Tuesday, May 3, 2011
Tuesday, May 3rd
Writing a blog is a ton more difficult than I thought. Kodin has spells where he would rather watch Netflix on the computer with headphones than watch it on tv. The computer gives him more options and its much easier to search, whereas the tv via Wii doesn't load or search well. It seems I have a ton of things to do during the week while he is in school, then have to chace him around an be ready to do whatever he needs, then it's bedtime. i intend to get to the point where we make it to Wisconsin from Kailua-Kona, Hawaii.
So, I left last time with Kodin not going to school and living with grandma. We lived there at Kodin's worst. He was not sleeping, neither was I. There was no school, and the Department of Health which is supposed to provide outside help, and although they had hired people to work with him (even resorting to importing people off island), everyone was refusing. One lady had to go to the hospital after injuring her back as she tried to get Kodin off of his bed.
Kodin was crazy overactive, had bm's and other human elimination accidents frequently. My friend next door told me the public pool in the area was heated and mostly vacant and I should try it. That afternoon we did. At that time Kod liked the comfort of the water to have large bm's (bowel movements for those that don't know). Well we went and we distroyed. The next day my neighbor said she brought her kids to the pool and she was sooo sorry because it seemed to be closed for some reason. I had to tell her it was us actually. The pool didn't open for a long while.
I tried to take Kodin to the beach, but can't tell until I walked him down there if it was a flat (no waves) day. Once you get Kodin to a place he is excited to go to, he flips when you try and take him away. When he did have a good day, he had a lifejacket on (or when he was younger yet a innertube I shoved onto him solid around his tummy so he could float around), and I had to float for hours out in the water with him. No matter how many hours we stayed he never wanted to leave. It was an embarracing struggle trying to get him out of the water and grab our things, and drag him away, literally kicking (my ass), and yelling, and hitting. The beach became too much for me by myself.
I couldnt take Kod to parks with smaller children. He doesn't understand his monster strength, and there was no amount of calm and safety in his life. I couldn't take him to the store because everything toppled to the ground around us. He couldn't be in my mom's house cause he was too dangerous. We had no where to go, and his violence towards my deliriously sleepy self was out of hand. The few time I got to leave the house before he got so bad I couldn't take him out, I had to have a gang of people and give him dessert tomake him sit. Not sitting involves getting under the table and not getting out. One person in particular called me a bad mother because i would be having a beer and he would be eatting ice cream. I am just going to say..lucky I had that very delicious beer and a social moment, cause Waikoloa was getting lonely and I was losing it. If someone felt brave enough to come over, there was usually a huge bm, that took me and my mom a ton of equipment and one to take him to the shower. Point is things are not good at this point.
On new Years eve of 2004-2005, my sister spent the night and i got to have my family around, and we got to have some wine. Kodin was trying to learn to call me if he needed help in the bathroom. I lived in the loft above his bed so i could see him,and get up and jump down if he tried to vacate. This night he went to the bathroom and I heard him fooling around, but he didnt call me to help clean up. In minutes he was screaming. He doesn't cry unless he injures himself unexpectantly. I jumped down the stairs to see blood all over the floor. Kodin was cut open across both butt cheeks and was clawing as himself. When Kodin get hurt, he claws and rips at his problem..it's friggin disgusting. He had his hands grabbing fat from his wound...a very large sick wound. I was panicking but got my sister and mom to call 911. The porcelain that covers the back of the toilet seat was shattered on the ground, the shards were cutting my feet, and I saw little slashed all over him. He must have been trying to play in the water, because he had gotten some of that stuff on the floor as well. He was very discreet because this all happened right below my bed. Trying to keep Kodin's hand away and in the ambulance to the hospital was horrifying, scary, heart wrenching. Getting him to keep iv's in his arms and not rip out everything applied to him was crazy. Kodin to this day has a massive scar that spans 5 and a half inches across both cheaks and it was 2 and a half inches deep. If he had cut himself anywhere else on his body, or was any less heavy (he was maxed out at 155 at age 9)..he would have bleed to death, cutting some major artery somewhere.
At this time in my life, I refused to leave the hospital. I had been researching places for us to go since he was five. Places where he might get the help I nor anyone else could provide. Let me just say, the people at the hospital hated me. They had no idea what to do for the child, and wanted us out. For weeks I stayed in his tiny hospital bed slammed up against the rail, or on the super not good chair provided. When someone would come to relieve me for a sec, like mom,or a friend, I was desperatly looking over paperwork I had collected, my friend Reya provided, and called every state in the US trying to find a place for us. This never worked in the past, so I didn't have high expectations, but I didn't want my son dying on my watch, because I wasn't sleeping and may miss a sound or movement if I actually did fall asleep. Kodin has wandered away too many times, one trip to the bathroom for me and he was gone. This arrival at the hospital forced many people to get involved. Social workers, administrators at the hospital, DOE, DOH, everyone in the state was all of a sudden forced to get together and get the child out of the hospital. ...and I must sign off for now
So, I left last time with Kodin not going to school and living with grandma. We lived there at Kodin's worst. He was not sleeping, neither was I. There was no school, and the Department of Health which is supposed to provide outside help, and although they had hired people to work with him (even resorting to importing people off island), everyone was refusing. One lady had to go to the hospital after injuring her back as she tried to get Kodin off of his bed.
Kodin was crazy overactive, had bm's and other human elimination accidents frequently. My friend next door told me the public pool in the area was heated and mostly vacant and I should try it. That afternoon we did. At that time Kod liked the comfort of the water to have large bm's (bowel movements for those that don't know). Well we went and we distroyed. The next day my neighbor said she brought her kids to the pool and she was sooo sorry because it seemed to be closed for some reason. I had to tell her it was us actually. The pool didn't open for a long while.
I tried to take Kodin to the beach, but can't tell until I walked him down there if it was a flat (no waves) day. Once you get Kodin to a place he is excited to go to, he flips when you try and take him away. When he did have a good day, he had a lifejacket on (or when he was younger yet a innertube I shoved onto him solid around his tummy so he could float around), and I had to float for hours out in the water with him. No matter how many hours we stayed he never wanted to leave. It was an embarracing struggle trying to get him out of the water and grab our things, and drag him away, literally kicking (my ass), and yelling, and hitting. The beach became too much for me by myself.
I couldnt take Kod to parks with smaller children. He doesn't understand his monster strength, and there was no amount of calm and safety in his life. I couldn't take him to the store because everything toppled to the ground around us. He couldn't be in my mom's house cause he was too dangerous. We had no where to go, and his violence towards my deliriously sleepy self was out of hand. The few time I got to leave the house before he got so bad I couldn't take him out, I had to have a gang of people and give him dessert tomake him sit. Not sitting involves getting under the table and not getting out. One person in particular called me a bad mother because i would be having a beer and he would be eatting ice cream. I am just going to say..lucky I had that very delicious beer and a social moment, cause Waikoloa was getting lonely and I was losing it. If someone felt brave enough to come over, there was usually a huge bm, that took me and my mom a ton of equipment and one to take him to the shower. Point is things are not good at this point.
On new Years eve of 2004-2005, my sister spent the night and i got to have my family around, and we got to have some wine. Kodin was trying to learn to call me if he needed help in the bathroom. I lived in the loft above his bed so i could see him,and get up and jump down if he tried to vacate. This night he went to the bathroom and I heard him fooling around, but he didnt call me to help clean up. In minutes he was screaming. He doesn't cry unless he injures himself unexpectantly. I jumped down the stairs to see blood all over the floor. Kodin was cut open across both butt cheeks and was clawing as himself. When Kodin get hurt, he claws and rips at his problem..it's friggin disgusting. He had his hands grabbing fat from his wound...a very large sick wound. I was panicking but got my sister and mom to call 911. The porcelain that covers the back of the toilet seat was shattered on the ground, the shards were cutting my feet, and I saw little slashed all over him. He must have been trying to play in the water, because he had gotten some of that stuff on the floor as well. He was very discreet because this all happened right below my bed. Trying to keep Kodin's hand away and in the ambulance to the hospital was horrifying, scary, heart wrenching. Getting him to keep iv's in his arms and not rip out everything applied to him was crazy. Kodin to this day has a massive scar that spans 5 and a half inches across both cheaks and it was 2 and a half inches deep. If he had cut himself anywhere else on his body, or was any less heavy (he was maxed out at 155 at age 9)..he would have bleed to death, cutting some major artery somewhere.
At this time in my life, I refused to leave the hospital. I had been researching places for us to go since he was five. Places where he might get the help I nor anyone else could provide. Let me just say, the people at the hospital hated me. They had no idea what to do for the child, and wanted us out. For weeks I stayed in his tiny hospital bed slammed up against the rail, or on the super not good chair provided. When someone would come to relieve me for a sec, like mom,or a friend, I was desperatly looking over paperwork I had collected, my friend Reya provided, and called every state in the US trying to find a place for us. This never worked in the past, so I didn't have high expectations, but I didn't want my son dying on my watch, because I wasn't sleeping and may miss a sound or movement if I actually did fall asleep. Kodin has wandered away too many times, one trip to the bathroom for me and he was gone. This arrival at the hospital forced many people to get involved. Social workers, administrators at the hospital, DOE, DOH, everyone in the state was all of a sudden forced to get together and get the child out of the hospital. ...and I must sign off for now
Sunday, May 1, 2011
Sunday, May the first
I haven't written in a couple days, so I will try to make up for it today:) Kodinis in bed and it's 9:42..we are breaking a record today ladies and gentlemen for Kodin's longest sleep to date. Mind you yesterday was a four hour night, which is one of his favorite time slots for waking. PS..I came from the bottom of the page to come back up and say Kodman..still in bed! (10:12) I have been up with ginormous amounts of things running through my mind for hours. I am so super jealous that I am not sleeping through like this, I have been dreaming of a sleep in day since he moved in. C'est La Vie!
I was writing last time about Kodin and his diagnosis, and when he walked etc. I recieved a message from my friend Rose who moved from Hawaii to Cali years ago, and didn't know I had moved to Wisco and was with Kodin..but read the blog(good news:). People do very often ask what I am doing here. People in -20 wind blinding white covered (buried) winter day here pair that statement with a scoff, or full bellied laugh. Well, let me tell you, that don't know why we are here.
Kodin, after being kicked out of 4 schools (which left him with 0 schools left to attend). (And for those of you that know Kona, that would be, Kahakai, Kealakehe, Holualoa, and Waikoloa). Kodi, and his four hours of sleep a night self (especially back then, he had no meds, and would fall asleep for those four hours when he felt like it, which would very often be early am. Talk about sleep deprivation on my part. He would be fully charged, and I, a confused, crazy looking person. I needed and still need 2 to 3 times that much sleep. And if the world allowed I would in fact get 12 hours of sleep. Now I get 5 on a bad night(3 on a horrible one), and 8 on a good night. Kodin takes Seroquel, a powerful anti-psychotic medicine, so that he slows down enough to learn and enjoy life, and sleep. I will get into that story at another time). So Kod didn't attend school any longer. The DOE told me that in order for children to attend school they had to be diagnosed with Autism in order to get services. Meaning that even though Kodin had Angelman Syndrome, he had to be in this Autism Spectrum umbrella to be qualified to be a student. I always found such a difficult time conversating with anyone about what might be best for my son; I would like to remind you, because of my age perhaps, or that I knew so much about my son, education, and what seemed appropriate learning stages and such. It is relevant because my relationship with the Department of Education is a very long and abusive one. If you continue to read the blog, you too will see why this relationship is and always will be horrifying. It starts with Kodin being tied to a chair when he was in kindergarden, and going downhill from there. I get a headache(no joke), thinking about how many terrible things have really happened because of them. Anyhow, Kod is not in school. He does not fit the student bill at all. The curriculum is designed for another type of child, one who is autistic. The school refuses to teach him sign language, that I truely pushed for. My mother, Kodin's father, and I all took sign language classes in hopes of making his life a better place. They stated he didn't sign properly, so know one would understand..Dolena says, "he is signing, I know what he is saying, if we all work on this together,then perhaps we can communicate?!" We felt that he needed to communicate(I know jerks right) for a zillion different reason. Mostly he needed to say yes or no, eat, drink, bathroom ,pain, more, I want, please...just basic life altering stuff. (He still used the signs we taught him without the school concent by the bloody hell way). {Thank you mom for going through this with me.The DOE took some years off her life as well.} There are so many inappropriate tasks asked of him, so much to learn, so much misunderstanding on the educators' end, then, Kodin starts getting more violent and large than ever. So, with the biting his arm, turns to biting others, he can't be controlled he won't nap, he bangs his head hard and disturbingly on everything, he covers his ears and goes into the fetal possition, he kicks from ground level and spins around as you approach to kick you hard where-ever he can reach, he spits(which he has learned you can throw too), swings an underarm hit(that is swift and not a common swing, so you might not see it coming), and other delights. This all leads to no school. Well there is a pretty amazing story that goes with all the schools, but that shall come later as well.
Kodin lives with me (we are talking about before moving to La Crosse in 2004..cause he had his accident on New Years of 2005) , who lives at my mom's at this point. I used to have jobs and places of my own, from right after highschool actually, but having Kodin 24 hours really put a damper on getting work, keeping work, and paying bills. With no school the possibility of the occasional work week ,with no calls to come get my son from school, was a dream of the past. So, we live at Beverley's in Waikoloa. A care home for the elderly actually called The Way Home. The care home is a beautiful place, with beautiful people, (that we have grown up with, well at least two of the ladies). The staff are family as well, being that most of the ladies have been there for as many yaers as the home has existed. The is a large apartment off to the side of the main house kind of hidden, like the secret garden, and a huge garage attached to that. The apartment and the garage are connected, the garage have been converted into an living space as well. Kodin is awake, and my concentration is going..I will return:)
I was writing last time about Kodin and his diagnosis, and when he walked etc. I recieved a message from my friend Rose who moved from Hawaii to Cali years ago, and didn't know I had moved to Wisco and was with Kodin..but read the blog(good news:). People do very often ask what I am doing here. People in -20 wind blinding white covered (buried) winter day here pair that statement with a scoff, or full bellied laugh. Well, let me tell you, that don't know why we are here.
Kodin, after being kicked out of 4 schools (which left him with 0 schools left to attend). (And for those of you that know Kona, that would be, Kahakai, Kealakehe, Holualoa, and Waikoloa). Kodi, and his four hours of sleep a night self (especially back then, he had no meds, and would fall asleep for those four hours when he felt like it, which would very often be early am. Talk about sleep deprivation on my part. He would be fully charged, and I, a confused, crazy looking person. I needed and still need 2 to 3 times that much sleep. And if the world allowed I would in fact get 12 hours of sleep. Now I get 5 on a bad night(3 on a horrible one), and 8 on a good night. Kodin takes Seroquel, a powerful anti-psychotic medicine, so that he slows down enough to learn and enjoy life, and sleep. I will get into that story at another time). So Kod didn't attend school any longer. The DOE told me that in order for children to attend school they had to be diagnosed with Autism in order to get services. Meaning that even though Kodin had Angelman Syndrome, he had to be in this Autism Spectrum umbrella to be qualified to be a student. I always found such a difficult time conversating with anyone about what might be best for my son; I would like to remind you, because of my age perhaps, or that I knew so much about my son, education, and what seemed appropriate learning stages and such. It is relevant because my relationship with the Department of Education is a very long and abusive one. If you continue to read the blog, you too will see why this relationship is and always will be horrifying. It starts with Kodin being tied to a chair when he was in kindergarden, and going downhill from there. I get a headache(no joke), thinking about how many terrible things have really happened because of them. Anyhow, Kod is not in school. He does not fit the student bill at all. The curriculum is designed for another type of child, one who is autistic. The school refuses to teach him sign language, that I truely pushed for. My mother, Kodin's father, and I all took sign language classes in hopes of making his life a better place. They stated he didn't sign properly, so know one would understand..Dolena says, "he is signing, I know what he is saying, if we all work on this together,then perhaps we can communicate?!" We felt that he needed to communicate(I know jerks right) for a zillion different reason. Mostly he needed to say yes or no, eat, drink, bathroom ,pain, more, I want, please...just basic life altering stuff. (He still used the signs we taught him without the school concent by the bloody hell way). {Thank you mom for going through this with me.The DOE took some years off her life as well.} There are so many inappropriate tasks asked of him, so much to learn, so much misunderstanding on the educators' end, then, Kodin starts getting more violent and large than ever. So, with the biting his arm, turns to biting others, he can't be controlled he won't nap, he bangs his head hard and disturbingly on everything, he covers his ears and goes into the fetal possition, he kicks from ground level and spins around as you approach to kick you hard where-ever he can reach, he spits(which he has learned you can throw too), swings an underarm hit(that is swift and not a common swing, so you might not see it coming), and other delights. This all leads to no school. Well there is a pretty amazing story that goes with all the schools, but that shall come later as well.
Kodin lives with me (we are talking about before moving to La Crosse in 2004..cause he had his accident on New Years of 2005) , who lives at my mom's at this point. I used to have jobs and places of my own, from right after highschool actually, but having Kodin 24 hours really put a damper on getting work, keeping work, and paying bills. With no school the possibility of the occasional work week ,with no calls to come get my son from school, was a dream of the past. So, we live at Beverley's in Waikoloa. A care home for the elderly actually called The Way Home. The care home is a beautiful place, with beautiful people, (that we have grown up with, well at least two of the ladies). The staff are family as well, being that most of the ladies have been there for as many yaers as the home has existed. The is a large apartment off to the side of the main house kind of hidden, like the secret garden, and a huge garage attached to that. The apartment and the garage are connected, the garage have been converted into an living space as well. Kodin is awake, and my concentration is going..I will return:)
Thursday, April 28, 2011
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