BEARZ View

My boy

2011-05-15T13:55:00.000-07:00

Well,
My last post was all about me, me, me. Time to not be so Me-gocentric for now. Bear has done pretty well this year, but the past few weeks, we've seen a change. He is still super smart and can do what any kid in his class can do and a few things they can't do. His issues are focus, attention, social skills. He is considered on the autism spectrum and 98% of his difficulties stem from that, not blindness. So, he has been in a regular classroom this year, but seriously rethinking that. I don't want him to be in a situation where he gets in trouble and isn't able to do his work like he needs to, so I am hoping to put him in a smaller classroom. I know that is not the most popular way to go these days with IDEA and least restrictive environment, but it seems best to me, to allow him to be and do his best.
He is such an imaginative little boy. I think he will definitely grow up to do something creative. He tells all these cool stories. He calls them "walk around" stories because he tells them as he walks around the house. The events unfold based on what he encounters as he walks around . For example I turned on the microwave, and the characters in the story "heard a very loud sound". I will have to sit down and type up the stories as he tells them, but right now they evolve so much as they are being told, that I'm not sure someone could follow them.
Somebody told me yesterday how amazing they thought I was because of something they saw me saying or doing with Bear.I don't think I'm amazing at all. I think I am about the farthest from amazing a mom could be. Sometimes I feel like he deserves so much better than he got. I have a lot of health issues and some days I am so tired, I can barely make it. Those days, I have to rest a lot. He should have a mom who can run around and play and dance, like I used to. I know God knows all and has a plan for everything, but at times I wonder... not "Why did I get a special needs boy." like some think, because he is so much more than that. He is so many blessings from God wrapped in one. No, I ask, "Why didn't he get better?" Why doesn't he have a mom who can do everything? Why doesn't he have brothers and sisters and a father who lives with his mom? Well, enough of those thoughts.
Anyway, time to go get him his dinner so we can go to church. We have an awesome church family and I think it will do us some good to see them again.

Blessings,

BEARZ Mom

2011-05-15T13:24:00.000-07:00

Hi Friends,
You know about 5 minutes ago, we had this huge deluge of rain out of nowhere- well, not exactly out of nowhere, the sky was a little gray and there was a slight chance of rain showers, 30% I think, but still... One minute the sky was a little gray and the next, wham!! rain so hard you can't see through it. It lasted about a minute and a half, if that. It made me think about my life of current. My life was ... okay... but there were lots of gray skies and things I couldn't control and then wham... one decision and everything changed so much, that at times I can't recognize my life anymore. That decision was when I realized that my marriage wasn't gonna get any better. I had done ALL I could to try to make it work but as they say, "It takes two to tango" and my partner was sittingall the dances out. I believe I was even told that there were other things more important than me and our relationship- on the back burner for now- I believe was what he said. Well, that along with the fact that he seemed to think he could come and go as he pleased with no reponsibilities and treated our checking accont and me as his personal ATM... well the decision had to be made. The decision to separate was a quick one based primarily on those factors. However, the one to divorce was a slow, painful one based on much prayer and wise counsel from trusted, christian friends, leading to the rainstorm I've found myself in. So, would I go back to the plain gray skies before the deluge? No. I know as painful as it was, I made the right decision. However, now I find myself in a life I don't recognize. Single mom, having to call on my church for help on things, wanting to go hang out, but all my friends are married and those who aren't are too far away, or don't have kids, wishing to try again to find the right guy... a strong christian man, a man who wants a relationship, a relationship based on a mutual desire to grow in Christ, someone to set the example of what a strong Godly man does and is for my son. Sounds good, right? Well I thought so too. Today, in church the pastor hit me in the eyes though. He asked us to go home and evaluate what was in the darkest corners of our house, to ask God to show us what we needed to get rid of, what was keeping us from Him. Well, he meant books, music, movies, time with TV, etc. I heard loud and clear though that God wanted me to stop looking for that man. I'm on a few dating sites and I check them fairly often to see if I see someone who fits me. If I see someone whose profile sounds like what I'm looking for, I send a smile or a quick e-mail, and guess what... I get nothing back.Men have all this about wanting that Godly woman to grow in Christ with etc... all the things I have on mine, but nothing comes back. Do you know how small that makes a person feel? Well, I have decided that I need to focus more on Christ and reading the Bible and stop looking at these sites. I will not go there to look unless I receive a message from someone there. Then, I will go to look at their profile and see if I think they fit. I have to stop thinking about it and know that if I am meant to meet someone, that is someone God wants me to meet, he will take care of it and if I am not, then it just wastes my time looking. I have to let go and do it God's way, not mine. Now, since I'm putting this out there really publicly, I have to do it. I appologize that this exerpt is primarily about me and not about Bear, but I needed to say all this and the rainstorm brought it on. I promise the next one will be about Bear.

Blessings,
BEARZ Mom

Spring Break

2011-04-22T09:03:00.000-07:00

Well hello there again. I trust everyone is having a great week. We are on Spring Break this week! I prefer it to begin following Easter rather than end with Easter. It just feels so wrong to go back on Easter Monday, but the powers that be in the School System didn't ask my oppinion on the subject, so off this week and back on Easter Monday. We started the weeks with a trip to the beach. It was Bear, my mom and dad and me. It was so nice to disconnect from the world for a couple of days. The funny thing is Bear wants to go back, but not because of all the cool things there or the ocean or anything. He just likes the hotel room. He didn't care if we went out or stayed in while we were there. We didn't really go out to the ocean as it was cool and he had a cold, I think. It may have been allergies, but considering the fact that I now have a raging bad cold, I think it was a cold. Anyways, his nose ran nonstop all the time, even with allergy meds. He said at one point when it had stopped running for a few minutes, that it was finally relaxing for a little while. LOL
God bless that little boy's imagination. He can take any toy and make it whatever he wants it to be. I had to inflate an air mattress for him with a pump. Last time we did it, he hid. This time, he said if he could help, turn the pump on, he would be okay. I let him and he did great. The funny part was that then his extra electric toothbrush that has been a weed eater, mixer, etc, then became an air pump. He would put it up to the mattress and turn it on and then mimic everything I did and said while the mattress was inflating. Too funny!!
The whole ride home, he and my mom read the book "Llaama Llaama Mad at Mama". Once we got home, that night, he said to me. "I am Little Llaama and I am mad at you,Momma." I said, "You are, why?" He said, "Because I went to an egg hunt and only got one egg." I said ," I wasn't even there. Why are you mad at me about that?" He said he wouldn't be mad forever and sure enough later, he said "I'm not mad at you anymore mommy. I am nice now." I said I thought that was great. After that, he played "The Three Little Wolves and the Big Bad Pig" I kept thinking someone was at the door, because he would knock on the door and then a few mins later say "Little Wolf, Little Wolf, let me in."
He is truly fun sometimes, but boy does he talk. Someone asked me once if he woke up talking. I said, "No. He talks in his sleep too." And that is so true. Last year, there was concern at his IEP meeting that he wasn't asking enough questions. This year's IEP partially focused on "why does he ask questions all the time." I had to laugh at the irony. It is good that he asks questons, but trying to get him to understand that questions are for eliciting information that isn't known, is hard. He wants to ask about things he already knows or things that are totally irrelevant to what is going on at the time. So, I have started giving him 3 questions a day that he can ask that are questions he already knows the answer to or that are irrelevant and after that, I don't answer. He is getting better about it, but whenthis protocol isn't followed by others who are with him, it makes it tough to get much headway.I also don't want him to lose curiosity. He needs to have a curiosity about what is around him so he will be encouraged to explore the world around him, but I just have to help learn to use questioning right.
One things that starts to concern me this time of year are the wasps. They like to hang around my front door. I am vigilant about watching for nests and trying to get rid of them, but still random wasps appear and sometimes get in the house. I don't want to breed a sense of fear in him about them, but at the same time, how do I help him to not get stung? I know all kids will be stung, but I would still llike to prevent it if possible. He has to touch sometimes to find his way, so how do I make sure he isn't going to be stung by a wasp. We also get Cowkillers sometimes.They are in the wasp family, but they crawl rather than fly- more likely he could touch a crawling one. I would appreciate any insight other parents could provide regarding this dilemma.
Well, at holiday time, I start thinking about how the holiday can be incorporated into something he can appreciate and enjoy with his other senses. Easter, or Resurection Sunday, is no different. I was looking for ways to incorporate the resurection in a way that kids can easily understand, and I found a really cool cookie recipe posted on a site I subscribe to called Angie's Gluten Free. This is the URL. Hopefully, it will work http://www.glutenfreeclub.com/Recipe.aspx?nid=522&utm_nooverride=1.
It should take you there. If I get the chance to, I want to do them with Bear.I also was looking for a way to do decorating eggs. His VI wanted us to boil some eggs and this is the perfect time, but what would be the point in dying them for Easter? He wouldn't see the difference. So, I started looking for tactile decorating ideas and came across a fabulous website for tactile decorating. Here that URL is http://www.wonderbaby.org/articles/tactile-easter-crafts.html I am not sure if it is a BLOG or a website, but it is definitely something I am going to look at better. Hope you will be able to enjoy it too. *(You will need to copy and paste these URLs into your browser. I did not link them.)I am thinking about decorating the eggs with the cookie sprinkles and such. I think Bear would like that.
Well, good luck with whatever you do this weekend, whether it is church, time with family or just some special time for yourself. Be blessed.

Blessings,
BEARZ Mom

2011-04-09T18:34:00.001-07:00

Well, Hello there friends,
Wow! It's been quite a couple of weeks. I'm in the process of divorcing and it was supposed to happen last Thursday, but due to the attorney's paperwork glitch, it didn't happen. Was supposed to happen this Thursday, and haven't heard whether it did or not. Guess I'll find out soon.
Been pretty sick the last couple of weeks. Started out with strep throat last week. Then,Bear caught it from me last weekend. Then, Monday, I started getting sick again. Finally went to the Dr on Wed when my temp reached 102 and they couldn't tell me what was wrong- just some secondary infection likely- that didn't repond the the antibiotic I was already on. So, now, I am FINALLY feeling better.
Last night, Bear stayed overnight with his poppa and his grandparents. I am glad that he got time with his poppy. He doesn't get to see him often, so that was good. Picked him, and my folks up and headed to the mall today. It is that time, no not Christmas, not Prom, not Easter even... time..... for my first bifocals. A major stage in midlife. So, headed there to pick them up. Decided to get some that were very different from my previous glasses and I am loving them. Bear, however, sees the mall as an opportunity to ride the mechanical rides. He puts up with the walking and shopping, just to ride those rides. He loooooves those and has for years. I don't know what we will do when he gets too big for them. It's coming soon though!!!He is so tall already. He has certain ones that he likes to ride more than once and others that once is enough, but before all was said and done, he rode a total of 10 times today and would have ridden 10 more if we let him.
We were also looking for some Spring and summer clothes for my little long legged boy. Found him some shorts and shirts, but could not find any light weight long pants. What do the designers think? Do they think that kids want to wear heavy pants or shorts and nothing in between?? Because that is all I could find. Oh well, I'll keep looking.
Another thing he loves is conveyor belts and our loccal grocey store will let him feel the convyor belt when it moves and will sometimes let him go beind the counter and work the conveyor belt. He loves to do that!! He always asks when we are buying something in a store if there is a conveyor belt? I say, "No. This store just has a counter." He heard the cash register in one place today, though and asked me the what it was. I told him and as we were leaving, he asked me the oddest question. He said, "When can I come and sit on the cash register?" I said, "Never, because cash registers are not for sitting" I'm not sure what he was thinking about that.
As I've said before, some days I don't know what kind of vehicle I am driving around. Bear is always pretending it's a bus , plane, truck, etc. Well today at one point, it was a train. The funny part is he kept wanting me to blow my train's whistle and quite conveniently, we happened to pass a train and it blew it's whistle. Couldn't have been better timing. Then, on the way home,I was driving a race-car. What an imagination that boy has!!! I think he will surely be a writer as well as a musician one day.
Well, I should go for now. Church is in the morning. Hope all of you are doing great!

Blessings,

BEARZ Mom

2011-03-29T19:55:00.000-07:00

Hi Friends,
This is just a quickie, but I wanted to share something about Bear today. It's just another example of how differently he sees things sometimes. His Vision therapist send home sheets every couple of weeks to have him do things that are related to what he is reading. We have gone and taken care of and played with dogs, played. We've checked out the inside and outside of a car and talked about relevant occupations related to cars etc. Well today's was about stranger danger and making sure that your child knows emergency procedures, phone numbers, etc. Well, Bear has known his address, his grandparent's address, home phone, cell phone, and grandparent's home and cell phones since he was 3 because I never wanted him to not be able to tell someone where he needed to go if something happened to me and we were separated. (Mommy's biggest nightmare)Well, I was trying to explain to him about a stranger. He doesn't know any strangers. If he could see, he would be the kid who would go up to anyone and talk to them. Well, I was telling him that a stranger might try to lure him to his car etc with promises of treats and then might do something that could hurt him. Well, Bear says,"Mommy, would he have a gun?" I was surprised that he would ask that and interested at how he knew about that possibility. Then, he finished his question. "Mommy, if he had a gun, would he shoot me out of it like a cannon?" Aye, Yi, Yi! Lord help me. We talked some more, but I'm not sure he gets it.

Blessings,

BEARZ Mom

Back to BEAR

2011-03-27T20:31:00.000-07:00

Well,as I said previously,Bear is now in First grade. The year started a little rough, but overall has been pretty good. He began the year with one teacher and due to budget and zoning issues, received a new one about 2 months into the year. Overall, Bear has had a good year. He has a great techer, continues to have the same awesome therapists and now has his own paraprofessional. She is amazing with him. She is loving and kind, but still tough and demanding ,but in a good way. She has high expectations for him just as she knows I do. He has proven to be a well mannered, very smart little boy with varied interests.His interests don't tend to be what the "typical" child is interested in though. I don't know if that is because of his blindness or the fact that he is considered on the autistic spectrum, but he tends to focus on certain things for a while. At Christmas time it was dustbusters. He does not enjoy the vacuum cleaner at all unless he can work the buttons himself, but my mom got a dust buster in the fall and he went crazy for them. Everytime he went there, he wanted to hear it. He would ask if it was charging and constantly asked me when I was going to get one. He wanted a toy one for Christmas. It was all he talked about for months. Well, he got a toy one for Christmas and played a little with it, but soon that obsession was done and he was on to another one.
Now,he is in love with cars- a little more boyish- but he wants to know what kind of car and is it a car or a van and if it isn't what he wants to be, he pretends it is- ie my van lately has been an airplane and a car as well as a church bus in his mind- I never know what I'm gonna be driving! LOL
His other obsession is baths and showers. He wants me to wake him in the morning so he can turn on the bath or shower for me. He wants to hear it and if I take a bath after he goes to bed, instead, he asks "Mommy, did you take a bath or a shower?" "Mommy, why did you take a bath instead of a shower?" "Mommy, did the water come from the top or the bottom?" etc etc etc. He is also obsessed with Barney lately. Not the worse thing to be obsessed with, but admittedly, mommy gets tired of it. When most kids his age were loving Barney, he had no interest. Now, he is at the age that most boys would DIE before they would even say Barney, and he can't get enough of it. Yesterday, he asked me what would it be like if the rain was really lemon drops and gum drops. I told him "it would be sticky." Well, with that thought, I guess I better go take a bath, or a shower,so I can answer his questions about it tomorrow.

Blessings,

BEARZ Mom

What a Year it Has Been!!!

2011-03-27T20:15:00.000-07:00

Well,it has been quite a while since I posted anything. I appologize for that and I hope to do better this time.I am going to give a quick explanantion for whay I haven't been posting. You will also notice that the posts have changed somewhat. They will focus some on Bear still, but there will be more about issues that we face as a family based on changes we are going through.
It was quite a year! Bear was not the only one going through changes. The whole family has. When 2011 greeted us with new opportunities to grow and change,we made a big one. Bearz dad and I decided to separate. I returned to work after holiday break heavy hearted, but determined to not let things in my personal life affect my work life. Trying to be mom and dad and trying to work out things so that Bear still got time with both of us and trying to make sure that his view of his dad wasn't tainted by my personal feelings sounds alot easier than it was/is. I did my best. I prayed ALOT and I leaned on family and good friends to get through it. It did take a toll on my health however and something I was diagnosed with back in 1999 returned with a vengeance. I was told that I again had Chronic Fatigue Immune Deficiency Syndrome. I had it in 99 and after quitting my job and really taking care of myself, it went into something like a remission for a while. However, the stresses of the year both personal and professional proved to be too much and I once again found myself facing this disease. Knowing that there was no way I could even consider quitting or even cutting back on work, I did everything I could and I still am to keep being able to work. It means a lot of cutting back. It means trying to eat right and it means not always being able to do what I want to do. The thing that I have the toughest time with is scaling back on what needs to be done. I finally get a little energy and try to get some things done. However, if I overdo, I am no good for a long time. There are days that I go to work feeling barely there. I have been so tired that I couldn't speak or think coherently, but I knew I needed to be there. My students are pretty great. I've told them that some days they just have to give me a minute to think. Some days I need a nap almost as soon as I get out of work and yes... there are a few days when I am just tooo sick to go at all. I hate those days and I try to make them as few and far between as possible. But, that is the life of this illness.
Next post will focus more on Bear

Blessings,

BEARZ Mom

Ch Ch Ch Changes

2010-02-01T20:58:00.001-08:00

Hi all,
I am back. I find myself in a bit of an altered circumstance that has me questioning a lot of who I am. My husband and I are in the midst of separation and divorce and I am beginning to see a me that hasn't been part of me for a while. I don't know if it will eek out in my writing or not. People who know me see a difference in my everyday activities and attitude. Is that good or not? I don't really know. I don't see or feel the difference in myself, but apparently it is there.
Although it is tough for me right now and I have spent more than a couple sleepless tearful nights, I know that I can't return to the relationship I had. It was not healthy for Bear or me. Sadly, though, Bear is caught in the middle. Despite both of us trying to make it easier on him and trying to always put his needs first, he knows that his life has inexplicable changed and he doesn't fully understand why. His cognitive abilities are lagging a little behind his cohorts, which may be a good thing sometimes, but he knows that mommy and poppy do not live together any more and he misses his poppa. Where we live, we rarely get snow. However, this weekend we got about 6 inches.In our area, that amount of snow shuts everything down and I do mean everything. The DOT crew couldn't keep up with the roads and so we have been a bit snowbound for the past 3 days and will be tomorrow. Bear was supposed to go visit his poppa yesterday and spend the night, but due to the weather, that hasn't occurred. Hopefully there will be a short visit tomorrow if the roads are a little better. He has been very patient with me(for a five year old)and I have experienced the joy of piggy back riding him around the house, listening to him practice his braille reading and listening to many many repititions of Curious George on his CD player.
His new interest is video games. We went to my best friend's house to vist over Christmas break and both of her boys played video games for a good part of our visit. Well, that kind of left Bear out a bit. He couldn't really do that and the things he was interested in didn't really interest them- although they did try. It caused me to see the larger gap between him and his class-mates. I thought,"this is what his class-mates at school are like when they go home." This is another realm that he doesn't fully understand, another brick in the wall that is up between him and his sighted peers. It made me sad. I have since been looking for video games that are out that are for blind kids or that have enough audio sounds so that he would at least have on some level the same experiences. Most that ahve been geared for blind, seem rather mature. I read that most companies who produce video games are not interested in making them accessible to the blind because it would not be enough of a money-making venture for them due to the snall population of blind people. Others just think its ridiculous to have a video game for a blind person. They should walk a mile and see if they still agree with that. I do not know if he would understand what to do with them or not though. I know I do not have the skillsets needed for teaching video gaming to anyone. I also don't know if it would be a good thing for a child who has issues with social skills to have a video game to play on his own. It might be a further isolation for him. I'm in a bit of a quandry about it. So I have started looking at other types of games. I am considering braille versions of Go Fish or Uno. At least they are games that you play with other kids. He seems excited about the prospect. I got him a braille version of Hi-ho Cheerio for Christmas and he seems to enjoy that. Of course, he beats me every time I play it with him, but that is okay. I would be curious to hear about what other parents of blind children have done in regards to games and such.
We live in an area where there are not a lot of kids and we do not live in the same community as his class-mates, so it makes it hard to have a lot of social interaction with peers outside of school and his group therapy.
This was his first snow. I thought he would love it, but he didn't. He thought it was okay for the time he was out there, but then he wanted to come back in and hasn't wanted to go back out. However, he did enjoy the snowcream I made. He said, "Mom.I like the creamy snow better."
Have a blessed day.

BEARZ Mom

Christmas in my Family Room

2009-12-14T20:04:00.001-08:00

Hi all,
If you are like me, the holidays are taking a lot of your time. Its my absolute favorite time of the year. Its hilairious in my family room though. Most people have these delicately dressed trees and all the pretty nativities, glass dishes of candy etc etc. My family room is full of scattered Little People: Mary, Joseph and the baby Jesus tossed on their heads in amongst the cows, sheep, shepherd and wisemen- tumbled from their humble abode so that Bear could lift the stable up and play the music. The music.... is all that matters.
Then, once those are carefully replaced , for the eleventeenth time, they are carefully watched over by no fewer than 25 singing Christmas critters. We have Santa on the Christmas bull, Snoopy, Charlie Brown and Woodstock, Penguins, and a host of carolling cats, dogs, cows, chickens, pigs, birds, and a horse. Then, across the room is the Christmas tree. It has a beautiful star on the top. Then, it is completely blank except for lights, until you get to the middle. At that point, it is laced with every kind of Christmas singing ornament, singing animal and bell we could find. Bear loves it!!!
This Thursday, we have his Eligibility meeting. A lot has changed in a few weeks. His VI has been out and we have missed her, but the other VI has filled in on Braille and other VI related things. Meanwhile, the paraprofessional they got to take her place in the classroom with Bear, has been awesome. She loves him and she is able to stay with him all day instead of just in the morning. It has really made things so much better for him. His behavior and what he is getting out of the class has really improved having her there with him. It has given us some real ammunition to say that he needs his own paraprofesional in the classroom. His grades have been good. He is showing people how smart he is. I'm sad sometimes about his teacher, Mrs. M though. She occasionally says positive things about him, but I don't hear much. I mostly hear it from his new para Ms. SB. and other teachers he sees. I don't know if Mrs. M just isn't around him much, or if she just doesn't think to tell me the positive things as much- as long as she tells him- or if that is just the way she is. I guess I will never know that part.
I've written a non illustated children's book about Bear's first year- when we ofund out about his blindness. I'm considering E-publishing it. I'd love to know what y'all think about that idea.

Blessings,

BEARZ Mom

Looking Better....

2009-10-24T18:13:00.000-07:00

Hi
I'm back. I know its been a while. There has been a lot going on here in addition to Bearz situation. Since I wrote, I spoke with a lot of people regarding what we can do for Bear. I'll do my best to shorten it for now. I contacted three places that I thought could help him with his social/ communication problems. I heard back from none. So, I called two of them back again. One called back and said they couldn't help. Sadly it was one that had financial assistance and was run by my Alma Mater. Their program was more for children with articulation type speech problems. Then, I heard from the one that I was most interested in based on the testimonials I heard. They invited us to come for an assessment. We went about two weeks ago Tuesday and he seemed to take to the place and people really well. The leader, Ms. B showed me all around and described how the group works. It is run by a Speech Pathologist and an OT together. The kids are put into a social situation playing together to encourage natural conversation skills. Then, they have what is the equivalent of a Calendar Time and they talk about current things going on. Following that, they have a craft activity and they basically force the kids to have to ask for supplies by having only one of something each child needs. They do realize that they willl have to tell him that and where it is so he will know who to ask. He will begin that program Nov 3. I am very excited!! I have heard great things about this program. I also spoke with one of the head Speech Therapists for our school system , who is also on the Autism Cadre. She is going to observe him, as will the Speech Therapist for our building . Then, they are going to try to pull him into a group of speech kids during the week sometimes. Our Guidance Counselor has a group of kids that she works with on social skills. We tried that, but it didn't work out to be a good fit for him or the counselor.
I think I knocked on as many doors as I could though to try and help him. We also got to meet with the lady who observed him from the Autism Cadre. She made some suggestions for helping him, like to have a Playground Buddy who might encourage him to do more than he currently likes to do. She also suggested one of the other SPed teachers at our school who is really good with social skills training maybe could come and work with him in a small group during Literacy Stations because that is a social time for the kids. He had a screening from the School System Dr. I was there as well. The Dr agreed that although he doesn't think Bear has true Autism, he would classify what he has as an Autism Spectrum Disorder. Although, I don't love that label, it will open up more doors for services. We (the IEP team)now have to decide whether we want him to continue in his current classroom, but have a paraprofessional with him most of the day who has been trained and approved by the VI and the autism teacher. Our other choice would be for him to be in a self contained environment either full or half day, with other children who have ASD- however, some are nonverbal and they are of different ages. I am planning to push for the Paraprofessional. I don't think I want him self contained. I think he needs to be in the regular Inclusion classroom, just with the additional services. Luckily, his classroom teacher agrees with me that self contained would not be his best option, so I won't feel like she wants him out of her room.
Overall, things seems to be going fairly well. He has been having green days. : ) so, we have been listening to all kinds of things on the computer. Yesterday, we went to the pumpkin patch and he picked out a pumpkin. Today, he helped me to pull out the guts and told me what shape to make the eyes, nose and mouth for a Jack-o-lantern. That was kinda fun.
We are working on a play date with a friend in his class. I wrote a note to the mom of a little boy who seems to enjoy Bear in class. I told her a little about him and asked if she would be interested in doing a play date. She called me back and said yes. She sounded really nice. Now, we just need to work out the details. That excites me. I really want him to have a friend and enjoy doing things with him and have friends stay over one day. Will he be able to do that? Is he going to have relationships like other kids do or will he just not care? These are questions I have. However, God is the only one who has the answers and I guess in due time, they will be revealed to me as well. Hope everyone is doing well.
If you have a blind child or special needs child in kindergarten this year, I would really like to hear how your experiences are comparing to ours.

Blessings,

BEARZ Mom

SO FRUSTRATED!!!!!

2009-10-07T17:41:00.000-07:00

Hi
Well, Bear actually had a couple of good days. He was on Green Tues and today. It would have been a really nice night for me had it not been Interim Report Card day. I don't know if your school system does this, but ours runs on a schedule of 4, 9 week periods a school year. Then, half way through each 9 weeks, there is an Interim report. It has much less detail than the regular report card. Well,today the kids got them and I wasn't pleased. He got S's for the 4 core subjects, but I have never seen so many Ns in social skills. It hurt. I've been waiting for years and years for him to get his first report and it was terrible. At first, I was kind of angry. It seems like if he has documented issues of an autistic nature that affect his social skills, he shouldn't receive an N. Then, on the other hand,I don't want to make excuses for him. I want him to learn to do these things. I think I knew the problems and all, but seeing it in black and white was really harder than I would have thought. I almost wish it was academic problems instead. I know what to do for them.
Mean time, we were supposed to meet Monday with the person who observed him. However, she had a death in her family and was not there. She sent 3 social stories for him. Our VI shared them and the team of teachers at the meeting shortened them to make them easier for him. (they were really long) He has one to help him remember what to do when he comes in the classroom and one to help him remember to greet his class-mates. I also found out that the drinks I was sending him for snack were not okay, because he can't open them on his own(the pouch drinks). I can't tell you how many of those I have opened for sighted kids, but that isn't the point. So now, he is taking sugar-laden drinks that are supposedly easier to open. I also found out that he needs another backpack. His tends to fold down when he is trying to put stuff in, so he needs one that the front is stiffer on than the one he has. It is not easy to find those now, but Walmart had backpacks, unfortunately, not the right kind. Today, I went to Big Lots. I think I got what he needs, but if not, they said I could return it. Another suggestion that was made to me was that he needs to be in some sort of structured group to learn social skills/communication skills outside of school. I was told about 3 possible groups. Unfortunately, I have tried in my limited time to contact them and have left voice-mails or e-mails for all three and still have heard nothing back from them. Do you know how frustrating it is to know that your kid needs something and you can't get the people who may be able to help him to return a call. GRRRRRR It makes me so mad!!!!! Once I find them, I have to figure out how to afford the programs. They are quite pricy and because they are group therapy, I don't know if my insurance will help or not. The best one, I would also have to try and convince my boss to let me leave early one day a week to get him there on time. I'm told they are miracle workers though.

I think what is so hard in all of this, is that for years, I have heard his teachers talk about how much they enjoy having him and how much they learn from him. Now, I never hear anything but what he still needs to learn to do. Its quite a change. I guess the expectations are just different.
I have a lot to pray about, I guess. If you also believe in Christ and pray, please remember us in your prayers. We need guidance and we need to figure out how these needs can be met logistically and financially.
On a happier note, he did get a green day today, so after a bath, we heard some sounds on the computer- water fountain, chimpanzee, electric toothbrush, and Indri. Well, hopefully tomorrow will be a good day for Bear and for all of you too.

Blessings,

BEARZ mom

Mommy, Are you having a red day?

2009-10-03T19:46:00.000-07:00

Hi all
well, not a lot to tell this week. Bear stayed home Thurs and Fri with a bad cold. Wednesday was not a good day for him. After his 2 green days, he had another red day. I'm hoping it was because he wasn't feeling well. The observer from the Autism Cadre has been to observe him. She is coming Monday to have a meeting with us to provide some strategies for us to use with him. She isn't saying he does or does not have Autism, she is just going to give us some strategies that shuld help with his social skills. I'm actually a little excited about the meeting. I'll let you know how it goes.
Bear has sort of taken the red, yellow,green day to heart. This morning, I knocked over some oats, dropped a container of oranges and then while stirring the oats in the pot, I stirred some of them out of the pot onto the floor. I said, Bear, momma is having a bad morning. He said,"Is it a red day?" I said, "Yeah, I guess it is a red day." He said,"So, what are you gonna do?" I said, "I guess I'll have to put myself in time-out." So I put myself in time-out.

Blessings,

BEARZ Mom

Better Week

2009-09-29T19:54:00.000-07:00

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

2009-09-21T20:54:00.000-07:00

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

2009-09-21T20:10:00.000-07:00

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

2009-09-20T15:04:00.000-07:00

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

2009-09-15T18:05:00.000-07:00

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

2009-09-13T18:58:00.000-07:00

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!

2009-09-08T18:57:00.000-07:00

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...

2009-09-05T18:21:00.000-07:00

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!"

2009-09-01T18:42:00.000-07:00

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

Ibises and Woodpeckers and Dinosaurs, Oh My!!

2009-08-29T21:25:00.001-07:00

Hi all,
I know there haven't been many posts lately. Truthfully, since I have had to go back to work to prepare for school and Bear has been with my parents, I haven't really gotten to spend enough time to have a lot to tell. I feel sure that once kindergarten begins, there should be more to tell. So, hang in there with me.
He was awfully cute today, though. Last Spring, he was really into birds. He loved to listen to their calls and learned to recognize some of them. He particularly fell in love with a bird called the Glossy Ibis. I had never heard of a Glossy Ibis in my life. I guess it was our doing really. He was listening to a Birds of the Carolina CD we bought him on a trip to the Outer Banks when he was 2. Well, everything was Glossy Ibis this, Glossy Ibis that. Anything he did, said, ate, drank, read or sang had some relation to the Glossy Ibis. Then, for a short time, it was Woody Woodpecker and the Pilated Woodpecker, then crows and gulls. I never knew there were so many different gulls!! We spent hours listening to audio clips of birds.
Now, its dinosaurs. Everything is dinosaurs, dinosaurs, dinosaurs. He asked for stegosaurus milk to drink for breakfast (then triceratops, and T-Rex) I'll bet you didn't know dinos gave milk, huh? We also spent a happy hour looking and listening for dinosaur sound clips, dinosaur songs and anything else dinosaur he could think of, followed , of course by a delicious cup of chocolate pteradactyl milk.

Blessings,

BEARZ Mom

Aunt Betsy Buble

2009-08-24T19:06:00.000-07:00

This is just a quick post. I happen to love to listen to Michael Buble. I especially love the song "Home. " Bear loves all kinds of music from jazz to kid's music to "Jesus music" to classical and more. We have tried to introduce him to a variety of different types of music. The other day he heard Michael Buble on the radio. So, when we got home he wanted to hear more. I played it for him and he has really enjoyed it. However, he has gotten a notion in his head that I can't seem to shake. He has a cousin named Michael and his wife Betsy. He calls them Uncle Michael and Aunt Betsy. Well, he figures if there is a Michael Buble, there must be an Aunt Betsy Buble. so he is constantly asking for me to play Aunt Betsy Buble. I keep trying to explain that there is no such person(as far as I know) but he is not one to give up easily. If I say there is no such person, he says, "Well, we'll just look for it." So, Aunt Betsy, I know you are reading this. I guess you better get your demo ready.

Blessings,

BEARZ Mom

Children know how to come to God

2009-08-23T17:02:00.000-07:00

Hi everyone,

Hope everyone had a pleasant weekend. We have been busy. Some family issues have had us spending a lot of time on the road this weekend. We did manage to get to church again this morning. It was really nice. We had a wonderful guest musical group and Bear enjoyed sitting on my lap and up in my arms dancing to the music. He was so sweet giving me kisses and rubbing on me. Then, after church, we were doing our ritual walk around the sanctuary. We got to the altar and he said is this where we pray? I said yes and reminded him of when he and I went and said prayers at the altar. He immediately got down on his knees with his arms out and his head down. If you are not religious, this may not mean anything to you, but to me it was huge. Bear may not understand exactly what he was doing, but the total giving of himself is how God wants us to come to him, holding nothing back. I never taught him to do that. I only showed him how to get on his knees and sit at the altar. I think children know how to come to the Lord. It is only as we get older, we want to take it all on ourselves and let it weigh us down rather than giving it to the One who can help us.

Blessings,

BEARZ Mom

preparations and concerns

2009-08-20T17:12:00.000-07:00

Hi everyone,
Well, we like milions of parents and children are in definite preparation mode for "Back to School" Bear doesn't actually go until the day after Labor Day, but that is sooner than it seems. We have bought some new clothes and shoes for when it turns cooler. We have purchased the obligatory classroom supplies- notebooks, paper, pencils, crayons, tissues etc. Although he will have limited use of most of those items in the classroom, we are donating it to the class to use. We do not have to purchase new backpacks and lunchboxes, because last year's are still fine. However, we have to think about a few extra things that the average kindergartener's parent doesn't. One of my biggest concerns is that Bear will be able to eat independently. He tends to let you do as much as you are willing to do and as been seen opening his mouth like a little bird accepting his daily nourishment. Unfortunately, there are family members who help promote this dependence. It has been a struggle for 3 years now for Bear to learn to use a spoon and fork properly. It is getting better, but he tends not to scoop. He tends to just dip the spoon or fork in and right back out. We do hand over hand occasionally, touch his elbow, oral reminders and at times just leave him to it. No matter what we try, it is still a struggle. Last year in Pre-K, he had someone in the cafeteria at lunch time who could assist him as needed. I don't know if he willl, have that or not this year. I continually talk to him about how he is just going to have to dig in and try. He can't wait for someone to help him. I am really hoping it sinks in. I can't stand thinking that he will sit there so long waiting and run out of time to eat. One thing that I have done though is make sure that he can independently eat finger foods. He had trouble getting to some of his food items last year independently because he needed help getting the lids off his containers(we tried baggies too). I looked all over for containers that he could get the lids off easily. I couldn't find any except for sandwich boxes. They were too big. My solution was to find a local Tupperware lady- yes they are still around- and she very generously allowed me to bring Bear and let him try some containers at her house. They were still quite tight, so she even more generously allowed us to bring them home run them through the dish washer and put the lids on hot and that helped. So, every day Bear gets to "hunt for treasure" by opening and closing lidded containers containing little treats. This way, I am confident that he will be able to independently get them open at school without spilling the goodies. This may not be a problem any of you have experienced or you may be already ahead of the game, but maybe our experience will help someone out there.
I'd love to hear your comments if this blog is helping anyone out there. I would also love to hear how other parents have solved the spoon and fork problem we are still experiencing. Also, please pass the word to any parents that you think might be interested in reading BEARZ View.

Blessings,

BEARZ Mom

Getting familiar

2009-08-19T20:23:00.000-07:00

Hi everyone,
Well, I think I mentioned before that I am also a teacher. so while I am getting Bear ready for kindergarten, I am also getting my classroom ready. Just as a side note... appreciate your child's teacher. You have no idea how much work goes into preparing the classroom before the teacher even meets a student. Try to let your child's teacher know that you appreciate what he or she does. While I was working on my room, Bear was walking aroud the hall my room is on. I was worried, because he knows his way around the hall. He knows what rooms he can go in and what rooms he can jsut feel the door. That is a real blessing for us. You see he attended Special Ed Early Start there and he is familiar with the surrounding and the people who work there. I hope that if you have a visually impaired child attending kindergarten this year - or pre-school-that you have taken your child, or have plans to take your child to the school. It will be very helpful if your child has some familiarity with the building and if possible with the teacher. That way, they will at least know something before the first day. Kindergarten is a time of gaining independence and experienceing new things. Hopefully, your child has an IEP or a child study/eligibility meeting has been set up to discuss what types of services your child will receive this year. Bear will be in an Inclusion classroom. He will have the classroom teacher and assistant, plus at times there will be a Special Ed teacher or assistant in there. He will also get time with the VI especially for language arts. He will get PT, OT and Orientation and Mobility. If you have any questions about any of this, write me and I'll explain what I can. Have a great day tommorrow. I will be working on my classroom , again. : )

Blessings,

BEARZ Mom

R* E* S* P* E* C T

2009-08-18T08:52:00.000-07:00

Well parents of sighted children, just so you know that blind children are not much different, my sweet little Bear is sitting in time- out as we speak. He was not listening to what his dad was telling him. Although I expect him to act up and get in trouble. I(f he didn't, he wouldn't be a kid.) However, I am determined that he will not be a disrespectful brat. that may sound harsh, but as a teacher, myself, I have spent a great deal of time with children whose parents allowed them to do whatever they wanted to do because if they didn't get their way, they would cry, pout, or heaven forbid, not like them for a few minutes. I happen to believe that its perfectly okay for Bear to not like me for a few minutes, if the trade off is that he will learn to be respectful. Oops, gotta go for now. More later.

Blessings,
Bearz Mom

"What comes after that mommy? Then what, mommy?"

2009-08-16T19:00:00.001-07:00

Well, today we went to church for our obligatory touching trek around the sanctuary. We had to name each thing we touched and what came first , next etc. Then, later, I am quizzed over and over and over. "What do you go in first, mommy? What do you go in second, mommmy? What came after the sanctuary, mommy?" This is a daily occurence for us. Somedays, I just really don't want to answer him after the 32nd time he asks, but I do answer because I realize that this is how Bear makes sense of his world. Its easy for us to see what is beyond where we are standing and that gives us comfort that we are in a safe place surrounded by familiar things. Bear doesn't have that. He needs to know what is where in relation to where he is and what comes next and so on. I think sometimes its just a game for him and he enjoys testing my memory to see if it is as good as his. (It definitely is NOT) However, the rest of the time I think he is genuinely trying to make sense of his environment. He wants to know where he has been and how it comapres to where he is currently. I am extremely lucky that the people at our church, as well as all the people who have joined our lives are so accomodating and encouraging to Bear. To borrow a popular book title, "It Takes a Village to Raise a Child." It definitely does take a village to raise a blind child. If you are the parent of a blind child,or any special needs child, reach out for the resources that are available to you. You need other people in your life. You need a support system. They may be in your church, your family, your neighbours, or your school system, but they are there. I'll tell you more about the amazing village of people that we have embraced and who in turn have embraced us in another post. Have a wonderful evening. Welcome to my new followers. Feel free to comment on anything you read.

Blessings,

BEARZ Mom

123... you're older

2009-08-15T10:23:00.000-07:00

This post will be quick, because little Bear wants to sit in my lap right now. I'm enjoying it now. All too soon he won't want to do that anymore. Bear asked this morning if we could go see Cinderella. He listens to the story on his CD player. I told him that Cinderella was at a place called Disney World. He of course said"want to go?" I said well, we can't right now. I said maybe when you are older. He replied," 1 2 3.. you're older" Which in Bearspeak means I'm older. We still are having issues with him saying "I" for "you" and "you" for "I". I said getting older doesn't quite work like that. Undaunted, he replied"Well, we can go see Snow White tomorrow then.

I think I'll leave that one alone for now.

Blessings,

BEARZ Mom

In the beginning

2009-08-14T18:05:00.000-07:00

This is the first post to BEARZ View. This blog is being set up to share the adventures, good and bad that we will experience as my son enters Kindergarten this year. This is an amazing time of change and growth for all parents, but it comes with a few extra challenges when your child is blind. I'll begin by giving a little background. My son, who I will refer to as Bear to protect his privacy was born with a very rare genetic disorder called Norries Disease or Norries Syndrome. There is not a great deal of knowledge about Norries at this time. Studies are currently being done. If you google Dr. Katherine Sims and Norries, you will see some of the research that is being done as well as a more clinical explanation of Norries. If you are a parent of a child with Norries and you happened upon this Blog, there is a fantastic Internet Support group that includes parents of children with Norries as well as adult males with Norries. It is an amazing group of people who lean on and help each other out. E-mail me if you desire more information about that group.
As far as Bear goes, he has no vision and we do not think he has light perception. There is a definite possibility that he will also lose his hearing. We keep a check on it, but we do not dwell on it. Bear loves music and has terrific rhythm. He has an amazing sense of humor and a really interesting understanding of things.
I do not think there are many blogs that share the day to day nitty gritty of raising a blind child. I won't say that it is more difficult than raising a sighted child, but it is definitely different. There are things that come up and things that must be taught that a parent of a sighted child would never have to think about. I will be very honest and share the good and bad days as well as how I handle it as a parent. It is my hope that maybe I can help you and sometimes you can help me too. I hope that you will enjoy reading about Bearz View on the world

Blessings to you,
BEARZ Mom