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Tuesday, April 30, 2013

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. 

Monday, April 22, 2013

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: 
 
  video
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. 
 
 
 

video
 Likewise, this is Korban getting really into a package of socks.  That boy makes me smile. 
 
video
 Here he is fitting Uncle Clay in the "cowboy" hat.
 
video
 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!

Sunday, April 14, 2013

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....
 
 
 
 
 

Thursday, April 11, 2013

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. 

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.