Thursday, May 30, 2013

Pool Toys Buy Friends

Yeah I do try to teach my kids that friends that need to be bought are not true friends. This is one of my strange exceptions. Playing with Korbin is difficult for most neurotypical kids to understand. He wants a splash war every time he gets in a pool, but only on his terms and rules. With his love for military play I've learned to keep him busy with squirt toys.

Our apartment complex has a variety if kids. Some have attentive parents who insist on fair play.
Others are free range kids who won't hear much from an adult until school starts again. I've discovered that providing a bag full of water guns, splash balls, and squirt cannons gets me a little authority with the unruly kids while getting Korbin the playmates he craves. Yes, it's some wild play that needs constant supervision, but he loves it.

This week Korbin received a new and life changing label. He has Prader Willi syndrome. I'm not going to go into the big details of what Prader Willi is about; instead I'll direct you to Korbin is currently very obese and short. He eats 24/7 because of a malfunction in his hypothalamus. We need to lock all the food, but aren't allowed to alter the apartment. Our lease is up in July so this will change. In the mean time we have to work on getting lots of exercise while limiting his food. If a bag full of dollar toys will get him social time and exercise, then this mom will be buying friends as long as we have access to water.

Friday, March 29, 2013

Easter? No thanks.

I'm all for celebrating spring and rebirth. You see, we are atheist and follow science, not a religion. Most of our extended family is christian. Specifically old school German Lutheran. In fact my mother planned for me to be a Lutheran school teacher and I would marry a Lutheran pastor. Missouri Synod only, not those hippy new age Lutherans. Let's just say that didn't happen.

So here we are celebrating the singing of the birds, new plants budding, and warmer weather when the question comes up. "Are you bringing the kids to church?" I have so many answers, but most of the time I just say "No, you know how Korbin is in strange places and crowds." What I want to say is "My sons are free thinkers. I'd rather not expose them to the biggest brainwashing day of the year, where candy is handed out for believing a story about a zombie."

We have taken the kids a few times. It took weeks to recover. As they passed around the offering plate I handed Korbin a couple of quarters and told him to put them in the tray. We do teach giving. Mr. Literal looked at me like I had three eyes and loudly announced "I don't want to PAY to be here!" All my Grandmothers friends gasp. I giggled and told him "Me neither" as we sent the plate on it's way.

Aidan was going through a paranoid phase, so the talk of an omnipotent being left him laying awake at night fearing someone watching him in his sleep. He still questions why people would teach such a scary thing. It's a more scary idea than Hansel and Gretel.

Religion aside we're facing a holiday with much candy, loaded with red dye #40, Korbin's kryptonite. We've always been super careful and Korbin frequently double checks. So far we haven't had to pull out the ever present Epi-Pen. Not that obese folks have any business scarfing candy. Then there's the big family meal to celebrate another holiday that we don't celebrate. "Everyone stand in a circle to hold hands and pray!" I love the family togetherness. Korbin's remarks at the end of prayers are another highlight. The day he growled "I'm not christian" directly after "Amen" was passed off as defiance. I doubt they'll ever understand why we don't believe the same things they do. I'll settle for a compromise of "live and let live". I don't confront them about how much cash they pour into an organization that doesn't even have to pay taxes. Just back away from the parents teaching facts instead of fiction. Please.

Yes, I'm rambling. Honestly I'm tired and cranky. Since Korbin came home 4 days ago sleep has been sporadic. The change in medicine seems to have helped with the side effects trouble, but he's still a roller coaster of emotion. One minute he's calm and happy, the next I'm trying to de-escalate a rage. We do our best to keep him on some sort of schedule. Unfortunately our schedule has to flow around his mood swings and sleep schedule. Aidan has a friend over tonight who also has autism. I made sure to keep the lights low and noises calm for the last few hours in hopes of them all getting to sleep before 2am. We'll keep tomorrow's stimulation to a minimum in hopes that it gives Korbin the best chance for a good day with the extended family on Sunday. Religion, autism, and psychosis aside, it will be a beautiful day to hang out with the people we love... and maybe sneak in a nap.

Monday, March 25, 2013

Medication Musical Chairs

It's been a week since Korbin went back into the behavior hospital's acute stay program. Stays can be as short as 3 days, but are typically 5-10. The psychiatrists know him (and me) well enough that they were completely open to my request to get Korbin off the Thorazine. His body has been physically reacting with EPS (Extra pyramidal Symptoms) and it definitely wasn't taking care of his symptoms. He does still need an anti psychotic. He's had Zyprexa in the past as a PRN medication. For those who don't know PRN means "as needed". Occasionally folks need a medication to get through a moment. Sometimes when he has a psychotic break he'll become aggressive and can't be kept physically safe from hurting himself or others. Having a PRN medicine can help him through that moment for safety and to avoid more of these acute stays.

Knowing that he's handled Zyprexa well and it's a viable option for his symptoms, we chose it as our main tool to control his psychosis. The Thorazine was already causing him to shake, twitch, and even jerk like he's having seizures. Side effects like this are unfortunately common in high dose and long term anti psychotic use. Changing medication can help, but there's another option. Cogentin can help counter the side effects, similar to the way Benadryl counters allergies. We've added Cogentin to help now and to keep the ugliness away for the long term. Oh and we're going to do a little Hokey Poky and turn the Thorazine around into his PRN med.

Even though I don't care for the Depakote and have been tolerating the idea of the Topamax, the docs say it stays. Yes, he's a roller coaster of moods, but I haven't really seen much difference with the mood stabilizers on board. This is where I have to trust the professionals. They say that taking him off the mood stabilizers can make getting him balanced again much more difficult. Not that he's all that balanced, but can get fare more ugly. I've read the studies and seen it in person. Coming off medication can reveal symptoms that are far worse than before and more difficult to control. It's just one of the many reasons we need to make sure our friends and family stay on their medication.

The one medication we won't go without is Clonidine. Korbin has huge, HUGE issues with attention and impulse control. Using stimulant medications for kids who also have an autism spectrum disorder or a risk of mood disorders usually doesn't turn out well. When my oldest son was tried on one at the age of 3 it sent him into his first manic phase. Clonidine and Tenex are both blood pressure meds that are used for ADHD symptoms in place of stimulants. Tenex was enough for Aidan, but Korbin required the slightly more sedating Clonidine. It's been the one constant in his little pharmacy. It's also been like a magic pill for his Tourette's Syndrome. We had him on a much lower dose years ago when his tics were more mild, but then came the earthquake. His little body wouldn't let him be still. He had to do a full body dance to speak in sentences. Little man's eyes blinked so fast it was difficult for him to see. The neurologist just increased the dose. Almost instantly the tics were under control. Yes, he's still a twitchy, fidgety little dude, but he can physically function again. This week we went from 0.1mg 4 times a day to 0.15 mg 3 times a day. It's not a big increase, but it's a little tweak that seems to be helping with his impulse control.

At least his asthma and allergy medicines are staying the same. I keep them sorted in one of those fancy pill boxes that holds a week's worth of meds separated into 4 times a day. Our pharmacists are amazed by my OCD organizational skills. With Korbin on a total of 9 medications daily, Aidan on 4, and me on 11, it takes neurotic dedication.

Although I strongly dislike taking and giving my sons man made, chemical medications, I do realize that some things are necessary. Insulin, cortisone, and so many others save lives. Psychiatric medications do the same, just not so directly. I am very thankful for these nasty chemicals. Without them my Korbin would be in an institution for life. We'll have many more medication changes over the years. We'll dance around the side effects while working toward the best symptom control. Now will someone stop the music so we can sit down and rest?

Wednesday, March 20, 2013

One Seriously Rough Night

Sunday was pretty rough, but I thought Monday would be a bit better. Korbin was a little moody so maybe I shouldn't have been so optimistic and taken him out for the quick errands. Then again we can't keep him home and allow him to hide in his own mind. We took my sewing to the post office and headed over to the fabric store for serger thread. He decided that it was time to buy toys, not dumb ol' thread. He got out of the van and took off running across the parking lot, right in front of a large SUV. My heart restarted as I ran/limped after him. I caught up with him before he got to the toy store entrance and helped him de-escalate. We walked back to the van where he decided he was comfortable with granting me a trip inside to get my much needed thread.

Once in the store a had my thread in under a minute and tried to direct Korbin to the check out. He went for the craft supplies looking for anything to go with his army guys. This is where the ugliness really began. He pulled books off a shelf, knocked down a display of fabric, and was running for the lamps when I caught him. He scratched me so hard that blood was dripping down my arm on the floor. I was scared to move to get a rag for my own mess, thinking of the mess he could make of the entire home decor area.

He finally seemed calm enough so I ask for a tissue... he bolted for the door. I put the thread on the checkout counter and went after him. He sat down by the outside of the store near a line of shopping carts. I couldn't keep him from slamming the carts against the glass without getting hurt so I gave up and called for the police to assist me in getting him safely to the behavior hospital. OK, I didn't really give up. I let go and ask for help. So anyway, by the time the popo showed up Korbin was in the van and insisted that he would ride safely with me instead of having to ride in the back of a police car. He's been there before and it didn't turn out well for him. I thanked them for the help and we went to our usual oasis of crisis intervention.

Once there it was the same check in that Korbin and I have been through probably 8 times. They call the psychiatrist who agrees that he's a danger to himself and others so they can help him there for 3-10 days. Yes, checking my baby into a mental hospital hurts, but it's a hurt I've felt to many times. Knowing I'm doing the best thing for his long term outcome comforts the sting... a little. I drove home where my Jason was cooking dinner and Aidan should have been cleaning his room. As I took off my shoes and put my purse away the phone rang. It was a nurse letting me know that they did an EKG on Korbin as a precaution because he's on such a high dose of anti psychotics and they planned to change medication. His QTc was to high and so was his resting heart rate. The psychiatrist said that he had to go to the local children's hospital for a heart workup. Once he's a patient in the behavior hospital I can't be the one to transport him so they called for an ambulance. One of their staff followed and I headed back out to meet them.

It was a long ugly night. Korbin was still very agitated from the day's events. He did allow them to put in an IV to take blood, but came unglued when he saw that they were going to leave it in for medication. I was able to distract him with episodes of American Pickers and Diners, Drive-Ins, & Dives. We used the multiple EKG stickers to make little ships and blasters to battle on the stretcher. About midnight the doctor said that his heart was normal enough to go back to the behavior hospital and change medications. Korbin wanted to go home, but he had to go back for his safety.

When the non-emergency ambulance finally showed up about 3am he was asleep. It was the last of the calm. He decided that he was NOT going back and proved to us how serious he was. Over the next hour we ended up with about 8 security guards (mostly off duty cops), 2 EMT's, 1 doctor, and countless nurses trying to physically get Korbin on the stretcher and to stay on it. A shot of Ativan only made him into an angry drunk. I had to stay out of the way and hide my emotion as much as possible while the team strapped, tied, and restrained him. He has always been quite the little Houdini. We finally got him safe to transport. Thankfully the ride back to the behavior hospital allowed him time to calm down. When we arrived I helped untie and unstrap him. He got up and walked to the back without so much as a goodbye. He went straight to his unit and slept until 10am.

The doctor has already changed him from Thorzine to Zyprexa and added Cogentin to counter the side effects of it all. He had an EEG a couple of weeks ago because we thought he was having seizures, but they think it may be EPS (Extraperamital Symptoms) from the Thorzine. Over the years I've had to get help, the hard way, for my first and second mothers in law. Those events were nothing compared to the pain of having to allow people to force my own baby to get the help he needs for his own mental health issues. I can't imagine the trauma he must feel. I don't want to imagine. Two days later I still can't process my end of that night.

As of today he's handling the new medication well without side effects. His heart is still happy. The nurse said he was trying to make friends with some boys who were causing trouble so she redirected him to a more suitable group of kids. He still won't talk to me on the phone, but that's his usual. People aren't really important to him unless he needs something. Once he decides it's time for a new toy from home he'll get on the phone long enough to tell me which Angry Birds to pack up. Weekends are visitation time and we should be able to see him tomorrow during family therapy. Over the last 7 years this has become our version of normal. Phone time is 7-8pm weeknights. Family visits are weekends 2-4. Make sure all the clothes are labeled and nothing has tie strings. Buy shoes with straps instead of laces. Always keep extra socks and undies on hand because they never come back home. These things I can get used to. Nights like we had Monday? I hope I never EVER have to get used to those.

Saturday, March 16, 2013

Mindfulness and Neural Integration: Daniel Siegel, MD at TEDxStudioCityED

No prefrontal cortex left behind! Dr Siegel explains how the anatomy of the brain effects our mindfulness.

Thursday, March 14, 2013

Teaching Empathy

We've been trying to teach Korbin about feelings since he first refused eye contact as a newborn. We show him the face he makes, verbalize what the feelings are labeled and their mean, make feeling faces with him, and let him know how his actions effect our feelings. It seems that he just doesn't have that internal compass to guide him through our strange emotional world. I wonder if he has the ability to even care about anything beyond his own needs. It scares me to my core.

Yesterday he wanted to play outside with the other kids.  He grabbed his folder of Pokemon cards that he earned one by one with good behavior and went out front. He was playing so calmly and happily with (or beside) another boy that I wasn't to worried about running inside for a little potty break.

When I came out the front door Korbin was walking up, without his folder. He said he gave it to the other boy because he didn't have any toys and was neglected. Not that Korbin really knows what it means to be neglected, but for a moment he seemed to understand that the other boy didn't have as much as he does. I encourage giving and want him to feel this urge to help, but did it have to be the carrot I've been dangling in front of my stubborn little ass? Come on! He has a room full of toys he rarely uses. Couldn't we give him a box full of those? Well, I shouldn't complain about any feelings of empathy. Now what am I going to use to get him in the tub and to pick up the Lego mine field in the living room?

I'm just not understanding why he would feel such compassion for this child he just met, yet he feels no remorse for attacking his own mother. During his behavior therapy time today we discussed ways of teaching empathy, but it was really nothing new. I know there is a good heart in my baby boy. He's really a sweet, loving child. Hopefully continually reminding him that he has feelings and so do we will sink in a little more deeply each time. I do worry about his future every day, but I've seen him improve every day for the last 12 1/2 years. I do know that he feels the support and love we give him as we choose every day to never give up. We can only hope that one day he connects those feelings of love from us into empathy for others.... even if it means giving away Pokemon cards.

Monday, March 4, 2013

Spaghetti Head

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.

Sunday, March 3, 2013

Fluffy Friends

The least worrisome members of Pig Nation are machine washable.

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.

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!

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.