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Saturday, December 15, 2012

From the heart of the daddy figure!

Guest blogger here...I am Brad, the daddy figure in Essary 4.0. 

Yesterday was an emotional day for sure.  I had been sick and off work on Thursday and then was scheduled to be off on Friday for our 10 year aniversary.  We had planed to go somewhere but that fell through for various reasons, money being a big one, just saying.  No pitty cause we split the kids at the grandparents to spend the weekend for the the first time like ever and are doing a staycation...just like we did for our honeymoon, huh.  Well we wanted to post on facebook about our aniversary but were having trouble with the internet at home so didn't get to that morning.  Then word of the tragedy in Newton happened and it just didn't seem right to post about our stuff at that time.  So that is why we posted so late in the day to celebrate our day with FB.  We did have a good family day and I was glad to be home with my kids for the day.

Now as far as the shooting goes here is my opinion:

The guns used did not kill anyone.  I personally do not own a gun but I do collect knives and swords.  Not a one of my weopons have every harmed a persons life.

Evil was present.  This is not God's fault, He did not make this happen.  God allowed for evil into this world way back in the day so that we could experience Heaven one day.  There is only one way to do this and that is to have a personal relationship with the Lord and Savior Jesus Christ.  It would appear that this adult individual was not being led by the God that I know. 

They say Autism was a possible factor in the adult taking the actions that he did.  I'm not really sure where to go with this one but I do hope that the media has their facts straight.  I do hope that people don't just make up things and say hurtful things just to be doing it.  Wait what am I talking about?  Of course there is ignorance out there and these things will be said and happen.  People are mean.  Kids are mean to other kids.  When the wrong info is put out there then it hurts deep to those of us who are living with such as Autism on a daily basis.  Please do not make this a stereotype about EVERY person with autism will do this.  It is already a fear within us that we can not control this thing called autism so why make it worse for us.  Give support not discouragement.

Now for the most important and the purpose for me chiming in here.  I hope for this to be the encouragement that I intend for it to be to whoever needs to hear it right now.

They say God is not allowed in our Schools:

Yes it would be wonderful if we had a government that by their laws allowed freely for us to have the word of God in every aspect of life but at this time that is not so.  We have a government that allows for all freedoms and is not being led by God but by law.  I have no faith that a law would do anything with God being anymore in our school than he is now.  I am in almost every school in Corinth and Alcorn County at least once a month.  I see God in our schools.  For one I know for a fact that I take him with me whenever I enter because I have that personal relationship with Christ.  I do not say that to boast but just pointing out facts here. I see Him in my coworkers who also take into the schools their own personal relationships with the Savior and share that by actions shown.  I see Him in the kids I work with that talk about what they have done at church and home that reflect on a family searching for God.  I see Him in the many teachers that are very active members in the numerous Churches in the area.  I see Him in the Principal who is a Sunday school teacher.  I see Him in the deacons on the school boards.  I see Him in the superintendents who hold various leadership positions in their Churches.  I see Him in the cafeteria worker who prayers for your child as they prepare a meal for the day.  I see Him in the janitor who with God’s grace gives a helpful smile that means so much to a child.  I see Him in the coach that is a positive example who prays with the team.  I see Him in the countless number of parents who enter each school on a daily basis who train their children up in the way of our God.  You see God is already present and accounted for in our schools.  He can be there by the simple piece of paper that can be prayed over and put in a backpack.  A law will not make this happen any better than it is now.  A petition for a law will only take away the time that could be used to pray for or to witness to the countless number of individuals in our community that do not have this personal relationship with Jesus Christ.  What is the best use of our time here?  Is it to fight to get signatures for a possible vote?  And then what if we lose that vote, then what, what does that tell us?  Now just like the passing of liquor for the City of Corinth does not automatically make everyone in it a drunk, the passing of a law allowing God back into the schools would not automatically make everyone have a personal relationship with Jesus.  Both are a personal choice by each individual.  Even with laws a person must make the decision to purchase the alcohol and get drunk.  People need to be seeking after God and making the personal choice to follow Him.  The only way for this to happen is by witnessing to those who do not know Him.  That is where I believe time would be better spent.  So instead of a signature petition for a law why not put together tracts to pass out to the lost so they can know the way to be saved.  God is in our schools, He just needs to be in more lives!

Tuesday, December 4, 2012

How To Stay Awake

My newly turned three year old Selah is a PRO at fighting sleep. Seriously, she has some rather interesting techniques. During a particularly grueling nap that did not happen earlier in the week, I started thinking that if I was as good at avoiding sleep as she is, I might never sleep. I could get all kinds of stuff done. I realize many parents fight this same battle, so the next time you find yourself needing to stay awake here are some of Selah's tried and true methods:

1.  Do not stop moving. For any reason. Even if you can just keep your big toe twitching, that's probably enough to keep your whole body awake.

2. Should your mother tell you in her Very Serious Voice that you must keep your hands and feet still, contort your face into all sorts of strange and wondrous expressions. Someone might be able to hold your hands and feet still but eyebrows can't be stopped.

3. Ask your mother the name of every single one of your friends' mommy and daddy.

4.  Then inquire if the friend has brothers or sisters.

5.  Go ahead and ask if they have pets, too.

6.  Classify your friends into groups.  My favorite one of Selah's: Friends Who Pee Standing Up (aka boys) and Friends Who Pee Sitting Down (aka girls).

7.  Sing. Even if you are so tired your words run together and you sounds like a drunk, don't give up. Things are just getting interesting.

8.  Should anyone come along and offer you a friendly snuggle to aide in the sleep process, scream at the top of your lungs that they are CHOKING you. Remember, your goal is to stay awake, not fall asleep and anyone with different plans is clearly the enemy.

9.  Should you accidentally fall asleep, make sure you are draped across the windpipe of the person helping you get to sleep so that you actually are choking them. Then wake up as soon as they shift you off and start the whole process over.

10.  Lick your arm. (Disgusting!)

11.  Lick somebody else's arm. (even more disgusting! But effective.)

12.  Count your fingers and your toes. Repeatedly.

13.  Count your digits in every language you know. For Selah, this is English and Spanish. Thank you Dora and Diego.

14.  Get somewhat still and close your eyes long enough to instill hope in the heart of whoever wants you to sleep. Then shout "AM I ASLEEP YET?"

15.  Do your best impression of a worm crawling through hot ashes after drinking a java.

16.  Poke someone in the eye. Hard.

17. Ask someone to tell you a story. Then interrupt them to explain they are telling it wrong. Argue with them if they don't believe you.

18.  Pretend you are scared of something.

So there's her list. I'm sure I could add to it later as more things come to mind, or as more sleep avoidance methods come to her mind.

Wednesday, November 21, 2012

Hope

First of all, I just wants to say thank you to all the people that contacted me here on this blog or on Facebook, sent me cards (and fuzzy socks!) and by text and phone calls to offer love and encouragement after my last post.  It's so humbling to know that so many of you care about us, and it was such a blessing to me during a very low point in my life.  I'm so thankful to say Korban is doing better.  He is out of school on Thanksgiving break this week, and his behavior has been better than it has been in a very long time.  He hasn't been aggressive at all, and he hasn't even let loose his trademark scream.  He has been happy and talkative and very sweet and loving, and I'm a happy mama.  He is still struggling in school, so please continue to lift us up in prayer.  He is only attending school from 8:30-11:30 each day, and he is splitting his time between his mainstream classroom and the special education classroom.  He continues to be very aggressive towards school staff and his peers, which worries me and breaks my heart.  They have been so good and so patient about working with him.  We had an IEP meeting on November 12th, and I thought it was very successful.  His entire team was there, as well as me and Brad, and I felt like we got a lot accomplished.  There is a behaviorist coming to work with him every other week, and we love him.  I feel like he really has a good understanding of Korban, and has been able to offer a lot of helpful insight.  Plus, Korban adores him which is always a very big plus.  The last time he came to the school to work with Korban, he let Korban ride piggyback when he brought him out to meet me.  Korban was proud.  He feels that a lot of Korban's behavioral issues and aggression stem from his intense anxiety.  He said he could tell right away that Korban had a lot of anxiety, and he didn't seem freaked out by any of it and like he knew how to help him cope.  During the IEP meeting the behaviorist said regarding Korban's behavior "Well, imagine having THAT much anxiety and not really being able to talk it out with anyone."  Kinda puts things into perspective doesn't it? 

Oh, and when Korban's first IEP was done at age three, the ruling was Developmentally Delayed.  That was before we were technically diagnosed with autism, although Brad and I knew that's what he had.  I need to share our whole diagnosis journey, but that a whole 'nother loooong post.  So for today I will just say that when he was finally diagnosed at age three, the developmental pediatrician diagnosed him with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).  This is a condition on the autism spectrum meaning that the child meets some of the charachteristics for autism, but not necessarily all of them.  For example, Korban has pretty good eye contact.  Maybe not as good as a typical child, but probably more eye contact than many other autistic children.  I used to think that PDD-NOS was like the least severe form of autism, but I read somewhere that while that can certainly be true, a child with PDD-NOS may be only mildly affected in some areas, but profoundly affected in others.  This would be true with us--Korban has lots of language, although his communication isn't effortless, but he is more seriously affected in the behavioral/emotional area of things.  I don't know if I'm explaining that very well, but that's just sort of my understanding of things.  Anyway, we needed to update his ruling for his IEP, since he clearly is autistic.  So after some testing by the school psychometrist, his updated ruling is now Asperger's.  This was mainly due to his speech and language, even if it was delayed in coming.  We had a neurologist appointment Friday, and I told the neurologist about his new ruling.  He agreed and said "Yes, everyone who works with him needs to know he is high-functioning."  Did you hear that? HIGH FUNCTIONING!!!  Beautiful words to this mama.  Yup, my son is high functioning.  He might beat the mess out of you if he's upset and you are anywhere close to him, but he's high functioning.  We can work with this.  We can.  We will find a way to help him cope with all the anxiety and communication issues. 

I can say this with confidence now that things are going more smoothly.  But I have to say, when you're right in the midst of one of those down cycles, it's hard to have that kind of faith.  It's not that I don't believe--I do.  It's just that it's so hard to keep that insight when things are going so rough.  I get worried that they won't get better.  I worry about the future.  The down cycles seem to get harder and harder rather than easier as he gets older.  And bigger.  And stronger.  My mind goes places I wish it wouldn't.  But it's so hard to stop my thoughts from spinning out of control.  I think "What if he hurts somebody?  REALLY hurts somebody?  What if it's Selah?  What if when he's older he loses control and kills me?"  Those are horrible things to think about.  But when you see your child fly into a rage like I've seen mine, those are things you think.  Or at least I do.  I'm a great worrier.  Not that it's a talent or anything...  I think I'm actually better about it than I used to be, simply because I've been through some tough things and I've learned the hard way that I don't have control.  That I just need to try my hardest and roll with it the best I can.  I know how important a positive attitude is.  I owe my family that.  And most of the time, it's easy to be positive.  It really is.  We are so blessed.  Even when things are hard, it doesn't mean they are bad.  But when things seem so out of control, I struggle.  I don't think that makes me weak, I'm just being honest.  My goal is to be transparent and not hide things so that people understand what we are going through, both the good and the bad. 

Okay, back to the neurologist appointment.  Korban had two EEGs when he was two.  The first one showed random electrical discharges, kind of like misfires I guess you could say.  The doctors called this subclinical seizures.  Those are basically small seizures that happen in the brain but there is not an outward manifestation of them.  A while after that, we were admitted to the hospital and did a 24 hour video EEG.  They hooked him up to electrodes and did video monitoring so they could see if there were any outward signs that were associated with the electrical discharges.  There weren't.  We've been on and off different seizures medicines.  This latest EEG also showed slowing of the brain waves.  When I asked what that mean, the dr explained that it doesn't point toward any specific condition or diagnosis but it is a pretty common EEG finding for patients on the autism spectrum.  So basically, his brain isn't normal, but it's normal for him to be abnormal.  Got it?  Cause I'm not sure I do.  Ha!  I asked if there were any symptoms of the slow brain waves and he said it could cause delays in processing, behavioral issues, etc.  I know a lot of times when we say something to Korban, or when something happens, it's like he has a delayed reaction to it.  So I guess the EEG reading just confirmed that if it seems like he's operating on a delay, it's because he IS!   And just let me add that this doesn't mean that every single autistic person is like him, I'm just referring to the one I know best.  It also doesn't mean he's "slow" or unintelligent, it just means that his brain processes things in a different way than a typical person.  I'm glad we at least know this, because I'm a big fan of having information and it serves as a good reminder that he isn't acting out simply because he's a bad kid or he's angry, he's just reacting to all the confusion and stress that's going on inside his head. I wish I knew what it was like to be him. I really do. I know I need to be more patient.

Okay, specific prayer requests:
--The neurologist is weaning Korban off the anti-seizure med he is currently on and starting a new med.  We've been through so many medication changes, and it always makes me nervous.  But the dr feels strongly that the other medicine would treat his problems in a better and more comprehensive way.  So just pray that he reacts well to it, and it helps with no major side effects.  And please pray that he continues to have good behavior at home and that things get better at school!  I love having my sweet boy back.  I missed him so much! 
--I felt bad that I forgot to ask last time that you guys specifically pray for Selah.  She's such an amazing little girl, and she loves her brother so much.  She was totally freaked out when he was having such a rough time and he did pull her hair quite a few times and bit her leg that one time.  People always ask us how we protect her from him, and all I can say is the best way we know how.  I always try to keep myself between my two kids when I can tell Korban is getting upset and I don't usually walk out of the room and leave them alone, not even just for a minute.  But he's really fast, and I don't always see it coming and sometimes he does get to her.  I know even typical siblings fight, but I grew up an only child and I find it very scary.  Also, it broke my heart to see my normally spunky, feisty girl cower in fear every time her brother came close to her.  She was very clingy to me, which made Korban jealous and she also acted out some by being defiant and even hitting us.  Thankfully, as things have settled down so has she, and she and Korban are playing together again.  Just pray for their relationship and that God grants her strength and peace.  She's an awesome little girl and I know God has big plans for her.
--Pray that I can live out my faith and not have negative thoughts.  I feel more hopeful now than I've felt in some time, and it feels good.  You can get through almost anything if you have hope that things will get better. 
--Continue to pray for me and Brad, that we have wisdom to make good decisions for our family and to raise both our children in a godly manner.  Also, we have an anniversary coming up next month--ten years.  TEN YEARS!!!  We've been married for an entire decade almost, and we dated for three and a half years before that.  We have a little getaway planned, but we have never left our children overnight before.  We have arranged to split them between the grandparents so that each set will only be responsible for one child.  They are totally game and looking forward to it, so please pray our kids go easy on them and that everyone is healthy and that we are able to get away and relax without my stupid worry clouding the whole trip.

Thanks to my friends and prayer warriors.  You guys mean more to us than you know!  We appreciate you coming alongside us and lifting us up when we needed it and pray that the blessing returns to you a hundred fold.  Happy Thanksgiving!

Wednesday, October 24, 2012

The Post I've Been Too Stinkin' Tired to Write

I kept meaning to update this blog, and more stuff kept happening, and all the stories in my head were getting longer and longer, and I was falling into bed exhausted every night.  So I'm behind...and a lot has been going on.  So for the people who keep up with us, here it goes:  (And I hope I don't sound whiny.)

Medication:
Korban has been on Risperdal for quite some time now.  It's one of the only medicines that is FDA approved to treat irritability associated with autism.  Over the summer, we decided that maybe the Risperdal wasn't doing all that it needed to do to help him.  We added Celexa to help with his anxiety, and couldn't really tell any difference.  He also got a rash, and the doctor was afraid he had an allergy to it, so he took him off of it.  (Incidentally, we figured out later that the rash seemed to caused by him picking at his skin.  He does it so fast, we hadn't noticed that he was actually pinching himself.  It looked like he was just rubbing the rash.  So I'm still not sure if he ever had an allergic rash, or if what appeared to be a rash was him picking at himself all along.  At any rate, he was off the Celexa.)
Before school started, his doctor weaned him slowly off the Risperdal and changed him over to Abilify.  It's in the same class of medication as Risperal and we thought it might help a little more.  Initially, it seemed to be working really well.  He did great when school started back.  His teacher even commented that he seemed so much calmer and happier than he did over the summer during their kindergarten camp week.  But the pinching and picking at himself continued to escalate, and we began to wonder if it wasn't some weird side effect of the Abilify.  It's hard to know what's "just" the autism sometimes, and what other things in the environment are affecting him. Also, he began to have some pretty significant behavioral issues at school. So we decided to give another anti-anxiety drug a try, since we know he has pretty bad anxiety issues.  His doctor prescribed Buspar along with the Abilify.  Again, no significant change.  And for us to agree to keep him on a medication, there needs to be a positive difference in his life.  So during his monthly check-up at the dr, I asked if we could just wean him off both medicines and start fresh.  The dr agreed that this was a good plan, and said that he really didn't think Korban's behavior would get any worse, since the medicines weren't working very well for him anyway.  I agreed with him, and let's just say I have totally eaten those words. 

We weaned him off his meds, and I was pretty excited to be medicine free.  He seemed to do okay at first, but as time went by things began to get worse and worse.  There was a big uptick in screaming and aggression.  He continued to pick at himself and leave bruises from all the pinching, although his skin doesn't look quite as bad as it did.  He started throwing things and having more severe meltdowns.  It was getting harder and harder to calm him down.  He also started attacking his aide at school, every single day, pretty much all day long.  He would pinch her, hit her, and try to bite her.  She's a really nice lady, and he loves her, he just has a tendency to lash at whoever his primary caregiver is (usually me!) but while he's at school, she's his "person."  I was really worried about her and afraid she would quit her job.  She's really good with him, and I didn't feel that it was any sort of personality conflict between them or anything.  He also pinched his teacher and pulled the teacher's assistant's hair.  He sometimes pinches the other children and pulls their hair, too.  One day he slapped his assistant's glasses off her face and bent them.  I felt terrible, and didn't know what to do.  One day they took him to the vice-principals office so that she could help them out, and Korban threw his shoes at her and tried to bite her. 

A lot as happened, and I've probably forgotten to mention some of it already.  Korban had a very bad day at school Friday.  That was the day he slapped his aide and bent her glasses.  Sunday he had an asthma attack.  Monday I kept him home from school and took him to his regular dr to get him checked over to see what was going on.  Although he is verbal, he doesn't always tell us when something hurts and weirdly, he doesn't usually run fever when he is sick.  Wonder if that's part of the immune system issues?  Anyway, his throat was red but his strep test was negative.  So she thought he was just having sinus trouble and we decided to hold off on the antibiotics.  He was due for his IvIG infusion that Friday, so we thought if we could make it 'til then, that would get him over the hump, so to speak.

Also, Brad and I had been talking and trying to figure out what we could do to help Korban out at school.  We know he's getting over-stimulated, and wondered if the cafeteria was just sending him over the edge.  At his old school, they ate in the classroom, so he had never been exposed to that environment before.  He usually pinchs or hits at the children seated next to him at breakfast and lunch, and sometimes he gets upset and throws up.  So we asked if I could just bring him into school late after breakfast and then they could let him eat his lunch in the classroom.  Not a big deal, since I send his food anyway.  They said that was fine, so Tuesday I took him into school late.  I told them to call me if they needed me, and I was on pins and needles all day waiting for the phone to ring.  Around 1:00 it did.  Korban's teacher asked me if I could come pick him up.  She apologized for having to call me but said he had gotten completely out of control and they felt like he was a danger to himself and the other students.  So I grabbed Selah up and we raced off to the school.  I found out when I got there that he had been hitting and pinching pretty much since I dropped him off that morning.  He also was throwing everything he could get his hands on, to the point that they had to clear his desk off.  After that, he jumped up and grabbed another's student's pencil box and threw it across the room, where it smashed into the wall, scattering it's contents everywhere.  Due to a miscommunication, they did wind up taking him to the cafeteria at lunch.  He tried to bolt out the side door (bolting is so scary!) and then laid down in the floor and rolled around screaming when it was time to line up.  When they got back to the room after lunch, he started flipping the desks over...and that's when they called me.  They were so nice about it, but I just felt terrible.  When I pulled into the school to pick him up, I saw other kids out running and playing on the playground and I just thought "Why can't my son be happy like that?"  And I don't usually let my mind go places like that, but I was pretty down. (Did I mention that the week  prior he was put "on a break" from OT and Speech at the place where he has gotten therapy from since he was three?  Again, due to aggression towards the staff, and crying, which only started in the past several months.  He had always loved to go before then and had never had any major problems.)

Anyway, the school staff has been very nice and supportive, but I know his behavior is frustrating and we just don't know what to do to make it better.  Nothing seems to be helping.  Just as an aside, people often ask us why we don't just "tear his tail up/wear him out/etc. etc."  I have a newsflash:  YOU CAN'T BEAT THE AUTISM OUT OF SOMEBODY!  *Deep breath--stepping off of that soapbox*  There was a behaviorist at the school to observe Korban on Tuesday, so I guess at least he got an eyeful.  He is working on putting together a behavior plan for Korban.  Also, the school district has somone who does ABA coming out to work with Korban as well.  They also have a box of sensory equipment in his classroom.  Brad and I have done everything we know to do.  But it just isn't enough, and I don't know what to do next.  I talked to his teacher and we agreed behavior has been worse since completely coming off of his meds.  I told her I would call his doctor and also that I planned on keeping him out of school until things settled down a little.  I can't in good conscience send him when he's being like that.  It's not safe for him or anyone else, and even if I'm not there I still feel responsible. 

So with a heavy heart, I loaded up the kids and headed home.  When we got home I gave the kids a snack, and then gave Korban some Benadryl.  His doctor had told me the day before to give him some if he seemed like he felt bad, so I thought it would help.  She had also told me to give him breathing treatments to help with his wheezing and congestion.  So after the Benadryl, I gave him a breathing treatment.  He fell asleep but popped back awake as soon as I got up from his bed.  He asked to go outside, so we went outside to go for a walk.  He loves to walk this trail that is back behind our house, up into the woods, and it calms him.  He loves to pull the wagon or push his toy lawnmower.  We have an old Power Wheels Jeep that needs a new battery, and for some reason Korban wanted to push it that day.  It's pretty hard to push, but he's strong and he was doing a good job.  I pulled Selah in the wagon in front of Korban and he was pushing the Jeep.  About halfway up the trail, I noticed he stopped.  I stopped too, and waited for him but he didn't come.  I called back and asked if he needed help and he said no.  So I stood there and waited a little longer, and he suddenly turned and started running down the trail, back towards our house.  I didn't want him to get out of my sight, so I started running behind him.  Selah got out of the wagon and ran after me.  When I caught up to Korban, he spun around and turned on me.  I've never seen anything like it.  He was totally in a rage, and I don't know why.  It was scary.  I told Selah to RUN and get back in the wagon.  She was scared, though, so she ran to me.  I scooped her up in my left arm and tried to fight Korban off with my right.  He was pinching me so hard and clawing at me.  I was basically just trying to stiffarm him, and keep him away from us without hurting him in the process.  He was tearing my arm up.  He was crying, and Selah was crying and yelling "Please don't hurt Mama!  Please don't hurt Mama!"  It was awful. And even though I do my best not to lose control in front of my kids, before long I was crying too.  That just made it worse.  He gets upset if anyone cries and he was yelling "Are you sad?" as he continued to attack me.  Selah was nearly hysterical, wiping my tears and saying "Please be happy, Mama," over and over.  Pitiful.  At some point, I decided that if I could just hold him I could get him to calm down.  So I pried Selah off of me and tried to pick up Korban.  He was stiff and kicking at me.  Tried to bite me on my face, so I sat him down.  I made him sit down on the ground but he was STILL lashing out at me, so I held him down and just tried to keep him from hurting anyone.  He didn't like being held still, so I told him I would let him up if he would stop hurting me.  At some point during this struggle, I had dropped my cell phone on the ground.  When I let Korban up, he grabbed my phone and tossed it out in the woods.  I couldn't go looking for it, because that would've meant leaving Selah unprotected and I wasn't sure what Korban would do.  So I forgot about the phone, but it was unsettling knowing that I couldn't call anybody for help if I needed too.  Plus, we were in the woods for crying out loud.  I picked Selah up again and was holding her and Korban bit her on the knee.  Thankfully, it didn't break the skin but it did leave teeth marks.  He'd never bitten her before.  I tried to restrain him again, and at some point I decided that if we could just get back to the house we could go for a ride.  That usually calms both kids down and I thought that would be our best bet.  Brad's parents were supposed to be heading out to visit and help out with a few things that afternoon, but I figured I could leave them a note.  I somehow managed to get back to the house.  When we got inside, Korban flew into a rage again.  I locked Selah in the bathroom with me to wait it out.  A short time into this tantrum, I heard glass breaking.  I told Selah to stay put and flew out of the bathroom to check on Korban.  We were very blessed that he didn't manage to cut himself, but let's just say my porcelain doll collection had been significantly reduced.  That was the least of my worries at the moment.  I steered both kids around all the shards of broken glass and went into the kitchen to fix Selah a sippy cup before we left.  Right before I could screw the lid on it, Korban slapped it across the counter, spilling milk everywhere.  I left it like it was and hauled everyone out to the van.  I knew I needed to buckle Korban in first and get him settled, so I sat Selah in the driver's seat for the time being.  I was just trying to keep him away from her.  As I was struggling to get him strapped in (he was bucking and kicking) he pushed away from me and stood up.  He reached over the seat and Selah began to scream.  He handed me a handful of Selah's beautiful curls.  So sad.  I got him buckled in, got Selah calmed down, and then strapped her in her carseat.  He still managed to reach over and pinch her even though he was buckled in and I was afraid we weren't going to be able to take a ride, but he actually did settle down once I got out on the road.  I probably didn't even need to be driving--I was a mess, and still crying, but that was the best bet for calming everyone down right then, so I drove.  I was worried because I left my house unlocked with it looking like a crime scene, and my phone was still out in the woods somewhere.  I knew that Brad's parents would be worried if they showed up, and I never got to leave them a note.  Selah fell asleep before we even reached Iuka, and Korban was very content to ride and watch Veggie Tales.  I didn't know where I was headed, I was just driving.  We crossed the state line into Alabama (which wasn't that far from my house--we live close to the state line.)  I saw the sign for Riverton Rose Trail, and I turned onto it.  It's a pretty drive that goes down by the river with lots of pretty homes.  One house in particular I love.  It has these statues of horses in the big, rolling yard.  They are colored just like real horses, and when I saw them for the first time as a child, I thought they WERE real.  I've always loved those silly horses.  So as we were riding, I was pointing things like that out to Korban.  He loved looking at the water and kept asking me if we were in Florida.  Ha!  I wish!  I tried to comfort myself with the fact that we do have a lot of great memories together as a family.  Much more good than bad.  And I was trying to hold on to hope that things would be better.  They have to be!  Because if I wasn't still at least a little bit stronger than Korban, I would be seriously injured in the woods.  Just stating facts.  It was horrifying.  I kept telling myself we have to get the aggression under control, because if we don't, what if, what if, what if????  In some ways, it would've almost been easier to comprehend if a stranger had stepped out of the woods and threatened us.  Then, flight or fight would've kicked in, and I would've tried to escape with the kids.  If that wasn't possible, then I would've done whatever I could do to hurt that person before they could harm my family.  But when your own child is attacking you, all that stuff is out the window!  There is no flight, because I can't leave him.  He can't take care of himself.  He might hurt himself or wander off.  Not an option.  And I won't hurt him.  I will try to protect myself (and certainly Selah) from him.  But how do you protect yourself from your own child?  How do you protect one of your children from the other?  And perhaps most vexing of all, how do I protect him from himself?!?  I don't necessarily have those answers.  Just doing the best we can, and worrying that it isn't good enough.  That day, I drove until Korban started asking for something to eat, and then I headed home.  He fell asleep right before we got home.  Since both kids were sleeping, I parked the van on the trail and got out to look for my phone.  That was such a crazy time, and I couldn't remember exactly where we were standing when he tossed it.  I don't think I would've found it if I hadn't have heard it ringing.  I was able to locate it right after the ringing stopped.  Which was really awesome, because as soon as I picked it up, the battery went dead.  So I'm very thankful I found it when I did.  Not long after that, Brad got home from work and at least I had backup.  His parents weren't able to come that day, so it was a good thing that they didn't come and find us gone and the house such a wreck. 

Earlier that day, I had called the dr that prescribes Korban's medicine.  He wasn't in that day, but I left a very detailed message explaining what was going on and asking to go back on medication.  I also called the pediatric neurologist Korban sees and requested an appointment.  They scheduled us exactly one month from the day I called, which seems like a long time but is pretty quick for an appointment with a specialist.  A few days later, the psychiatrist's office called me back to let me know that he was calling in a new medicine for Korban.  He called in Trileptal, which is a seizure medicine that is also used to treat mood disorders.  Interesting, because we know Korban has subclinical seizures (seizures that show up on an EEG but don't necessarily have an outward manifestation).  We have wondered if the seizures were contributing to his impulsivity and aggression, so we felt that maybe this was a good choice.  It also has a low risk of side effects, which is a huge plus in my book.  (Some seizures meds have really scary side effects!)  He's been on a half dose of the Trileptal since Sunday.  We increase to a full dose this Sunday.  We have seen some improvements.  He is still having issues with aggression and meltdowns, although it is easier to calm him down and console him now.  He is struggling with OCD type issues, and increase in stimming, and a lot of "silly" behavior like being really hyper and laughing hysterically.  I'll take that over the aggression any day though!  He still hasn't returned to school.  Although we are proud that he is in a mainstream classroom, we are starting to worry that we've put him in over his head.  That's its too much for him.  As Brad said "Everyone's expecting him to act so normal, and he's just NOT!" No, he's not.  And I happen to think normal is pretty overrated anyway.  But the point is, I'm worried we've put too much pressure on him.  He was doing so well at first, but it just went downhill, and I don't know if we can get it back to where it was. 

I know this a really long post, and I really don't want this to seem like I'm trying to get pity.  I feel much better than I did this time last week, and Korban really seems to as well.  I'm just saying, if you happen to see me and I don't appear to be firing on all cylinders, please understand.  Go easy on me for the time being, and please understand that if I don't seem like I have it all together, it's because I don't.  Please just pray for us.  Pray for wisdom, that we will know how to give Korban what he needs.  I just feel like that wasn't him last week.  He's not himself when he gets like that.  It's like he's not lucid or something.  Whatever is going on with him, please pray that he gets relief and that he is able to communicate his needs.  Autism tends to have cycles, and you can't always predict what's going to happen or how to prevent it.  Pray for his school and the staff.  They have been so kind to us, and that really means the world.  I have heard horror stories from other parents about their schools, and I just don't know how I would've crawled out from under that too right now.  Kindness goes a long way and maybe more people need to remember that!  Pray that God uses our struggles to help someone else.  And things have been crazy around the house, so also pray that I suddenly turn into the Queen Mama of Organization and Routine.  I mean that.  I'm not an organized person by nature, but I'm working on that.  I really am.  I think better organization and more structure would be a comfort to all of us.  Thank you my friends and prayer warriors!  Love to all. 

Wednesday, October 3, 2012

I Touched A Frog And I Liked It

Well, actually I only just tolerated it, but after the whole frog touching incident my uncle asked was I singing "I Touched A Frog And I Liked It."  That made me laugh so hard I couldn't resist using it for my title.  So Mike, if you are reading this, thank you.  :)

Want to know why touching a frog is such a big deal?  Because I'm terrified of them.  Always have been.  Yes, as an adult, I know this is irrational.  They don't even have teeth.  They can't hurt you.  But I swear if one of those things jumped on me, I would hurt myself.  And let me ask you this:  if there's nothing fundamentally wrong with frogs, why did God send a plague of them on Egypt?  You don't read about there being a plague of bunnies or anything like that.  Nope.  Frogs.  'Cause even God don't like ugly.  (I'm just kidding.  God loves everybody.  Even Kermit!)
So with my frog aversion, what could possibly possess me to willingly touch one?  My feisty, frog-loving, sassy, sweet, fearless, persistent two-year-old, that's what!  Both my kids love frogs.  (Of course they do!)  And I've tried really hard not to let them know that I'm afraid of frogs, because I know there's nothing to be afraid of and there's enough stuff to worry about in life without worrying needlessly.  So if they want to love on those toady beasts, I want to support them in that.

Yesterday Selah and I were playing outside and she climbed up the ladder to her slide.  "Mom!" she yelled suddenly, "There's a frog and I TOUCHED it!"  Let me say here that she's chased frogs all summer and hasn't been able to catch one.  I moseyed over to see what she was talking about, and there was a little tree frog clinging to the top of her slide.  I will say that tree frogs are cuter than your average toad but more dangerous to freaks like me because boy can they jump!  So I approached it with caution but Selah was so sweet.  With wonder in her voice she looked up at me with those blue eyes shining and said "He came to play with us!" Now how do you argue with that?  And the frog sat there while she petted him.  She was very careful, only touching him lightly on his back with her index finger.  She asked me to get some leaves so she could feed him, and I reminded her that frogs eat bugs.  She gave the leaf a go anyhow, but the frog politely refused.  After this went on for a while, Selah turned those blue eyes to me again and said "Don't you want to pet him, Mom?"  "Um, no," I told her.  "Why not?" she asked, all innocence.  What do you do?  It's not like I'm going to tell her that I'm afraid of this tiny creature that she loves so much.  "Touch him!" she commanded.  And a part of me thought "Yes!  Do it!  Overcome this fear!  It's just a frog!"  Meanwhile, the other part of me was screaming "Don't do it!  It's a FROG!!!!"  For once, the brave side won (sort of) and I heard myself saying "Okay.  I'll touch it."  (Insert long pause here, while Selah waits for me to touch the frog)  After a minute passes, she said "Mom?  You're not touching it.  Why are you not touching it?"  Because I have to psych myself up, girl!  Give your mama a minute!  Seriously, all I could think that if I finally did make myself touch it, it would jump on top of my head and I would run screaming through my yard and into the street, thus becoming the hood ornament of the UPS truck.  But that didn't happen.  I was somehow able to force my hand to move, and it touched that frog.  The frog just sat there, thankfully.  Obviously he didn't know what a big deal this was for me, or he would've given me some sort of award or something.  He sat there until Selah tried to pick him up, and then he hopped down off the slide and she followed him around the yard for awhile.  While she did this, I called her daddy at work to tell him my latest achievement.  He was proud.  (Once he got done laughing!)  This is the man who used to have to get out of the vehicle and chase the frogs away from our steps when we lived in Batesville before I would get out of the car and go into the house.  So he could appreciate that this was a big step for me.  And Brad--when you read this--I am getting braver, but you are still not getting a pet snake.  No way, no how.

I said all that to say this:  I want to be brave for my children.  I'm sure all of you parents know that children can make you do things you thought you would never do.  I mean that in a good way, like being stronger than you thought you could be, or more patient, or whatever. Regarding our struggles with Korban's autism, and with his other health issues (immune deficiency, asthma) people tell us all the time that they couldn't do what we do.  I understand people say that by way of encouragement, but I think they are wrong.  You would do whatever you needed to do for your children, just like I've tried to do.  Or at least I hope you would.  I wish I was better at it!  I wish I had more answers.  I wish I was stronger, more patient, more knowledgeable.  I wish I was BETTER at this.  But the point is, I'm trying.  And I think most of the people who've told me that they couldn't do what I do, I think they would be trying too.  What is your only other option?  Giving up?  I won't.  I may feel like it sometimes, but I won't.  They are my kids, that I wanted, that I prayed and asked God for, and I'm going to do my best to take care of them.  I make mistakes.  SO MANY mistakes.  But I'm trying to learn from them.  I think part of the struggle is attitude, I really do.  I think instead of saying "Well, I just couldn't do that," I think we need to tell ourselves that we are strong, and can do whatever needs to be done.   My mother-in-law and I had an interesting conversation recently.  Brad had made a comment to her about her being a strong lady (which she is) and she was pleased.  She asked me did we really feel that way about her, and I told her of course.  She was surprised and said she had never thought of herself as a strong person.  I told her that was a mistake and that she needed to KNOW she is strong.  She's overcome a lot, but what else could she have done if she had figured out she was strong before me and Brad telling her?  ;)

"I can do ALL THINGS through Christ who gives me strength."  Phillipians 4:13

If you are praying for us, pray that I live this.  I tend to try to do things in my own strength, without reaching out to others or leaning on Christ as I should.  And let's face it, part of being strong is being able to take care of yourself and realizing how much you need help.  I'm humbly saying I stink at that a good bit of the time.  This past week and has been incredibly tough.  Korban's aggression--which was already plenty bad--has gotten even worse.  I have bruises and scratches all over and yesterday he attacked his aide at school.  His teacher had to pull him off of her.  He's screaming and agitated and we don't know why.  He has periods like this sometimes, and it can't be traced back to anything that we can see.  It's just part of the way the autism cycles, I guess, but it is very difficult.  I took him to his dr today to rule out any physical causes.  She didn't find anything significant.  He sees the psychiatrist tomorrow for his monthly visit to monitor his meds, etc.  We are considering asking the dr to step him down off of the Abilify.  The pinching/picking at his skin started after being placed on Abilify, and now the aggression has increased as well.  We didn't think there was a correlation, but we are starting to wonder.  At any rate, it doesn't appear to be helping as we hoped it would and if it's not making a life-changing difference, he doesn't need to be on it.  That being said, we may find out how much of a difference it was making if he weans off of it and things get even WORSE!  So please pray for divine guidance and peace for all of us.  We did get some products to help with his sensory issues.  We just got them today, and we are slowly introducing them to Korban but we are seeing some positive things happen already.  Tonight he fell asleep holding one of the little sensory toys.  It kept his hands busy so he didn't pinch himself while falling asleep.  I'm just ready for him to have some relief.  Every little thing like that is a victory, no matter how small it seems!

Sunday, September 16, 2012

The Hotty Toddy Potty and Other Tales of Ole Miss Football

Are.
You.
READY???

My husband Brad is obsessed with football--particularly Ole Miss football.  No, wait.  I think I got that backwards.  My husband Brad is obsessed with Ole Miss--particularly Ole Miss football.  Although he would watch them compete in chess, or water polo, or underwater basket weaving, given the opportunity.  One of the first questions he asked me when we met was if I liked Ole Miss or Mississippi State.  I gave him a straight-up honest answer:  "I don't care."  He looked completely shocked for a minute, like he wondered how that was even possible, and then he said "I can work with that."  And work with it he did!  Our first date was to an Ole Miss football game.  (Against Vandy actually, and we lost, but our relationship has thankfully had much better stats.)  Fast forward about thirteen years and last weekend while we were at Ole Miss hanging out with friends and family before the game we had the following conversation:
Brad:  "Hey, Melissa, remember when we were students here and we beat Florida and everyone was so excited that the fans ran out on the field and tore the goal posts down?"
Me:  "Yeah, I remember.  That was a great game."
Brad:  (obviously having some kind of brain malfunction)  "Was Tim Tebow the quarterback then?"
Me:  "No!  That was way before Tim Tebow.  Rex Grossman was the quarterback then, and after him was Chris Leake, and THEN Tebow."
Shane:  "Girl, I'm so proud of you!  Give me five."
Dez:  "Alright, Melissa, every guy here just drooled a little bit."
So yeah, I've come a long way for the girl who didn't care, not even a little bit.  I'm not nearly as obsessed as Brad, but I do love Ole Miss (our alma mater!) and I love sports.  And Tim Tebow.  :)

People often ask us what Korban's "thing" is.  Meaning his obsession.  Because, you know, all autistic people have a "thing." (Please note that was said with a little touch of sarcasm.  If you know one person with autism, then you know one person with autism.  But it is true that many people with autism have a particular strong interest in a certain area.) I was getting sort of worried because he didn't really have an obsession (except for bellybutttons, and I didn't want to call anymore attention to that!)  I mean, he likes Thomas the Train.  He likes trains, period.  A lot.  But he doesn't really obsess over them.  He likes balloons.  He likes Tigger.  He likes a lot of stuff, but it tends to shift around and it's hard to say at any given time what he likes the most.  But I'm beginning to believe that he is going to follow in his father's footsteps and sports are going to be his "thing."  We used to go to Jackson, MS for his doctor's appointments all the time and when we passed through Oxford Brad would drive through the campus and point out different things to Korban.  And Korban went to his first football game before his second birthday.  Once during one of Brad's drive-through campus tours, Korban got MAD because there wasn't a game going on.  I mean, seriously mad.  It was so funny.  I thought Brad was going to cry he was so happy.  Ha!  We had to stay in Jackson that night, and we wound up taking him to see the M-Braves play a baseball game.  He still remembers the Tomahawk Chop to this day.  And on the way back home, Ole Miss happened to be playing a baseball game, and we stopped and caught part of that game too.  Happy Daddy, happy Korban.

 Selah doesn't want to be left out of any of the action either.  She's a super-cute cheerleader.  Very enthusiastic too.  She had her first football game during Ole Miss's season opener this year.  It was a beautiful day and we were all very happy to be there.  Let me say though, Brad's pregame routine is NOT one of my favorite football memories.  He loves plowing through all the bazillion people in the Grove and then getting into the stadium super early.  When we were in school and had student tickets and the seats were first come first serve, I mean we got there as soon as the gates opened.  And he just rolled his eyes and smiled when I pulled a book out of my bag and commenced to read until the game started.  (Hey, I said I became a fan, not a complete nut like he is!)  So this day we walked around the Grove with our kiddos in tow until I had to stop and rest because I was having major neck pain.  I couldn't understand it--Brad was carrying Selah on his shoulders and I was holding Korban's hand and I just couldn't figure out why my neck was hurting.  Then I realized the bag I was carrying was packed with extra clothes for both kids, water, snacks, Korban's iPad, etc. etc.  Traded Brad the bag for Selah and I was good to go.  I swear, she was lighter.  Selah and I needed a bathroom break, so we found the Hotty Toddy Potty.  This is basically a trailer that has been divided into a good number of teeny, tiny, bathroom stalls. And yes, it really is called the Hotty Toddy Potty.  It even has that painted on it. Korban insisted on going in with us and I still don't know how all three of us managed to fit in one of those micro-stalls.  Korban refused to use the bathroom once we were all crammed in there.  Selah took care of business and then tried her best to open the door on me.  I was doing that thing where you talk quietly through your teeth and try to sound really serious and severe, telling her not to open the door.  I was speaking right into her ear, too, which was unfortunate because her hair was wild with all the humidity and one of her curls snagged right in my teeth.  Not even kidding.  So she was wailing "Ow Mommy!  You bit my hair!  You BIT my HAIR off!!!" and crying at the top of her lungs.  About that time Korban and his sensitive snout detected an odor that he didn't appreciate.  He was pounding on the wall in the direction of the noxious fumes all the while shouting "OH NO, MOM!  SOMEONE'S POOPING!  SOMEONE'S POOPING! OOOH NOOOO!"  Needless to say, I couldn't get them out of there fast enough.  We popped out of the exit with me looking all harried and I told Brad "I'm NEVER doing that again!"  Shortly after that, we made our way to the stadium and found our seats.  Things calmed down considerably after that.  Korban amazes me, because with all his sensory issues and everything, he can sit and watch sports and be so content.  He doesn't try to get up and wander around--he doesn't even really stim.  Sometimes he holds his ears because it's so loud, but he doesn't do that as much as he used to.  By the way, I find it a little ironic that we are always on him about not screaming, and that is actually encouraged at sporting events.  Well, not the exact kind of screaming he typically does--his is very sudden and angry--but still!  It's funny.  We always tell him not to scream because it scares people.  When the band came out to play, everyone cheered.  Korban turned to me and worriedly said "Those people holler.  Scare the band!"  Which really cracked me up because I'm very imaginiative and I got a great mental image of the band members tossing their instruments into the air and running off the field in terror as the people cheered.  But of course, that didn't really happen.  People also stomp the bleachers as they cheer, making the bleachers shake.  Korban said for days afterwards "Those people sure did cheer and shake."  Yes they did!  We weren't sure if we would stay the whole game, but we did!  I was so proud of the kids.  We got pom pons when we went in and Selah was shaking hers and cheering.  It was so cute.  There was an older man sitting next to her and he was very sweet.  He talked to her and played with her and she really liked him.  It's always good to have nice people to sit by.
*Flashback from Brad and Melissa's college years*
Remember earlier when I mentioned the Florida game that Ole Miss won when the goalposts came down?  That game is also memorable to me for another reason.  We got there super early to get our seats on the front row of the student section.  (Of course we did!)  Another guy got there about the same time we did and he sat down next to us and started chatting.  Now just let me say here that it seemed that many of the people at the games always had alcohol, even though it isn't allowed in the stadium.  They always found creative ways to sneak it past security.  I never knew just how creative until that day, though.  As our fellow student (whom we had never met before) was chatting with us, he proceeded to stand up, unzip his pants, reach in, and product a baggie of liquor which he added to his drink while I gawked at him.  "Oh, I'm sorry," he said, seemingly coming to his senses (or so I thought.)  Then, holding up the baggie he politely asked "Would you like some?"  Um, no.
1.  I don't drink.
2.  Even if I did, I wouldn't accept liquor from someone's crotch.  Thanks anyway.
*Flashback over*  Sorry about that ya'll.  I'm still haunted...

But like I said, our seatmates were super polite and our kids were well behaved.  After the game, I changed them into their pajamas and they slept on the drive home.  Korban fell asleep clutching his pom pon.  He woke up as we were transferring him to his bed at home and said "Thank you for Ole Miss," before falling back asleep.  Seriously, how cute is that?  Also, he slept with the pom pon beside his bed for the next week. 

We went to the game last weekend too.  It was great because our friends Jason and Dez and their kids Jack and Jakub came too.  They are the kind of friends that make everything more fun just with their prescence.  Their kids are great with our kids too, and our kids LOVE them.  Korban knows their names but usually refers to both of them collectively as "JackandJakub."  We're working on that one.  We ate before the game and also got to spend some time with Brad's uncle Shane and his family.  The kids had a blast.  Korban recently started a new anti-anxiety med and it makes him sleepy.  We gave it to him before going into the stadium and when we got to our seats, he laid his head in my lap and went to sleep!  I was worried, but he perked up when pregame started and did fine during the game.  He talks about going to Ole Miss and watching them play every day.  He told his teacher about it at school.  And he still totes the pom pon around.  Like I said, I think we've found his "thing."  And we're more than happy to support him in his interests.  :) 

The game didn't start until 8:00 tonight, so Brad and Jason went by themselves this time.  Good decision.  Korban was in bed asleep before the game even started.  Brad was worried Korban would be upset with him for going without him, but he wasn't.  He kept telling me today "Daddy go to Ole Miss.  Daddy going to cheer."  It was sweet.  The kids went to bed early and I have the house to myself.  I made a pan of peanut butter and jelly blondies (thank you Pinterest--they were divine!) and I'm watching the game as I type this.  Not going exactly like I hoped it would, but I think our team is going to have a good year and I really like Hugh Freeze.  No matter what happens this season, I know the Rebels have some seriously cute kids cheering them on! (And Brad looks pretty cute in the Ole Miss cape, dontcha think? ;)


 

Monday, September 3, 2012

Korban in Action

I had the idea to post a video on here on Korban.  I get a lot of questions about how verbal he is, etc., so I thought a video would be a good idea.  He's made SO much progress and we are very proud.  We're new to this whole video thing, so please overlook that.  I told Korban I was making a movie of him for my friends to look at.  :)  The video is of him looking at a book with me and us talking about it.  Selah was in the next room playing with Brad on the iPad and I had to stop my video because she ran in and interrupted to tell me that the Team Umizoomi app wasn't working right.  Ha!  But I'll use that for an example too.  You can see Korban get frustrated and take a swing at her right before I turn it off.  Thankfully, he missed. 

Thursday, August 30, 2012

The Happy Ball (Despite the perky title, this one's not for the faint of heart!)

 Korban is pinching himself to pieces.  Literally!  It started a few weeks ago, and he pinches his face, neck, arms, and legs.  Basically any exposed area he can get to.


This is what his legs look like. 

That's his face and neck...

And here's one of his arms.  His arms are actually looking a lot better.

 I don't really know why he's doing it, except that it seems sort of anxiety driven, and could be a stim (repetitive behavior--he has lots of them and he likes to change them up to keep us on our toes I think.)  He's had several worrisome habits, and as soon as he got over one he replaced it with something equally bad or worse.  A couple months ago he twirled his hair so much he started getting a bald spot on the top of his head.  We made a trip to the barber shop and he got his first haircut with clippers, and it was the shortest haircut he's ever had.  Incidentally, it was also the only haircut he's ever had that he didn't scream the whole way through.  Anyway, his hair was too short to twirl, so that pretty much took care of that habit.  Which moved us on to the next item:  throwing up.  Seriously. And I'm sorry to all the people I just grossed out.  Vomit is pretty much my kryptonite--I can't even stand to see people get sick on tv, when I know it's fake.  So when I say that I cleaned up so much puke recently that I'm so desensitized to it I could probably eat a sandwich with one hand and clean up sick with the other, I hope you understand just how much throw up I am talking about here.  (By the way, I haven't tested the whole desensitization theory with children who don't belong to me, so don't ask for my services on that matter just yet. ;)  Anytime Korban got excited or upset--which is pretty frequently--he threw up.  I think he could do it on command.  Which totally befuddles me because I dislike the whole process so very much.  He's always had a sensitive gag reflex and is extremely sensitive to different food textures so gagging/choking/throwing up while eating has always been a common thing for him but this took it to a whole new level.  When we went on vacation, he got sick every time we went somewhere because he was excited.  We have an "emergency kit" for our van that includes a bucket, garbage bags, antibacterial wipes, Lysol, extra clothes for all of us, etc.  Enough about that and sorry for the gross-outs.  A few weeks ago, Korban's doctor switched him to a different medication.  We couldn't see any negative side effects from it, and right away he seemed calmer and a little less aggressive.  Also, he stopped throwing up every day, which was awesome.  But then the pinching started...  So some of the family thinks the pinching is a side effect of the new med, but I really don't.  I have a call in to his dr, just to be sure, but I really think it's just a part of his autism and we are going to have to find some way to deal with it.  It's bad though, and it's very noticeable.  He has bruises and broken skin from all the repeated pinches.  And I can't just make him stop.  We have to physically hold his hands and restrain him from it and that just makes him more frustrated.  We tell him to stop, but he just does it all the more.  He does it everywhere--at home, at school, at church.  Brad went and got him from Sunday School a few weeks ago because he was pinching himself so bad and they couldn't make him stop.  I've started dressing him in long sleeves because his arms were looking so bad.  I hate to do that, since we live in MS and it's hot, but I don't know what else to do.  Besides that, the long-sleeved shirts seem to be a comfort to him.  When I put a t-shirt on him now, he immediately wants to take it off and asks me for a "big shirt."  He even wants to sleep in long-sleeves.  But I haven't been making him wear long pants, and his legs are looking rough.  He's pinching them more since he doesn't have access to his arms anymore.  He also is pinching his neck more, and I know that would get worse if I made him wear pants.  What am I going to do, dress him in a turtleneck and jeans and give him a heat stroke? Ugh...no easy answers.  So I messaged my new friend Kerry Magro, who you can check out here www.autismafter16.com, or  www.autismspeaks.org (look for Kerry's Korner), or here www.myautismmyvoice.com.  I was very grateful to him for taking time out of his busy schedule to help this worried mama! His suggestions were to figure out if it was truly a stim or if Korban liked the pinching sensation.  If it was a stim, then try to find a replacement such as letting him squeeze a stress ball.  If it's the sensation he's after, then try social stories to teach him about how it's not a good idea to pinch yourself.  I got right on this, and started trying to find something for Korban to pinch.  We tried a couple of small squishy toys such as a stuffed football he has, but he wasn't really into it.  I texted Brad, who works for the department of mental health, and asked him to bring a stress ball home from work--I didn't explain, I guess he thought I was having a bad day.  Ha!  But then I spotted a small hackeysack type ball just lying in the floor.  It was bright yellow with a smiley face on it, and Korban loves smiley faces so I thought it just might work.  I gave it to him and explained that he could pinch the ball if he needed to pinch something, or he could squeeze it when he gets nervous.  He took the ball and asked me if he would hurt it if he pinched it.  Sweet boy!  (But not worried about his own skin in the least!) I explained to him that he wouldn't hurt the ball at all and showed him how it had a smiley face on it so we know it's happy.  We started calling it Happy Ball, and it worked splendidly.  So well, in fact, that it started to lose the little pellets inside it within less than an hour of Korban's squeezes and pinches.  I think my little man has some stress.  We got ready to go to church, and I made sure to take "Happy Ball" with us.  We never let Korban take toys in church or school, but I was more than ready to make an exception for this one.  He actually wanted to leave it in the van, because he knows that we don't normally take things in, but I talked him into taking it.  We dropped Selah off at the nursery, and then I went upstairs to take Korban to his classroom.  We had just crossed the walkway over the church foyer when I looked back and noticed that he wasn't carrying Happy Ball anymore.  "Korban, where's your ball?" I asked, feeling a little panicky.  He didn't say anything.  I had a flash of inspiration and went and leaned over the railing to look down.  Sure enough, Happy Ball was flat on the foyer, a floor beneath us.  He was still smiling though.  I left Happy Ball where he was and took Korban on to his class and then I caught the elevator back down to the foyer and stuck Happy Ball in my purse.


This is Happy Ball after his second story dive into the foyer.  If you look closely, you can see some of his guts are hanging out the back.

The top part is the railing Happy Ball dove over.  Long way down!

I plan on sending it to school tomorrow if Korban will take it and the school doesn't mind.  I don't think they will.  The bigger problem will most likely be Korban tossing it overboard whenever the impulse strikes him.  But it works so well when he uses it!  He hardly tried to pinch himself at all when he had that in his hand.  I was so pleased.  I know we are going to need a back-up soon because this poor ball isn't going to be able to withstand such harsh treatment for very long.  I experimented after Korban went to sleep tonight and filled a latex balloon with rice and tied it closed.  It's just a small little blue pouch but it feels nice to squeeze and that might work well with his sensory issues.  We will see...  He's also having a lot of issues with separation anxiety.  He was sick last week and I had to pick him up from school early on Tuesday.  He missed Wednesday and Thursday, and Friday was our day to go to Birmingham for his IviG infusion.  So he was hardly in school at all last week, and that got him off his routine, and well as the round of antibiotics he had to take. Those always make him a little wonky. This week has been really tough at school, with him having meltdowns and crying when they can't tell what he's upset about. It's so sad.  Plus he asks for me all day long, full of anxiety.  "Mommy coming?  When Mommy coming?  Mommy come at 3:00?" His teacher said that he probably said it 500 times yesterday, and I totally believe she isn't exaggerating.  He's obsessive like that, bless his heart.  And once he gets locked into something it's almost impossible to budge him out of it.  He cried when I took him to speech therapy yesterday, and I had to go back with him and his therapist and stay in the room with him during his session.  He's been getting therapy at this rehab center since right after he turned three and I've NEVER had to go back with him like that.  He cried when I dropped him off at his class at church tonight, which he pretty much never does.  I hate seeing him like this.  I feel like people think he doesn't trust me to come back, but I've never left him before.  I tell him that we always come back to get him and try to reassure him, but he's so clingy to me. Even when we are home, he has to be where he can see me at all times and he cries for Brad if he is late getting home from work at all.  I don't understand it, but I'll take it over him ignoring me any day.  I just wish there was some way to ease his anxiety.  I'm looking at doing a picture schedule for school, to help him with transitions and so he will know what's coming next.  (That's very important!)  I also thought maybe I could put a picture of me at the very end, so he will know what activities he has to do before Mommy comes to get him.  We've had a lot of changes--a move over the summer and now a new school.  He's done amazingly well, but I feel like it's sort of catching up with all of us and it just breaks my heart to see him cry and hurt himself.  So please say a prayer for us!  I don't want to leave this on a sad note, so on a lighter note...here's some fun pics.  Some of these go with my post from earlier in the week--Tigger has quite a following so I wanted to include some shots of him.  ;)

This is Korban with Tigger on Panama City Beach during our vacation.  We all had a good time.

This is after we got home from vacation and Tigger apparently bragged to Baby Pooh about his adventures on the beach.  Baby Pooh went for a swim in the toilet, which then earned him a spin in the washing machine.  Korban loved watching him go around and around.  So much so that he started dunking all his animals in the toilet just to see me wash them.  The rule now is that if one of his toys gets dirty, I wait until he goes to bed to wash it.  Of course, he's not allowed to play with it while it's dirty!  But our washer has a clear lid and he just loves thing that spin.  Oh, and please note Tigger's stylin' sock-hat.  :)


This is when Tigger "bounced" up in the chandelier.  And in this picture, he's sporting one of his toboggans. 

This is Tigger "pooping in the woods," according to Korban and Selah.  (Dear Tigger, I apologize for posting this on the net.  Total invasion of privacy!)

And this is one of my new favorite pics of my kids.  My world!  :)

Monday, August 27, 2012

Impulse Control

If you've seen my posts on Facebook, you probably know that Korban has this stuffed Tigger that he is very attached to.  Tigger has been all sorts of interesting places: swimming at the beach (and in the toilet, and after that, the washer).  He  also "bounced" up and stuck in the kitchen chandelier.  So today I was playing outside with the kids after Korban got home from school.  There is a great trail in the back of our house that leads up into the woods and we love to walk it. The soil on it is really sandy and Selah loves to dig in it.  She's my nature girl.  She also likes to pick up different colored leaves and pretty rocks and caterpillars.  Korban likes to push his toy lawnmower on it or pull his wagon.  I got some great snapshots of Korban pulling Selah in the wagon last week.  It's very funny--the trail is uphill on the way and downhill on the way back.  So Korban has decided that Selah can only ride on the way back.  Less weight to pull uphill that way.  Smart boy.  And on the downhill, they go really fast.  Korban runs but it's more like he's trying to outrun the wagon rather than run with the wagon.  I keep having a mental image of the wagon building up speed and running over him, leaving him flat on the trail with tire treads on his back.  But that hasn't happened yet and they are having a lot of fun with it.  But back to Tigger.  This morning Tigger rode to school in the van with us.  He doesn't go into school with Korban, he just waits in the van for him.  Korban was distressed this morning because he didn't have a "hat" for Tigger.  He loves for his stuffed animals to wear hats and his definition of a hat is pretty amusing.  He likes for them to wear stickers and socks.  Brad's mom finally took pity on us having to tote around so many stuffed animals with socks tucked on their heads and knitted Korban several little toboggans for his animals.  But this morning he wanted Tigger to have a sticker hat.  Specifically, a "circle sticker."  So I told him I would have one waiting on him when he got out of school this afternoon.  Selah and I found some pumpkin stickers, which was a double whammy since it was a circle and Korban loves pumpkins.  He was very pleased to get it when I picked him up from school this afternoon and immediately fastened it to Tigger's head.  So pleased was he with the "circle hat" that he brought Tigger outside to play with us this fine afternoon.  Tigger even got to ride in the wagon!  Part of the way up the trail though, Korban stopped and removed Tigger from the wagon and posed him into a sitting position on the side of the trail. "What are you doing?" I asked him.  "Tigger needs to poop," he replied seriously.  Cracked me up.  So we started walking away and I went back to fetch Tigger before the dog made off with him.  "No!" Korban shouted and Selah said (in her bossy tone) "Leave him alone.  He's trying to poop!"  Well....If you've ever wondered about how Tigger's do their business, I guess now you know.   So we left Tigger and walked to the end of the trail and back.  When we returned to the spot, Tigger was still sitting and waiting for us.  Or according to my kids, trying to poop.  Maybe Tigger needs more fiber in his diet.  Anyhow, we walked some more and all was well.  On our last trip back by Tigger I convinced Korban to retrieve him so that nothing would happen to him.  We were walking out of the woods and Selah and I were walking ahead of Korban and Tigger.  I heard Korban's signature scream, and I turned around but I couldn't see anything wrong.  He was standing there at the edge of the woods, holding Tigger and looking angry.  "What happened?" I asked him.  He didn't answer.  He pretty much never answers that question.  Once he's upset, communication dwindles drastically, which is very unfortunate.  I could see what was about to happen, but I couldn't get there quick enough to prevent it.  Quick as a flash, Korban raised his arm and chunked Tigger into the woods.  Directly into the middle of a sizable briar patch.  Sigh.  Of course, he immediately started crying to have Tigger back, and I couldn't get him.  Why would he toss his favorite toy out into the woods?  Poor impulse control.  He was upset and he acted and he regretted it right away but couldn't do anything to change it.  Happens all the time.  Like with his aggression.  Even though I'm the person he's with most of the time, and he's very clingy to me, and I feel sure he loves me very much, I bear the brunt of most of his aggression.  It's very trying.  Anyway, I took Korban and Selah inside and tried to calm him down.  I never did figure out what got him upset to start with.  When Brad came home from work, I went down to the walking track to walk and spend some rare time alone and Brad played outside with the kids and successfully completed Operation Rescue Tigger From The Briars with only a few scratches.  To Brad, not Tigger.  My hero!  Korban and Tigger are now in the bed asleep and Brad asked me "So how did Tigger wind up getting thrown out into the woods anyway?"  I said "It's a long story.  First he was pooping in the woods, and the next thing I knew, he was out in the briar patch."  Nope, never boring.  Not around this house!

Monday, May 7, 2012

Maybe we should cut back on The Lion King...

Korban didn't talk until after he turned three.  We were so worried.  I thought he might never talk.  Over the years he has become more and more verbal, which is such a blessing.  I will never regret all those hours in speech therapy.  Even if I did take him to a dr's appointment today and as soon as the dr walked in the room Korban looked up at him and said "You look like a warthog!"  "Sweet Jesus," I thought, "HELP ME!!!"  I did not see that one coming.  Just for the record, the dr doesn't look like a warthog to me.  He is an ENT, and he does wear one of those little miner-light deals on his head, so maybe that looked warthoggish to Korban.  I honestly don't know.  What do you say when your completely unfiltered child blurts out something like that?  I don't know the answer to that one either.  The dr just went on about his business while I mentally slithered out of my chair and hid underneath it.  I'm sure I looked like I had been gonged over the head with a frying pan.  I wish I had said "Oh, I'm sorry.  You know he has speech issues and he gets the words 'warthog' and 'movie star' confused.  His speech therapist is working with him on that one."

We saw this dr for the first time three weeks ago due to chronic nosebleeds.  He cauterized Korban's nose, which has really helped the nosebleeds, but apparently Korban hasn't quite forgiven him for it yet.  (Let me just say that we put off cauterization for a long time and I regretted that because the whole thing was over in about 20 seconds and was much less traumatic for Korban than repeated nosebleeds.  Or at least I thought it was.)

I do recall telling the dr last time that Korban still manages to snore, despite no longer having tonsils or adenoids.  I always tell Korban that he snores like a warthog, so maybe that's how the connection was made.  When will I learn???

This appointment today was just a follow-up and other than the warthog incident, it went just fine.  Korban played on his iPad in the waiting room and he was really good.  He loves the iPad, and it is a lifesaver on days like today.  We've been working on an alphabet tracing app, and he's getting better at it.  He's also starting to recognize most of the letters of the alphabet, which is exciting.

Right now, Korban is snoozing and so far he isn't snoring.  And if he should ever happen to tell any of you that you look like a warthog, please know in advance that he dearly loves the Lion King, especially Pumbaa, and I'm sure he means it as a compliment.

Sunday, May 6, 2012

Free Donkey Rides At The Essary Zoo

My kids played together most of the day today.  This was really exciting for us, because they don't always play together and sometimes when they do it leads to bloodshed.  I remember when we enrolled Korban in his special needs preschool at age 3, I had just found out I was pregnant with Selah.  I remember talking to his teachers about it, and being worried about how Korban would handle a sibling.  They told me that almost every kid they taught had siblings (which was reassuring--I figured that if other parents could do it maybe I could too) and that they all did fine.  They said that most of the parents biggest complaint was the child with autism didn't interact much with their siblings.  Fast forward several months later to Selah arriving on the scene, and let's just say Korban noticed her all right.  Noticed, and cried incessantly when he saw her for the first time and even more when we actually brought her home from the hospital.  He was very jealous of me holding her and nursing her and it was a tough time.  But we made it.  And sometimes, he even acts like he loves her.  ;)  No really, he has come a long way.  He does interact with her, but he is sadly lacking in age appropriate play.  Simply put, she wants him to play with her, he wants to play with her, but he just doesn't always know how.  And when they do play together, somebody better be close by keeping an eye on them because he is rough with her and could hurt her.  Also, she is a typical little sister is the fact that she knows how to push his buttons and is usually brave enough to do that, even if she knows it won't end well for her.  But today, my kids played together.  They both played rough but no one got hurt.  We got home from church this morning and I was in a rush, putting some sandwiches together for a bridal shower at church this afternoon.  I was at the kitchen table making sandwiches when I hear Selah say "Look Mommy, I'm riding an animal!" And I look up and see Korban on all-fours crawling by with Selah perched atop his back.  They were both laughing and it was very cute.  They chased each other, and she rode his back, and he pulled her around by her sweater on the floor.  That last one worried me, but she thought it was hilarious and my floor is cleaner now.  Korban riding Selah around on his back was their favorite thing.  I asked Korban what kind of animal he was and he said "a donkey."  Selah said he was an elephant but he insisted that he was a donkey.  He kept saying "ride the donkey!" and she would hop on his back and off he would go.  It looks so funny because she's tall and her feet nearly drag the ground.  When they got done with that, he would sit on her.  Seriously.  He has a poor sense of space, and he doesn't always understand how hard he is grabbing at someone.  Basically he isn't able to tell exactly where he's at in relation to other people and he spends a lot of time trying to orient himself by running up and bouncing off of us and doing things like that.  I have to be vigilant in watching him with Selah because she is small, and he will quite literally sit on her, lay on her, push her down on the couch, etc.  He doesn't have to be mad to do this, he does it when they are getting along and trying to pay together.  I always explain to him that he can't do that because he will squish her.  Actually, my exact words to him are usually "Korban, don't squish her guts out!"  I don't know why I chose those words, but today it came back to haunt me.  He was squeezing Selah and trying to sit on her and she yelled "Stop it, Toe-ban.  You squishing my nuts out!"  Oh my.  And she said it repeatedly.  Apparently she can't say "guts" but "nuts" comes out loud and clear.  Of course it does.

This evening I was getting ready to give the kids a bath and put them to bed when Korban ran to his daddy crying and saying "Change clothes! Change clothes!"  This is nothing out of the ordinary.  He absolutely freaks if he gets a drop of food or liquid on his clothes.  He can't stand the sensation and immediately wants to change.  Before I finish this story, let me further illustrate this point by telling another story.  I left Korban at the kitchen table eating applesauce the other day and went to the laundry room to grab some clothes out of the dryer.  In a few minutes he came in there crying and wanting to change clothes because he dropped a little applesauce on his shorts.  Korban is very dependent on me, and I'm trying to help him be more independent.  Since it was only a small splotch, I explained to him that Mommy's hands were busy and that if he wanted his clothes changed he would have to go do it himself.  He is just now learning to dress himself.  He whined for a few more minutes, but I just kept on folding clothes and he eventually went on his way.  When I finished in the laundry room I found him at the table, calmly finishing his applesauce.  I thought to myself that I had handled that well and that he had obviously decided that if he was actually going to have to change his clothes himself, the applesauce on his shorts wasn't such a big deal.  I sat down beside him and told him good job.  He finished off his applesauce and asked for some more.  Still on a high from handling the clothes situation so well, I told him to go get more applesauce out of the fridge himself and I would help him open it.  He hopped up to do my bidding, and my jaw dropped.  He was butt naked from the waist down. Oh, he had solved the problem alright!  He had just taken off the clothes that were bothering him.  Now a small splotch of applesauce is enough to trigger a meltdown, but naked, he's totally fine with.  *Sigh*  That's gotta count for a little bit of problem solving skills, though, right?

Back to tonight.  Korban left Selah and ran to his dad crying to change clothes.  I heard Brad ask him how his shirt got wet.  He didn't have a drink or anything.  I was in the next room and I asked Brad if they spilled something on the floor and Korban rolled over in it.  Brad said no, that they didn't have anything to spill.  He kept asking Korban where he got the water from and Korban wasn't answering.  I asked Brad if Korban wet his pants, and he said no and told me that Korban's pants were fine and the back of his shirt was the only thing that was wet.  I started to have a sinking suspicion.  "Check Selah!" I told him.  He did, and found our culprit.  Our potty-training little sis had peed on her big bro during a piggyback (donkeyback?) ride.  Korban was not impressed.  Good thing I was planning on putting them in the bath soon anyway.  We got all the mess taken care of.  I told them I was proud they had played together and had fun today.  I was worried our donkey would retire after that whole incident, but he didn't.  He does have a new rule though:  all passengers must wear Pull-Ups.