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:)

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