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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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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We Need Your Creativity!

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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!

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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.
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