downhill week

Well, hi all.
I told you when I first started Blogging that the hard part for me was going to be staying honest about everything going on and being kind of personal. However, I believe that I have to be as honest as possible for it to be any kind of help to other parents of blind children. Today's post will be rather personal. I hope that nobody will hold it against me or be offended in any way by anything I say. I am just (to coin a phrase), "Keepin it real"
My last post, I reported that things were going well in Bearz class. I said that, because that was what his teacher told me at Open House. That was Tues night. I felt pretty good. Then, Wed, I was told something very different. I'm still not sure why they told me everything was fine on Tues, but that is not important to dwell on right now. Anyway, his VI Mrs. Ka said that he was having a hard time on Wed. He did okay at his table, but when he was on the carpet for whole group time, he was not doing what he was supposed to do. Aside from the wiggliness, which I think they understand, he was not only not listening to the story being read, he was talking about "other non related things" like washing machines or dinosaurs etc. His teacher said it was like he had a script in his head of what he wanted to talk about. In addition, when they were in literacy stations that afternoon he was supposed to be sitting at his table with his braile writer. He put the braille writer down and got up and started walking around. This may not sound like a big deal, but as a teacher, I know how these distractions affect a classroom. He was also very whiny. Well, I had warned his teachers the night before that due to me being out late for Open House, he would be tired that next day, so his change in behavior wasn't completely unexpected. I made sure that he got to bed early that night and the next day, he was better. However, on Friday, he was terrible. I, sadly, got to witness it first hand. Its not always a good thing to be in your child's school. On the way back from lunch, he stopped at every classroom door, despite his teacher asking him to keep walking. Then, a few mins later, I heard her have to speak to him again. He was supposed to stay in waiting position in line while they were all lining up for recess and he kept trying to wonder to the room next door. I spoke to him on the playground, thinking that a little pep talk would help make a difference. Unfortunately, his behavior continued to go down hill. When they went to the RR, he was on the floor crawling around. Then he somehow lost his short and was having trouble getting them back on. Not sure if he was playing or if he got disoriented or what, but it was not the expectation for the bathroom. I talked with his teacher again on Fri afternoon and she said it seemed almost like he had gotten overstimulated. She also said that it seemed like he couldn't help himself. His VI who has known his since he was 2 1/2 says that something has definitely changed since last year.
I explained to them both that Norries, sometimes has with it some behaviorial issues. Some children have autism and some develop autistic tendencies. They said that seemed like what they were seeing. I looked at him differently this weekend. Not like mommy, but like a passive observer and I am seeing a regression in some skills too. He has always had trouble with scooping food, but it seems to have gotten worse rather than better. Today, he had his fave macn'cheese to eat and when he would take the spoon, he just couldn't seem to remember how to do it. He would take the spoon and scoop backwards or just hit the plate up and down. I also saw how he tends to focus on what he wants to focus on unless you very firmly say his name. Then, he will respond to what has been said to him. I also noticed at church that he doesn't seem to understand social expectations. If he is asked to be quiet, he seems to totally disregard it and laughs like its all big fun. He is also very fixated on sounds. Now the big questions ... are these things that he could grow out of? Other kindergarteners aren't doing these things. Are they just things that he does becasue he is blind? His VI doesn't think so. She seems to think that most blind children his age would enjoy listening to a story, wouldn't be talking about unrelated things. Also that they would be more able to handle restroom independently I don't have experiences to indicate otherwise. Could this be autistic tendencies, or ADHD or something else? It remains to be seen. Is he testing us to see what he can get away with? I'm not sure. It seems like if I push him to do more, he gets frustrated, so maybe he can't. How do I know where to say that something is a realistic limitation without making excuses for him.
We are going to have a representative from the Autistic Cadre in our school system come and observe him and see what she thinks. We are also going to try and get a Devel Ped to screen him for these different things. The problem is finding a good one. the one we really like is known to be a little bit too rose colored glasses and we need straight reality to find out what is up. the other one we know of is known to be evry analytical and doesn't really engage with his patients and also tends to like to talk to the men more than the women- tht will not work with me. So, we are hoping to find someone else to do it. I will probably be writing more this week. I am going through sort of an internal grieving right now sort of like i did when I found out that he was blind and ther that he had Norries, so I will probably be writing out my feelings a bit. I can't really talk to my friends because, if thought they would try, they wouldn't really understand and its too hard to explain. so, if you don't want to have to go through all the feelings with me right now, you might want to forego the next few posts. Hope that this week will be better. Gotta go feed Bear so he can go to bed on time today. Wishing everyone a great week.

Blessings,

Bearz Mom