I haven't mentioned it yet, but we have received some really big blessings in the midst of everything else we've gone through. As I've said before, Korban changed schools at the beginning of this school year, and while we miss his former classmates and teachers, we've been very blessed in our new school district. Prior to this year, he was in a special needs preschool. This year he started kindergarten. He started out in a mainstream classroom, and it went well for a little while, and then the whole situation deteriorated rather rapidly. He just can't handle a full school day and the overstimulation of a classroom at this point. He is currently homebound, and his teachers come to the home to work with him during the week. We also go to school a couple of times a week, just so he won't forget what it's like for his teachers to work with him there and for him to get OT, speech, and see the school therapist. Also, the school has a behavior specialist coming to work with him, which is great as we've never had anyone specifically targeting his behavior before. (And obviously, we need a LOT of help in that area.) The only problem was, the behavior guy was spread really thin between a lot of schools in a wide area and didn't get to see Korban as often as we needed. There happened to be a woman in his practice that lived close to our area, so it worked out for her to come work with Korban in the home three days a week. The first guy will still come to the school a couple of times a month to work with him there. They do ABA (Applied Behavior Analysis) therapy with Korban, which is pretty much the gold standard of autism therapy. Which is why I'm saying it's such a big blessing! It's just so nice to have HOPE when things are so hard.
So today the ABA lady came to our house. This was the fifth time she's been, and the first time Korban really showed out for her. (He generally has a "honeymoon" period with new people.) He started out by not really wanting to do his work, and then he got obsessive over a fan I had plugged up in the kitchen. When I tried to turn it off, he yanked my pants down. So I guess it was another blessing that it happened to be the lady this happened in front of and not the dude, right? I really should stop wearing elastic waist pants. So if you see Korban having a meltdown, shield your eyes. You have been warned.
Later, when she turned the fan off he went at her, hitting her and snatching out her hair. He also got really possessive of a toy and pulled Selah's hair over it. Tough afternoon.
I'd say there are two different aspects of his behavior that are both very challenging. One is clearly the aggression and the other is what we call "the wild and crazies." When he gets in this state he's not angry or trying to be aggressive but you can still get hurt. Picture Taz hopped up on speed, washed down with Mt. Dew. There's not much we've found that can reason with him or settle him down until it just sort of runs it's course. He runs back and forth, shrieks and screeches, rolls around on the ground, climbs on stuff, pulls at your clothes--pulling them off, grabs onto you and won't let go, and also does really bizarre, uninhibited sorts of thing. I'd say it's not as bad as the aggression but it's still not any fun.
So after his aggressive spell today, he got wild and crazy. Towards the end of our session, when she was gathering up her stuff and filling out the paperwork, he pulled his pants down, aimed, and peed on the top of my kitchen table. If you were wondering what I meant by "bizarre and uninhibited" that's a pretty good example right there.
At any rate, I'm very thankful we finally have some people in our corner that are trained to address these types of behavior. Because, quite frankly, I'm stumped. Nothing I've tried (and believe me I've tried a lot of things) has shown any marked improvement. And as I posted earlier, this girl is tired.
It's an odd feeling for me, because I'm used to being high energy, and feeling good most of the time. I go to bed tired and get up tired and I don't like it. By the time my husband gets home in the evening, it's almost like I'm not even functioning. I know part of Korban's frustration is not being able to communicate like he wants to, and in a weird way, I sort of understand. Brad doesn't understand why I don't talk to him about stuff, but it's like my mind is so tired I can't. I have all this stuff inside that I want to say but I'm so tired I'm just sitting there with a glazed look on my face going "Duuuurrrr." For some strange reason, this seems to frustrate him. Perhaps because he remember marrying someone who was articulate. Can't say I blame him. I miss that girl too!
I feel like if I could just get my head above water for long enough, we could be ok. If we could just get the aggression under control, other things would fall into place. Korban's bright and funny. He's capable of learning. But this behavior must be brought under control, and we are just going to have to persevere and get it done. We're thankful for everyone in our life who understands and who has come alongside us to support us during this rough patch.
Things change. Goals change. At this time last year, the number one thing I wanted for Korban was for him to be in a mainstream classroom. I got what I wanted, and it turned out to not be what was best for my child. What we are doing right now is the best fit for him. He can't handle a mainstream classroom, and he doesn't do well in a self-contained classroom either because most of the children in there have much more severe disabilities than him. Now, my goal for him is for him to get an education and for us to learn how to cope with his negative behaviors. There's all different kinds of learning. And for right now, our school situation works for us. People ask us all the time when he will be "back in school." The answer is we don't know when, or if that's going to happen in the traditional sense, but he is learning. He's even learning to read sight words! And I know the basic stuff will come a lot easier when we can ease his frustration and anxiety and help him to stop lashing out at everyone in arm's length every time things don't go his way. And also, it would be really cool if he could leave people's clothes on and not randomly pee on stuff. One step at a time. We will get there.
Thursday, April 11, 2013
Monday, April 8, 2013
Worn
"I'm tired / I'm worn / My heart is heavy / From the work it takes / to keep on breathing."
That's the first lines of one of my favorite songs, "Worn" by the band Tenth Avenue North. It pretty much sums up how I've felt lately. Just tired, mentally and physically. Worn out. It seems like a lot of parenting is trial and error. You learn that one thing doesn't work for your child, so you move on to something else. But when you are raising a child with special needs, that approach is scary. Might be the only choice you have, but it's still scary. It just seems like you are walking a tightrope and the margin of error is so small. It's frustrating for us, because it seems like we are just getting a piece of the puzzle here and there and I can't see the big picture.
I've mentioned before that Korban has stomach issues. We saw a gastroenterologist for a while, and he wound up releasing us a few years back because Korban was doing better. He took Prevacid for a long time, we did probiotics, GFCF diet, etc. Many, many kids with autism have gastrointestinal issues as well. Our gastroenterologist said that kids with autism don't have more stomach issues than typical children, it just seems that way because they aren't able to communicate how they are feeling. I see what he is saying with the communication, but you can't convince me that kids with autism don't have more stomach issues than typical kids. I have friends with autistic children, and I have friends with typical children, and the autism parents are seeing some really bizarre stuff. Last summer, Korban started throwing up when he was nervous or upset. We are still dealing with this, and he often chokes/gags on his food while eating and throws up. He also gags himself on purpose sometimes, and has started trying to eat things that aren't food (soap, dirt, toys, on and on.) I mentioned this to our autism specialist when we saw her last week and asked if she could refer us to another gastroenterologist. She asked if he had ever been checked for H. pylori (stomach bacteria) and we told her that he had not. So she asked that he be checked for it. Today I took him to his regular dr because he is sick and she did the test. It came back positive. She said there is no way of knowing how long he has had it, but he is probably on his way to getting an ulcer. He will have to take a two week course of two different types of antibiotics and stay on Nexium for the next six months. I feel terrible because we didn't know, but also hopeful that this will provide some relief. He has been eating like crazy lately, even more so than normal. And he gets very upset if I tell him that he's had enough. For example, at lunch today when I told him that was all he flipped over all of the chairs around our kitchen table, poured my drink out on the tabletop and floor and scratched and pinched me. He's desperate for food. And it's so sad to see! I feel like I am depriving my child, but he has gained so much weight here lately. He's over 70 lbs now, which is over half my body weight. Not good when you are dealing with aggression and rage issues. But now that we know about the H. pylori, Brad and I are wondering if he is trying to eat so much because his stomach hurts all the time, which he mistakes for hunger. Also, I looked up H. pylori and autism and read that it is more common in autistic children and it usually causes aggression. I'm thankful at least we know now and hopeful treatment will help him feel better all the way around. Antibiotics usually make him crazy though, so things may get worse before they get better.
Also, at our dr's appointment last week, we discussed his tantrums and rage. She is concerned that it could still be seizure related. His newest seizure med (started in Nov. 2012) doesn't seem to be helping, but it's hard to know for sure. She decided to refer us to LeBonheur's Epilepsy Center. We will be going in early in the morning on April 29th. They will start with an MRI and after that we will be checked into a room and the EEG leads will be hooked up. They will monitor him with the EEG and on video to see if there is any seizure activity. We were told to be prepared to stay for at least three days so that they could get a good read of the situation. Korban will be able to get up and walk around, go to their playroom, eat and everything else throughout this time but I know it will still be hard for him. Plus, if anything abnormal comes up on the EEG and they have to adjust his meds, we will be staying even longer. It's stressful, because Brad doesn't have that much time to take off work, and Korban is really going to be out of his element and we have our sweet Selah that we will have to be away from during this time. But at least after all that we should have some definitive answers of whether or not he is having seizures and how they are affecting him. (Just for background information, his past EEGs showed sub clinical seizures, which are pretty much random electrical misfires in the brain, as well as slowed brain waves. He's been on several different seizure meds, and we haven't had great results from any of them.)
So that's what's been going on with us.
That's the first lines of one of my favorite songs, "Worn" by the band Tenth Avenue North. It pretty much sums up how I've felt lately. Just tired, mentally and physically. Worn out. It seems like a lot of parenting is trial and error. You learn that one thing doesn't work for your child, so you move on to something else. But when you are raising a child with special needs, that approach is scary. Might be the only choice you have, but it's still scary. It just seems like you are walking a tightrope and the margin of error is so small. It's frustrating for us, because it seems like we are just getting a piece of the puzzle here and there and I can't see the big picture.
I've mentioned before that Korban has stomach issues. We saw a gastroenterologist for a while, and he wound up releasing us a few years back because Korban was doing better. He took Prevacid for a long time, we did probiotics, GFCF diet, etc. Many, many kids with autism have gastrointestinal issues as well. Our gastroenterologist said that kids with autism don't have more stomach issues than typical children, it just seems that way because they aren't able to communicate how they are feeling. I see what he is saying with the communication, but you can't convince me that kids with autism don't have more stomach issues than typical kids. I have friends with autistic children, and I have friends with typical children, and the autism parents are seeing some really bizarre stuff. Last summer, Korban started throwing up when he was nervous or upset. We are still dealing with this, and he often chokes/gags on his food while eating and throws up. He also gags himself on purpose sometimes, and has started trying to eat things that aren't food (soap, dirt, toys, on and on.) I mentioned this to our autism specialist when we saw her last week and asked if she could refer us to another gastroenterologist. She asked if he had ever been checked for H. pylori (stomach bacteria) and we told her that he had not. So she asked that he be checked for it. Today I took him to his regular dr because he is sick and she did the test. It came back positive. She said there is no way of knowing how long he has had it, but he is probably on his way to getting an ulcer. He will have to take a two week course of two different types of antibiotics and stay on Nexium for the next six months. I feel terrible because we didn't know, but also hopeful that this will provide some relief. He has been eating like crazy lately, even more so than normal. And he gets very upset if I tell him that he's had enough. For example, at lunch today when I told him that was all he flipped over all of the chairs around our kitchen table, poured my drink out on the tabletop and floor and scratched and pinched me. He's desperate for food. And it's so sad to see! I feel like I am depriving my child, but he has gained so much weight here lately. He's over 70 lbs now, which is over half my body weight. Not good when you are dealing with aggression and rage issues. But now that we know about the H. pylori, Brad and I are wondering if he is trying to eat so much because his stomach hurts all the time, which he mistakes for hunger. Also, I looked up H. pylori and autism and read that it is more common in autistic children and it usually causes aggression. I'm thankful at least we know now and hopeful treatment will help him feel better all the way around. Antibiotics usually make him crazy though, so things may get worse before they get better.
Also, at our dr's appointment last week, we discussed his tantrums and rage. She is concerned that it could still be seizure related. His newest seizure med (started in Nov. 2012) doesn't seem to be helping, but it's hard to know for sure. She decided to refer us to LeBonheur's Epilepsy Center. We will be going in early in the morning on April 29th. They will start with an MRI and after that we will be checked into a room and the EEG leads will be hooked up. They will monitor him with the EEG and on video to see if there is any seizure activity. We were told to be prepared to stay for at least three days so that they could get a good read of the situation. Korban will be able to get up and walk around, go to their playroom, eat and everything else throughout this time but I know it will still be hard for him. Plus, if anything abnormal comes up on the EEG and they have to adjust his meds, we will be staying even longer. It's stressful, because Brad doesn't have that much time to take off work, and Korban is really going to be out of his element and we have our sweet Selah that we will have to be away from during this time. But at least after all that we should have some definitive answers of whether or not he is having seizures and how they are affecting him. (Just for background information, his past EEGs showed sub clinical seizures, which are pretty much random electrical misfires in the brain, as well as slowed brain waves. He's been on several different seizure meds, and we haven't had great results from any of them.)
Wednesday, February 6, 2013
Some Days There Just Isn't Enough Lysol
Today wasn't a bad day, but it was a challenging time in Autism Land, that's for sure. Korban has been really out of sorts here lately--not sure why. He's been sort of sick, so I guess that's part of it. We started off our morning with him getting up and then going back to bed, which is unusual for him. He didn't seem to be feeling very well, so I called school off. After he got up the second time, I took him to the bathroom. He sat down to pee and then stood up and pooped in the floor, which seemed sort of backwards to me. And also not fun to clean up. But amazingly, that wasn't even the grossest thing that happened today.
The rest of the morning shaped up pretty well. This afternoon I asked my mom if she could give us a ride to pick up some milk, since Selah was running low and the princess does not like to be without chocolate milk. (Oh, have I mentioned we've had Major Vehicle Issues that probably deserve their own post and I've been without a vehicle since November? Not cool. Not cool at all.) My mom lives right around the corner, so after I talked to her I started getting everyone ready to go. I got the kids afternoon snack ready and fed it to them. I know I've mentioned Korban's sensory issues before--eating is a big issue. For the longest, he couldn't eat foods of certain textures and he has lots of problems with gagging and choking. Now he thankfully eats a much bigger variety of foods, but we struggle with overeating and still have the same gagging and choking issues. I think the food gets stuck to the roof of his mouth sometimes and he just can't handle that feeling. Sometimes I can get to him quickly enough to sweep the food out myself before he gets sick, but sadly, today that was not the case. He projectile vomitted across my living room. And that was the grossest thing I cleaned up today, just in case you were worried you were going to have to read something even worse. I'm very used to this type of cleaning, and I have a process. Strip Korban (he can't stand to have anything on his clothes) throw clothes in the washer, dress him, and clean up the mess. Selah is very good about staying calm during this whole process unless one of her beloved toys wound up being in the line of fire, and then she is sad. Today I quickly got Korban undressed but since it was so warm, I decided to skip the re-dressing part and move directly on to the floor cleanup. It was nice outside today, and plenty warm in the house so I figured I'd just let him run around in his underwear for a while. Actually, I figured it was so nice outside that I'd go ahead and open the front door so that we could get some fresh air while I cleaned. Not a bad idea in theory. Unless of course, you have an autistic child that is prone to bolting. Yes, he did. And then there I was chasing my naked child across the front yard while he laughed and screamed and obviously enjoyed the game. Naturally, my neighbor chose this time to return home and witness the entire spectacle. I caught Korban, and returned him to the house but not before he uprooted a potted plant on my porch and stuffed it in his mouth. I had to fight him to pry it out. Snack, we have sensory issues with, but apparently potted plants are not an issue. And no, it wasn't poisonous. I managed to get all the mess cleaned up, steam mop the floor, and apply a layer of Lysol to it. Then I put on clean clothes because I just felt dirty. After I got dressed I returned to the kitchen to discover that my children had gotten out the package of chocolate milk mix and were eating the powder directly out of the canister. They looked like this:
And this:
But apparently, it was finger' lickin' good!
And I had yet another mess to clean up, but at least this one smelled good!
My mom showed up right after I finished dressing Korban. She was carrying a bag of candy and asked if she could give it to them. When I said "NO!" she seemed really surprised but after I explained about Korban getting sick, not to mention they just consumed a fair amount of chocolate dust, she understood. And if she had showed up 45 minutes earlier, she would've understood a lot better. ;)
Today had it's hard moments, but it wasn't a bad day. There are lots of worse things than poop, puke, and snacking on potted plants and Nesquick (aka "bunny milk"). This mama is tired though. One very, very good thing happened today. My friend Carla came to see me, and she brought me a Mountain Dew
THIS BIG!!!
God bless you Carla. Grateful to have a friend who knows when you need some encouragement.
And some caffeine!
The rest of the morning shaped up pretty well. This afternoon I asked my mom if she could give us a ride to pick up some milk, since Selah was running low and the princess does not like to be without chocolate milk. (Oh, have I mentioned we've had Major Vehicle Issues that probably deserve their own post and I've been without a vehicle since November? Not cool. Not cool at all.) My mom lives right around the corner, so after I talked to her I started getting everyone ready to go. I got the kids afternoon snack ready and fed it to them. I know I've mentioned Korban's sensory issues before--eating is a big issue. For the longest, he couldn't eat foods of certain textures and he has lots of problems with gagging and choking. Now he thankfully eats a much bigger variety of foods, but we struggle with overeating and still have the same gagging and choking issues. I think the food gets stuck to the roof of his mouth sometimes and he just can't handle that feeling. Sometimes I can get to him quickly enough to sweep the food out myself before he gets sick, but sadly, today that was not the case. He projectile vomitted across my living room. And that was the grossest thing I cleaned up today, just in case you were worried you were going to have to read something even worse. I'm very used to this type of cleaning, and I have a process. Strip Korban (he can't stand to have anything on his clothes) throw clothes in the washer, dress him, and clean up the mess. Selah is very good about staying calm during this whole process unless one of her beloved toys wound up being in the line of fire, and then she is sad. Today I quickly got Korban undressed but since it was so warm, I decided to skip the re-dressing part and move directly on to the floor cleanup. It was nice outside today, and plenty warm in the house so I figured I'd just let him run around in his underwear for a while. Actually, I figured it was so nice outside that I'd go ahead and open the front door so that we could get some fresh air while I cleaned. Not a bad idea in theory. Unless of course, you have an autistic child that is prone to bolting. Yes, he did. And then there I was chasing my naked child across the front yard while he laughed and screamed and obviously enjoyed the game. Naturally, my neighbor chose this time to return home and witness the entire spectacle. I caught Korban, and returned him to the house but not before he uprooted a potted plant on my porch and stuffed it in his mouth. I had to fight him to pry it out. Snack, we have sensory issues with, but apparently potted plants are not an issue. And no, it wasn't poisonous. I managed to get all the mess cleaned up, steam mop the floor, and apply a layer of Lysol to it. Then I put on clean clothes because I just felt dirty. After I got dressed I returned to the kitchen to discover that my children had gotten out the package of chocolate milk mix and were eating the powder directly out of the canister. They looked like this:
And this:
But apparently, it was finger' lickin' good!
My mom showed up right after I finished dressing Korban. She was carrying a bag of candy and asked if she could give it to them. When I said "NO!" she seemed really surprised but after I explained about Korban getting sick, not to mention they just consumed a fair amount of chocolate dust, she understood. And if she had showed up 45 minutes earlier, she would've understood a lot better. ;)
Today had it's hard moments, but it wasn't a bad day. There are lots of worse things than poop, puke, and snacking on potted plants and Nesquick (aka "bunny milk"). This mama is tired though. One very, very good thing happened today. My friend Carla came to see me, and she brought me a Mountain Dew
God bless you Carla. Grateful to have a friend who knows when you need some encouragement.
And some caffeine!
Thursday, January 17, 2013
I Got This!
Back during the fall, when the weather was still pretty warm, I took Korban on a trip to Lowe's. He loves going to Lowe's, so much so that I was using it as a reinforcer. He didn't want to go to his therapy session that day, and I told him that if he did his therapy, we would go to Lowe's afterwards. So he fulfilled his obligation, and I fulfilled mine. I had been needing to go to Lowe's to buy sand for their sand box. Korban got one of those adorable Little Tikes turtle sandboxes from his uncle and aunt on his first birthday and he has always liked it, but it was out of sand. Sand is a great sensory item, and I figured it would keep the kids busy and happy. So off we went in search of sand. I figured it would be outside, in the garden section. We went up and down every aisle and saw all sorts of cool stuff but no play sand. There was a Lowe's employee out there, and she asked if we needed help finding something. I explained to her what I was looking for and she told me it was actually in the lumber section of the store. As I was walking away, she called after me and told me to be sure and have some of the store associates load it in my vehicle for me. This was a nice offer, but I sort of panicked. How big ARE these bags of sand? I wondered. And more importantly, how much are they going to cost? We arrived in the lumber section, and I located the bags of sand and immediately breathed a sigh of relief. They weren't that large, and only cost a little over $3.00. "I'll get two bags!" I thought happily. Now Korban is a good little shopping buddy most of the time. He won't fit in the front part of the buggy anymore, but he is happy to sit "cris-cross applesauce" in the basket of the buggy. I hefted the first bag of sand and thought it wasn't that heavy. I didn't want to squish Korban with it, so I decided to put it in the front part of the buggy. It fit with no problem, and I added the second bag. I don't look like much, but I'm freakishly strong for my size. Probably due to all the kid-wrangling I do. My kids are saving me a gym membership. I even sort of smirked about this in my head that day. I thought "Heh, they just don't know what I go through with Korban every day or they would know I don't need help. I could throw a bag of this sand over each shoulder and run a couple of laps around this store!" I seriously did think that. And then I went and paid for the sand, smug smile still in place, and headed out to load it in my van all on my own, thankyouverymuch. I unlocked the doors, and then decided to reach in and crank it to let it cool off a little while I got everything loaded. I sat my purse down, stuck the key in the ignition and then looked over my shoulder to see my buggy (with my son and those blessed bags of sand) rolling rapidly away across the parking lot. As it turns out, loading heavy objects into the front part of the buggy makes it somewhat inclined to ROLL AWAY when you are on a downward slope. Korban, bless his heart, was still sitting cross-legged in the buggy, all mellow. He seriously looked like a mini yoga master. I sprinted after the buggy, catching it and digging my heels in to bring it to a screeching halt approximately one centimeter away from the bumper of another vehicle. I quickly glanced around the parking lot to see if anyone was rolling on the ground laughing and/or phoning the Department of Human Services. Not seeing anyone, I meekly rolled the buggy back to my van and safely loaded up my child and our sand.
When I relayed that story to Brad that night, he laughed with me, but he also pointed out that I never think I need help. He said if I had just gotten help loading it like the lady offered, that never would've been an issue. And he's right. But I totally thought I had it. I don't like asking for help. I don't think it's really a pride thing, it's just I don't want to bother people. Especially when I think I can do it myself. But we weren't meant to do it all alone.
That's just a funny little example, but it applies to the bigger picture too. I haven't updated in a while: Korban is doing pretty well. We had a great time over the Christmas and New Year holidays. Things have leveled out mostly with his agression, although anxiety continues to be a major issue. We had a meeting at his school before Christmas break and decided to do a partial homebound program. His teachers come to the home several days a week to work with him here, in his own environment, and the other days of the week he goes to school for a little while, and I go with him. This is temporary, just to try to calm him down and ease him into a routine. It has been going well. Over Christmas break his school fixed up a room for him to calm down in as needed, and also to complete his task boxes in. (The task boxes are from the TEACCH method, if you aren't familiar with that term. They are awesome! It's hands-on stuff and Korban does well with it. Oh, and Selah loves them too. She asks me every day if Korban's teacher is coming to see us and if they are bringing their "fun boxes" so I guess they work pretty well for neurotypical kids too!)
Yesterday was the first time we had been to the school to see the new room. It's even decorated to his specific interests. The door has an Ole Miss theme! How cool is that? So we walked in yesterday and Korban looked around, taking it all in. "This room," he said slowly "is nifty." What a great sentence! I couldn't believe he said that, with no prompting at all. I was so proud. They showed him his picture schedule so he could see which boxes he was going to do. He did a couple of them, and then he had been asking to see a little boy from his classroom, so the assistant went and got him. He and Korban drew on the white board together. Korban drew a picture of me. I either had five legs, or five hairs on my chin, not really sure which, but I thought it was fantastic. And then Korban started asking for pipe cleaners. One of the task boxes has pipe cleaners, and he really likes them. I told him we were finished with that box, and he could play with his pipe cleaners at home. Before I could see it coming or have time to react, he hit and scratched me right in the face, around my left eye. It was hard. I literally had blood running down my face and it sort of dislodged my contact so my vision was blurry for a few seconds. I blinked the contact back into place and my eye was watering. Korban asked me, worriedly, if I was crying, and I told him no. Emotions really freak him out, and I'm well practiced with the poker face. But then the next thing I knew I WAS crying. And I could.not.STOP! All this in front of my child, another child, and two professionals. So Korban started freaking out and his teacher walked him around in the halls to calm him while I locked myself in the bathroom to have my mommy meltdown. But no, really, I got this. Except for when I don't. And yesterday, I didn't. I guess what I'm saying is, it's normal not to have it all together. Nobody really does. And I don't want to be fake and act like I do, even though it's really hard for me sometimes. Autism is hard. Life is hard! But it's still good. Meltdowns are gonna happen. For the kiddos, and apparently, sometimes for the mamas as well. His teachers were so kind about it and very helpful. I think I sort of surprised myself more than anybody. It's okay to be upset sometimes. Like when you think everything is going beautifully and the next thing you know, there's blood running down your face. As a friend kindly pointed out to me today, we are all human. And these things happen to more people than just me. I just felt like a complete failure as a mom. Like if I just had my act together at all, my child would not be having these problems. But that's not how it works, and it's not healthy to think that. I know that, and I still battle it. It's much easier to tell somebody else this than to do it myself. But I'm learning--sometimes I don't have this--and I guess maybe that's okay too.
When I relayed that story to Brad that night, he laughed with me, but he also pointed out that I never think I need help. He said if I had just gotten help loading it like the lady offered, that never would've been an issue. And he's right. But I totally thought I had it. I don't like asking for help. I don't think it's really a pride thing, it's just I don't want to bother people. Especially when I think I can do it myself. But we weren't meant to do it all alone.
That's just a funny little example, but it applies to the bigger picture too. I haven't updated in a while: Korban is doing pretty well. We had a great time over the Christmas and New Year holidays. Things have leveled out mostly with his agression, although anxiety continues to be a major issue. We had a meeting at his school before Christmas break and decided to do a partial homebound program. His teachers come to the home several days a week to work with him here, in his own environment, and the other days of the week he goes to school for a little while, and I go with him. This is temporary, just to try to calm him down and ease him into a routine. It has been going well. Over Christmas break his school fixed up a room for him to calm down in as needed, and also to complete his task boxes in. (The task boxes are from the TEACCH method, if you aren't familiar with that term. They are awesome! It's hands-on stuff and Korban does well with it. Oh, and Selah loves them too. She asks me every day if Korban's teacher is coming to see us and if they are bringing their "fun boxes" so I guess they work pretty well for neurotypical kids too!)
Yesterday was the first time we had been to the school to see the new room. It's even decorated to his specific interests. The door has an Ole Miss theme! How cool is that? So we walked in yesterday and Korban looked around, taking it all in. "This room," he said slowly "is nifty." What a great sentence! I couldn't believe he said that, with no prompting at all. I was so proud. They showed him his picture schedule so he could see which boxes he was going to do. He did a couple of them, and then he had been asking to see a little boy from his classroom, so the assistant went and got him. He and Korban drew on the white board together. Korban drew a picture of me. I either had five legs, or five hairs on my chin, not really sure which, but I thought it was fantastic. And then Korban started asking for pipe cleaners. One of the task boxes has pipe cleaners, and he really likes them. I told him we were finished with that box, and he could play with his pipe cleaners at home. Before I could see it coming or have time to react, he hit and scratched me right in the face, around my left eye. It was hard. I literally had blood running down my face and it sort of dislodged my contact so my vision was blurry for a few seconds. I blinked the contact back into place and my eye was watering. Korban asked me, worriedly, if I was crying, and I told him no. Emotions really freak him out, and I'm well practiced with the poker face. But then the next thing I knew I WAS crying. And I could.not.STOP! All this in front of my child, another child, and two professionals. So Korban started freaking out and his teacher walked him around in the halls to calm him while I locked myself in the bathroom to have my mommy meltdown. But no, really, I got this. Except for when I don't. And yesterday, I didn't. I guess what I'm saying is, it's normal not to have it all together. Nobody really does. And I don't want to be fake and act like I do, even though it's really hard for me sometimes. Autism is hard. Life is hard! But it's still good. Meltdowns are gonna happen. For the kiddos, and apparently, sometimes for the mamas as well. His teachers were so kind about it and very helpful. I think I sort of surprised myself more than anybody. It's okay to be upset sometimes. Like when you think everything is going beautifully and the next thing you know, there's blood running down your face. As a friend kindly pointed out to me today, we are all human. And these things happen to more people than just me. I just felt like a complete failure as a mom. Like if I just had my act together at all, my child would not be having these problems. But that's not how it works, and it's not healthy to think that. I know that, and I still battle it. It's much easier to tell somebody else this than to do it myself. But I'm learning--sometimes I don't have this--and I guess maybe that's okay too.
Saturday, December 15, 2012
From the heart of the daddy figure!
Guest blogger here...I am Brad, the daddy figure in Essary 4.0.
Yesterday was an emotional day for sure. I had been sick and off work on Thursday and then was scheduled to be off on Friday for our 10 year aniversary. We had planed to go somewhere but that fell through for various reasons, money being a big one, just saying. No pitty cause we split the kids at the grandparents to spend the weekend for the the first time like ever and are doing a staycation...just like we did for our honeymoon, huh. Well we wanted to post on facebook about our aniversary but were having trouble with the internet at home so didn't get to that morning. Then word of the tragedy in Newton happened and it just didn't seem right to post about our stuff at that time. So that is why we posted so late in the day to celebrate our day with FB. We did have a good family day and I was glad to be home with my kids for the day.
Now as far as the shooting goes here is my opinion:
The guns used did not kill anyone. I personally do not own a gun but I do collect knives and swords. Not a one of my weopons have every harmed a persons life.
Evil was present. This is not God's fault, He did not make this happen. God allowed for evil into this world way back in the day so that we could experience Heaven one day. There is only one way to do this and that is to have a personal relationship with the Lord and Savior Jesus Christ. It would appear that this adult individual was not being led by the God that I know.
They say Autism was a possible factor in the adult taking the actions that he did. I'm not really sure where to go with this one but I do hope that the media has their facts straight. I do hope that people don't just make up things and say hurtful things just to be doing it. Wait what am I talking about? Of course there is ignorance out there and these things will be said and happen. People are mean. Kids are mean to other kids. When the wrong info is put out there then it hurts deep to those of us who are living with such as Autism on a daily basis. Please do not make this a stereotype about EVERY person with autism will do this. It is already a fear within us that we can not control this thing called autism so why make it worse for us. Give support not discouragement.
Now for the most important and the purpose for me chiming in here. I hope for this to be the encouragement that I intend for it to be to whoever needs to hear it right now.
They say God is not allowed in our Schools:
Yesterday was an emotional day for sure. I had been sick and off work on Thursday and then was scheduled to be off on Friday for our 10 year aniversary. We had planed to go somewhere but that fell through for various reasons, money being a big one, just saying. No pitty cause we split the kids at the grandparents to spend the weekend for the the first time like ever and are doing a staycation...just like we did for our honeymoon, huh. Well we wanted to post on facebook about our aniversary but were having trouble with the internet at home so didn't get to that morning. Then word of the tragedy in Newton happened and it just didn't seem right to post about our stuff at that time. So that is why we posted so late in the day to celebrate our day with FB. We did have a good family day and I was glad to be home with my kids for the day.
Now as far as the shooting goes here is my opinion:
The guns used did not kill anyone. I personally do not own a gun but I do collect knives and swords. Not a one of my weopons have every harmed a persons life.
Evil was present. This is not God's fault, He did not make this happen. God allowed for evil into this world way back in the day so that we could experience Heaven one day. There is only one way to do this and that is to have a personal relationship with the Lord and Savior Jesus Christ. It would appear that this adult individual was not being led by the God that I know.
They say Autism was a possible factor in the adult taking the actions that he did. I'm not really sure where to go with this one but I do hope that the media has their facts straight. I do hope that people don't just make up things and say hurtful things just to be doing it. Wait what am I talking about? Of course there is ignorance out there and these things will be said and happen. People are mean. Kids are mean to other kids. When the wrong info is put out there then it hurts deep to those of us who are living with such as Autism on a daily basis. Please do not make this a stereotype about EVERY person with autism will do this. It is already a fear within us that we can not control this thing called autism so why make it worse for us. Give support not discouragement.
Now for the most important and the purpose for me chiming in here. I hope for this to be the encouragement that I intend for it to be to whoever needs to hear it right now.
They say God is not allowed in our Schools:
Yes it would be wonderful if we had a government that by
their laws allowed freely for us to have the word of God in every aspect of
life but at this time that is not so. We
have a government that allows for all freedoms and is not being led by God but
by law. I have no faith that a law would
do anything with God being anymore in our school than he is now. I am in almost every school in Corinth and
Alcorn County at least once a month. I
see God in our schools. For one I know
for a fact that I take him with me whenever I enter because I have that
personal relationship with Christ. I do
not say that to boast but just pointing out facts here. I see Him in my
coworkers who also take into the schools their own personal relationships with
the Savior and share that by actions shown.
I see Him in the kids I work with that talk about what they have done at
church and home that reflect on a family searching for God. I see Him in the many teachers that are very
active members in the numerous Churches in the area. I see Him in the Principal who is a Sunday
school teacher. I see Him in the deacons
on the school boards. I see Him in the superintendents
who hold various leadership positions in their Churches. I see Him in the cafeteria worker who prayers
for your child as they prepare a meal for the day. I see Him in the janitor who with God’s grace
gives a helpful smile that means so much to a child. I see Him in the coach that is a positive
example who prays with the team. I see
Him in the countless number of parents who enter each school on a daily basis
who train their children up in the way of our God. You see God is already present and accounted for
in our schools. He can be there by the
simple piece of paper that can be prayed over and put in a backpack. A law will not make this happen any better
than it is now. A petition for a law
will only take away the time that could be used to pray for or to witness to
the countless number of individuals in our community that do not have this
personal relationship with Jesus Christ.
What is the best use of our time here?
Is it to fight to get signatures for a possible vote? And then what if we lose that vote, then what,
what does that tell us? Now just like
the passing of liquor for the City of Corinth does not automatically make
everyone in it a drunk, the passing of a law allowing God back into the schools
would not automatically make everyone have a personal relationship with Jesus. Both are a personal choice by each individual. Even with laws a person must make the
decision to purchase the alcohol and get drunk.
People need to be seeking after God and making the personal choice to
follow Him. The only way for this to
happen is by witnessing to those who do not know Him. That is where I believe time would be better
spent. So instead of a signature petition
for a law why not put together tracts to pass out to the lost so they can know
the way to be saved. God is in our
schools, He just needs to be in more lives!
Tuesday, December 4, 2012
How To Stay Awake
My newly turned three year old Selah is a PRO at fighting sleep. Seriously, she has some rather interesting techniques. During a particularly grueling nap that did not happen earlier in the week, I started thinking that if I was as good at avoiding sleep as she is, I might never sleep. I could get all kinds of stuff done. I realize many parents fight this same battle, so the next time you find yourself needing to stay awake here are some of Selah's tried and true methods:
1. Do not stop moving. For any reason. Even if you can just keep your big toe twitching, that's probably enough to keep your whole body awake.
2. Should your mother tell you in her Very Serious Voice that you must keep your hands and feet still, contort your face into all sorts of strange and wondrous expressions. Someone might be able to hold your hands and feet still but eyebrows can't be stopped.
3. Ask your mother the name of every single one of your friends' mommy and daddy.
4. Then inquire if the friend has brothers or sisters.
5. Go ahead and ask if they have pets, too.
6. Classify your friends into groups. My favorite one of Selah's: Friends Who Pee Standing Up (aka boys) and Friends Who Pee Sitting Down (aka girls).
7. Sing. Even if you are so tired your words run together and you sounds like a drunk, don't give up. Things are just getting interesting.
8. Should anyone come along and offer you a friendly snuggle to aide in the sleep process, scream at the top of your lungs that they are CHOKING you. Remember, your goal is to stay awake, not fall asleep and anyone with different plans is clearly the enemy.
9. Should you accidentally fall asleep, make sure you are draped across the windpipe of the person helping you get to sleep so that you actually are choking them. Then wake up as soon as they shift you off and start the whole process over.
10. Lick your arm. (Disgusting!)
11. Lick somebody else's arm. (even more disgusting! But effective.)
12. Count your fingers and your toes. Repeatedly.
13. Count your digits in every language you know. For Selah, this is English and Spanish. Thank you Dora and Diego.
14. Get somewhat still and close your eyes long enough to instill hope in the heart of whoever wants you to sleep. Then shout "AM I ASLEEP YET?"
15. Do your best impression of a worm crawling through hot ashes after drinking a java.
16. Poke someone in the eye. Hard.
17. Ask someone to tell you a story. Then interrupt them to explain they are telling it wrong. Argue with them if they don't believe you.
18. Pretend you are scared of something.
So there's her list. I'm sure I could add to it later as more things come to mind, or as more sleep avoidance methods come to her mind.
1. Do not stop moving. For any reason. Even if you can just keep your big toe twitching, that's probably enough to keep your whole body awake.
2. Should your mother tell you in her Very Serious Voice that you must keep your hands and feet still, contort your face into all sorts of strange and wondrous expressions. Someone might be able to hold your hands and feet still but eyebrows can't be stopped.
3. Ask your mother the name of every single one of your friends' mommy and daddy.
4. Then inquire if the friend has brothers or sisters.
5. Go ahead and ask if they have pets, too.
6. Classify your friends into groups. My favorite one of Selah's: Friends Who Pee Standing Up (aka boys) and Friends Who Pee Sitting Down (aka girls).
7. Sing. Even if you are so tired your words run together and you sounds like a drunk, don't give up. Things are just getting interesting.
8. Should anyone come along and offer you a friendly snuggle to aide in the sleep process, scream at the top of your lungs that they are CHOKING you. Remember, your goal is to stay awake, not fall asleep and anyone with different plans is clearly the enemy.
9. Should you accidentally fall asleep, make sure you are draped across the windpipe of the person helping you get to sleep so that you actually are choking them. Then wake up as soon as they shift you off and start the whole process over.
10. Lick your arm. (Disgusting!)
11. Lick somebody else's arm. (even more disgusting! But effective.)
12. Count your fingers and your toes. Repeatedly.
13. Count your digits in every language you know. For Selah, this is English and Spanish. Thank you Dora and Diego.
14. Get somewhat still and close your eyes long enough to instill hope in the heart of whoever wants you to sleep. Then shout "AM I ASLEEP YET?"
15. Do your best impression of a worm crawling through hot ashes after drinking a java.
16. Poke someone in the eye. Hard.
17. Ask someone to tell you a story. Then interrupt them to explain they are telling it wrong. Argue with them if they don't believe you.
18. Pretend you are scared of something.
So there's her list. I'm sure I could add to it later as more things come to mind, or as more sleep avoidance methods come to her mind.
Wednesday, November 21, 2012
Hope
First of all, I just wants to say thank you to all the people that contacted me here on this blog or on Facebook, sent me cards (and fuzzy socks!) and by text and phone calls to offer love and encouragement after my last post. It's so humbling to know that so many of you care about us, and it was such a blessing to me during a very low point in my life. I'm so thankful to say Korban is doing better. He is out of school on Thanksgiving break this week, and his behavior has been better than it has been in a very long time. He hasn't been aggressive at all, and he hasn't even let loose his trademark scream. He has been happy and talkative and very sweet and loving, and I'm a happy mama. He is still struggling in school, so please continue to lift us up in prayer. He is only attending school from 8:30-11:30 each day, and he is splitting his time between his mainstream classroom and the special education classroom. He continues to be very aggressive towards school staff and his peers, which worries me and breaks my heart. They have been so good and so patient about working with him. We had an IEP meeting on November 12th, and I thought it was very successful. His entire team was there, as well as me and Brad, and I felt like we got a lot accomplished. There is a behaviorist coming to work with him every other week, and we love him. I feel like he really has a good understanding of Korban, and has been able to offer a lot of helpful insight. Plus, Korban adores him which is always a very big plus. The last time he came to the school to work with Korban, he let Korban ride piggyback when he brought him out to meet me. Korban was proud. He feels that a lot of Korban's behavioral issues and aggression stem from his intense anxiety. He said he could tell right away that Korban had a lot of anxiety, and he didn't seem freaked out by any of it and like he knew how to help him cope. During the IEP meeting the behaviorist said regarding Korban's behavior "Well, imagine having THAT much anxiety and not really being able to talk it out with anyone." Kinda puts things into perspective doesn't it?
Oh, and when Korban's first IEP was done at age three, the ruling was Developmentally Delayed. That was before we were technically diagnosed with autism, although Brad and I knew that's what he had. I need to share our whole diagnosis journey, but that a whole 'nother loooong post. So for today I will just say that when he was finally diagnosed at age three, the developmental pediatrician diagnosed him with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). This is a condition on the autism spectrum meaning that the child meets some of the charachteristics for autism, but not necessarily all of them. For example, Korban has pretty good eye contact. Maybe not as good as a typical child, but probably more eye contact than many other autistic children. I used to think that PDD-NOS was like the least severe form of autism, but I read somewhere that while that can certainly be true, a child with PDD-NOS may be only mildly affected in some areas, but profoundly affected in others. This would be true with us--Korban has lots of language, although his communication isn't effortless, but he is more seriously affected in the behavioral/emotional area of things. I don't know if I'm explaining that very well, but that's just sort of my understanding of things. Anyway, we needed to update his ruling for his IEP, since he clearly is autistic. So after some testing by the school psychometrist, his updated ruling is now Asperger's. This was mainly due to his speech and language, even if it was delayed in coming. We had a neurologist appointment Friday, and I told the neurologist about his new ruling. He agreed and said "Yes, everyone who works with him needs to know he is high-functioning." Did you hear that? HIGH FUNCTIONING!!! Beautiful words to this mama. Yup, my son is high functioning. He might beat the mess out of you if he's upset and you are anywhere close to him, but he's high functioning. We can work with this. We can. We will find a way to help him cope with all the anxiety and communication issues.
I can say this with confidence now that things are going more smoothly. But I have to say, when you're right in the midst of one of those down cycles, it's hard to have that kind of faith. It's not that I don't believe--I do. It's just that it's so hard to keep that insight when things are going so rough. I get worried that they won't get better. I worry about the future. The down cycles seem to get harder and harder rather than easier as he gets older. And bigger. And stronger. My mind goes places I wish it wouldn't. But it's so hard to stop my thoughts from spinning out of control. I think "What if he hurts somebody? REALLY hurts somebody? What if it's Selah? What if when he's older he loses control and kills me?" Those are horrible things to think about. But when you see your child fly into a rage like I've seen mine, those are things you think. Or at least I do. I'm a great worrier. Not that it's a talent or anything... I think I'm actually better about it than I used to be, simply because I've been through some tough things and I've learned the hard way that I don't have control. That I just need to try my hardest and roll with it the best I can. I know how important a positive attitude is. I owe my family that. And most of the time, it's easy to be positive. It really is. We are so blessed. Even when things are hard, it doesn't mean they are bad. But when things seem so out of control, I struggle. I don't think that makes me weak, I'm just being honest. My goal is to be transparent and not hide things so that people understand what we are going through, both the good and the bad.
Okay, back to the neurologist appointment. Korban had two EEGs when he was two. The first one showed random electrical discharges, kind of like misfires I guess you could say. The doctors called this subclinical seizures. Those are basically small seizures that happen in the brain but there is not an outward manifestation of them. A while after that, we were admitted to the hospital and did a 24 hour video EEG. They hooked him up to electrodes and did video monitoring so they could see if there were any outward signs that were associated with the electrical discharges. There weren't. We've been on and off different seizures medicines. This latest EEG also showed slowing of the brain waves. When I asked what that mean, the dr explained that it doesn't point toward any specific condition or diagnosis but it is a pretty common EEG finding for patients on the autism spectrum. So basically, his brain isn't normal, but it's normal for him to be abnormal. Got it? Cause I'm not sure I do. Ha! I asked if there were any symptoms of the slow brain waves and he said it could cause delays in processing, behavioral issues, etc. I know a lot of times when we say something to Korban, or when something happens, it's like he has a delayed reaction to it. So I guess the EEG reading just confirmed that if it seems like he's operating on a delay, it's because he IS! And just let me add that this doesn't mean that every single autistic person is like him, I'm just referring to the one I know best. It also doesn't mean he's "slow" or unintelligent, it just means that his brain processes things in a different way than a typical person. I'm glad we at least know this, because I'm a big fan of having information and it serves as a good reminder that he isn't acting out simply because he's a bad kid or he's angry, he's just reacting to all the confusion and stress that's going on inside his head. I wish I knew what it was like to be him. I really do. I know I need to be more patient.
Okay, specific prayer requests:
--The neurologist is weaning Korban off the anti-seizure med he is currently on and starting a new med. We've been through so many medication changes, and it always makes me nervous. But the dr feels strongly that the other medicine would treat his problems in a better and more comprehensive way. So just pray that he reacts well to it, and it helps with no major side effects. And please pray that he continues to have good behavior at home and that things get better at school! I love having my sweet boy back. I missed him so much!
--I felt bad that I forgot to ask last time that you guys specifically pray for Selah. She's such an amazing little girl, and she loves her brother so much. She was totally freaked out when he was having such a rough time and he did pull her hair quite a few times and bit her leg that one time. People always ask us how we protect her from him, and all I can say is the best way we know how. I always try to keep myself between my two kids when I can tell Korban is getting upset and I don't usually walk out of the room and leave them alone, not even just for a minute. But he's really fast, and I don't always see it coming and sometimes he does get to her. I know even typical siblings fight, but I grew up an only child and I find it very scary. Also, it broke my heart to see my normally spunky, feisty girl cower in fear every time her brother came close to her. She was very clingy to me, which made Korban jealous and she also acted out some by being defiant and even hitting us. Thankfully, as things have settled down so has she, and she and Korban are playing together again. Just pray for their relationship and that God grants her strength and peace. She's an awesome little girl and I know God has big plans for her.
--Pray that I can live out my faith and not have negative thoughts. I feel more hopeful now than I've felt in some time, and it feels good. You can get through almost anything if you have hope that things will get better.
--Continue to pray for me and Brad, that we have wisdom to make good decisions for our family and to raise both our children in a godly manner. Also, we have an anniversary coming up next month--ten years. TEN YEARS!!! We've been married for an entire decade almost, and we dated for three and a half years before that. We have a little getaway planned, but we have never left our children overnight before. We have arranged to split them between the grandparents so that each set will only be responsible for one child. They are totally game and looking forward to it, so please pray our kids go easy on them and that everyone is healthy and that we are able to get away and relax without my stupid worry clouding the whole trip.
Thanks to my friends and prayer warriors. You guys mean more to us than you know! We appreciate you coming alongside us and lifting us up when we needed it and pray that the blessing returns to you a hundred fold. Happy Thanksgiving!
Oh, and when Korban's first IEP was done at age three, the ruling was Developmentally Delayed. That was before we were technically diagnosed with autism, although Brad and I knew that's what he had. I need to share our whole diagnosis journey, but that a whole 'nother loooong post. So for today I will just say that when he was finally diagnosed at age three, the developmental pediatrician diagnosed him with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). This is a condition on the autism spectrum meaning that the child meets some of the charachteristics for autism, but not necessarily all of them. For example, Korban has pretty good eye contact. Maybe not as good as a typical child, but probably more eye contact than many other autistic children. I used to think that PDD-NOS was like the least severe form of autism, but I read somewhere that while that can certainly be true, a child with PDD-NOS may be only mildly affected in some areas, but profoundly affected in others. This would be true with us--Korban has lots of language, although his communication isn't effortless, but he is more seriously affected in the behavioral/emotional area of things. I don't know if I'm explaining that very well, but that's just sort of my understanding of things. Anyway, we needed to update his ruling for his IEP, since he clearly is autistic. So after some testing by the school psychometrist, his updated ruling is now Asperger's. This was mainly due to his speech and language, even if it was delayed in coming. We had a neurologist appointment Friday, and I told the neurologist about his new ruling. He agreed and said "Yes, everyone who works with him needs to know he is high-functioning." Did you hear that? HIGH FUNCTIONING!!! Beautiful words to this mama. Yup, my son is high functioning. He might beat the mess out of you if he's upset and you are anywhere close to him, but he's high functioning. We can work with this. We can. We will find a way to help him cope with all the anxiety and communication issues.
I can say this with confidence now that things are going more smoothly. But I have to say, when you're right in the midst of one of those down cycles, it's hard to have that kind of faith. It's not that I don't believe--I do. It's just that it's so hard to keep that insight when things are going so rough. I get worried that they won't get better. I worry about the future. The down cycles seem to get harder and harder rather than easier as he gets older. And bigger. And stronger. My mind goes places I wish it wouldn't. But it's so hard to stop my thoughts from spinning out of control. I think "What if he hurts somebody? REALLY hurts somebody? What if it's Selah? What if when he's older he loses control and kills me?" Those are horrible things to think about. But when you see your child fly into a rage like I've seen mine, those are things you think. Or at least I do. I'm a great worrier. Not that it's a talent or anything... I think I'm actually better about it than I used to be, simply because I've been through some tough things and I've learned the hard way that I don't have control. That I just need to try my hardest and roll with it the best I can. I know how important a positive attitude is. I owe my family that. And most of the time, it's easy to be positive. It really is. We are so blessed. Even when things are hard, it doesn't mean they are bad. But when things seem so out of control, I struggle. I don't think that makes me weak, I'm just being honest. My goal is to be transparent and not hide things so that people understand what we are going through, both the good and the bad.
Okay, back to the neurologist appointment. Korban had two EEGs when he was two. The first one showed random electrical discharges, kind of like misfires I guess you could say. The doctors called this subclinical seizures. Those are basically small seizures that happen in the brain but there is not an outward manifestation of them. A while after that, we were admitted to the hospital and did a 24 hour video EEG. They hooked him up to electrodes and did video monitoring so they could see if there were any outward signs that were associated with the electrical discharges. There weren't. We've been on and off different seizures medicines. This latest EEG also showed slowing of the brain waves. When I asked what that mean, the dr explained that it doesn't point toward any specific condition or diagnosis but it is a pretty common EEG finding for patients on the autism spectrum. So basically, his brain isn't normal, but it's normal for him to be abnormal. Got it? Cause I'm not sure I do. Ha! I asked if there were any symptoms of the slow brain waves and he said it could cause delays in processing, behavioral issues, etc. I know a lot of times when we say something to Korban, or when something happens, it's like he has a delayed reaction to it. So I guess the EEG reading just confirmed that if it seems like he's operating on a delay, it's because he IS! And just let me add that this doesn't mean that every single autistic person is like him, I'm just referring to the one I know best. It also doesn't mean he's "slow" or unintelligent, it just means that his brain processes things in a different way than a typical person. I'm glad we at least know this, because I'm a big fan of having information and it serves as a good reminder that he isn't acting out simply because he's a bad kid or he's angry, he's just reacting to all the confusion and stress that's going on inside his head. I wish I knew what it was like to be him. I really do. I know I need to be more patient.
Okay, specific prayer requests:
--The neurologist is weaning Korban off the anti-seizure med he is currently on and starting a new med. We've been through so many medication changes, and it always makes me nervous. But the dr feels strongly that the other medicine would treat his problems in a better and more comprehensive way. So just pray that he reacts well to it, and it helps with no major side effects. And please pray that he continues to have good behavior at home and that things get better at school! I love having my sweet boy back. I missed him so much!
--I felt bad that I forgot to ask last time that you guys specifically pray for Selah. She's such an amazing little girl, and she loves her brother so much. She was totally freaked out when he was having such a rough time and he did pull her hair quite a few times and bit her leg that one time. People always ask us how we protect her from him, and all I can say is the best way we know how. I always try to keep myself between my two kids when I can tell Korban is getting upset and I don't usually walk out of the room and leave them alone, not even just for a minute. But he's really fast, and I don't always see it coming and sometimes he does get to her. I know even typical siblings fight, but I grew up an only child and I find it very scary. Also, it broke my heart to see my normally spunky, feisty girl cower in fear every time her brother came close to her. She was very clingy to me, which made Korban jealous and she also acted out some by being defiant and even hitting us. Thankfully, as things have settled down so has she, and she and Korban are playing together again. Just pray for their relationship and that God grants her strength and peace. She's an awesome little girl and I know God has big plans for her.
--Pray that I can live out my faith and not have negative thoughts. I feel more hopeful now than I've felt in some time, and it feels good. You can get through almost anything if you have hope that things will get better.
--Continue to pray for me and Brad, that we have wisdom to make good decisions for our family and to raise both our children in a godly manner. Also, we have an anniversary coming up next month--ten years. TEN YEARS!!! We've been married for an entire decade almost, and we dated for three and a half years before that. We have a little getaway planned, but we have never left our children overnight before. We have arranged to split them between the grandparents so that each set will only be responsible for one child. They are totally game and looking forward to it, so please pray our kids go easy on them and that everyone is healthy and that we are able to get away and relax without my stupid worry clouding the whole trip.
Thanks to my friends and prayer warriors. You guys mean more to us than you know! We appreciate you coming alongside us and lifting us up when we needed it and pray that the blessing returns to you a hundred fold. Happy Thanksgiving!
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