Life with Josiah revolves around 3 things: sleep (or the lack thereof) the bathroom and food. Throw in some head banging, a little hair pulling, a bit of bouncing and you get the full picture.

We’ve been dealing with insomnia for so long, I can’t believe it continues to be an issue.  Surely, by now we should have figured out something to keep this boy in bed at night, resting peacefully.

The do-it-yourself staple gunned, netted bed worked initially, but like everything else with Josiah, only for a while. He’s a clever one. Given enough time, Josiah figures out how to outsmart us at every turn. He ripped a hole in one side of the netting which gradually grew larger over time.  He mastered pushing the bed away from the wall and now climbs out with ease. Our homemade enclosed bed no longer encloses our boy.

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These photos were taken this week.

Notice how peacefully Josiah is sleeping in all of them.  Notice these are all taken during the day when he is supposed to be wide awake?

Last night Josiah was up, loud and bouncy 4 times.  I’m not really sure he went back to sleep at any point during the night.  For all we know, he was wide awake in his room the entire time, only vying for our attention when absolutely necessary.

Unless we find someone who wants to work the night shift, I will unfortunately have to become nocturnal like the boy.

The sun is up and it’s a gorgeous day.  Good night everybody.

You know how it’s never a great idea to ignore a quiet toddler in another room?  I’m here to tell you it’s not a great idea to sleep through the night, neglecting to check on a quiet Josiah either.

You know this cute little poop emoji? I can only guess the mom of an autistic child came up with that one, just to make it easier when texting other moms of autistic kids.  Much quicker to dash off a single emoji when running late than a long, elaborate, TMI text which would only conjure up unpleasant images most every mom of an autistic child spends the majority of her life trying to pretend is not part of her daily existence.  Best to avoid that scenario altogether.

Back to this morning.

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Josiah has lots of little ulcers in his esophogus that apprently have been there for quite some time.  He also has reflux. That’s what the GI Dr. told us yesterday in the hospital. That may explain why the boy hits himself in the head and pulls his hair or my hair or anyone who happens to be in the hair pulling vicinity’s hair.

But maybe it doesn’t.

This non verbal stuff stinks.  If he could just talk and tell us what hurts, it would be so helpful.

Since he can’t, we guess.  We do our best to make an educated guess based on data we collect. But in the end, it’s all just a guess.

I would have NEVER suspected ulcers or reflux.  Never.  Josiah eats really well.  He eats quite a bit of food at most every sitting and he loves everything and anything you put in front of him. Shouldn’t he be a more picky eater if certain foods cause pain going down or coming back up?

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Josiah saw an Otolaryngologist yesterday at Texas Children’s Hospital. Yes, we used a wheel chair to get the boy in the door.  No, it did not go well.

His amazing caregiver came along for the fun.  The visit would have been impossible without her.  Though no medical professional touched Josiah the entire 2.5 hours we were there, he made that face he always makes when he’s stressed and ready to flee.  It’s usually one of the first indications Josiah is anxious.  He tightens his mouth and sticks his tongue out ever so slightly with an anguished expression on his face.  It means let’s go NOW!

It used to be we’d just see ‘the face’ as I affectionately call it when Josiah felt uneasy. Lately though, he has been pairing ‘the face’ with a swift blow to the side of his head. Depending upon his level of frustration, we sometimes hear a moan or two. Yesterday though Josiah was scooting his feet across the floor to propel the wheel chair out the door.  He was wapping himself in the head repeatedly; communicating quite clearly he was done with that place.

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