If we had to climb 4 flights of stairs to make it to our destination in Texas Children’s Hospital to have a sleep study consult, so be it.  I preferred the elevator but it was clear Josiah did not.

He wasn’t too crazy about the stairs either, but with some positive reinforcement (his favorite edibles), he was more compliant. Every few steps, I’d pop a tiny piece of something yummy in his mouth and we’d keep climbing.

I was relieved to be alone in the stairwell, away from the crowd of people.  At least here, Josiah was calm. At least here, I felt I had regained some semblance of control.

Whereas a few minutes before I was defeated, overwhelmed and frustrated, now I was feeling empowered. We had made it through the harrowing elevator escapade and now were on the move again. This wouldn’t be so bad.

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In March, I was told Josiah needed a sleep study.

The Doctor who suggested it explained 50-75% of individuals with Down syndrome have sleep apnea. Based on Josiah’s poor sleep habits, his ability to fall asleep during the day in very strange positions and the immediacy with which he wakes after being in a deep sleep, it was recommended he have it done.

As the Doctor was talking,  I put my fingers in my ears and hummed. How would we ever get a sleep study done on this kid?

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Finding activities Josiah will engage with and focus on for longer than 30 seconds is a challenge. Over the years we’ve tried them all it seems.

He likes balloons.  He likes to jump on his trampoline.  He likes to ride in the van.  He likes beads and string toys. That pretty much covers it.

If you offer edibles while working through a new activity with him, he’s likely to show a bit of interest.  But, once the edibles are gone, so is Josiah.

Why then would I think to try baking with the boy? Read more…

It’s been an interesting year so far. In the past few months I’ve had 4 people ask me if we have ever considered placing Josiah in a Group Home.

As in, it’s obvious you guys have done your best.  It hasn’t been easy.  Josiah’s been quite a challenge.  You and Rick are getting older.  Josiah’s getting bigger and stronger. How much longer can you possibly keep this up?

As if placing Josiah in a Group Home is a genius idea that would somehow miraculously resolve everything. Just remove him from your home. Problem solved.

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Now that Josiah has a secure, enclosed bed to keep him safe and sound at night, we are all getting adequate sleep around here.  I really think it’s only a matter of time before Josiah figures out how easy it would be to escape his bed.  Quite honestly, I’m surprised he hasn’t figured it out already.

We truly thought his ‘netted’ bed would last only a week or so. As with most things, Josiah discovers ways around or through them pretty quickly.  I envisioned torn fabric, ripped to shreds by a boy lying wide awake at night with nothing better to do than to tear his way out.  Since we have furniture movers underneath the bed to glide it easily across the carpet, I imagined Josiah would prop his feet on the wall, pushing the bed away to gain easy access out.

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