still plugging along...barely

Well overall, today was a little better than Fri. I was actually feeling pretty good. I received word from my friends at church that they were praying for us and I also heard from another friend that she was thinking about me and was here if I wanted to talk. That made me feel better. I still wasn't ready to talk, at least not about what I'm dealing with with Bear, but it still made me feel better.
Then I went to bed, or tried to, and in the dark all my fears were made apparent. I am writing through the fears, hoping to feel better. I am so scared thatI am going to lose what makes Bear, Bear. I know that autistic children tend to withdraw and lose some of who they are. I don't know if Bear has true autism or just the features due to Norries. I don't know if just having autistic features means that the same withdrawing could occur or not. I don't know who to ask since there is little concrete knowledge on Norries. The Drs who deal with autism don't know about blindness, so they don't know, when they look at Bear, if he is autistic or if its just blindisms. They have no field of reference to judge and the people who know blindness, don't really know autism.
I can handle if he forgets a few skills and we need to help him relearn them or if he needs a little more assistance learning to converse and learning small motor skills. What I can't take is if he starts losing who he is. I don't think I can handle it if he stops being the funny, smart, friendly, loving little Bear he has always been.
Today was a little better, but it seems that the things that he is getting "in trouble" for in class are not so much in his control, or so they tell me. What I wouldn't give for a child who just wants to act up and be defiant rather than worrying that every little change I see is taking him away. I have noticed that he gets upset a lot easier now. Simple things will make him whine and cry and it doesn't stop as quickly as before. Is that what is going to continue to happen? Is it something that would have happened anyway or is it a response to the very different set up in class going from Early Start to Kindergarten. Is it because they don't get naps now or because the pressure is more than in Pre-K? I wish I knew.
I just don't seem to be dealing with this situation as well emotionally as I would like to. I am frustrated becasue where there no answers, there is little concrete help. I just wish there were some concrete answers out there. I promise
I'll get through this and be a better Blogger again as soon as I can. Bear has a re evaluation coming up and the meeting is this Thurs. He will have to lose his label of DD (ages out of it)and will probably take on a label of Multiple Disabilities. Hopefully that will allow us to get him more help for him. Maybe in the long run, it will help him significantly to have someone else in the classroom more consistently. I'll let you know how the meeting goes.
blessings,

Bearz Mom