I'm sitting here at Arkansas Children's Hospital with Korbin while he tries to sleep with EEG wires pasted to his noodle head. He did surprisingly well allowing the tech to hook him up. Aidan, our 16 year old, was diagnosed with epilepsy at age 3. He had absence seizures until he was about 12. Once he went through puberty they seemed to be gone. With the guidance of his neurologist we weaned him off medication and he's been seizure free ever since.
Honestly we've suspected seizure activity since Korbin was a toddler, but after 2 failed attempts at getting him to cooperate with attaching the spaghetti-like wires to him, the doctors said we wouldn't bother with it unless it became severe or more worrisome. About 2 years ago he started having episodes that set off m my mommy alarms. His eyes kept looking up at the ceiling even though he didn't want them to. Sometimes his head would pull back with it. He was fully conscience and aware. In fact he was fully annoyed by the whole thing. The episodes are back again.
His primary care doc agreed with my assessment so here were are. I'm hoping this isn't really seizure activity, but I know better. Even if the EEG is clear is doesn't negate the episodes he has been having. I'm so grateful every time we visit Arkansas Children's Hospital. It doesn't matter if it's to his primary care clinic or for emergency care, just knowing they are here for us makes getting spaghetti head not so bad... for both of us.
Monday, March 4, 2013
Sunday, March 3, 2013
Korbin's Fantasy World
I figured it was time to explain a little about the delusional place where Korbin likes to hang out inside his head. It started out as a place he called Scorpion Nation. He referred to himself as Empire, leader of the Scorpion Army. His mission was to protect the Scorpion Nation from any invaders, which are mostly paranoid delusions. Some of these things have come to him through TV, video games, books, or just things he's heard and internalized. He knows Yuri is a character in the Command and Conquer video game, but that doesn't stop his mind from making him a real threat that could be stalking him and trying to take his Angry Bird eggs as we walk through the grocery store.
A while back Korbin was scared to come out of a short stay in the behavioral hospital because he feared the Scorpion Nation. They had turned on him and were out to kill him, in his delusion. He was truly scared. I typically don't play into his delusions or hallucinations, but this time the momma bear in me took over and I told him that while he was inpatient I fought them and destroyed Scorpion Nation. He was so relieved and happy that he started crying. Seriously. He felt safe and knew that I was there to protect him from his own mind.
A few months went by where he was still Empire and still leader of the Scorpion Army, who had come with him after the fall of Scorpion Nation. Then came Pig Nation. Yep, based loosely off of the Angry Birds and Bad Piggies games. Korbin is now King Pig. He wants to recruit other kids to be part of the Pig Army, along with the other members who are only in his mind. Thankfully the Pig Nation is not as aggressive as Scorpion Nation, but they are far more paranoid. OK, Korbin is far more paranoid. He says that people are video taping him, trying to take his things or read his mind. and occasionally people are trying to steal his eggs.
I have been doing a little video recording of his behaviors, but I let him know when I'm doing it and he can always see my phone or camera. He's typically not bothered by it, but now and then he gets so angry that he attacks me and the phone. Then again he attacks the phone when he's angry and I'm calling for help.
We're hoping to move soon to be closer to my husband's friend who he works with repairing vehicles. It will also place us closer to the school our oldest son, Aidan, plans to attend after high school. Korbin is excited about being out of this apartment and having land again. He wants to call our land Pig Nation and build his base. We'll build him a lookout tower which will basically be a raised platform with a slide coming off the side. He's also wanting a small yurt where he can plan and stockpile his weapons. Thankfully he still believes that Nerf will defend him to the end, but I can't help but wonder where this is leading. I'm starting to think that he's one psychotic break away from turning into Darth Vader himself. I am a very peaceful person. All of this talk of weapons and aggression pains me to my core. We use peace talks, treaties, and any other form of de-escalation to help him work through his rough times. It doesn't seem to help him feel that he can walk through a store without carrying a tiny Lego gun in his pocket for protection against the unexpected.
He's a work in progress and so is his fantasy land. I won't totally play into this world, but I'll use his way of thinking to help him back into ours. While we were in therapy this last week his therapist had him sign a peace treaty that says he will not harm himself, his therapist, or me. He understands that we will also not hurt him.We all signed it. So far it's been helpful. Who knows how long it will last. Today Pig Nation is peaceful. King Pig is relaxing with a video game before we work on cleaning up the Lego battle that he left all over the living room floor. Tomorrow he has an EEG to see if he's having any seizure activity. We're calling it spaghetti head, like I did with Aidan when he was little and had epilepsy. Korbin says that pigs like spaghetti, so we might make it through without incident. We'll keep our piggy fingers crossed.
A while back Korbin was scared to come out of a short stay in the behavioral hospital because he feared the Scorpion Nation. They had turned on him and were out to kill him, in his delusion. He was truly scared. I typically don't play into his delusions or hallucinations, but this time the momma bear in me took over and I told him that while he was inpatient I fought them and destroyed Scorpion Nation. He was so relieved and happy that he started crying. Seriously. He felt safe and knew that I was there to protect him from his own mind.
A few months went by where he was still Empire and still leader of the Scorpion Army, who had come with him after the fall of Scorpion Nation. Then came Pig Nation. Yep, based loosely off of the Angry Birds and Bad Piggies games. Korbin is now King Pig. He wants to recruit other kids to be part of the Pig Army, along with the other members who are only in his mind. Thankfully the Pig Nation is not as aggressive as Scorpion Nation, but they are far more paranoid. OK, Korbin is far more paranoid. He says that people are video taping him, trying to take his things or read his mind. and occasionally people are trying to steal his eggs.
I have been doing a little video recording of his behaviors, but I let him know when I'm doing it and he can always see my phone or camera. He's typically not bothered by it, but now and then he gets so angry that he attacks me and the phone. Then again he attacks the phone when he's angry and I'm calling for help.
We're hoping to move soon to be closer to my husband's friend who he works with repairing vehicles. It will also place us closer to the school our oldest son, Aidan, plans to attend after high school. Korbin is excited about being out of this apartment and having land again. He wants to call our land Pig Nation and build his base. We'll build him a lookout tower which will basically be a raised platform with a slide coming off the side. He's also wanting a small yurt where he can plan and stockpile his weapons. Thankfully he still believes that Nerf will defend him to the end, but I can't help but wonder where this is leading. I'm starting to think that he's one psychotic break away from turning into Darth Vader himself. I am a very peaceful person. All of this talk of weapons and aggression pains me to my core. We use peace talks, treaties, and any other form of de-escalation to help him work through his rough times. It doesn't seem to help him feel that he can walk through a store without carrying a tiny Lego gun in his pocket for protection against the unexpected.
He's a work in progress and so is his fantasy land. I won't totally play into this world, but I'll use his way of thinking to help him back into ours. While we were in therapy this last week his therapist had him sign a peace treaty that says he will not harm himself, his therapist, or me. He understands that we will also not hurt him.We all signed it. So far it's been helpful. Who knows how long it will last. Today Pig Nation is peaceful. King Pig is relaxing with a video game before we work on cleaning up the Lego battle that he left all over the living room floor. Tomorrow he has an EEG to see if he's having any seizure activity. We're calling it spaghetti head, like I did with Aidan when he was little and had epilepsy. Korbin says that pigs like spaghetti, so we might make it through without incident. We'll keep our piggy fingers crossed.
Thursday, February 28, 2013
Arkansas Autism Resource & Outreach Fundraiser
The support from our local autism groups have helped our entire family. We are eternally grateful for the resources, education, and emotional support they have given us through the years. Please help us support them and come join us in the fun at the zoo!
https://www.firstgiving.com/fundraiser/AnnaKyle/aaroc-zoo-day#.UTAgHA5Oyr0.email
https://www.firstgiving.com/fundraiser/AnnaKyle/aaroc-zoo-day#.UTAgHA5Oyr0.email
A Fresh Start
I've decided to take a more dedicated approach to this little blog of mine. Originally I named it SchizoAutismTourettes-itis saying "... thankfully not all in one person." Well things have changed. Korbin's labels are currently Autism, Mood & Psychotic Disorders vs. Schizo affective Disorder, Tourette's Syndrome, Asthma, Allergies, and Mental Retardation. Our world revolves around trying to keep Korbin IN OUR WORLD.
He just spent 4 months in his 3rd psychiatric residential treatment program. We were hoping they might be able to stabilize his psychosis with medications, but they refused to make changes. His biggest goal was to simply attend school, but they were unable to work him through his social anxiety. We really had a lot of hope for his time in the program, but Korbin's severity and complex issues were more than they expected.
Now he's back at home and riding his usual emotional roller coaster. We got him set up with a CBI classroom, which has been denied to him all of these years. After 3 days in the classroom he refused to go back. Even the small class inside a smaller school was overwhelming. I had set him up to work with the mental health group that provides services at his school, but they aren't really working out either. He's now set up with home bound service which gives him 6 hours a week in our home with a teacher. I'm also working on changing him back to the children's psychiatric services provided by our local teaching hospital.
So now we're home. Every day is a new adventure. Even though he lives in his delusions and is still fighting hallucinations every day, we are doing everything possible to keep him out of the hospitals. I'm planning to share more of our adventures here. Not only for my family and friends to keep up with our lives, but to share with the world our experiences and privilege of being Korbin's family.
He just spent 4 months in his 3rd psychiatric residential treatment program. We were hoping they might be able to stabilize his psychosis with medications, but they refused to make changes. His biggest goal was to simply attend school, but they were unable to work him through his social anxiety. We really had a lot of hope for his time in the program, but Korbin's severity and complex issues were more than they expected.
Now he's back at home and riding his usual emotional roller coaster. We got him set up with a CBI classroom, which has been denied to him all of these years. After 3 days in the classroom he refused to go back. Even the small class inside a smaller school was overwhelming. I had set him up to work with the mental health group that provides services at his school, but they aren't really working out either. He's now set up with home bound service which gives him 6 hours a week in our home with a teacher. I'm also working on changing him back to the children's psychiatric services provided by our local teaching hospital.
So now we're home. Every day is a new adventure. Even though he lives in his delusions and is still fighting hallucinations every day, we are doing everything possible to keep him out of the hospitals. I'm planning to share more of our adventures here. Not only for my family and friends to keep up with our lives, but to share with the world our experiences and privilege of being Korbin's family.
Wednesday, August 29, 2012
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