Today was my scheduled surgery day.  In April I had a total knee replacement of my left knee. This morning I had planned to have my right knee replaced.  Obviously, that didn’t happen. When Josiah was admitted to the hospital for a long term stay, it just made sense to postpone it. There is no way I would be able to visit him every day while recovering. There is no way I’d be able to mess with his ‘perfect’ little world while he’s in the hospital, if I were laid up in bed, popping Vicodin.

Messing with his perfect little world is exactly what I’ve been doing lately. Every day I drive nearly an hour to see my boy. Every day I bring something different with me; more clothes, a new balloon, some additional snacks. Today I brought a very detailed schedule.

It begins at 7:30 am and goes til noon.  I figured we’d start small and slowly ease him back into a more structured day. I laid out specific activities for every 15 minutes or so and included detailed notes off to the side, about how to execute those activities from a caregivers perspective. I added a few requests at the bottom of the printed schedule, now hanging on the bulletin board in his room that reads as follows:

*Please encourage Josiah to stay OUT of his bed as much as possible, unless he is sleeping.

*Beads are best used for FREE time or as a reward for following instructions. He can have them for short periods of time to reinforce a good work effort.

I was thrilled to see Josiah in the Activity Room when I arrived this morning. He was strapped in a wheelchair. He was playing with his beads, not any of the activities provided for him.  But, he was not in his room. Hallelujah!  That is a huge step forward.

Apparently, he played with a large keyboard before I got there and also enjoyed a little presentation from the sweet ‘Music Man’ who visits every Tuesday.

It doesn’t really matter what he did while in the Activity Room, getting him in there, without any aggression is progress. I was told Josiah had been out of his bed all morning.  He’d been outside twice and all around the unit a few times.  More progress.

When we got back to his room, Josiah immediately retreated to his bed and I immediately started messing with his utopia.  I took away the beads, placed some demands on him and ensured he followed through, using the prompting sequence. It was challenging for both of us.

By the time his lunch was delivered 30 minutes later, Josiah was ready for the break. I wasn’t.  I continued to change things up just a bit.  No more being spoon fed while sitting on his bed or the couch. I had him sit in a chair pulled up to the desk. The food was transferred to his plastic scoop plate I brought from home and Josiah fed himself.  He was only given small portions at a time and had to ask for more using sign language. It sure didn’t take long for him to ‘learn’ how to sign ‘more’ when the chocolate ice cream came out. This kid learns quickly.  He’s one smart cookie.

I even had him put his plate in the sink, wash his hands and wipe the table when he was done eating.  Josiah is quite capable of much more than people think.

Yesterday, one of the CNA’s told me she was amazed to see Josiah get up out of the wheelchair and walk down the hall.  She had no idea he could walk.  For over 6 weeks this boy has been pampered and coddled; calling all the shots and waited on hand and food.  Pretty shrewd.

If that’s not brilliant, I don’t know what is.