Officially an Adult!

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Eighteen years ago Josiah joined our family; 9 lbs 6 ounces of wonder and adventure wrapped up in one precious package.  From that very first day, his life has been one challenge after another with a seemingly endless array of hurdles populating his path.

He’s faced more obstacles in his 18 years than I have in nearly 60.  Yet, he’s one of the happiest people I know, waking most mornings bouncy and smiley and loud.  For a non-verbal guy, he is definitely LOUD.

Don’t get me wrong, there are many moments when Josiah is not a happy camper, like last night for example when he refused to get ready for bed.  I was insistent he needed to put on pajama bottoms.  He was insistent he would not. Read more…

Helmet Head for Life?

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In November, it will be exactly 2 years Josiah has been wearing a helmet for self-protection. TWO YEARS!

We were given a padded helmet at Texas Children’s Hospital September, 2017 and assured Josiah’s raging outbursts were not a result of constipation but most likely related to a teenager with Autism who needs additional psychiatric medication.

At the time I shuddered to imagine my son in such distress he needed protection from himself.  I couldn’t envision a life in which he would need a helmet for difficult moments.

Little did I realize then, Josiah would need to wear it most all the time, not just during difficult moments.  Little did I realize then, the helmet they provided at the hospital wouldn’t suffice.  Josiah would need something sturdier.  He would need something to cover his ears.  He would need something to shield his face and his eyes.  Little did I realize then, Josiah would be wearing a helmet for a very long time.

He even sleeps in it.

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PHEW!!

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It’s been a rough and difficult summer.  For reasons still unknown, though I have very strong suspicions, Josiah spent much of these past few months screaming.  Screaming may not be the best adjective but ‘crying’ just doesn’t seem to adequately describe the painful noises we all became accustomed to most every day.

He was in the hospital 3 times and sent home 3 times with no answers, no great insight, no helpful protocol to alleviate whatever it was causing him to shriek.  I truly believe he was such a difficult patient it was easier to tell us, “Take him home where he will be more comfortable and see if that helps.”

It didn’t.  I knew it wouldn’t.

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It’s Not About Me

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I started this blog 8 years ago, encouraged by a friend to share our journey.  I was hesitant at first.  Life at our house isn’t pretty.  It’s often chaotic, confusing and challenging.  It’s loud and smelly and all consuming.

Why share that with the world?

Once I started writing, I couldn’t stop.  Writing it all down as it unfolded became my way of escape.  If I wrote about it, I could release it.  Capturing all the heartache and struggle; embracing it for what it is, then letting it go became my therapy.

It’s taken me all these years to realize however, NONE of this is about me!

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GLOW MUCH FUN!

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Josiah has had two real birthday parties his entire life! At age 5 we invited immediate family and some close friends to celebrate. I don’t remember much about the party but I remember the cards we sent afterward with a photo of Josiah and a note that said, Thank You for coming to my party. I had a Ball!

Many years later, an indoor trampoline park opened a couple of miles from our home. Josiah spent one third of his life jumping, so we knew this would be the perfect party for our bouncy guy on his 13th Birthday. Read more…