More hard conversations, and also HOPE!

First of all, I just wanted to say we got an incredible response to my last blog post--lots of support and encouragement.  We appreciate it SO much and we love all of you guys.  Also, people have been checking on us and asking us how we are doing and I apologize for not getting on here sooner to post an update. With giving attention to Korban to prevent any behavior issues and then loving on my Selah who I missed all week it was difficult to get in front of a computer.  And as you can see when I get started I really let it go and it becomes lengthy.  This is a goal of mine to be able to take more time and blog more regularly so we will see.

We are home and doing well.  Korban got discharged from the hospital Wednesday evening.  Before leaving the hospital we found out that his EEG did not show any sign of seizure activity and his MRI was normal.  The neurologist took him off of the Depakote (seizure med) because his liver enzymes were elevated, which is not good.  It has a high risk of side effects and he doesn't need to be on it if isn't absolutely needed for seizures.  I'm relieved to be off of it.  We will start Trileptal later this week to help stabilize his moods.  So please be praying that it helps him and doesn't make anything else worse. 

As for the MRI, we had it done on Wednesday morning.  They came in early and took off his EEG leads and then started an IV so that would be done before he got down to the MRI waiting area.  It took them four tries to get the IV in, which I really hated.  But once we got it in, he was fine.  They gave him Benadryl to help calm him down and he went right to sleep.  He was still sleeping when we got down for the MRI and Brad got to take him back and lay him on the table so thankfully there was no trauma there.  The neurologist told us later that the MRI did not show any signs of brain damage or anything like that.  However, he did say that the history of the placental abruption combined with Korban's developmental history makes him suspicious of a mild brain injury.  Basically the thing that concerned him the most about Korban's history was how stiff his muscles were when he was a baby.  We noticed it and thought it was unusual but the pediatrician he had his first year didn't seem to be concerned.  In fact, no one ever mentioned it to us until we saw the developmental specialist at age two and a half.  The neurologist checked Korban's reflexes pretty extensively and pointed out some abnormal reactions to us.  He said that was also indicative of a brain injury, but if there is one there it's so microscopic the MRI didn't pick it up.  There's not anything we could do to "fix" it and there's really no way to even prove it's contributing to any of Korban's symptoms.  So it's pretty much another piece of the puzzle that we kind of know but it doesn't really mean anything.  

We also got some of the results of Korban's blood work.  Mostly everything was normal, except for the liver enzymes that I already mentioned and his iron and vitamin D were a little low.  Nothing major, but he needs some really good vitamins.  They sent off some blood to do a chromosomal micro-array.  This is the same test we had done about 4 years ago that found Korban's chromosome deletion, but the technology has improved and the dr wanted to see if another array would get us any new information.  But we won't hear from that for about a month, so I'm not even really thinking about it right now.

Also, the neuro-psych dr met with us again before we left.  He met with us individually because Korban was awake when he came and he didn't want to talk in front of him.  This was basically to give us the results of the testing that took place on Tuesday.  I wasn't sure how much they got out of the testing, because Korban was not wanting to cooperate.  They explained to us that the hospital isn't really the best place to test kids of course, but since he was there and we were willing, they got what they could.  The neuro-psych dr began the conversation by telling me that the results showed that Korban's IQ is 47 which means he has mental retardation.  Again, that was something new to us--no one has ever applied that diagnosis to him before.  We've always been told that he was too young to decide if he had any significant cognitive delays, and like I said before, Korban is not extremely cooperative with testing.  So I'm not totally sure if I believe that diagnosis.  I'm not in denial.  It is what it is.  If he does have mental retardation, we will deal with that too.  Doesn't really change anything.  I just don't want to underestimate his abilities and not expect things from him.  Just one brief example of why I don't think this is necessarily a good summary of his abilities:  Back in March, Korban had the ABLLS (Assessment of Basic Language and Learning Skills) done.  This was done at his dr's office in Southaven and Korban's ABA guy and a colleague of his did the testing.  In my opinion, it was very child friendly and was also pretty visually oriented. (Kids with autism tend to be very visual.)  At one point in the testing, they laid a mat with pictures of different animals on it out in front of Korban and asked him to name the animals.  He named every one, even the hard ones like "hippopotamus." I could tell they were impressed and I remember this well, because I thought to myself "That zoo membership paid off!" Okay, so with that in mind, the lady who did the testing on Tuesday said  to Korban "Now we're going to name some animals!"  I thought to myself "Great!  He's going to blow this out of the water!" and waited for her to pull out some pictures or something.  Nothing.  She said "Name as many animals as quickly as you can!" and Korban just sat there.  After about the fifth time we asked him, he got up and walked off, calling "Gorilla!" over his shoulder.  At least he got one.  And of course it would be monkey related. (He loves monkeys.)  And maybe she was specifically trying not to use any visuals just to see how well he could do with a verbal command.  I don't know.  But I didn't think the testing method suited him very well.  I had to fill out a ton of paperwork, and I didn't think some of it applied to Korban very well at all.  One question wanted to know if he could call a repairman if the refrigerator wasn't working.  No, he can't! Can typical seven year olds?  If they can, then I'm going about this parenting thing all wrong.  Maybe I should just scrap teaching Selah to recognize the letters of the alphabet and move on to the Yellow Pages.  Another question asked if he could be trusted to ride his bicycle one mile to a friends house.  Again, no!  For multiple reasons.  For starters, he can't even pedal a tricycle due to the gross motor delays.  And even if he could ride like Evil Knieval, no child of mine is going to be allowed to ride anything for a mile away from me, unsupervised.  Anyhow, like I said, it is what it is. 

That dr also went over the same stuff the neurologist did about how I needed to rely on others for help more, that I need to make sure to keep me and Selah safe, and that at some point we might have to consider a residential facility.  I asked him if Korban was significantly more aggressive than other children he has worked with.  He told him that what troubled him the most about Korban's aggression is that it is indiscriminate.  He said that other kids he has worked with were only aggressive towards their primary caregiver, because that's who they trusted the most and were the most comfortable with.  He said that while it is true that I bear the brunt of most of Korban's aggression, he will lash out at whoever happens to be around when he is upset.  This is true, and it is very troubling.  He also mentioned that he "felt sorry for us because we can't go anywhere."  I said "What?  We got lots of places."  And then I named some.  Church, theaters, the zoo, the aquarium, the beach, etc.  He was shocked.  He said "Aren't you worried about people seeing him hit you?"  Of course I worry about that!  I worry about him hitting me whether there's anybody to see it or not, but it truly is worse when you have an audience.  But we don't just stay at home because we want him to have the same experiences that other children enjoy.  We try to go as a family, so that we can work together to meet the needs.  Sometimes it goes better than others, but we are going to go places as much as we can for as long as we can.  Truthfully, it really stresses me to think that it might get to the point that we couldn't go places.  And he also mentioned that residential treatment might become a necessity at some point.

Also, both doctors made comments such as "You're fighting an uphill battle."  "He is a difficult child to raise." "This may get worse before it gets better."  "You need to plan for the future."  Again, all true stuff but not easy to hear.  Please know that it wasn't said to us in a hateful way.  They were doing their jobs and helping us to see the reality of our situation.  We are glad we had the tests done and were at least able to rule some things out.  We're thankful he wasn't having seizures, but it's weird because that might've helped explain some of his behavior.  We are sort of trying to treat the unseen and that's hard to do, but again, we're glad it wasn't worse. 

I told Brad later that I think people have a tendency to underestimate me a little bit.  They see me as someone small and soft-spoken and maybe interpret that for weakness.  Believe me, sometimes I feel VERY weak, but if there wasn't strength from God deep inside me, I wouldn't be where I am today.  So this little mama is ready to fight the good fight!  We are doing everything we know to do to make a good life for our family, but I think it is time to do what Emeril says and kick it up a notch.  Which isn't going to be easy because I'm already tired, but I will have to draw on that strength and move forward.  Because apparently, our lives depend on it. 

As I mentioned earlier, the amount of support we have received has been awesome and very humbling.  People have shared our story online, and checked on us daily to let us know that they are praying for us.  We appreciate every single person who has taken the time out of their day to do this.  I also need to say that we have gotten a lot of support from the professionals that actually know Korban and work with him on a regular basis.  I have to say, if me and Brad were saddened by the things said to us at the hospital, Korban's professionals were righteously indignant!  Which really bolstered my spirits.  I'm speaking of his teacher and his two ABA therapists.  His ABA guy came to see us Tuesday night, and Korban was really happy to see him.  He showed out too--it was very funny when the nurse came into get his vitals, Korban kept saying "Ow! Ow!" like it was killing him and looking over at the ABA guy to make sure he was listening.  But it wasn't a convincing performance because Korban was grinning the whole time!  Silly boy.  He seriously loves some attention. Korban kept stealing his hat too! 

When the ABA guy left, I walked out in the hall with him and told him what the drs had told us, especially regarding the whole institutionalization business.  He was shocked and appalled.  Said he had not seen any indication of that with Korban, and that this is the first year he's had ABA therapy and that he has only just begun getting it at school and at home.  Of course, Korban's teacher and our ABA lady felt the same way, which makes me feel really good.  Drs say what they have to, based on the brief snippets of our lives that they see, and on their past experiences, but these are the people that are working in the trenches with us day in and day out, so I value their opinions.  Of course, I have so much respect for the medical profession and I value their opinion too, but like I told the ABA guy that night, I need to keep my family together.  And I'm gonna need them to help me do it.  (I don't ask for much, do I?) Before he left that night, he told me to put the institution thing out of my mind as best I could. 

We left the hospital Wednesday evening, and since we were exhausted and Korban was begging to go back to the "hotel," we stayed another night at the FedEx Family House.  I cannot say enough good things about that place.  It was awesome.  So we finally got a decent night's sleep and Thursday when we checked out we went over to The Pink Palace--it's a cool museum in Memphis and we have a family membership through a Groupon deal--and then we had lunch at Incredible Pizza, one of Korban's favorite places.  I was more than ready to get home and see our sweet Selah, but I'm so glad we took some time to relax and have fun before we came home.  Like I told Brad, I just wanted to take some time and remind myself that we were leaving Memphis with the same kid we brought up there.  We had a great time and it helped a lot. 

People keep asking me if I am okay, and the honest answer is, I'm not too sure.  What is okay, anyway?  I'm in a much better place emotionally than I was last Monday.  I still have a sense of panic over Korban's aggression and what could happen if things don't get better, but I also have many reasons to hope and a belief that things WILL get better.  Thursday, Friday, and Saturday were all very good days for us.  Today has been tough, or at least the morning part was.  Korban had some pretty major meltdowns and lashed out at all of us some.  He's taken a very long nap this afternoon, so I'm hoping he was just tired and that he will feel better.  He has been very playful and in a good mood the past few days, and I just love seeing him like that. We all do.  He pulled Selah's hair once last night (the only time all day he was aggressive) and she just cried and said "I thought he was being a nice Korban!"  So pitiful.  He had played with her so good during the day and she doesn't understand why those things happen.  I try to explain to her but it is so hard, especially when I don't totally understand myself.  This morning Korban was trying to be mean to Selah and Brad held him so he couldn't get her.  He was screaming and crying and wanting to get down and Selah ran up and "spanked" her Daddy and said "Let my brudder go!  Don't you be mean to him!"  Which was really sweet and funny, but she truly doesn't understand why Korban is mean towards her sometimes or the measures we take to try to help him calm down and not hurt anybody. 

Thanks again for all the prayers!  Please keep them up.  Pray that we can have more good days, and that Korban responds positively to the change in meds.  We are thanking God for the good results on the EEG and the MRI. Keep praying for Selah, for her little heart to understand and accept her brother, and for me and Brad to be strong and courageous as parents.  And also, sane.  ;)  Pray for Korban's precious teachers and therapists.  I know they truly care about him and are called to do the job they are doing.  Thanks to everyone and may God richly bless you all. 

The Hardest Conversation Ever

So, we checked into LeBonheur Children's hospital at 5:30 yesterday morning for Korban's video EEG and MRI.  We were supposed to do the MRI first thing yesterday morning, but Korban got nervous and threw up while we were waiting.  He hadn't had anything to eat since around 10:00 the night before (he wasn't supposed to eat or drink after midnight) but the nurse was concerned because he was throwing up.  They have to sedate him for the MRI and it's dangerous to use sedation if there is food in the stomach, so they were worried his stomach wasn't totally empty like it should have been.  So we will do the MRI at the end of our hospital stay instead of the beginning.  Better safe than sorry.

After that, we checked into his room and they got the EEG leads hooked up.  We were really hoping it wouldn't be too traumatic.  He's had several EEGs before, and it's not easy to hook up.  He's very sensitive around his head and face, so you can imagine how it feels to have a bunch of little electrodes glued on.  The lady who hooked him up was excellent.  She came and played with him for a long time before she even talked about hooking up the EEG.  She let him see her equipment and how it worked.  He especially like the "blow dryer" part that they use to dry the glue.  The dr even approved for Korban to have a dose of Benadryl to help calm him beforehand.  It might've slowed him down a little, but he didn't fall asleep until afterwards and put up quite a fight during.  It's really hard to hold him, but it's not our first rodeo, so we managed.  Several nurses came in to help us.  At one point, one of them walked in and took one look at the scene in front of her and exclaimed "Oh, Lawd!"  My sentiments exactly!  Totally cracked me up.  I love the South. 

It was quite a dramatic (and loud!) scene for a while.  At the end, when all of the electrodes were on, they decided to give poor Korban a break before wrapping his head in gauze to keep everything in place.  One of the nurses went and got him a popsicle as a reward.  It was one of those big, rocket shaped pops.  He loves Popsicles, but he didn't even lick this one.  At soon as she gave it to him, he looked at it for a long moment and then broke it over my head.  Seriously.  The rocket pop broke in half.  I must have a really hard head.  Brad tossed the broken popsicle in the trash and I asked the lady if the video was running already.  She assured me that it was.  I asked her if we could get a copy of it for America's Funniest Home Videos.  Because the way I look at it, if I'm going to have a popsicle induced concussion, I might as well make some money off of it.  Also, I no longer like popsicles...

Immediately following that, Korban passed out asleep on Brad and everyone and their grandmama came in to get Korban's developmental history, medication list, family history, and I think maybe my bra size.  Brad asked me "Can't they just talk to each other and share this information?"  I told him that's not the way it works and they were just doing their job.  But it seriously was busy for a while.  Every time one person left, I would get up to go to the bathroom and another person would be knocking on the door before I could get across the room.  But we got all of that settled and Korban snoozed right through all of it.  We even had someone from neuro-psych come talk to us and explain that they were going to do some cognitive testing on Korban while we were here if that was ok.  Of course, we were fine with it.  That's why we are here--to find out any information that will help Korban feel better and do better. 

Then yesterday afternoon, while Korban was STILL sleeping, his neurologist who will be caring for us during this stay came to meet us.  Since Korban was sleeping, he asked me to step out into another room so that we could talk without us bothering Korban.  So we did, and he talked to me for a long time.  He's incredibly nice, and seems very knowledgeable, but it was not an easy conversation.  We started out by going through all the history and talking about why Korban was referred for the VEEG.  I explained that his doctor was worried that some of the rages he has could be caused by seizure activity.  He said that is very rare, but it is possible.  I told him some of the things that have been going on at home, and gave him some examples of Korban's aggression and impulsivity.  He started asking me questions like how often do I have time to myself, how much time do I spend with Selah without Korban, and how much time me and Brad got to spend together as a couple.  I tried to answer as honestly as possible without being defensive.  I know it's important to "take care of myself" and spend time alone with Brad and with Selah, but it's so much easier said than done.  And I explained all my reasons to him. For one thing, Korban does not willingly stay with very many people.  He even screams and cries for us the whole time we are gone when he is with his grandparents, for goodness sake.  Also, it is very hard to leave Korban with someone and come back and find that person bloody and bruised.  A few weekends ago, Korban and Selah stayed with my mom for a few hours on Saturday so me and Brad could do some work at our house.  When I went to get them, Korban told me right away that he had bitten Nana.  Sure enough, she had two distinct bite marks on her arm.  The skin was broken.  She was upset that he told me, but I explained to her that we need to know these things.  The next day, Brad's parents kept the kids for a little while so that we could teach a small group at our church.  When we got back and were loading the kids in the car, Selah informed us that Korban had hit Mammaw and broken her glasses.  Brad went back in and asked about it and his mom started crying and said she didn't want us to know because she was afraid we wouldn't let them keep him anymore.  I told the dr about all of this, and how I feel irresponsible leaving Korban with people when I know he could hurt them while I am gone.  He said that he understood, and that is was reasonable for me to worry about that, but I can't do it all myself and that they know what they are getting into.  It's just so hard. 

He also told me that it's very hard to treat aggression in children that have severe behavioral problems.  He said the few medications that they have to treat it don't work all that well.  This is true.  We've been on these medications for years, and they only take the edge off.   The edge is substantial though.  He was happy to hear we were getting ABA therapy for Korban.  But he wanted me to know that even if we do everything we can possibly do, there is a chance the aggression won't improve.  And Korban isn't getting any smaller, he pointed out.  He wanted to know what our safety plan was.  I didn't have a lot of really excellent answers.  He pointed out my size (I'm petite) and that we have a three-year-old who will always be younger than Korban and vulnerable to his attacks.  Reminded me that I have to protect her no matter what.  Then he asked me if Brad and I have discussed the possibility that we may have to institutionalize Korban if his rage gets to the point that he cannot safely be maintained in our home.  And for the first time in our whole autism journey, I absolutely broke down in front of a dr.  I didn't cry when he was diagnosed.   What was the point?  We knew he was autistic for a year and a half before the specialist actually told us.  It wasn't brand new information.  We weren't devastated.  Autism isn't the worst thing in the world.  It was just new hurdles to cross.  We were confident we would cross them.  So many things have gotten better.  Speech, sensory issues, etc.  They still need work, but there is improvement.  But not the aggression.  We've always been told "He's just three, it'll get better. He's only four, this will get better.  He's five, it will get better.  He'll grow out of some of this.  His aggression with lessen as his ability to communicate improves.  Just ignore it.  When he sees it doesn't get  your attention, he'll move on to something else."  And now here he is, seven years old, and a dr telling us that if things don't improve we may not be able to keep him at home.  Now THAT is devastating.  It's unthinkable for me.  I can't imagine doing that to my child.  I've always scoffed at institutionalization and thought I would NEVER do that.  And I still feel that way.  But if the aggression doesn't get better, what ARE we going to do?  How will I keep Selah safe?  How will I keep myself safe?  How can I keep Korban safe from himself?  The dr said "Remember, you need to take measures to protect him from doing something that can't be taken back.  Something he will spend the rest of his life regretting."  I guess I understand what he means.  Even now, Korban will hurt us, or break something and then sit in my lap and cry about it.  Sobbing over and over "I hurt mommy."  On Sunday he cried and cried because he threw the radio.  I tried to console him while he wailed "I broke it to pieces!"  It's pitiful really.  He has a conscience.  He regrets doing bad things after he does them.  He just isn't able to actually stop himself before doing it.  But we have to get to that point somehow.  The dr also told me that he wants to make sure we don't blame ourselves for Korban's issues--that nothing we did caused them.  We've both worried and blamed ourselves.  I had the placental abruption while I was pregnant, which I've always strongly suspected was the major causative factor in his autism. The geneticist found that Brad has a small chromosomal deletion which was passed on to Korban, and Brad worried that tipped the scales into somehow.  The dr literally said "You need to throw all this crap out the window.  Look at your daughter.  She's healthy.  It's not the combination of you two that made him have these problems.  These things just happen.  You're doing the best you can given your circumstances, which really are kind of terrible right now."  All this while I just sat there and cried.  Talk about a dose of reality.  And I know I needed to hear everything he said, and he said it in such a nice way.  But seriously, hardest conversation I've ever had in my life. 

After all of that, he told me he wanted to tell Brad the same things he told me.  Korban was still sprawled on top of Brad asleep when we went back into the room, so the dr explained all of this stuff to Brad.  When we got to the part about us making a plan, and that an institution might be a possibility if Korban was a threat to our safety, Brad turned and looked at me with tears glistening in his eyes.  I saw the same pain I had been feeling reflected there, and for a moment I almost wished that I could go back in time to the night Brad asked me out and tell College Brad to run from College Me.  Just to have prevented that look on his face right then.

I just felt broken.  I kind of shut down the rest of the evening.  When Korban woke up, he knew something was wrong with me but he didn't know what.  He's very sensitive like that.  He asked me if I was sad--my face was still puffy from crying.  And he slipped his hand through my arm and laid his hand on my shoulder and said "I love you Mama."  How do you even think about giving up a child like that?  In some ways I felt like the dr had just handed us some sort of terminal diagnosis.  Because I feel like I may lose my baby and I'm honestly terrified.  Please know I'm not comparing our situation to a parent who actually has lost a child because I know that is far worse, but I am saying that I'm grieving right now and very very worried.

The dr came back in and talked to us this morning.  Nothing abnormal has shown up on the EEG so far.  Most of the lab work they have done came back normal, except his iron and vitamin D levels are slightly low.  He needs extra vitamins.  His liver enzymes are elevated due to the Depakote (seizure meds), so we are stopping them immediately.  Since we are in the hospital we can go cold-turkey like that.  His liver will repair itself with no other treatment needed.  Depakote has a lot of dangerous side effects, and I'm glad to be done with it.  If no further abnormalities are seen on the EEG, we will be able to start Trileptal once the Depakote gets out of his system.  It's used to treat seizures and as a mood stabilizer, and has a very low risk of side effects so we are hoping for good results from that.  He reiterated that it's not his desire at all that Korban be institutionalized and that he isn't recommending that right now.  He said that Korban will surely be happier at home, and that he wants us to be able to keep him there but his job is to look out for all of the family and not just his patient and that he did have some concerns about our safety. 

Korban had not had an actual "fit" while we had been here and the dr said he was needing to see that.  He said that he doesn't want us to get beat up, but that he does need to see Korban extremely upset so that he can see what his brain activity looks like during that time.  He got his wish this afternoon.  We went down to the playroom.  It's also video monitored and they can hook up the EEG packs to go "wireless" while we are in there so the pack doesn't have to be plugged in and the kids have a little more freedom of movement.  We spent some time in there yesterday afternoon and Korban really enjoyed it.  So we went in there today and there was another little boy in there about Korban's age.  He really wanted someone to play with.  He asked Korban to play hide and seek with him, and Korban said no.  So he asked me, and his mom spoke up from her seat and said she would play with him when she finished deleting her email.  He asked her how many she had left, and she said 2,000, so I guess he understood it was going to be a little while.  So he decided to play tag with Korban.  He ran up to Korban and tagged him with both hands on the chest.  And Korban knocked him flat on his butt.  Sigh.  His mom looked all upset and of course the kid didn't like it any.  I explained that Korban is autistic and doesn't play like other kids sometimes and that I would keep a close eye on him.  But then the nurse came in (I guess they saw it) and asked Korban if he was playing nicely and the other little boy piped up and said "No he's not!"  So I said I would just take Korban back to his room, and the meltdown ensued from there.  When we got him back to the room he threw an open bottle of orange soda across the room, tore the pillows and blankets off the bed and threw them, screamed, and hit me and Brad.  Later when he was calm, I was sitting beside him on the couch while he was eating his snack and he grabbed my hair with both hands and just started yanking.  Brad had to pull him off of me.  And we've had several other episodes like that.  Not a fun afternoon, but maybe the dr saw what he needed to.

If he did see what he needed to, we will do the MRI in the morning and probably be discharged sometime tomorrow afternoon if there are no further problems.  We will hear from the psychological testing, MRI, and the chromosomal microarray at a later date.  So for now we wait and pray.  Please pray with us that God will either remove Korban's anger and aggression or show us a better way to deal with it.  Pray that my little family can stay together.  I never thought that would be an issue but I'm learning that you cannot take things for granted.  Pray for safety for my sweet Selah and an understanding heart.  I'm feeling pretty down right now and I know Brad is too, so pray for us that this will make us stronger and that we will be able to effectively parent BOTH of our children; that we will be everything they need us to be and that God will fill in the gaps that we, in our frail humanity, cannot. 

Birthday Blessings

I can't believe Korban is 7 today!  It does not seem like it was that long ago that I was getting to hold him for the first time.  Now I know what everybody is always saying kids grow up too fast--it's because it's true!!! 

We had his birthday party yesterday afternoon at our church.  It went really well, and I was so happy about that.  I wanted him to be able to enjoy himself, and I really feel like he did.  He wanted a bouncy house, even though he used to be afraid of them.  He still doesn't really jump in them much, but he sure does like to look at them.  For some reason, he especially loves to see them being inflated, and then deflated and taken down at the end and he got to see that yesterday so he was excited.  Right after it went up, Selah got right in, and Korban's teacher was able to convince him to get in the bouncy house.  We got in with them, and it was fun.  Although I still felt like I was bouncing around after I got out. 

We had a good turnout for his party, and I was thankful for all the people that were able to come out and celebrate with us.  Korban was SO excited.  He kept running up and giving people hugs, which was really sweet.  Except his hugs can just about knock you off your feet if you aren't prepared.  Thankfully, most everybody knows to lock their knees and assume their best football stance when they see Korban running towards them. 

Korban was looking forward to eating the cake--he loves  cake!  We went with a monster theme for the cake and food, since he loves the movie Monsters Inc.  Brad and I made his cake, which was fun.  My problem is I look at Pinterest, and I think I can do most anything, and I can't actually so my husband has to save me.  He's better at most of that stuff than me, but he doesn't want anyone to know.  Sorry honey.  Secret's out.  We did a layer cake, one layer was blue and the other layer was green.  We used the color changing Jello pudding for the filling between the layers.  It was a really funky green color and we thought it would be like slime oozing out when we cut the cake.  I discovered yesterday that I can make my own buttercream frosting.  I also discovered that I cannot make it without globs of butter flying about my kitchen like small aircrafts and flurries of powdered sugar flying up in my face and blinding me.  Not the first time something like this has happened to me, which led to Korban referring to my mixer as "the cement mixer."  I think I need a Kitchen Aid!  But anyway, the buttercream worked out, and we dyed it bright blue.  To decorate the top of it, we used "monster eyes."  (Marshmallows dipped in chocolate with edible eyes on them.)  I messed up one round of the eyes by adding too much food coloring to the melting chocolate and hardening it so that I couldn't dip the marshmallows.  Not wanting to waste good chocolate, I rolled it into balls and Brad placed them around the bottom of the cake.  Looked kinda like monster snot balls.  Sounds yummy, right?  Here's our finished product

 

 

 

Oh, and the cups are different color puddings with sprinkles, and googly eyes hot glued to the cup.  Those eyes are not to eat.  And we had green punch too.  Selah and I still have hands stained from food coloring and I think we used every bowl in the kitchen.  Totally worth it though!  When we got ready to cut the cake, Korban started singing the happy birthday song.  It was sweet. Then he let everybody sing to him and blew out his candle.  I was proud.  We used to really have to work on that when he was younger.

 

After that, he opened presents.  Again, I wasn't really sure how he would do, but he was good.  We had to chase him down a few times and bring him back to open more gifts, because he would open one thing and then run around to show it off to everybody.  He loves hats, and he got a new one.  He went and got his Uncle Clay and made him wear it.  He kept adjusting it to make sure it was just right on him. 

 

 

 

He got a lot of cool toys.  This one shoots water!

 

 

"It's over, it's over, it's all over now"

...a line from an Audio A song...

as he stands victorious over the downed bouncy house

 



 

And here's a couple of videos: 

 

 

When people ask me what to get Korban, I always say he's easy to please.  I think this video demonstrates that.  If you look closely, you can see the gift (an Ole Miss shirt!) fall out when he opens it--he had it upside down, opened the bottom of the box and the shirt came out the top. So when he looked in the box all he saw was paper.  He thought that was his gift, and he was WAY excited about it.  So funny. 

 

 

 



 Likewise, this is Korban getting really into a package of socks.  That boy makes me smile. 

 

 Here he is fitting Uncle Clay in the "cowboy" hat.

 

 My sweet Selah got some gifts too!  This is her opening one right before we left.  Please note all the background noise as me and the grandparents scream at Korban while Brad makes fun of us.  In our defense, he was trying to stick a leaf (and maybe his fingers) in the central air unit. 

 

Grateful for a happy birthday and that my kids have so many sweet people that love them!

Rays of Sunshine

Just wanted to say that we’ve had the best weekend we’ve had in a long time and I’m so thankful.  It’s always a blessing to be able to go out and have fun, and it’s something I don’t take lightly because it isn’t easy for us to just pick up and go usually. 

 

Friday evening we did a Relay For Life event at a local elementary school.  They served dinner and had people dressed up as various Disney characters for the kids to have their pictures made with.  Selah is very into Disney princesses and such, so she ate it up.  Korban did well but wouldn't really have his picture made with the characters.  He did tell Woody hello, and was very smitten with Belle from Beauty and the Beast.  "She's so pretty!" he blurted out.  (She was!  She could sing too, and the kids loved that.)

Yesterday was the Grove Bowl in Oxford, which is Ole Miss’s spring practice game.  It’s a great game for us to go to, because there’s no pressure—we know we’re going to win.  Ha!  Seriously, there are no irate fans and people screaming out inappropriate things and the crowd isn’t as big.  Also, it was free and that’s always a plus!  We’ve taken Korban to it every year as far as I can remember since he was a year old.  And Selah’s first game ever was a Grove Bowl.  Korban loves sports, and as I’ve mentioned before he is generally very content to sit and watch a game being played. 

As an extra bonus, yesterday Korban and Selah’s sweet cousin Abbie celebrated her birthday at the Grove on the Ole Miss campus and we got to spend some time with family that we haven’t gotten to see much of lately. 

Korban was very anxious to get to Oxford.  Matter of fact, on the day down there Selah said “I gotta go pee-pee,” and Korban said “No!  No pee-pee.  Go to Ole Miss!”  Man, he’s strict.  We were able to convince him that we had plenty of time to stop for a potty break though.  He was ready to get right back on the road, and he always knows when we get to Oxford.  This is so funny to me, because I’m not good with driving directions at all and I think he recognizes landmarks better than I do. 

When we got to the stadium, Korban and Brad sat down with their game faces on, waiting for the game to start.  They had music playing over the loudspeakers, and Selah danced her little heart out.  She cracks me up.  That girl can move!  When the game was about to start and the music stopped, Selah turned to me and said “Is it time to go home now?” Ha!

It was pretty loud in the stadium but overall Korban handled it well.  He won’t wear headphones to muffle noise because he doesn’t like for stuff to touch his face.  He covers his own ears, or holds my hands over his ears.  But he got accustomed to the sound after we had been there for a while, and we didn’t have to hold his ears anymore.  He loves pom-poms, or as he calls them, “streamers.”  He actually loves to pull them apart and play with the pieces, much like he does Easter grass.  It’s a big sensory thing for him.  After having an issue with shredded streamers pieces throughout our house on Friday and Korban obsessing over them, I told him that pom-poms were only for cheering.  He was very careful to take a pom-pom to the game with him Saturday, and he did use it for cheering and for pulling the pieces through his hands to calm himself, but he waited until after the game to shred it. 

We had a nice ride back—the kids were tired!  The kids had done so well during the day we decided to go see a movie since we got home in time.  We love going to the old drive-in movie theatre in Iuka.  Just a tidbit of info here-- I have to say I think drive-ins are very sensory friendly for kids like my Korban.  We park our van with the back end of it facing the movie screen and sit in the back with the tailgate open so we can see.  This gives the kids freedom to move around a little when the wiggles hit.  Also, since the sound comes through the vehicle’s radio, we can control the volume.  We can also pack our own snacks and drinks and distribute them as we want.  And since everyone is in their own vehicle, there’s not nearly as much worry about disturbing other movie-goers.  Incidentally, Korban usually does very well in a traditional movie theater too, and for a long time he was easier to take to a theater than Selah.  As long as he has popcorn, he’s good to go for the most part.  I “movie-trained” Selah a couple of summers ago while Korban was in his extended school year program.  The Malco in Corinth plays children’s movies a couple of days a week during the summer and admission is only $2.00.  I would take her and leave early when she got restless, increasing our time a little each week.  That way we could build up slowly and I didn’t have to worry about wasting a ton of money or making Korban leave a movie early because of his little sis.  Sorry for chasing that rabbit, but people ask sometimes how we get our kids to sit through movies and that’s pretty much how.  Build up slowly, pick sensory friendly theaters as much as possible, and stuff with popcorn.  :)

We saw The Croods last night, and we loved it!  Before we went to the movie, we decided to run by Wal-Mart so I could pick up some bug spray.  Needless to say, with Korban’s skin picking, mosquito bites are not something we need.  As we were heading on to the theater, Korban was excited and was getting pretty wild.  Brad asked him to say a prayer to help him calm down.  He prayed “Dear God, bless us and keep us safe and healthy.  Help us have good week.  Bless mosquitos.  Help them not bite us.  Or crabs.  Or jellyfishes.  Or sharks.  Or whales.  Bless dogs.  Amen.”  At this point I turned to Brad, trying not to completely crack up and said “What kind of movie does he think we are going to if he needs to pray for protection for all the ocean creatures?”  So funny.  He’s getting more verbal all the time, and I just love it.  We never know what he’s going to say.  As we were leaving the stadium yesterday, I tripped over Korban and he looked at me very seriously and said “Do not kill me dead.”  We laughed so hard.  I didn’t know he even knew those words, but he obviously knows Mom is clumsy and dangerous.  And also, on the way back we stopped at a service station and they had some headless mannequins displaying shirts.  Korban looked at them wide-eyed and said “They broke their necks!  Are they sad?”  It was funny and cute that he was worried about them.  I don’t even really notice stuff like that, but he doesn’t miss anything. 

I know we’ve had a lot going on lately, so I wanted to post something positive about this weekend.  Korban’s behavior was good yesterday, and I didn’t get hit a single time.  So thankful!  Not sure if it was just because we did stuff he had been really looking forward to doing, or because the h. pylori meds are helping him to feel better or what, but I’m hopeful we are starting an upward cycle.  Anytime we have a successful family outing or even just a peaceful weekend at home, I’m grateful and I don’t take any of it for granted! 

Selah and Minnie Mouse

Selah was a little shy at first, so this sweet beauty offered to hold her for their pic.

 

Selah loves Peter Pan, and Wendy let her hold the bear.

 

Daisy told Selah she likes her skirt, and she was so proud.

 

My kids with Belle.  Korban was so smitten, and Selah was asking if she could touch Belle's dress. 

 

At Ole Miss.  My boys have their game faces on, and Selah has her "ham it up" face on.

 

 

Me and kids with Mike Marry.  He was very nice.  He's the recipient of the Chuckie Mullins award this year.

 

Selah taking Abbie her gift.  We didn't wrap it, so she was hiding it behind her back.

 

 

Abbie looking at the babydoll, along with her brother Graham and Selah. 

 

Korban enjoying the sunlight, playing with his beloved streamers.

 

Blessings....

 

 

 

 

 

A recap of our afternoon--Korban lost his temper and I lost my pants

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. 

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.

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!