Last January, I added this timeline to my Facebook wall.
Who was I kidding? Maybe it was wishful thinking on my part. Maybe I was simply being overly optimistic. Honestly, I was just deluding myself.
Josiah was discharged from the hospital November 4th, almost 5 weeks ago. What an exciting, joyful, emotional time it was to get our boy back home. What a huge adjustment it was for him. And what a huge adjustment it continues to be for all of us. Some of the changes we’ve experienced recently are these:
Josiah came home on 7 medications. SEVEN!! Some are prescribed 4 times a day.
He gained weight. Quite a bit of weight. Josiah continues to gain at an alarming rate; 1 – 1.5 lbs or more per week.
He sleeps now. He sleeps really well. Some days Josiah even takes 2 naps.
He no longer goes to Public School. Josiah is currently being home schooled.
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?
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?