I kept meaning to update this blog, and more stuff kept happening, and all the stories in my head were getting longer and longer, and I was falling into bed exhausted every night. So I'm behind...and a lot has been going on. So for the people who keep up with us, here it goes: (And I hope I don't sound whiny.)
Korban has been on Risperdal for quite some time now. It's one of the only medicines that is FDA approved to treat irritability associated with autism. Over the summer, we decided that maybe the Risperdal wasn't doing all that it needed to do to help him. We added Celexa to help with his anxiety, and couldn't really tell any difference. He also got a rash, and the doctor was afraid he had an allergy to it, so he took him off of it. (Incidentally, we figured out later that the rash seemed to caused by him picking at his skin. He does it so fast, we hadn't noticed that he was actually pinching himself. It looked like he was just rubbing the rash. So I'm still not sure if he ever had an allergic rash, or if what appeared to be a rash was him picking at himself all along. At any rate, he was off the Celexa.)
Before school started, his doctor weaned him slowly off the Risperdal and changed him over to Abilify. It's in the same class of medication as Risperal and we thought it might help a little more. Initially, it seemed to be working really well. He did great when school started back. His teacher even commented that he seemed so much calmer and happier than he did over the summer during their kindergarten camp week. But the pinching and picking at himself continued to escalate, and we began to wonder if it wasn't some weird side effect of the Abilify. It's hard to know what's "just" the autism sometimes, and what other things in the environment are affecting him. Also, he began to have some pretty significant behavioral issues at school. So we decided to give another anti-anxiety drug a try, since we know he has pretty bad anxiety issues. His doctor prescribed Buspar along with the Abilify. Again, no significant change. And for us to agree to keep him on a medication, there needs to be a positive difference in his life. So during his monthly check-up at the dr, I asked if we could just wean him off both medicines and start fresh. The dr agreed that this was a good plan, and said that he really didn't think Korban's behavior would get any worse, since the medicines weren't working very well for him anyway. I agreed with him, and let's just say I have totally eaten those words.
We weaned him off his meds, and I was pretty excited to be medicine free. He seemed to do okay at first, but as time went by things began to get worse and worse. There was a big uptick in screaming and aggression. He continued to pick at himself and leave bruises from all the pinching, although his skin doesn't look quite as bad as it did. He started throwing things and having more severe meltdowns. It was getting harder and harder to calm him down. He also started attacking his aide at school, every single day, pretty much all day long. He would pinch her, hit her, and try to bite her. She's a really nice lady, and he loves her, he just has a tendency to lash at whoever his primary caregiver is (usually me!) but while he's at school, she's his "person." I was really worried about her and afraid she would quit her job. She's really good with him, and I didn't feel that it was any sort of personality conflict between them or anything. He also pinched his teacher and pulled the teacher's assistant's hair. He sometimes pinches the other children and pulls their hair, too. One day he slapped his assistant's glasses off her face and bent them. I felt terrible, and didn't know what to do. One day they took him to the vice-principals office so that she could help them out, and Korban threw his shoes at her and tried to bite her.
A lot as happened, and I've probably forgotten to mention some of it already. Korban had a very bad day at school Friday. That was the day he slapped his aide and bent her glasses. Sunday he had an asthma attack. Monday I kept him home from school and took him to his regular dr to get him checked over to see what was going on. Although he is verbal, he doesn't always tell us when something hurts and weirdly, he doesn't usually run fever when he is sick. Wonder if that's part of the immune system issues? Anyway, his throat was red but his strep test was negative. So she thought he was just having sinus trouble and we decided to hold off on the antibiotics. He was due for his IvIG infusion that Friday, so we thought if we could make it 'til then, that would get him over the hump, so to speak.
Also, Brad and I had been talking and trying to figure out what we could do to help Korban out at school. We know he's getting over-stimulated, and wondered if the cafeteria was just sending him over the edge. At his old school, they ate in the classroom, so he had never been exposed to that environment before. He usually pinchs or hits at the children seated next to him at breakfast and lunch, and sometimes he gets upset and throws up. So we asked if I could just bring him into school late after breakfast and then they could let him eat his lunch in the classroom. Not a big deal, since I send his food anyway. They said that was fine, so Tuesday I took him into school late. I told them to call me if they needed me, and I was on pins and needles all day waiting for the phone to ring. Around 1:00 it did. Korban's teacher asked me if I could come pick him up. She apologized for having to call me but said he had gotten completely out of control and they felt like he was a danger to himself and the other students. So I grabbed Selah up and we raced off to the school. I found out when I got there that he had been hitting and pinching pretty much since I dropped him off that morning. He also was throwing everything he could get his hands on, to the point that they had to clear his desk off. After that, he jumped up and grabbed another's student's pencil box and threw it across the room, where it smashed into the wall, scattering it's contents everywhere. Due to a miscommunication, they did wind up taking him to the cafeteria at lunch. He tried to bolt out the side door (bolting is so scary!) and then laid down in the floor and rolled around screaming when it was time to line up. When they got back to the room after lunch, he started flipping the desks over...and that's when they called me. They were so nice about it, but I just felt terrible. When I pulled into the school to pick him up, I saw other kids out running and playing on the playground and I just thought "Why can't my son be happy like that?" And I don't usually let my mind go places like that, but I was pretty down. (Did I mention that the week prior he was put "on a break" from OT and Speech at the place where he has gotten therapy from since he was three? Again, due to aggression towards the staff, and crying, which only started in the past several months. He had always loved to go before then and had never had any major problems.)
Anyway, the school staff has been very nice and supportive, but I know his behavior is frustrating and we just don't know what to do to make it better. Nothing seems to be helping. Just as an aside, people often ask us why we don't just "tear his tail up/wear him out/etc. etc." I have a newsflash: YOU CAN'T BEAT THE AUTISM OUT OF SOMEBODY! *Deep breath--stepping off of that soapbox* There was a behaviorist at the school to observe Korban on Tuesday, so I guess at least he got an eyeful. He is working on putting together a behavior plan for Korban. Also, the school district has somone who does ABA coming out to work with Korban as well. They also have a box of sensory equipment in his classroom. Brad and I have done everything we know to do. But it just isn't enough, and I don't know what to do next. I talked to his teacher and we agreed behavior has been worse since completely coming off of his meds. I told her I would call his doctor and also that I planned on keeping him out of school until things settled down a little. I can't in good conscience send him when he's being like that. It's not safe for him or anyone else, and even if I'm not there I still feel responsible.
So with a heavy heart, I loaded up the kids and headed home. When we got home I gave the kids a snack, and then gave Korban some Benadryl. His doctor had told me the day before to give him some if he seemed like he felt bad, so I thought it would help. She had also told me to give him breathing treatments to help with his wheezing and congestion. So after the Benadryl, I gave him a breathing treatment. He fell asleep but popped back awake as soon as I got up from his bed. He asked to go outside, so we went outside to go for a walk. He loves to walk this trail that is back behind our house, up into the woods, and it calms him. He loves to pull the wagon or push his toy lawnmower. We have an old Power Wheels Jeep that needs a new battery, and for some reason Korban wanted to push it that day. It's pretty hard to push, but he's strong and he was doing a good job. I pulled Selah in the wagon in front of Korban and he was pushing the Jeep. About halfway up the trail, I noticed he stopped. I stopped too, and waited for him but he didn't come. I called back and asked if he needed help and he said no. So I stood there and waited a little longer, and he suddenly turned and started running down the trail, back towards our house. I didn't want him to get out of my sight, so I started running behind him. Selah got out of the wagon and ran after me. When I caught up to Korban, he spun around and turned on me. I've never seen anything like it. He was totally in a rage, and I don't know why. It was scary. I told Selah to RUN and get back in the wagon. She was scared, though, so she ran to me. I scooped her up in my left arm and tried to fight Korban off with my right. He was pinching me so hard and clawing at me. I was basically just trying to stiffarm him, and keep him away from us without hurting him in the process. He was tearing my arm up. He was crying, and Selah was crying and yelling "Please don't hurt Mama! Please don't hurt Mama!" It was awful. And even though I do my best not to lose control in front of my kids, before long I was crying too. That just made it worse. He gets upset if anyone cries and he was yelling "Are you sad?" as he continued to attack me. Selah was nearly hysterical, wiping my tears and saying "Please be happy, Mama," over and over. Pitiful. At some point, I decided that if I could just hold him I could get him to calm down. So I pried Selah off of me and tried to pick up Korban. He was stiff and kicking at me. Tried to bite me on my face, so I sat him down. I made him sit down on the ground but he was STILL lashing out at me, so I held him down and just tried to keep him from hurting anyone. He didn't like being held still, so I told him I would let him up if he would stop hurting me. At some point during this struggle, I had dropped my cell phone on the ground. When I let Korban up, he grabbed my phone and tossed it out in the woods. I couldn't go looking for it, because that would've meant leaving Selah unprotected and I wasn't sure what Korban would do. So I forgot about the phone, but it was unsettling knowing that I couldn't call anybody for help if I needed too. Plus, we were in the woods for crying out loud. I picked Selah up again and was holding her and Korban bit her on the knee. Thankfully, it didn't break the skin but it did leave teeth marks. He'd never bitten her before. I tried to restrain him again, and at some point I decided that if we could just get back to the house we could go for a ride. That usually calms both kids down and I thought that would be our best bet. Brad's parents were supposed to be heading out to visit and help out with a few things that afternoon, but I figured I could leave them a note. I somehow managed to get back to the house. When we got inside, Korban flew into a rage again. I locked Selah in the bathroom with me to wait it out. A short time into this tantrum, I heard glass breaking. I told Selah to stay put and flew out of the bathroom to check on Korban. We were very blessed that he didn't manage to cut himself, but let's just say my porcelain doll collection had been significantly reduced. That was the least of my worries at the moment. I steered both kids around all the shards of broken glass and went into the kitchen to fix Selah a sippy cup before we left. Right before I could screw the lid on it, Korban slapped it across the counter, spilling milk everywhere. I left it like it was and hauled everyone out to the van. I knew I needed to buckle Korban in first and get him settled, so I sat Selah in the driver's seat for the time being. I was just trying to keep him away from her. As I was struggling to get him strapped in (he was bucking and kicking) he pushed away from me and stood up. He reached over the seat and Selah began to scream. He handed me a handful of Selah's beautiful curls. So sad. I got him buckled in, got Selah calmed down, and then strapped her in her carseat. He still managed to reach over and pinch her even though he was buckled in and I was afraid we weren't going to be able to take a ride, but he actually did settle down once I got out on the road. I probably didn't even need to be driving--I was a mess, and still crying, but that was the best bet for calming everyone down right then, so I drove. I was worried because I left my house unlocked with it looking like a crime scene, and my phone was still out in the woods somewhere. I knew that Brad's parents would be worried if they showed up, and I never got to leave them a note. Selah fell asleep before we even reached Iuka, and Korban was very content to ride and watch Veggie Tales. I didn't know where I was headed, I was just driving. We crossed the state line into Alabama (which wasn't that far from my house--we live close to the state line.) I saw the sign for Riverton Rose Trail, and I turned onto it. It's a pretty drive that goes down by the river with lots of pretty homes. One house in particular I love. It has these statues of horses in the big, rolling yard. They are colored just like real horses, and when I saw them for the first time as a child, I thought they WERE real. I've always loved those silly horses. So as we were riding, I was pointing things like that out to Korban. He loved looking at the water and kept asking me if we were in Florida. Ha! I wish! I tried to comfort myself with the fact that we do have a lot of great memories together as a family. Much more good than bad. And I was trying to hold on to hope that things would be better. They have to be! Because if I wasn't still at least a little bit stronger than Korban, I would be seriously injured in the woods. Just stating facts. It was horrifying. I kept telling myself we have to get the aggression under control, because if we don't, what if, what if, what if???? In some ways, it would've almost been easier to comprehend if a stranger had stepped out of the woods and threatened us. Then, flight or fight would've kicked in, and I would've tried to escape with the kids. If that wasn't possible, then I would've done whatever I could do to hurt that person before they could harm my family. But when your own child is attacking you, all that stuff is out the window! There is no flight, because I can't leave him. He can't take care of himself. He might hurt himself or wander off. Not an option. And I won't hurt him. I will try to protect myself (and certainly Selah) from him. But how do you protect yourself from your own child? How do you protect one of your children from the other? And perhaps most vexing of all, how do I protect him from himself?!? I don't necessarily have those answers. Just doing the best we can, and worrying that it isn't good enough. That day, I drove until Korban started asking for something to eat, and then I headed home. He fell asleep right before we got home. Since both kids were sleeping, I parked the van on the trail and got out to look for my phone. That was such a crazy time, and I couldn't remember exactly where we were standing when he tossed it. I don't think I would've found it if I hadn't have heard it ringing. I was able to locate it right after the ringing stopped. Which was really awesome, because as soon as I picked it up, the battery went dead. So I'm very thankful I found it when I did. Not long after that, Brad got home from work and at least I had backup. His parents weren't able to come that day, so it was a good thing that they didn't come and find us gone and the house such a wreck.
Earlier that day, I had called the dr that prescribes Korban's medicine. He wasn't in that day, but I left a very detailed message explaining what was going on and asking to go back on medication. I also called the pediatric neurologist Korban sees and requested an appointment. They scheduled us exactly one month from the day I called, which seems like a long time but is pretty quick for an appointment with a specialist. A few days later, the psychiatrist's office called me back to let me know that he was calling in a new medicine for Korban. He called in Trileptal, which is a seizure medicine that is also used to treat mood disorders. Interesting, because we know Korban has subclinical seizures (seizures that show up on an EEG but don't necessarily have an outward manifestation). We have wondered if the seizures were contributing to his impulsivity and aggression, so we felt that maybe this was a good choice. It also has a low risk of side effects, which is a huge plus in my book. (Some seizures meds have really scary side effects!) He's been on a half dose of the Trileptal since Sunday. We increase to a full dose this Sunday. We have seen some improvements. He is still having issues with aggression and meltdowns, although it is easier to calm him down and console him now. He is struggling with OCD type issues, and increase in stimming, and a lot of "silly" behavior like being really hyper and laughing hysterically. I'll take that over the aggression any day though! He still hasn't returned to school. Although we are proud that he is in a mainstream classroom, we are starting to worry that we've put him in over his head. That's its too much for him. As Brad said "Everyone's expecting him to act so normal, and he's just NOT!" No, he's not. And I happen to think normal is pretty overrated anyway. But the point is, I'm worried we've put too much pressure on him. He was doing so well at first, but it just went downhill, and I don't know if we can get it back to where it was.
I know this a really long post, and I really don't want this to seem like I'm trying to get pity. I feel much better than I did this time last week, and Korban really seems to as well. I'm just saying, if you happen to see me and I don't appear to be firing on all cylinders, please understand. Go easy on me for the time being, and please understand that if I don't seem like I have it all together, it's because I don't. Please just pray for us. Pray for wisdom, that we will know how to give Korban what he needs. I just feel like that wasn't him last week. He's not himself when he gets like that. It's like he's not lucid or something. Whatever is going on with him, please pray that he gets relief and that he is able to communicate his needs. Autism tends to have cycles, and you can't always predict what's going to happen or how to prevent it. Pray for his school and the staff. They have been so kind to us, and that really means the world. I have heard horror stories from other parents about their schools, and I just don't know how I would've crawled out from under that too right now. Kindness goes a long way and maybe more people need to remember that! Pray that God uses our struggles to help someone else. And things have been crazy around the house, so also pray that I suddenly turn into the Queen Mama of Organization and Routine. I mean that. I'm not an organized person by nature, but I'm working on that. I really am. I think better organization and more structure would be a comfort to all of us. Thank you my friends and prayer warriors! Love to all.