Tuesday, July 26, 2011


I haven't been on here for a very long time, because it takes light years for the 1000 year old Think Pad to turn on. It takes half an hour to power up, 10 minutes to open your browser, and gawd forbid you actually ask it to look something up. It's maddening. If I still had my laptop, then i could turn on the computer at a whim and write to my hearts content, but alas, i do not have two hours to navagate to this site and write. believe me, I need too.
Yesterday, Kodin came home with scratches on his neck all over and a huge one up his back. Two weeks ago same thing, but bleeding(he now has a scar). I first went to the bus and asked if i could ride the bus to school with him and see whats upsetting him so much. That didnt fly, so i ran to the truck, beat the bus to school and when he arrived, i asked what transpired on the bus. I was told the girl(attendant on the bus) was angrily saying," what, he can't talk or something!!" I of course, know this is not how one talks to Kodin and if she had a problem this whole time she had beenj riding with him to school and talking to him like that, then thats why hes upset. Could you imagine being badgered by someone ..who is obviously upset with you, and you cant answer them, and become frustarted by angry tons and body language??!! So while Kodin is at school for the amazing 3 hours from 9-12 (actually thats when he leaves and gets dropped off:(  it takes him the whole time to calm down. At Kodin's school I was told by everyone I talked to (3 girls in particular), that the woman yelled and stomped her foot, and today..swore at Kodin. Um what??!! There are a max of 5 children on the short bus to Chileda(there were three children last school year).How can an employee not know that a special needs child can't talk, or what to be careful for. Why as a mother am I constantly filling out paperwork about kodin for people that dont read it. Seems they are responsible for my child when i am not around. Scary, scratches coming from different directions on his neck, digging into his neck, a shirt burn from pulling on his shirt, and scratches coming up his back, as if someone is above him.
Needless to say, the bus company was rude to me, never called back, and when I called they said they have videos with sound and nothing happened..and i dont get to see them. When i had to call them back after the whole day of being told the girl on the phone whould talk to her boss, and no return call..I asked if I needed to get an attorney to view the video tapes taken on the bus every am. She said I would have to take it up with the DOE to get permission. They have already called to say they are working on it. Its all bullshit. Why doesnt Kodin have legal and mandatory IEP meetings? Why doesnt the DOE in Hawaii give this state the f***ing paperwork they require to continue his care here??? They dont have the child, he doesnt live there any longer, what is the purpose? They have told the head of DOE special education here a zillion times that they will send IEPs and much needed paperwork, it doesnt happen. How can the DOH not provide services. Why cant anyone tell me where my son is getting beat up, and why dont they care? Why do these people have these jobs?!!!
I am terribly sick, very angry. Kodin has no school for another month starting Monday. We sit, we eat, we grow..we go outside and horrible distruction. I went to the store on my way to a bbq two weeks ago to pick up margarita mix for a friend, Kodin threw himself on the ground in the wine isle and proceeded to kick and distroy zillions of bottles of wine, glass and red wine everywhere, hes too big to pick up, it was 115 degrees (heat index), so the child was sweaty and wine covered(not bleeding-miracle)-twirling around on the ground, hand sover his ears, kicking as hard as he could. Eventually I was assisted by two very brave men to carry him outside, where it proceeded for another half an hour. The stares the looks, the laughter, snikering..awesome. I was so worked up from trying to carry him and stress..i almost threw up. Right now, i want to cry and throw up. This life is rediculous, dangerous, sad

Tuesday, June 7, 2011

June 7th, 2011

I feel scared to leave the house when times get bad, like they very much are.  I would also like to add that I feel very guilty for not writting for so long, the guilt of that just kept building, till I truely thought I wouldn't enjoy this outlet for feelings, again.  My councellor suggestedn this probably wasnt the best idea, since the blog was created to help me feel good, not worse. I really wish I could find the energy to write more often, or if even the blogger worked better on my phone, because so many huge things happen daily.  So many; I believe, that I am overwhelmed. Yesterday confirmed, I have hit the bottom. I am exactly where i was 6 years ago. In a scary place, with no help, no money, a dangerous spot. I called the police yesterday because i couldn't get him up. he hurt me, was super violent, and listens to nothing. I called an attorney to help me find a group or even one single attorney that may assist those that have special needs and are being abused by the system. Kodin should be going to school year round. Because he hasnt had an IEP, which was supposed to occur before he moved in with me. At that time the team should have developed an appropriate plan for Kodin's safety and goals for education. The DOH was to be included; we should have been assigned and met with a social worker who was to do an assesment.  Both parties should have met with and devised a plan together, before he was removed from Chileda. We have no services for two months, unless you count the 3 hours a day during the week..starting in July.
Kodin woke up at 4:30 yesterday and today. I am exhausted. It was 100 degrees yesterday, and will be hotter today. Kodin rolled down the window, bypassing the child safety lock by letting himself open the door from the outside- jumped out of the car yesterday. Kodin flipped out at the store when I went to buy his fishing rod, smashing the counter with his fist, not holding my hand, but twisting my wrists till they feelmlike they are gonna snap,squeezing my hand to death, reaching over the counter and grabbing the phone,picking up the sensor remover, and smashing that on the counter next to us,swinging at me,slamming the door,running in front of a car, Smashing the windows in the truck with his hand and head. At the beach, he grabbed people, tried to club a baby seal cute girl for trying to take his fishing rod, ran away from me swinging , back and forth up and down the beach. He ran into everyones safety zone, in between intimate, mother child moments,sand everywhere, threw and kicked sand at/on me, cast his rod at people, no perception of boat traffic and to stay out of the way..I'm obviously right there,but with him running away from me now always..he's so much more dangerous. And he f***ing laughs at me. I know Angelamn Syndrome children smile and laugh "inappropriatley," it doesn't make it less madenning. Speaking of, I am not taking yesterday so well. Feeling scared, exhausted, lonely, and heartbroken. It's finally the summer I have been waiting for, and I am seriously in debt, no longer have my supporter Corrie, and have my crazier than ever child all to myself. The police were nice about Kodin yesterday, but I forsee way too many 911 calls in my future, hopefully none of them are because one of us has gotten seriously injured, he has hurt me every day for as long as i can remember. He chokes constantly, his weight is skyrocketing, we r hot, he won't stop going out in the water, can't go to the store..this is so wrong.

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 afternoon..how I have been busy with my biggest supporter leaving in a couple weeks...it 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 walk.my back and brain hurts already,and i have done zero walking.now 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="http://www.circleofmoms.com/top25/single-parent?trk=t25_single-parent" title="Circle of Moms Top 25 Blogs on Single Parenting - Vote for me!"><img src="http://images.circleofmoms.com/images/moms/link_badge.png" 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 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:)

Thursday, April 28, 2011


video of Kodman's hands after years of meds:(

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April 28th

I just somehow erased this wonderful huge amount of info..crazy frustrating.
So, anyways..Kodin was born on June the 19th 1995, in Kealakekua, Hawaii. He weighed in at a wopping 9.5 pounds. He never lost his birth weight as children customarily do. He thouroughly loved his life of sleeping and eatting. Sam Choy (a chef that makes generous portion Hawaiian style grinds), said Kodin should be the first "haole Sumo." (Haole means all sorts of things, but mostly that he is white). Kodman wasn't very vocal and hardly cried. I was going to college taking Psychology(which covers human development), Early Childhood Education (also covering development, and Human Biology (guess what, yup,human development). Besides learning about human development, I must have read hundreds of books about babies coming into the world and blooming wonderfully from there. Not a ton of anything was happening. There was no babbling, no crying really either. Kod didn't start to walk till he was 2ish. Around 2ish his father and I seperated as well. I enrolled Kodin in a program at the Department of Health, an infant and toddler program. I learned that Kodin was worse off than most, and that I should consider coming to grips with the idea that my son had some very serious issues. Convincing yourself is one thing (not a super fun thing might I add)..convincing others, that I was not a jerk, as they assumed, but really needing to accept this in order to move forward, devise a plan and get things accomplished. P.S.I am a young mom at this point..I was 21 when he was born. Point is, I wasn't taken very seriously with my lamenting. Kodin was staying at my friends during the day so I could work, until she called and said he really needed one on one attention.

I will return. Kodin didn't wake me up at 5 am like he loves to do (lame), I couldn't sleep, and now that I have re-written this whole chunk of info, I feel very sleepy. And, although they are replacing the roof next door and it sounds like they are doing my roof..I gotta sneak these luxuries when they present themeslves. I usually have millions of appointments,errands and such, but the weekend is almost here and I am stealing today for me, the phone is an explotion of calls..this kid and myself generate a ton of communication (most of which get us no where, or provides nadda). I already had a call from Kodin's teacher (who is awesome btw) who was filling out paperwork, and needed some answers, and pretty sure the bank called about my overdraft..so phone is totally off now. We shall continue later...

Wednesday, April 27, 2011

April 27th,2011

I want to start by saying that this is a brand new idea for me.  I will try harder to check my spelling and such as I go on. I have so much to say and have to start with a little overview of our situation for those that don't know. I know I said I would start with meds today, but that seems pointless if new people have no idea where I am coming from. So, a little info sounds like a great idea:)
Kodin was born in Kealakekua, Hawaii on June the 19th,1995...and his bus just arrived..so,I have to go:)

Tuesday, April 26, 2011

Tuesday, April 26th Weight Gain continued...

I mentioned earlier today Kodin moving into my home from Chileda(where he used to reside), was  a reason why Kodin has gained an uncomfortable (for him, and school, and myself)amount of weight as of late. For Kodin's sake, I'm sure it uncomfortable to move around with this new found weight. He sweats abnormally as it is, extra weight is an unnecessary sweater. It makes it difficult to get up from his beanbag chair I have noticed:) The school always fills me in on his monsterous spikes when they weigh him in. It must seem to them that some serious controls need to be placed in the home; I believe it has more to do with locks and disabling tools that prevent the guy from getting at stuff (ones I have no money to put into affect). He is not being pampered by food, as they must assume. I admit, I was a little lost as to how to handle the new found situation with my son in January, I ordered pizza and succumed to the candy "reinforcemnt" program Kod is accustomed to. It didn't take long to realize, pizza is expensive, and daily shopping was out of the question. We eat good things now ($considerably expensive), but we eat and don't exercise. Come on Spring. That leads into reasons I am concerned about the weight gain. I am concerned, because with his lack of exercise (is unhealthy,) is my lack of exercise. Kodin has gone from a 32, to a 36(tight). I have gained 15 pounds(since January). When the weather is nice; I have learned, we can walk together. It's lovely that the areas closest to us have no major hills, our walk from our house to downtown La Crosse is seriously..flat (unlike our stomachs;).  We can both walk together, and he holds my hand(mostly). The weather has to be nice though, that we don't have. It is 40 degrees right now. Ug, snow storm the weekend before last. So, if it's nice there is something we can do that is only life threatening 50 percent of the time. The other 50 percent is when he overpowers me and wants to go in another direction,or keep walking into the street at a busy corner,or take off at a run (which he only does when there is danger-he NeVeR runs otherwise-he can run towards). I have some very creative and quick moves to try and prevent any major incedents. We are alive, but our chances of injury will increase with the wonderful sunshine..whenever that shows up. I hate Kodin being so uncomfortabley large, and it just gives people another reason to stare. And, jeans are expensive!! This child is expensive; sweet, loves his mom, wants to be good(mostly), but expensive. I think his breathing is deeper and more labored and he snores louder as well.
I should mention that Kodin is a teenager, and I have changed his meds as two other contributing factors. Teenagers need to eat more, beacuse they need the fuel for the energy and growing, I get that. But, he should be running around as a teen, doing crazy, energetic, adventurous, dangerous, boy/teen stuff. He isn't. So, therefore..outward growth far surpasses upward growth.
I have changed Kodin's meds..and that is where I will start tomorrow..Good Night

Kodin relaxing with his friend's dog...so sweet

Kodman on Jami's trampoline

Kodin watching tv with mom

Kodin Christmas w/dino

April 26, 2011

Kodin has a very limited ability to learn new things. His attention span is extremely limited, it can be non- existant if he is overly excited (too many outside stimulants add to this; excess movement, noise, people, loud noises, more than one thing he likes-like a dog, and a small child..or just a dog, or small child:). Good news though, when he does learn something new he is eager to use it. I taught him how to peal a mandrine orange last night. He had already tried to bite it..so a piece was missing. He was sooo excited for himself. To celebrate he shoed it in his face in two large pieces. This am, he was trying to shove an orange in his pocket as he left for the bus. I had givin him one as soon as he saw them in the bowl on the table when he wondered into the kitchen half awake...but equiped with one he can now share his discovery with others. He really does things he is taught to make those that care for him happy, but with the orange, he can show off his skill and eat.
Eatting..oh..Kodin and eatting. Not good. Kodin has always eatten too much. He doesn't understand the concept of choking,or exploding from food intake. He is pretty much in the midst of a major weight increase. There are several reasons for this actually.
The first reason Kodman is gaining astronomical amounts of weight is due to the fact that he moved in with me in January from the institution Chileda, where he has resided for the last 6+ years. Kodin's funding got cut from Hawaii Department of education that has been trying to detatch from being responsible for his care since they started.  Sooo, anyways, here we are Kodin back with mom (who by no means is equiped to care for my very large and sometimes dangerous child). My house, unlike Chileda, has a fridge with food in it at all times, unlocked cuboards with..food..I know, whats wrong with me?! Chileda is contracted out with a nearby hospital (Franciscan Skemp) to provide meals that they deliver for all breakfast,lunch and dinner(supper in Wisconsin). If Kodin wasn't hungry or perhaps busy doing something he thought was more important at the time, then he missed that meal..or it was saved for him, but then he might not like it anymore. Point is, there wasn't always food in the fridge. I tried to go shopping every day, but that is straight rediculous if your child teeters precariously on top of a bench so you can try and safely get him into a shopping carts. (Visualize a 200 pound male, at about 5'6 who is very clumsy and perhaps more interested in the people and cookies(that always seem to be located in large quantities by the front of Walmart(which is the only place with a bench right by the carts)). Danger right?! Anyways, after getting him in the cart you have to constantly stear clear of people and displays, while towing another cart behind you..fun stuff. Kodi has long arms. Seriously fast, long arms. He can't brace himself from a fall to save his life, but he can whip a box of chocolate off the shelf and have it open before you have realized there was chocolate in the veggie area. So, while yelling "HI!" at the top of his lungs, constantly..in his now very male, teenage voice (intimidating), at all who get anywhere near us..he tries to swip hugs and hands, and hit people to get their attention. He is grossly strong btw, so an innocent swat, or grab can be painful and harmful. A little person too close to the cart can eat metal in a split second. People don't like getting grabbed, or hit. Just saying.
I don't go shopping everyday, so we have a fridge with food. There is no way to lock the fridge. I could buy a new fridge; no I couldn't, I don't have money, and the locks are made of plastic..not metal. So he can get in. When he is home he wants to eat. We have good food (thank you mom..and I thank her because fruit and veggies for a 200 pound child are cha ching$$). I am always cooking or being buried in dish disaster. When it's so brutally cold, outtings lose their omph. So we get big when it's cold.
Reason number two for gaining weight..brutally cold winter, and just so happens this spring as well. And i shall continue later...

Monday, April 25, 2011

Kodin April, 25th-Monday

Aloha, my name is Dolena Brand. My son, Kodin has a rare genetic disorder called Angelman Syndrome.  I am looking for a place to express what Kodin is all about. How he is different than any other person, and how we deal with that.