Who’s Training Who?

It could just be my imagination, but when I first started teaching Kindergarten, it seemed like the ‘challenging’ students were always placed in my classroom.

This was back in the day (am I really old enough to say that) when most of the children were super sweet, excited to be there and for the most part, rather well behaved. There were just 1-2 per year that would test you at every turn.  I seemed to draw them like a magnet.

I remember a mom and her son standing before me 30 minutes early the first day of school. Nervously racing around to make sure everything was ready, I was startled by their early arrival.

“This is Sam (not his real name). You’re going to have your hands full with this one!” was his mother’s greeting to me.  Astounded that anyone would speak that way about their child and most especially IN FRONT OF their child, I smiled reassuringly, then reached down to put my arm on Sam’s shoulder. “It’s going to be a great year!” I said.

“Ha! young thing, you’ll see”, came mom’s response. With that she turned and walked out of the room, leaving her son alone with me.

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The Rest of the Story

TCH stairsIf 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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On Learning to NEVER Go Alone, EVER Again

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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So He Doesn’t Like to Bake

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

My Child is NOT Disposable

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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