Thursday, May 12, 2011

May the 12th

Aloha, I haven't been on much lately so I thought I should start with a little Kodman facts
-Kodin loves water
-Kodin has webbed toes, a set on both feet
-Kod would explode from food if he was given the opportunity
-Kodin loves dogs, he is a little scary with most, he wants to kiss their faces and snuggle their little necks off
-Kodin has been able to sign gramma, and his first variation from the first and only thing he could say when he was younger(ma), and made it mamama so he could express his love for her
-Kodi takes a lot of Seroquel, and he is an explotion of crazy tornado(ness) without it, the effects of long term use are starting to show and it makes me sick
-He doesn't like wind, if you have no ac, like my old car didn't(the heat was stuck on mind you), then he will roll the windows up to avoid the cursid air
-Fishing rods are his favorite thing, we tie a toy to the end and he can cast like a master, he hates worms, and fish, and I hate the idea of pulling hooks out of him. I buy more fishing rods than any other human
-Kodman likes watching House

Tuesday, May 10, 2011

I just wrote tons about the weather leading to a beautiful I have been busy with my biggest supporter leaving in a couple was delightfully written and it disappeared..this has happened once before. I lost my umpf..I will write tomorrow:/

Saturday, May 7, 2011

May the 7th

Good morning,
  As you can imagine the night of the stand off was a long one. I ended up moving us to the back yard and not letting him inside for much longer. I made a fire and set up the grill. Kodin looked for bugs, tried eatting some old bok choy that I threw outside (I try to let nature do it's work to the veggies and such instead of throwing it in the trash), and treid to distroy the garage and every planted and growing thing in creation. Kodin may have not made the walk happen, but I hope he knows I mean business. He too can make his very own momma bear tempestuous.  He was thrilled with the fire, having all of my attention, getting to discover the garage, unplanting etc, so it is hard to say who won.  His new white Nikes are all scratched and covered in dirt, his arms where bite up and horrible..we both lost.  It really doesn't matter for days anyway, I looked at the weather; as I do every morning), and it will rain for as many days as the chart allowed me to see.  (In the winter I have to know what is looming outside before I head out there [now I'm just curious if spring is really arriving or not, and bless me it will be warm while all this raining is happening...May showers I guess]).  I am wondering if Kodin's knee is bothering him, or he is affraid it will, it is a lot frustrating not being able to communicate. It was really swollen three days ago, I took him to the doctor last week and it was slightly swollen, his doctor said it might be from the new found walking(the appointment literaly lasted 3 minutes). I gave him an advil and put arneca on his knee before we left in antisipation of discomfort.

I was writing several days before about how we arrived her in La Crosse from Hawaii. I left off with we were at the hospital, Kodin had injured himself, and I refused to leave the hospital. This decision lead to the whole State's DOE, and DOH, the hospital administartion, social workers and some others to try to get Kodi to leave.  With the new group of people looking for a way to get Kodin out of the state, we found a place. Chileda in La Crosse, WI is the only place we could find that institutionalized any child under the age of 14.  It is against the law to institutionalize children in every state (and as I have found out while living in La Crosse, Wisconsin is the most strict about this law). {I want to add that there is a place in Boston that we had researched which took strictly autistic children and might still have been an option, if they hadn't had charges against them several times for abuse and violence-years later my friends Nicole and Julie accompanied me to this place}.  The La Crosse care facility, called Chileda, would take Kodin, but they were at full capacity.  So, in an urgent rush we packed and were assigned some folks to travel with us, I moved Kodin to Wisconsin in February of 2005.

Wednesday, May 4, 2011

May the 4th

sit has been a beautiful day. i have been super excited to go on a walk with kodin all day. i did a thousand errands in hopes to be ready for his arrival. he is in a stand off with me..outside the front door and wont get up. he is bleeding from his arm from biting it open.i am writing this from my phone that refuses to capitilize letters and punctuate properly..except for periods. everyone that has driven down beautiful hood street is staring. it looks like some huge domestic is occuring. i cant pick him up,i tried manuevering him to a stand.he is banging his head against the ground,trying to break the screen glass with his arm, kicking the door open,slamming his arms against the pavement and door.i wont go back inside,cause he wants to,it hasnt been spring yet...and he and i need to back and brain hurts already,and i have done zero im affraid if i get him walking he will freak out along the way but i have to chance it,because he cant just refuse to walk cause he would rather watch tv. i am very sad that we r wasting the day,the wind has picked up,and the clouds are rolling in and im

Tuesday, May 3, 2011


I am not really the master of blogging yet by any means, and this may be harsh and messy. But it's real, and it will never be boring. There is love. So, if others recomment me then someone who cares will read and so on..<a target="_blank" href="" title="Circle of Moms Top 25 Blogs on Single Parenting - Vote for me!"><img src="" title="Circle of Moms Top 25 Blogs on Single Parenting - Vote for me!"></a>

Angelman Syndrome Awareness - revised

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'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:)