Better Week

Hi everyone,
Well, things have gotten somewhat better with Bear, not perfect, but some days are better. I think that it helped that he finally got to spend some time with his dad this weekend, not much, but at least some. His dad's schedule is totally opposite of mine and they have been short staffed so he has been working almost all the time. Bear has had two good days at school though. I hope he will tomorrow too, but he got to bed a little later tonight and I think he is coming down with a cold.
But, back to the situation. On Thurs we had the first reevaluation meeting for Bear since his IEP was started in 2006. He will have all the original testing that was done then, done again to see where he is. In addition, the team voted to have him observed by a member of the Autism Cadre and he will be screened for ADD and Autism by the school system Dr. I was pleased with that option since I didn't really want to use the two that we knew of outside of the system. Plus, he will not have to miss school. It can be done right there. If it is determined that he is showing autistic behaviors as we suspect, then the head of the Autism cadre can suggest some strategies that will help him. Our system tends to use picture prompts for autism, but Bearz VI said there are some avaialble systems with tactile prompts, so we will see how that goes.
He had his first home work this week. He had to sort 4 different shapes into groups. His VI put Wikki Sticks on the paper so he could feel the boarders of the groups and the items he had to put on were the sticky backed foam shapes. He had a slightly frustrating time getting the paper off the back of the stickers, but he did it. Real home work where we will need to do some adapting begins in Oct.
Bear has travelled away from Dinosaur love a little and is now very interested in Taxi Cabs. I find that funny becasue we have never been in one. I'm thinking it came from a story he heard or something. Today he wanted a Taxi cab sandwich. We spend a lot of time listenning to things on the computer. I never realized all the sounds effects you could find on the computer. It has now become his reward. He knows that if he gets a green day at school, we will listen to things on the computer. He loves to hear animals of all kinds, convertibles, funrances, washing machines, vacuums, ice-cream trucks, fire engines, etc. He is very specific. Tomorrow night he is planning to hear a digital thermometer, a walrus, a vulture and the sound of an alligator running. Sure hope he has that green day again. I' m curious to hear what a vulture sounds like. hmmm

Have a great day!
Blessings,

BEARZ Mom

blessings, really

Well, I think this is the soonest I have ever posted. I had to share something though. After I wrote the last post and went in my room to try and go back to sleep. God spoke to me(no, not literally) I just felt it. He reminded me that despite what I am going through and how hard it is and may continue to be. I am luckier than a lot. There are some parents who are truly fighting for their chldren's lives against cancer and other fatal illnesses. No matter what, I still have Bear to hug and snuggle. I hope that when I have another pity party, I will remember that in the midst of everything. Now, I'll try to go back to sleep.

Blessings,(remember yours too)

Bearz Mom

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

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

progressing

Alright,
Tomorrow will be half way through the second week of Kindergarten. So far, things are going well. Bear has made some friends at his table and his social skills are improving some. His teacher reported that today he invited a little girl to come to the carpet and he asked another student if he wanted to meet Mr. M (O&M) That is definite progress for him.
The areas that we are still struggling with Bear are the social skills and self help skills. He can get his pants and shirt on and can zip a coat somewhat, but he has trouble orienting pants to the front sometimes and he is not able to button or snap independently yet. We will keep working on it.
In our school, we do literacy stations during reading. Bear's teacher shared with me today that they are going to have a Braille station so that all the students in his class can try Braille. They are very curious about it. Already, they did a Braille letter (the letter that begins the students' first name) for each student in his class. I love how his teacher, Mrs. M and his VI Mrs. Ka are really working to integrate and include him in everything and include the students into "his world." If others of you are not having that experience, you may want to suggest that they do some of these activities. If any of you are having great experiences with your child's Kindergarten(or other grades), please share what they are doing too in the comments section.
Hope you all have a great night!

Blessings,

Bearz Mom

First week down

Hi Everybody,

Hope that everyone has had a good week. Sorry for not posting more this week. I had some technical issues. Well, overall, I think that Bearz first week went well. He still has to work on sitting on the carpet during whole group time and not being so wiggly and vocal. It will get better. Its hard to expect him to be but so quiet and still when he doesn't have the visual stimulation, but it is an expectation that he must work towards. He is also having some difficulty with putting things in his backpack in the afternoon. I know his teacher, Mrs. M spent a lot of time(of which there is little) helping him do that this week. He is also having a little trouble with getting paper towels from the dispenser in the bathroom. His O&M , Mr. M comes Tuesday though so he will probably have some good suggestions. He is amazing and Bear loves him!! Once again, I say we are incredibly blessed by the team we have working with Bear!

a couple of cute things to share this week- Bearisms if you will- On the way to work, we saw this car speeding in and out of traffic over and over again almsot causing wrecks. I said to my dad, who was riding with me, that we almost saw two wrecks. Bear yelled from the back seat. " Was it a T-REx?" I then spent the next few minutes explaining the difference between a Rex and wrecks. I think he gets it now. Then, today, I was doing animal sounds for him. I did a duck and it sounded kind of sickly because I have a scratchy throat. I said it was a duck with a cold. Of course, then he wanted ... a duck with a hot.

Have a great week. I'll try to post more this week.



Blessings,



Bearz Mom

Today was the day!

Well, today was the beginning. Bear had his first day of kindergarten and it was POURING CATS and DOGS!!!!!!!! all day. I don't remember it raining the first day of school in all the years I have taught, but it sure did today. I couldn't even take his picture in front of the school or house for his first day. I think overall it went well. The first day is incredibly crazy anyway- actually the first week too. I asked him what he did today. He said, "I had snack." I said what else did you do? He said, "nothing, just snack." I asked if he heard a story, he said ,"yes." I asked if they did numbers or letters. He said, "no." However, he did say they went over the days of the week. So, I know for sure that he ate snack,heard a story, did the days of the week and made it safely back to me. That's not bad for a first day of kindergarten. However, I am quite sure he did more than that. I'll find out more later. Hope everyone had a good holiday and if any more of you have your first day of kindergarten this week. Hope it is wonderful!!!! It is a big, special day!!



Blessings,



BEARZ Mom

Getting closer...

Hi
Well, its getting close. Yesterday was Kindergarten Orientation. I think everything went well. My parents took Bear, since I had my own kindergarten class to orient with. I think its going to be a good year for Bear. We had a meeting the other day. Mrs. Ka, our VI called it and it was attended by Mrs. M,(K teacher), Mrs. E, (TA), Mrs PB, (computer), Mrs. Ke (Art), Mrs, V, (Music)Mrs. S (P.E) and Mrs. G (Media). I was really touched by how much they all wanted to do whatever they could to make class relevant for Bear. We have such an awesome group of teachers there. They had such insightful questions and Mrs. Ka was so encouraging and helpful. I CANNOT say enough how incredibly blessed we are to have Mrs. Ka as our VI. She is truly a gift from God!!!!!!!!!!!! She has set up in a little room next to Bear's K classroom so she can easily pull him as needed. She will be his Lang Arts teacher for the most part. I think Mrs. M is going to be awesome too. She is very kind hearted and sweet, but she also knows when to be firm. I think Bear will do well with her. The best part is that she seems happy to have him in her class. I don't ever want him in a class that the teacher feels that he is an imposition or "extra" in the class, no matter how great of a teacher, that person is. Hopefully, we will not encounter that. Mrs. Ka took Bear aroud the school again to refresh him. He got to use the bathrooms on the hall and the water fountain, new to him this year. Mrs. Ka and Mrs. M both reported that he did well in Orientation. That makes me happy.
Now, I am trying to think of healthy, enjoyable snacks and lunches to send him this year. It has to be finger foods until I am convinced that he will pick up the spoon or fork without prompting and will successfully navigate it from scooping to getting it into his mouth. He's making progress, but it just isn't there yet. His fave sandwiches are pb with j, honey, apple butter or banana. That is it. I hate to send pb something everyday, but he will not eat any other sandwich.
Oh well. School begins Tuesday. I'll let you know how it goes if I don't write again before then. Have a happy and safe Labor Day weekend.

Blessings,

Bearz Mom

"I'm gonna eat you up!"

Well,
Bear is officially into dinosaurs, especially Allosaurus. This morning when he got up, he informed me that he was an Allosaurus. On the way to school, he told me that he was going to eat me up. I said, "You would eat me?" He said "yes." I said, "You would really eat your momma?" He said, "No." I said, "Okay, would you eat Mrs M?"(his new teacher). He said "yes." I asked about several other people at school and he said "yes". Then I asked about Mrs. K. (His VI)He said, "No , he would not eat her." So, I said,"Let me get this straight. You will eat everybody but Mrs. K and Mrs. G ?"(my assistant)." He said,"No, I don't want to eat anyone. Allosaurus will eat food." I asked him what Allosauruses eat then. He said ,"macn'cheese." Go figure!
Tomorrow, I have a meeting. Our VI, Mrs. K is having a meeting with the Asst Princ, and everyone who will be working with Bear to discuss any concerns for the year. I am truly lucky to have such a great team for Bear. I sure hope the rest of you do. I can't wait to hear how your kids are doing. I know a couple of readers ahve blind children starting kindergarten this year too. Orientation is Fri. School starts next Tues.

Blessings,

Bearz Mom