If you are a Facebook friend you may have already heard the great news.  Josiah is coming home! I am one happy-dancing mom here, so excited to be getting her boy back. Josiah will be discharged October 27th. That’s exactly 2 months since he was first admitted to the hospital.

Now, I need to jump into action.  You would think given all this time, I would have been getting prepared for his eventual return.  I haven’t.  Having Josiah back home means we need to get some supports in place. We need to ensure it’s a smooth transition back to the life he once knew. One in which he does not get to call the shots.  Read more…

It has been 9 weeks since Josiah has been in the hospital.  That’s 63 days.  I’m ready for him to be home.  I’m done with this fun. On Saturday, we were told Josiah would be discharged November 5th.  I didn’t take that well. How can three and a half more weeks be justified?  What goals does Josiah have to meet to be considered healthy enough to leave?

To me, he seems so much better.  He’s calmer.  He’s sleeping through the night most nights. He’s eating great.  There is still some minor aggression but quite honestly I don’t think we will ever eliminate that completely. So how can they warrant keeping him til November?

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The other day, my sister told me to watch a Ted Talk: Martin Pistorius: How my mind came back to life – and no one knew.  If you’ve never seen it, stop reading this and watch it.  Here’s the link: https://www.ted.com/talks/martin_pistorius_how_my_mind_came_back_to_life_and_no_one_knew

Amazing isn’t it?  Shortly after watching it I googled, ‘how to teach a non verbal teenager to communicate’ and stumbled upon this website: I Love ABA.  The author, an ABA provider wrote: The behavioral piece of communication is HUGE. It can’t be stated enough: Children who cannot communicate or are non-verbal have some of the most persistent and challenging problem behaviors. Why? Well, just imagine that you are placed in an environment where no one speaks your language. If you speak English, everyone else speaks French. If you speak Arabic, everyone else speaks German. Now imagine that you are hungry and must convince these people to feed you. How long would you try pointing and gesturing, before you started pushing people and throwing things?

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After weeks in the hospital and plenty of unplanned time, we asked for a schedule for Josiah. We asked for one because it was apparent there was no clear cut plan for his time.  All day, every day, he was permitted to lay in bed.

It was fine with me initially.  When they were tweaking medications Josiah clearly was not ‘himself’. He would not have willingly complied with much of anything at that point. But once we started seeing glimpses of our boy back, it seemed appropriate to change things up a bit.

We talked to the psychologist at the hospital and reminded her their website states each patient has 6-8 hours of individualized, scheduled activities and therapies per day.

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Can you guess what that is? Josiah’s food, while at the hospital is often challenging to identify.  It is chopped in such tiny pieces, I have difficulty figuring it out.

The speech therapist there suggested Josiah has oral dysphagia.  Dysphagia means trouble with eating or swallowing. I’m no expert, but this boy has rarely had trouble with eating.  He eats just about everything and anything we put in front of him.  He eats massive quantities of food at every sitting.  He appears to be swallowing it all just fine.

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