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
Monday, December 14, 2009
Saturday, October 24, 2009
Looking Better....
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
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
Wednesday, October 7, 2009
SO FRUSTRATED!!!!!
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
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
Saturday, October 3, 2009
Mommy, Are you having a red day?
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
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
Tuesday, September 29, 2009
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
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
Monday, September 21, 2009
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
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
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
Sunday, September 20, 2009
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
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
Tuesday, September 15, 2009
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
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
Sunday, September 13, 2009
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
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
Tuesday, September 8, 2009
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
Blessings,
BEARZ Mom
Saturday, September 5, 2009
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
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
Tuesday, September 1, 2009
"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
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
Saturday, August 29, 2009
Ibises and Woodpeckers and Dinosaurs, Oh My!!
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
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
Monday, August 24, 2009
Aunt Betsy Buble
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
Blessings,
BEARZ Mom
Sunday, August 23, 2009
Children know how to come to God
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
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
Thursday, August 20, 2009
preparations and concerns
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
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
Wednesday, August 19, 2009
Getting familiar
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
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
Tuesday, August 18, 2009
R* E* S* P* E* C *T*
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
Blessings,
Bearz Mom
Sunday, August 16, 2009
"What comes after that mommy? Then what, mommy?"
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
Blessings,
BEARZ Mom
Saturday, August 15, 2009
123... you're older
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
I think I'll leave that one alone for now.
Blessings,
BEARZ Mom
Friday, August 14, 2009
In the beginning
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
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
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