amazing anesthesiologist by his side.  This man called our home prior to all 3 procedures to talk to us about Josiah’s needs.  He gathered quite a bit of information to formulate a plan so Josiah would be as calm and as comfortable as possible.  It made a huge difference.

Read more…

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!

Read more…

ETB 58: Exploring Guardianship and Supported Decision-Making

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ETB 58: What if the future of your loved one with a disability could be bright, secure, and filled with choices and alternatives? Envision a world where guardianship isn’t the only path, where supported decision-making reigns supreme, and personal rights are preserved. This episode offers a detailed dissection of guardianship and its alternatives, shedding light on the game-changing Right to Make Choices supported-decision making toolkit – a Texas-based initiative.

We take you on a journey through the pivotal Jenny Hatch case and the subsequent reform of the Texas guardianship system in 2015, highlighting the importance of considering alternatives to guardianship such as medical power of attorney, durable power of attorney, and more. Hear the ins and outs of these alternatives, and how they can shape a brighter future for your loved ones. So, tune in, soak up the knowledge, and empower yourself to make informed decisions that truly make a difference.

Supported Decision-Making Toolkit:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf

Supported Decision Making Agreement – see page 89-90 in the link below:
https://disabilityrightstx.org/wp-content/uploads/2018/08/The-Right-to-Make-Choices-SDM-toolkit-jan-2018-1.pdf

Guardianship in Texas
https://www.hhs.texas.gov/regulations/legal-information/guardianship

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