Thursday, June 27, 2013

Cleanliness is NOT Next To Godliness...Which is Lucky For Me

How many times have you guys heard the quote "cleanliness is next to godliness?"  People quote it like it's gospel, when in fact, it's not in the Bible.  Or at least not in the one I've read.  If you've got chapters and verses, please share them with me.  That's one of the things that I grew up thinking was in there somewhere, and as an adult, I've discovered it's not.  Which is probably a good thing, given the way my house looks the majority of the time.

I'm not saying it isn't important to take care of your stuff and have a clean and organized home.  I'm just saying I'm still struggling in this area.  Proverbs 31 gives us a great idea of what a godly woman is like, and I'm afraid I'm lagging behind in many of those areas as well.

I have so many excuses--and some are even pretty valid!  So much going on, a child that is aggressive and destructive, the list goes on.  But we are getting ready to make some changes around here.  We are about to implement a visual schedule for Korban, which will hopefully ease his anxiety and lower all of our stress levels.  That's something we should've done a long time ago, and I'm anxious to hit the ground running with it and see how it goes.  It's not going to be easy for me, because like I've mentioned a couple of dozen times on here, I'm not naturally an organized person.  But I figure I must have the capabilities somewhere in me, or else we wouldn't be getting to our multitude of doctor and therapy appointments, so maybe there's hope for this house yet.

We're in the process of reorganizing Korban's room.  We used to put him in his room for time-out, which he hated.  He tried numerous things to make us let him out of time-out:  Screaming, crying, biting and hitting himself until there was blood, making himself throw up, peeing in the floor, throwing things.  But the final straw came when he threw a toy hard enough to break one of his windows.  It didn't shatter, it just cracked it, but it was still scary.  So now we are trying to make his room more of a calm down spot for him in hopes that we can  meet his sensory needs and relieve anxiety, which will hopefully equal less time-outs period.  We're blessed because one of his closets is deep with shelves in it--we use it for toy storage and his other closet for hanging clothes.  Storage is at a premium in this house, so we're really happy that his room is set up like that.  I'm planning on keeping the toys put away in the toy closet when he isn't actively playing with them so that will give him less projectiles to send through the air.  He isn't nearly as bad about strewing his toys as Selah is--mainly because he doesn't have traditional play for the most part, which we are working on.  We are trying to set his room up sensory wise to meet his needs.  Of course it still has the furniture in it:  His race car bed, desk, a train table, and a toy box.  We got the swing we ordered from Amazon today.  I'm so excited about it!  It's not a "therapy" swing, but I feel sure it will have the same effect but without the outrageous markup price. It's a hammock swing, but I think it will cradle him the same way and I really think he will enjoy it.  The therapy swings cost around $200, this one cost $20.00.  We still have to pick up some materials to hang it with from Lowe's, but I think it will be a good thing for him.  He loves to swing. 

We were outside playing when the UPS truck came to deliver the swing.  Korban was pretty amazed with the UPS truck.  He first asked me if it was his ABA guy.  (Because he normally drives a UPS truck?!?  Not sure where he got that one.)  I explained that it wasn't, and he walked with me to get the package.  When the driver handed it to me off the truck, Korban said "I want more!"  Cracked me up, because he doesn't even know what it was we got.

Selah does though.  Korban was already asleep tonight, and I was fixing her a bedtime snack.  She asked me what was in the box, and I excitedly told her it was a swing for our house.  She was happy, and asked me where we were going to hang it.  I told her in Korban's room.  I went about my business fixing her snack, and when I called her to come eat it, she didn't come.  I peeked back into the living room and found her sitting on the couch, in full pout mode.  I asked her what was wrong and she said "That's so mean!"  Clueless, I asked her what was mean.  She said "You're gonna hang that swing in Korban's room.  I want a swing for MY room!"  Oops.  Good thing those swings are cheap, huh? 

But back to our plans for Korban's room--I thought about doing a ballpit.  He loves those.  And we already have the stuff to do it with.  The problem is, he adores inflatable things, but he wants to squish the air out of them 100 times a day and beg us to blow it back up for him, so I'm thinking that might be a source of frustration.  Maybe I could seal the opening to the ball pit with duct tape?  Thoughts, anyone? 

I just need to get things in better order for all of us.  I love Pinterest, I really do.  My husband doesn't understand this.  I'm not sure why.  Every night when we have a few minutes of down time, he always asks me what I'm looking at on my Kindle, and I always say "Pinterest," and he looks all pained and rolls his eyes.  I don't see what the harm is.  Maybe he's worried it's gonna make me want to spend a lot of money, or make a really long honey-do list, or maybe he thinks I should be DOING and not PINNING so much.  (If he's thinking that last one, he's probably right about that.) But it is an excellent source for ideas, and there's even all kinds of stuff relating to autism and sensory issues on there.  So I'm not sure what his grievance is against it.  Maybe I do tend to get a little overwrought with things sometime.  I don't need to judge what our family is doing by what all I see on Pinterest, or I would probably be dissatisfied.  But discontentment is not really the issue for me.  I don't think so anyway.  I think it's more or less worry about me not measuring up.  Remember what I said earlier about being a Proverbs 31 woman?  I don't care about keeping up with the Joneses, but on the whole Proverbs 31 business I tend to think everyone is doing it better than me.  I'm all like "Oh hey, I want to budget, coupon, plan our meals, stock our freezer, make our own clothes, churn our own butter" and pretty soon I'm like "How am I going to churn our own butter?  We don't even have a cow yet!  WE NEED A COW!"  Which is probably not healthy.  Because we don't need a cow.  Maybe I am too into Pinterest.  At any rate, whenever Brad asks me what I'm looking at one the Kindle, I think I'm just going to say "Robert Pattinson" from now on.

I need organization.  I need calmness.  I need peace.  And it probably wouldn't hurt if I got back into meal-planning and maybe threw a few meals in the freezer. I want our home to be a haven for us.  My number one goals right now are to get Korban's room sensory friendly for him, and to get my house not spotless, but clean enough that I don't go through the Five Stages of Grief every time I know someone's going to see it. 

Not familiar with the Five Stages of Grief?  I learned about it in college when I was studying to be a social worker.  Kubler-Ross's Five Stages of Grief are as follows:
1) Denial
2) Anger
3) Bargaining
4 )Depression
5) Acceptance

I could be wrong, but I think I may be the only person ever to relate this to house-cleaning responsibilities, but at any rate, here it goes.
1) Denial--They aren't coming over until next week.  I've got plenty of time!
2)  Anger--My husband is a pig!  I am a pig!  And we are raising little piglet children!
3) Bargaining--To my mom "If you will keep these kids so I can clean my house, I won't ask you for anything for a week!"  To my husband "If you will clean up your man-cave, I will cook roasted peppers and sausage for dinner and then rub your feet."  To my children:  If you don't pick up these toys, they are going to some other kid's home so their parents can trip over them and not me!"
(Wait, I think that one might be a threat and not a bargain...)
4) Depression--It's never going to get any better.  For the rest of my life, I will have to open my kitchen cabinets and run from the immediate onslaught of mismatched plastic storage containers and lids, which by the way, do not fit anything!  How does that happen?!?
5) Acceptance--They are coming to see my slovenly ways, and there's nothing I can do about it.  Maybe they have bad eyesight.

I seriously went through these stages last week before Korban's ABA guy came to observe and help us develop a plan for behavior management in the home.  I'd had a rough week and the house really was a hot mess.  I dreamed that he came in and told Brad to take the kids and then took me through the house room by room and told me what I needed to clean!  Thankfully that did not happen. 

I think I'm just stressing because we've lived in this house for an entire year now, and I thought we'd be more settled by now.  So, so thankful that we moved and we love living here, but I need to learn how to sort the chaos.  We are working on it.  I attacked the kitchen today.  Even scrubbed the baseboards.  Brad didn't know what a baseboard was or why one might need to get scrubbed, but when I showed him, he was proud of me.  Good night, everybody.  I'm going to go look at Pinterest.  :)

Monday, June 24, 2013

Fun times at Space Center and Spring Park…The screams to get there, not so much…

So after Brad had been out of town for most of last week, he had a little bit of comp time due at work.  He texted me Friday morning and said “I’m coming home at lunch.  Would you like to get the kids ready and we could head to Huntsville and go to the Space Center when I get home?”  I text back “Um, let me think….YES!” and began making preparations.  We’ve wanted to go to the Space Center for a long time.  Korban loves rockets and stuff and my kids always look at them every time we pass through Huntsville.  Once again, we get in free with our lovely membership to the Pink Palace, so we were good to go.

I had everything pretty much ready to go by the time Brad got home, and we headed out.  We try not to talk too much about fun events ahead of time, to prevent the kids asking “are we there yet?” type of anxious statements about a million times.  Sometimes Korban takes it one step further, as we learned on a trip to the zoo once, and cries on the way for whatever it is we are going to do.  He doesn’t understand the transportation time required for such trips.  Huntsville is about two hours from our house.  He started out almost as soon as we got in the van asking if he could get a balloon.  That’s usually his treat for being good.  I told him we weren’t going to buy stuff and that we were just going to have fun.  That did not settle it in his mind.  He started that awful screaming he does and kept it up the ENTIRE way to Huntsville.  By the time we actually got to the city of Huntsville, we were all nervous wrecks.  Brad was trying to navigate the traffic with Korban screaming and taking on, poor Selah was hunkered down in her car seat with her hands over her ears, whimpering, and I was trying (unsuccessfully) to keep myself and everybody else calm.
Korban then took things one step further and started throwing everything he could get his hands on and trying to get out of his car seat.  Not at all a good thing to have going on while you are driving down the road.  He had slid way down in his carseat and I was worried he was actually going to get out, so I turned around in my seat to tell him to scoot up and he kicked me right in the mouth.  Hard.  In a superhuman burst of strength and speed I managed to climb to the back of my van, hurriedly unbuckle Korban, move his booster to the back of the van, strap him in again, and sit down next to him and buckle myself in.  I know moving your child and their car seat while the vehicle is moving is not safe, but there was no place to pull over at the time, and let’s face it:  an out of control child in reach of your three-year-old as well as the driver is hardly optimal safety conditions to start with. 
I was able to get him a little calmer in the back of the van, and we arrived at the Space Center shortly after that.  After having such a tumultuous time getting there, you would think things wouldn’t go well once we got there, but it was actually good.  Which was a nice reward after what we had all just been through!  There isn’t a ton of hands on stuff at the Space Center, but there’s plenty of fun stuff to look at, and the kids really enjoyed it. 
We didn’t really have any problems at all with Korban while we were there.  Selah, however, was super excited and kept running away from us.  Let me just say that I was way too scared to ever get out of my parents’ sight as a child, and while I don’t want her to be overly fearful, I do want her to understand she can’t just jet off like that whenever she feels like it.  So after getting on to her several times with her still not listening I did one of those parenting things I swore I’d never do.  I lied!  My mom employed this parenting strategy from time to time and, being the totally gullible kid that I was, I totally fell for it.  Every Time.

We joke about it now and I still tease her.  Some examples of Crazy Stuff My Mom Told Me That I Totally Believed:  That there was once a little girl who wouldn’t sit still while her mother clipped her fingernails, and her mom accidentally cut her finger off and they had to glue it back on with bubblegum.  (She gets creativity points for that one, plus it made me sit stock still while she clipped my fingernails.)  She also told me that if I wasn’t good during church, wasps would come down from a hole in the ceiling and sting me.  (Again, effective, but telling whoppers in the Lord’s House?  Shame on you, Mama!)  And I also heard the more run of the mill stuff, like if you cross your eyes they will get stuck that way, and so on and so forth.  But I digress.
So there we are at the Space Center, and my daughter will NOT stop running away from us.  The only time she stuck close to me was when we had to walk past this rocket simulator machine that people could get in.  It made noises and moved, and for some reason just looking at it totally freaked her out.  So this is where my Mommy Lie comes into play.  After chasing Selah down for about the hundredth time that day with her still showing NO remorse, I asked her “Do you know what they do with little kids who run away from their parents here?”  She looked at me wide-eyed and shook her head no.  I walked around the corner with her and pointed to the feared rocket simulator and several happy-go-lucky teens climbing on board and said “They put them on that rocket!”  Selah looked appropriately horrified and said “Oh no!  They’re about to send all those kids to space!”  So now I’ve scarred her for life.  Plus, she thinks astronauts are just disobedient children.  But she stopped running away from us. 
Brad mentioned to me later that we got several stares while we were there, and I was shocked.  I honestly am pretty sensitive to things like that, but I TRY to not notice if that makes sense.  Because it bothers me so much I guess.  And also I was shocked because Korban had been good!  I think most of the staring comes when he is acting out, especially screaming and being aggressive towards us.  Truly, those behaviors take over the worry center of my brain so much that I occasionally forget he behaves in a way that seems “weird” to some people.  It doesn’t bother me.  I can handle weirdness all day long.  Some of it I like a lot!  It’s just the negative behavior that upsets me.  But I do think about other people’s reaction to us before we go out in public, and I had dressed him accordingly in a t-shirt that shows a kid weight-lifting and says “Autism is Not For Wimps!”  (Brad and I have shirts identical to it as well, but we didn’t wear ours that day.)  I think they are funny and cute, and to my mind that’s a quick way to “explain” to people without having to say a word, if they are quick enough to pick up on it. 
Anyway, the person that Brad mentioned staring at us was a lady sitting on a bench and we walked past her several times while she was sitting there.  I did kind of notice her glancing at us, but I didn’t think much of it.  Brad said he remembered because she watched us closely for a while, and then he saw her look at Korban’s shirt, and every time after that when he caught her eye she gave him a big smile.  So staring is not always a bad thing! 
We especially enjoyed the science “magic” show that they did, and playing on both the outdoor and indoor play areas.  It was good, and I hope we get to go back again someday.  Korban did pretty well with leaving.  We told him that they were about to close (they really were—no more Mommy Lies for me!) and he accepted that.  But once we got back in the van he started asking if we were going to a hotel, which he loves to stay in, and when he found out we weren’t, he started screaming again.  We stopped at a store and he got his balloon.  And then he immediately started screaming that he wanted a “blow up castle.”  I don’t even know what that is, but he was throwing a fit for one.  A bouncy house maybe?  It took quite a while to get him to calm down, but we managed to do it.  He did scream off and on for the trip home but I stayed in the back with him and it seemed to help some.  Most of the time there seems to be no obvious rhymes or reasons to his vicious  screaming attacks.  
We also stopped at Spring Park in Tuscumbia, AL on the way home, just to let the kids run around and burn some energy for a few minutes.  Again, they did really good there and leaving really wasn’t too much of a problem for anyone but me.  They wanted me to ride the tire swing with them, and I was so dizzy I could barely walk!  But I made it. 
I’m really glad the actual fun part of the trip went well, but the travelling part was miserable!  We really want to be able to get out and do things as a family, and I really think my kids learn so well by being able to see and experience things.  Pray for perseverance for us!  It seems like things are getting harder rather than easier, and that’s a tough pill to swallow.  I basically have a very volatile, aggressive, 70 lb two-year-old and that’s not easy.  But we press on!  We always have and I pray we always will.
 
Now some pics and videos if you would like to see.

Sweet Pic!
Scream Van...not so sweet.
You might want to turn down the volume lol...
also you can see him pinching himself some, he's quick with it so it's hard to catch.



This was an astronaut mannequin floating above the stage where they did the magic show.  Just to show you how Korban's mind works, he asked me if that was Uncle Keith (who passed away recently).  I told him no, and he asked if that was heaven.  :)

 
Selah the assistant...she has great skills of jumping around and all, that is.
She was afraid when she first got up there but she got over that.
 
Selah at the magic show with the cup trick.

The guy was shooting the cups off their heads with air.  First a small one and then a large one with smoke.  pretty cool!
 
Some cup shooting skills.

Amazed at the Big Rocket.

Loves!

We got this!  Let's drive this thing!

See that glass door there behind Selah? 
Well, she didn't and walked smack dab into it.
We laughed...she did not.
Then she was mad because she wanted to go in the room but couldn't

The tire swing that Selah loved and me...well, not so much.

He's not a Wimp!  That's for sure.
 
 

Sunday, June 16, 2013

Brad's Work Trip


Last Monday Brad had to leave for training with work for a couple of days.  It was only Monday-Wednesday, but he still felt bad about leaving us.  I really wasn’t too stressed about it—I knew we would be fine.  But poor Brad put a shout-out on Facebook, asking our friends to check on me and the kids while he was gone.  I told him to stop worrying, and he said “I don’t worry!”  He didn’t USED to worry, so now when he does it’s such a foreign emotion he doesn’t even know he’s doing it.  Ha! 

 

We tried our best to explain everything to the kids.  Korban asked if he could go to work with daddy, and we had to tell him no.  When he found out that Brad was going to be in Jackson, he kept asking if Daddy was going to get a “poke.”  (Because at his last dr appointment in Jackson, he and Selah both had blood drawn.)  He continued to worry about this the entire time Brad was gone!

 

Brad tried to make it easy on them before he left.  He got watermelon and cantaloupe at the grocery store and we had a little picnic (as Selah called it) Monday morning before he left.  He also gave each of the kids a small toy.  Korban asked him if he would bring a balloon when he got back, and he said he would. 

 

Korban had a pretty big meltdown mid-Monday—my mom showed up for a visit and he wanted her to leave right then and take him back to her house with her but NOT Selah.  I got some interesting bruises from that meltdown, but he finally calmed down.  Later, she did take both kids back over her house with her for a little while.  I was worried Korban would try to hurt Selah, so I told my mom to call me immediately if he did.  She just lives right around the corner.  I planned to go get him and leave Selah there to play, so it wouldn’t be like she was the one missing out on the trip to Nannie’s but fortunately they were fine. 

 

Korban REALLY didn’t want to go to sleep that night, and both kids kept asking for Daddy.  Selah was worried that he wouldn’t have a bed to sleep in.  I let them talk to Brad on them phone, so they knew he was okay and he got to tell them good night.  I don’t know what Korban’s deal is with fighting sleep here lately.  He had been doing so well.  I strongly suspect this is what I get for telling the geneticist that Korban didn’t have sleep problems so much anymore.  Never say that aloud.  Don’t even think it! 

 

But they finally went to sleep.  Selah got so tired of watching me struggle with Korban she just passed out, and Korban finally gave it up.  Korban was supposed to have play therapy Tuesday morning, but it got cancelled.  Me and my mom took the kids to the kiddie movie at Malco.  It was Ice Age 2:  Dawn of the Dinosaurs, which is one of our favorites.  After that, we met a friend for lunch at Don Julio’s.  (It was my super-generous friend who gave us the Wii, and we were so thankful to get to see him again before he went back home.  Brad’s still sad that he missed it.)  Korban loves to eat at Mexican restaurants, because he absolutely loves chips and salsa.  I always order something for him, but he never eats it in the restaurant because he won’t stop eating the chips and salsa!  I ordered macaroni and cheese and French fries for Selah, which she promptly refused because the mac and cheese was “too white.”  “I want carrots!” she wailed.  “She has a plate of macaroni and cheese and fries and she’s crying for CARROTS?!?  What have you done to your kids?” my friend said, which made me laugh. 

 

There was a glass-looking parrot hanging from a swing on the ceiling in this restaurant and we had to move Korban to the other side of the table so he wouldn’t have to keep twisting his head around to look at it.  Something about that bird really caught his eye.  I asked him later what his favorite part was, expecting him to say the chips and salsa, and he said “The birdie!”  Ha!

 

My friend entertained my very squirmy kids with some magic tricks.  They absolutely loved the card trick he had showed them when he brought us the Wii, and they had been talking about it for days.  He did another trick in which is looked like he was pulling his finger apart.  Very funny, but it TOTALLY freaked Selah out.  I mean, she was whining and saying “Mom, don’t let him take my fingers off.  I like my fingers!”  She wouldn’t even let go of it when he showed her his fingers were all alive and well and in their appropriate place.  We tried to tell her it was just a trick, but she wasn’t having it.  She asked me to take her to the bathroom, so I did.  She told me her booty was going to do a magic trick, and then she pooped.  I had to ask my friend if he knew that trick.  Selah is so silly! 

 

After we had loaded the kids in the van, I was telling my friend good-bye.  Selah asked my mom how he did the magic trick with the finger, and my mom said she didn’t know.  She asked Selah if she wanted to ask him, and she said yes.  So he went over to Selah and showed her how it worked.  She was pretty impressed, but apparently he didn’t completely absolve himself in her eyes.  When he reached for her hand to show her how to do it, she snatched her hand away and said “Never mind!”  Obviously she still didn’t trust him with her precious fingers.  Because she likes them, you know.

 

I thought Tuesday night was going to be better with getting the kids to sleep.  I let them both lay down in the bed with me.  Korban was actually really calm, and I was breathing a sigh of relief.  And then he got a nosebleed.  He gets them from time to time, and it’s not fun.  There’s a blood vessel in his nose that opens up and we’ve had to get it cauterized before to help with it.  So thankfully, it had been awhile since he had a nosebleed, but the timing for this one wasn’t great.  He got upset and started crying, which made it worse, or course.  He was wailing “I want my daddy!”  I ran to wet a washcloth, but he didn’t want me to wipe his face.  Then he got sick from the blood running down the back of his throat and threw up, in the bed.  I was finally able to get the nosebleed stopped, although Korban was literally fighting at me the whole time.  I cleaned him up, changed his clothes, cleaned the bed, put more sheets on it, and put the old sheets in the washer.  I figured sleep wasn’t going to happen any time soon, so I sat up in the living room and rocked both kids for a while.  When I finally thought they were settled down enough I put them both back to bed.  Then Selah started crying because she was afraid of monsters.  Sigh.  Poor kid was wailing “I need my daddy!  My daddy is big!  He will protect me from monsters!  I NEED MY BIG DADDY!”  At that point, I didn’t know whether to laugh or cry with her.  I needed her big daddy too!

 

Finally they went to sleep and Wednesday morning rolled around all too quickly.  Korban had school, so we got up and got ready.  I had already warned them that Brad was gone on a trip with work, and that Korban might ask about him a lot or be out of sorts, but he did fine.  I took Selah to play at the park while he was in school, and then we went to the library.  They have a summer reading program, and I had already asked about signing Selah up for it, and was told she was too young.  But when we were checking out our books, I noticed there were some children younger than Selah in the room.  Their moms were with them, but I would naturally be willing to stay with Selah too.  So I asked again, and they said I could sign her up for it, but it’s from 10-12 every Wednesday.  Korban gets out of school at 11:00 or before, so I’m not sure how we would work that, but I thanked the lady.  She said “She would really enjoy it.  There’s a guy in there with snakes today!”  Of course, Selah perked right up, since she just loves snakes.  *insert full body shudder here*  When the lady handed me the books, Selah said “Where is my snake?”  I guess she thinks they’re just giving them out at the library now!  So I held her and we poked our heads in to check out the man and his snakes.  He had something called a hawk-nose snake out showing to the kids.  He was telling them how those kinds of snakes never bite humans.  He even stuck his finger in its mouth to demonstrate this fact.  Eek!  He explained that the only thing this snake ever bites is a toad (not a frog, a TOAD!) because that is their favorite meal.  So he went to put this snake back in its cage and it pooped on him.  Which made Selah’s whole day.  She told everybody we came into contact with that day that we saw a man with a snake and the snake “pooped on him because it had to GO!!!”  I think it may have pooped on him to get the man back for poking his finger in its mouth, but that’s just me.

 

So we got Korban from school, and he had done really well.  A sweet friend from college had invited me to lunch, so I dropped the kids off at my mom’s and headed to Chik-Fil-A to meet my friend.  It was so good to see her!  I hadn’t seen her in ages and it was great to just sit and talk and laugh. 

 

Then I got my kids from Mom, and we played outside for a long time.  Then we got ready to go again.  Jason and Dez had invited us over their house to eat supper.  (Seriously, you guys all did an awesome job responding to Brad’s Facebook plea to watch over us.  Next time he has to go somewhere he’s going to say “Ya’ll ignore her so maybe she’ll clean house or something.  ;)  We had a wonderful supper and Brad got back from Jackson during this time and drove right on over to surprise the kids.  They were so glad to see him!  Selah even took a break from playing with her future husbands long enough to greet him.  When we left there, Brad took Korban to Dollar General to pick out a balloon.  He can’t read yet, but he insisted on getting a balloon that said “World’s Greatest Dad,” which I thought was most appropriate.  What am I saying? He might be able to read and just hasn’t told us yet.  That’d be a very Korban thing to do.  At any rate, I think he has a sixth sense about some things.  When we found out I was pregnant with Selah, he insisted on getting balloons that said “It’s a Girl!”  Which was totally bizarre but I think he knew he was getting a sister before we did.  Then the night before I went into labor he picked out a balloon that said “Congratulations.”  Too funny. 

 

Anyway, we sure are glad to have our #1 Daddy home with us, to protect us from monsters, and help stop nosebleeds and do all the other things he does so well.  He certainly has “job security.”  Happy Father’s Day to all the fathers out there.  I sure do miss my sweet daddy, but I was so blessed to have had such a wonderful father.  I’m so thankful my sweet babies also have a sweet, godly daddy who is actively involved in their lives.  They are thankful too!  Brad, I imagine you didn’t know what a job this whole fatherhood thing would turn out to be, but you’re doing it well.  There’s not anybody else I’d want to be on this adventure with! 

Monday, June 10, 2013

Genetics, and Dinosaurs, and Bears, Oh My!!!

I realized I never posted the outcomes of our dr appointments from a couple of weeks ago, so I'm playing catch-up.  First we had an appointment with Korban's autism specialist in Southaven.  She usually sees him every couple of months.  We just talked about how he's doing and about his recent stay at Lebonheur. 

We also talked about his skin-picking.  It's still quite severe, and he has bruises and scabs all over.  It hurts me to look at it, and I can't wrap my head around how he just does this to himself.  It's been ongoing for nearly a year now, and nothing we've tried has made a dent in this behavior.  Replacement behaviors have not worked--I have to keep constantly redirecting him to whatever it is I am putting in his hands for him to play with.  Generally, something like this is much harder to break if the child is doing it because they actually enjoy the sensation.  I had read online about how sometimes people use a numbing spray and that helps decrease the sensation, thus decreasing the skin-picking.  We talked to the dr about this and she promised to look into it.  The trick will be finding something that is safe to use repeatedly over a large area, because he picks at so much of his body.  For example, many numbing sprays are alcohol based and we don't want that to absorb into his skin.  I don't imagine he would be a very nice drunk.  Ha!

After that appointment was over with, we loaded back up in the van and headed straight for Jackson, MS.  Korban had an appointment with his geneticist the next morning, and they had graciously agreed to let us stay at the Ronald McDonald House in Jackson.  So we made it down there between 8-9:00 p.m. and the kids were excited to get to stay in a "hotel."  We were finally able to get them to wind down enough to go to sleep. 

We usually see Korban's geneticist once a year; however, we hadn't seen him since Selah was a baby because he had been acting as chief of staff of the children's hospital and not seeing any patients for a while.  It's also pretty hard to get an appointment with him, as he has a high number of patients. 

Some of you may be wondering why we see a geneticist in the first place--that probably isn't common practice for many kids with autism.  It's a case of one referral leading to another, and each dr finding a small piece of the puzzle so to speak.  The first dr we saw at the children's hospital in Jackson was the Child Developmental Specialist.  She is the one who ultimately diagnosed Korban's autism, although that took several visits.  At the first visit though, she noticed that his muscles were stiff and shaky, so she made an appointment for us to have an EEG.  The EEG showed some underlying seizure activity, which bought us an appointment with a pediatric neurologist.  When he was taking Korban's medical history, he thought the developmental problems along with the seizure activity, plus the urinary tract birth defect Korban was born with all raised a red flag for a chromosomal or genetic issue.  He ordered a blood test called a micro array, which basically looks at a person's chromosomes and checks for any abnormalities.  Korban's came back with a small deletion on chromosome 15, which then earned us a referral to the geneticist.  So you see how all of that works?

The geneticist is probably my favorite dr at the children's hospital.  You can tell he is a brilliant, brilliant man, but he is very kind and easy to talk to.  He has an excellent bed side manner.  All the genetics stuff just blows my mind.  I'd love to spend a day in his office just listening to him talk about all that stuff.  I'm sure I wouldn't understand much of it, but I still think it would be interesting!

At all of our appointments at the genetics clinic, we have met with the geneticist and also a genetic counselor.  At the first appointment they explained to us that Korban's deletion was not in the same area as a known disorder, and that they would like to test us to see if it was something handed down from his parents.  We agreed to this right away, and they explained that they would check one of us first and if the deletion wasn't found they would move on to the next parent.  (It's an expensive test!)  They usually start with the mother, so I had my blood test done that day.  It takes about 4-6 weeks to do the micro array and receive the results, so we were in for a bit of a wait again.  We finally got the call that nothing had shown up in my array, and that it was time to move on to Brad. 

About a month after he had his done, the genetic counselor called him to tell him that he had the same deletion that Korban has.  So it was passed down from Brad to Korban, and since Brad is unaffected by it they ruled it a benign family trait.  It was explained to us that lots of people have little things like this going on but most never know it because it doesn't cause specific problems.  My question was, did the deletion make him more vulnerable to things in his environment that maybe tipped the scales toward autism?  The answer:  Maybe, but we don't have enough technology to know at this point.  Most researchers agree that autism is generally caused by a combination of genetics and environment but we still don't totally understand how this works. 

We expressed to the dr and the counselor that we wanted to have more children, and asked them about the chances that any future children of ours would have autism or any other disabilities.  The dr said that since the deletion was "benign" he wouldn't worry too much about that.  He estimated us to have about a 5% risk of any more of our children having autism.  Which meant that he thought there was a 95% chance that any more children would be healthy!  We already knew we wanted more children, so whatever he said wouldn't have deterred us, but I couldn't complain about those odds too much. 

Fast forward to Selah of course, and she is healthy.  I have been asking since she was born if they were going to do a micro array on her, but they decided to wait to see if she showed any delays or other symptoms.  At our last appointment with the geneticist, he held Selah and looked her over and said that if anything he thought she seemed advanced.  I remember him saying "Well, she's a girl, so that's one thing she's got going for her!"  (Did you know that girl babies are generally healthier than boy babies?  I did not.  Boys are much more likely to be affected by autism, as well as other disorders.)  So he wanted to hold off on doing the array.

This was our first visit with him in about two years, and I brought him up again.  He made the decision to go ahead and do the array on Selah.  He explained that it wouldn't really tell us much about her, since we already know she is healthy, but that it might provide some information about Korban.  For example, if Selah also received the deletion passed down from Brad, and she is unaffected, they would lean more toward the deletion being completely benign and unrelated to what is going on with Korban.  But if she doesn't have the deletion, they would lean more toward it perhaps being a causative factor. 

We explained to the geneticist that the neurologist at LeBonheur made the decision to repeat the micro array on Korban while he was a patient there.  His reason was that technology had improved so much in the five years since Korban's first array, a new one might pick up on something that the first one missed.  The geneticist agreed that this was a good idea, and asked that we send him a copy of the results when we got them. 

Right away, the geneticist and the genetic counselor noticed all the marks from Korban's skin-picking.  We talked to them about that and about his anxiety, which we feel is the root of the skin-picking.  The geneticist explained to us that there are some genetic disorders which cause severe skin-picking and that Korban's raised that question in his mind.  If it was something like that, generally it would've been diagnosed with the first array, but he said that they would isolate the particular gene and take a closer look at it. 

That meant that both of our kids ended up needing bloodwork.  Necessary, but not fun!  Brad took Korban in the lab first, while I sat in the hallway with Selah to wait her turn.  So I had one kid screaming in the lab and one kid screaming outside the lab.  A nurse from down the hall came by and saw Selah out in the hall wailing nervously.  Korban could be heard (loudly!) from inside the lab, so the nurse shut the door in an effort to make it easier on Selah.  "That's her brother," I said morosely while still trying to comfort Selah.  "Oh, Mama, I'm so sorry!" the nurse exclaimed and we both laughed. 

Korban put up a little fight but actually did really well.  Poor Selah did well too, although she kept wailing "But this is a BOY dr!  He isn't for ME!"  It was funny, because her dr is a woman, so I guess she assumed that since this dr was male, he should only treat boys. 

Counting the waiting time, and the blood draw, that appointment seriously lasted around four hours.  I think that set a new record for us at this particular clinic.  We had planned to take the kids to the children's museum since we thought our museum membership would get us in free.  But at this point it was around 2:00 p.m. and I hadn't even had breakfast yet.  Plus, we still had to pack up our stuff and clean the room at the Ronald McDonald house.  So we took turns working on that while one of us stayed with the kids in the very well-stocked playroom of the house.  After that was accomplished, we fixed a quick lunch in the kitchen that was right off of the playroom and got everybody fed. 

Finally, we piled in our van and headed out to have a quick adventure before we drove home.  We were very excited about going to the children's museum as it's new and we've never been there before.  It's right next door to the Natural Science Museum in Jackson, and we knew from past times that our kids loved it. 

We got to the Children's Museum around 4:00, which only left us an hour to play before they closed but we planned on making the most of it.  Only when we got in there, we found out that our membership only gave us free admission to the Natural Science Museum and not the Children's Museum.  We were disappointed, but at least we had the other as a back-up.  The kids did really well with leaving and going to Plan B, especially considering the Children's Museum had a huge Bob the Builder exhibit set up, and they love Bob.  I think I was more disappointed than they were.  We would've just paid the admission and gone on to the Children's Museum but considering there was only an hour left, we didn't think it was worth it.  I'm sure we will be back that way sometime soon and will have more time to explore.

So we left and went right next door to the Natural Science Museum and the kids really enjoyed that.  It wasn't crowded and we were pretty free to just look at everything at our leisure and let the kids be kids.  It was a nice break after a very hectic day, especially considering we were about to get back in our van and drive for over four hours. 

I know this has been so lengthy, and full of a lot of medical jargon, but people ask us about our different doctors and stuff all the time, so it helps a lot to have it down in black and white and hopefully this has made a little bit of sense.  Please understand that I don't claim to be any sort of expert about genetics or any of this medical stuff.  I only know what I know because of what all we've gone through as a family, and I only know how it relates to us, not the rest of the world.  We don't particularly enjoy being in and out of doctors' offices so much, but we feel that they are the ones trained to deal with all of this and we want to know everything we can to help us.  Like I said before, it's like everybody has a little piece of the puzzle, and the more we dig, the more we find.  We're just trying to do everything we can to help our kids.  I feel that knowledge is power and that ignorance is NOT bliss.  We know that these appointments aren't always fun for the kids, although we make a point of seeing pediatric specialists that have child-friendly offices and are very good at dealing with kids.  Honestly, my kids don't mind going to the doctor (especially if they have cool toys!) as long as there is "poke" involved.  And we always try to do something fun for them afterwards as a treat, and so that they will have a positive memory associated with the trip and not just being in and out of doctor offices. 

We received the results of the latest micro array (the one done at Lebonheur) last week.  It showed the same deletion on chromosome 15 that we already knew about, as well as a duplication on chromosome 9.  Again, this doesn't mean anything specific.  The dr said there have tested healthy people who had the same duplication, so it's not considered anything but a normal variant.  If they tested everybody in the world, there's no telling what all they would find. 

We are still awaiting the test results on Selah's micro array as well as the specific gene test that they did on Korban.  I will post more about that after we get the results.  Please say a prayer regarding those, and also for us as Brad is travelling with work the first part of this week.  Change is not fun for any of us, and Korban has already been asking if he can go to work with his daddy. 

So here's a couple of pictures from the trip to Jackson:

All the walls in the children's clinic are painted, and it was so nice to see how much Korban's language has improved since we were there last.  It actually took us forever to get down the hall, because he had to stop and tell me what every single picture was.  He knew them all!  I think these kites were his favorite.  :)
 
Here's the kiddos at the Ronald McDonald House.  So thankful for places like this!
 
 
This is at the museum.  This dinosaur "ate" the leaves the kids fed him, and then burped, which they thought was hilarious.
 
 
My fearless daughter looking at some "really cool" snakes.  She told me later she wanted one for Christmas.  Yikes!!!
 
I love her reflection in this one.  If you look closely, you can see the big fish she was looking at.  It's the dark blob in there. 
 
 
 
He was saying "Shew!  These turtles smell like poopie!" (Truly, they did!)
 
They found a giant frog...
 
And a bear...
 
...and an ant.  Happy boy!
 
Unhappy boy!  Time to go!!!
 
 
 
 

Sunday, June 9, 2013

Please Save Me From the Wild Monkeys

*So, I've been going through some stuff on the blog, and I found this draft (as well as a few others that I will get to at some point) that I had written back in December  2011 and never posted.  I hated for you all to miss this glimpse into our crazy, lovely life, so here it is, a year and a half late!  I wanted to explain all of that so that everyone would understand that my kids were younger when all this happened, and that when you read the part in this one about Christmas coming up, you will understand that I wrote this 18 months ago and I'm not (completely) off my rocker.*

Today was a doozy.  It started off with Korban wheezing and barking at 4:30 a.m.  I got up and gave him a breathing treatment, which thankfully helped and we went back to sleep.  (Sort of.)  He was supposed to have OT and Speech at 8:00 this morning, but I canceled those appointments and made a dr's appointment instead.  Brad needed my van for work today, so he had taken it and left me his car.  Unfortunately, he also took his car keys with him.  Since I don't really know how to hot wire vehicles, that sort of left me in a bind.  He felt really bad about it, but I wasn't planning on going anywhere except to the dr, and by then I could tell that it wasn't an emergency, so I just called and rescheduled the appointment until tomorrow.  Matter of fact, if behavior was any indicator of future asthma issues, I wouldn't worry with going at all.  He certainly had enough breath to scream, screech, holler, etc etc.  But I'm afraid if I let it go, he will be worse during Christmas, right when all the dr's are closed and we are wanting to have fun.  So I think I will just get him checked out and get a prescription of steroids to hang onto in case the need should arise.  Which, hopefully, it won't.  Hope for the best, prepare for the worst.  I learned that one from past experiences.

So thankfully Korban didn't seem too sick, but oh my word, I do not know what got ahold of my children today!  It's always a bit of an adjustment for Korban when he is on break from school.  He asks about school, but he doesn't freak out and pitch a fit about not going. He is just out of his routine.  And just in case you don't know, routine is a VERY big deal for kiddos with autism.

 Additionally, Selah will NOT nap when her brother is home.  Like I mentioned before, he's very loud.  He also cannot stand to not be directly where he can see me, which really limits me being able to take her into a quiet room and get her to sleep.  No matter where you go, it ceases to be a "quiet room" if there is a little person beating on the door and screaming at the top of his lungs.  You can't reason with him.  He doesn't understand that if he will just let us be for just a little while, he will have me to himself for two whole hours.

Selah is not the world's best napper anyway.  I thought that was pretty normal for most kids, but I am starting to doubt that fact.  Recently I had the privilege of baby-sitting one of Selah's sweet little buddies a couple of times.  His mommy explained that to get him down for his nap, all you do is put him in his crib, turn on a crib toy, walk away, and shut the door.  I've heard of this, but never actually seen it put into practice.  So the first time I kept him, I tucked him in, told him we loved him, and slipped out the door with Selah.  I braced myself for screams, but none were forthcoming.  His family has a video monitor (best baby invention EVER!) and I immediately dashed over to the screen to see what he was doing.  I gawked at the image on the monitor as he picked up his blanket, laid down, and went right to sleep.  "Dat's pretty cool," Selah said.  I think she may have been talking about the screen that allowed us to spy on her little friend so effectively, but I was more impressed by his napping abilities.

Until that moment, I thought children who could put themselves to sleep were mythical creatures, like, you know, unicorns and such.  So it sort of had me rethinking a lot of things.  I know those parenting books say not to nurse your babies to sleep, that you should just nurse them until they were sleepy and then lay then in their crib and let them fall asleep alone.  But I never actually did that.  Do you know how hard it is to keep a nursing baby awake?  At least in the early days...  But I fell into that habit and it was hard to break.  Korban was a HORRIBLE sleeper.  (Thank you, Autism.)  But he is much improved now.  (Thank You, Jesus!)  I didn't wean Selah until a couple of months before her 2nd birthday.  She sleeps quite well at night, but fights the nap.  I read to her, sing, and rock, but it takes a while.

 I would actually be willing to try letting her cry it out in her crib--since apparently that method works really well for some kids and they don't even cry!--but we took her crib down to a toddler bed months ago because she's such a proficient little climber.  So I'm not too sure how to approach that.  At any rate, I think her friend may have rubbed off on her a little, because we were actually approaching something resembling a decent nap schedule.  And then Christmas break happened.  So after an hour and a half of fighting the nap today, I gave up.  I was hoping that she wouldn't be too cranky this afternoon and would go to bed early tonight.

After deciding that nap time wasn't going to be a reality, I moved on to the next item on the list:  snack time.  I opened the fridge and let the kids pick whatever they wanted from the snack drawer.  Korban immediately said he wanted an applesauce, so Selah handed him one and went back to debating the merits of yogurt vs. a fruit cup.  So I left her to decide that one and went ahead to get Korban settled at the table.  Big mistake!  As I turned back toward the fridge, I hear a sound like water running.  Ominous.  I looked around the bar to see Selah with a measuring cup, Brad's pitcher of Kool-Aid and my pitcher of tea.  You know that commercial where the kid tries to pour a glass of orange juice, and it misses the cup and goes into the floor?  Yeah, you know where this is headed.  So that took a little minute to clean up. 

Then they had a very energetic play time, that involved Selah dragging out some of her dance gear to dress up in.  At some point in all this, right as it was starting to get dark, I decided I needed to go get something out of the van.  I didn't shut the door behind me because I didn't want the kids to cry.  That was a mistake.  They both bolted out the door and took off running across the yard like they had never seen the outside of our house before.  So I'm frantically running after them, yelling at them to stop, and all I can think is that they are going to get away, and I'm going to have to call the police and report them as missing.  And when they ask me for their descriptions, I will have to admit that my beloved daughter got loose whilst wearing a t-shirt, sweatpants, and TAP SHOES!!!  Maybe the thought of being the mom who let her kid get loose in tap shoes spurred me on, because I was able to apprehend my little fugitives at the edge of the yard and escort them back to the house. 

They aren't really showing any signs of fatigue yet, but I certainly am.  Our house is an absolute zoo more often than not, but I sure do love these little wild monkeys!

*Just wanted to say that I had honestly forgotten this day, and I'm glad to get the chance to go back and read about it.  It's interesting to see how much things have changed and how much they stay the same.  My children still love to bolt away and scare me to death, but Selah can't fit in her tap shoes anymore.  Although now that I think some more about it, it seems like tap shoes would make a kid easier to track so maybe we need to invest in another pair!  On the bright side, reading about Korban waking up with an asthma attack made me realize just how much better that has gotten.  It was so scary when he was really little.  And looking back, this post was written in December 2011, and we had just started his IViG infusions the month before in November 2011.  His asthma and health in general has been so much better since starting them. I hate for him to have to go through that each month, but they have truly helped him SO much.*

Dance Your Heart Out!

Selah had her dance recital yesterday.  This was actually her second recital, even though she's only three.  They let her start the two-year-old class at the Sportsplex several months before her second birthday and she danced with that group until last summer.  They took a break for the summer and then her teacher didn't start the class back up because she was pregnant. 

Brad found out about another dance group in Corinth from a co-worker of his who had her daughter, who is also three, enrolled.  The group is called Turning Pointe, and we signed Selah up several months ago.  She enjoys it so much.  She just loves to dance, and we love to watch her. 

She had been really looking forward to her recital, which was at Unity Broadcasting in Booneville.  We had two rehearsals on that stage to get the dancers acclimated to it, but as for right now, Selah does not have an issue with stage fright.  She does, however, have an issue with not wanting to get off the stage once she gets on it.  ;)

Her dance teacher is really great and she teaches a variety of dance styles to all different age groups, girls and boys.  They all had a chance to show off yesterday and it was neat.  Selah's group danced to two different numbers:  they did a jazz dance to the song "Chihuahua" and a ballet number to a Disney song that I cannot remember the name of right now.  They were both awesome but "Chewalla" as she calls it was by far Selah's favorite. 

We were very nervous about how Korban would do at this recital.  He did really well at her recital in Corinth last year, but I had taken him to her first dress rehearsal for this one and things did not go well at all.  He screamed and screamed and screamed and I finally took him to the van and fortunately my mother-in-law had gone with us and she sat with him while I got to catch the rest of Selah's rehearsal.

Honestly, we struggled pretty badly because we just didn't know what to do.  We wanted Korban to be part of this family event, but we didn't want his behavior to cause any of us to miss the recital or upset Selah or any of the other little dancers or their families.  We talked about trying to find a baby-sitter, which would have been kind of difficult since all the grandparents were coming to see her perform and we didn't want any of them to miss it.  We have friends that had kindly offered to keep him, but it's just hard to know how he's going to react to a new situation like that, but most of the time it isn't favorable and I didn't want him or them to have to endure that. 

So we made the decision to take Korban with us and just did our best to prepare him (and us!) for the event.  I talked to his ABA lady about it and she gave some good suggestions.  She also prayed for us, which we sure appreciated.  I packed a bag of sensory stuff--his brush, some squeeze toys, even a couple of new little things that I had found.  We talked to him about how much fun it would be and how it was important to sit quietly, and if he did that we would all go have fun afterwards and he would get a treat.  He seemed genuinely excited about it.  He also loves to watch her dance, and he too loves "Chewalla."

When we got there, I took Selah backstage to get her ready and Brad, Korban, and the grandparents all sat in the audience.  I had originally intended to go back out and sit with them, but things were chaotic backstage, and the mother of the other three-year-old and I decided to stay back there and help out.  I took Selah into the dressing room and got her dressed.  I took the opportunity to pray over her, and that made me happy.  Her teacher also said a prayer for all the dancers before they got started and I thought that was sweet.  When they went out to dance "Chihuahua," we literally dashed down the hallway and into the back of the auditorium to see our girls dance.  I could see the rest of my family and Korban was sitting quietly. 

They did so good on their dance!  Selah dances so sassy.  It cracks me up.  She is very expressive and it makes me smile.  Much to our delight, she showed her muscles and then bowed at the end.  To show that dancers are both strong and gracious I guess.  Ha!

Then we went backstage again to help them change from their boa into their tutus for the ballet number.  Selah came running to me down the hall and jumped into my arms.  She was proud of herself!  Oh, and I found out that Korban is not the only literal person in my family.  I told her before the ballet "You dance your heart out!" and she very dramatically clasped both hands to her chest and said "Mommy, no!  I don't want my heart to come out!"

When we slipped back in the auditorium to watch the ballet, my mom and Korban had moved to the back row and she was brushing him. I  wasn't going to say anything, because I didn't want to risk upsetting him but he turned around and spotted me.  He was fine, though.  I asked my mom how he was and she said he had told them he wasn't feeling good and they were afraid he was going to do one of his nervous pukes, so she walked him around outside and he did fine and said he wanted to go back in. 

So everyone got to see Selah dance and that made me so happy.  They also sold DVDs of the performance for ten bucks, and we got one of those so we could watch it again and again.  (Selah loves to watch herself!)

At the end of the recital, everyone went out to take a bow together.  I stayed backstage to watch this time, but then I realized that the dancers were supposed to go down the steps to get their little medals.  I started trying to make my way around to the auditorium, but Selah was not getting off of that stage.  She started dancing again, even though there was no music.  It was quite funny.  Then all of a sudden I didn't see her anymore.  The dance teacher's daughter said that her daddy had gotten her.  I looked and saw Brad with Selah in the back of the auditorium.  He saw me, and I waved and then he did the unthinkable--he sat Selah down.  Are you laughing at us yet?  Of course, she took off like a wild bull in an arena.  Everyone else had their little girls posed, making pictures, and Selah photo-bombed like four families.  They were all laughing and asking if they could post it to Facebook as I ran by them trying to catch her.  Finally, I caught up with her as she danced across the stage again.  I turned to look at Brad, who was still standing at the back of the auditorium laughing, and threw up my hands at him as if to say "What were you thinking?"  Several people laughed at me, and some of them may have taken a picture of that, so if you see a random picture of me gesticulating wildly and looking like a hot mess, you'll know what happened. 

After we finally got Selah a little bit corralled, we all congratulated her and loved on her and Brad was even able to get her to stand still long enough for him to make a couple of pictures of her.  Korban got a little overwhelmed in the lobby while all of this was going on and screamed and started to hit me, so my mom and I took him outside.  I realized I didn't have the van keys with me, so we put him in my mom's car.  (She keeps a booster seat in there.)  He begged to go on home with his nana, and she said that was fine, so I gave him one of his little treats and they left. 

Selah got some flowers, and some little princess baby dolls that she had been wanting and I found on a good sale and stuck them back for later use.  All in all, it was really good day, and we are so grateful.  The only person that Selah didn't get to talk to after the recital was her brother, and she missed him.  But when I got Korban back from my moms, he ran through the house calling for Selah and when he found her, he went right to her, hugged her and said "I love you Selah.  You have fun at dance!"  Makes my heart happy. 

Now for some pictures!


The opening to "Chewalla."  Look at those boas!  Aren't they cute?
(Selah's the little one in case you didn't know.)
 
My favorite recital picture.  This is pure Selah!
 
Notice everyone else is in their ending pose and Selah is preparing to flex her muscles.  That's my girl!!!
 
This is the ballet number.
 
Sweet and graceful.  She didn't do a handstand this time.  ;)
 

Pretty girl!
 

Showing her true colors...
 
Dancing on the stairs