Josh did great with Gramma and Boompah today, except he's doing the "I'm not getting up to pee thing" again. He'll refuse to get up to go pee during the day, even though he does it without any problem in the a.m. when getting up and when going to bed. He'll have an anxiety thing, sometimes a PNES, wind up peeing during the episode, but then will go into the bathroom even though there is no need any longer. Mom and I were talking about it, that the problem really could be the bathroom on the main floor here at home. I know Josh had talked about the person at his previous school who hit him in the "little room" so I'm wondering if it's a PTSD thing, or it could be, as Mom said, maybe he's claustrophobic and just can't stand being the small bathroom, or it could be that it's PTSD thing from the leg - he used that bathroom (with the commode in the hallway until he could get into the bathroom) while recovering from the broke femur. Who knows?? The bathroom upstairs is bigger, and I think the bathroom at school is bigger, so who knows??
On the upside, Josh's balance appears to have gotten better since on the NV. Previously, he would not look up at the ceiling or at the sky. Now, when he is finishing up his drink (whatever kind of drink it is), he asks for the "top off please" (which he did before but then didn't finish what was in the cup) and then tilts his head all the way up to get the last drop possible! And he is looking up at trees and birds when we're out and about. I would think his looking up like that is because the balance is better.
Another thing happened today that, to some, would seem meaningless. Josh has always had applesauce with every meal - applesauce and yogurt started out as, I think, sensory buffers for other food. There was one speech therapist who said he used them as an aide to chew and digest other foods since he didn't chew very well. He moved away from the yogurt a long time ago but he has still used the applesauce all these years. I noticed during the school year he wasn't eating the applesauce and I thought it was because either no one was helping him open the container or because they didn't want to have it thrown in the cafeteria (!). This a.m., I was getting breakfast ready and asked "what color" applesauce he wanted (he usually has the green one - pear sauce - for breakfast). Josh said he didn't want any applesauce! Whoa! No applesauce!! He ate his breakfast totally on his own, without any applesauce! Whoo hoo!!!
We had planned on going to see trains this afternoon. But, after lunch (I took half a day thinking we'd be out train hunting!) I asked him where he wanted to go and he said he didn't want to! Amazing! He wanted to just stay here and play "tip the hat" with Gramma, and play with his remote control train, so we stayed home. Mom and Dad hadn't planned on staying for the day but they did - Mom played with Josh, and Josh asked me to "play music please." So I spent a great deal of the day playing the piano! Turned out to be a very relaxing day for all.
So, I don't know if we'll go see trains tomorrow - I had planned on mowing the lawn and doing some house cleaning - maybe we can do all of that. Maybe I can get Josh to help vacuum - wouldn't that be amazing!
Josh was in bed and asleep by 8:30 - Gramma and Boompah were still here and, after a little rough time getting in to pee, did it and then went up to bed without any problem. 2 PNES today - both when I asked him to go pee. I can't wait to find out from the psych what this connection really is!
So, tomorrow, Day 34, is a play it by ear day, I think. Josh prefers routine, so we'll see how the day goes with nothing really planned.
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