Day 13 (con't)

What a day! We went over to the summer school - once again, everyone seems to know Josh, he knows everyone, and I'm there saying "who are you?" ;-) Turns out he knows his summer school teacher. When Josh broke his femur last Fall during school, the district placed him at this school (it's the special ed coop - they provide the therapy services for numerous districts, and have a school in the coop building for those kids who need placement there) for safety purposes. He was the only kid in his class who, other than having the broken leg, was ambulatory and only one of two kids who were verbal - and I think it was a pleasant, and novel, change for the teacher he had at that time (who was fantastic with Josh). While he was at the coop/school, though, he got to know everyone and they certainly got to know him! So, he knows his summer school teacher from having been at the school, two of the aides in the class are ones from this school year (and who are great with Josh), there are two or three kids from his school year class who will be with him, and he'll be in the buildng he's familiar with - should work out just great. He had a great time showing me around the building (like I didn't know it!) and led the way to the classroom.

After going there, we had a breakfast picnic while watching for trains - didn't see any trains, only "ghost trains" (when the arms go down and no train shows up) and railroad repair trucks on the tracks.

After that we went to the drop-in kidcare place to drop off paperwork. He was pretty hesitant to go in, but once inside, he was fine. There were a couple of other kids there, we stayed for a little while, and then a young kid came in totally distraught that Mommy was leaving. Josh was getting pretty upset by the kids emotions so we left.

When we got home, we had a very short rough patch (again over peeing, which he ultimately did - in the bathroom!) and I just lost it - just broke down crying. I cried for quite awhile and then went to talk to Josh - we talked a lot about how I know he can pee in the toilet, that I have faith in him to be able to do it, that he needs to have faith in himself, that his legs are really strong so he doesn't need to worry about that (in case he is having doubts about the leg that had been injured) and the doctors say his leg is even stronger now than before he hurt it. And I told him that I think I've really reached my limit on it, that fighting about going to the bathroom is, in his words, "too much." We agreed again to try harder.

In the evening, I took Josh over to the kidcare drop-in center - I was going to dinner with the family for Dad's birthday and it was really an adult dinner at Capone's Hideaway (yum!). I was so incredibly nervous about leaving him there. Turns out I had nothing to be nervous about - he did such a great job and had so much fun! We originally thought he would be the only kid there but, as it turned out, there were six other kids in his room. I spent quite a long time with the caregiver who was going to work/hang with him - turns out her husband has seizures so she is well-aware of how to deal with them. And, the woman I spoke with the other day who knew so much about sensory issues and activities was there tonight. They put me totally at ease, Josh had some movies with him, the one caregiver was just wonderful with him (she also is involved with raising comfort dogs through her church - I said she really should see about bringing them into the schools for the special needs population!), and they were watching out for the other kids. I left, got into the car, and just starting sobbing! I think (and Mom thinks) it's because it's just such a relief to know there is someplace like this, where they are so open to having Josh in an inclusive setting, and who know what they are doing! When I picked him up after dinner, they had several pictures they took of Josh during the evening - one with him sitting on the couch with the other kids around him in their own chairs, all smiling, watching a movie together. He had such fun there (although he wouldn't eat his dinner with them - he gobbled that down as soon as we got home!), he didn't want to leave and, in the car, said he wanted to go back tomorrow (don't think so, but he will go back!)!

I don't know, maybe it's wishful thinking, but it seems like his ability to deal with the variety of things we did today, and especially the the new kidcare setting as well as he did would not have happened two weeks ago. Maybe Francis is right - that he is more "in control" of himself with the NV. And, he warmed up to and liked the woman who worked with him so much he asked her to walk out to the car with us. That's definitely not something he would have done two weeks ago. He also did not snooze at all during the day today - as I wrote before, he does seem to have more energy or at least is not as sleepy as before NV.

That being said, when we got home tonight, it was around 9:15. He ate his dinner, had something to drink, took his Keppra, and I said let's have a camp-out! He was really excited about it - I got the sleeping bags out, set them up on the floor, went up to change into my jammies and bring down some pillows and blankets, and he had a cookie while I washed the dishes. I then went to divvie up his meds which took all of about three minutes. When I came back to the family room, he was sound asleep on his sleeping bag.

Long, but good Day 13.