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!!!

 

 

 

 

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

 

Mario saved the Princess, and Mario Kart may save me...

I really hate it when we have a really great day like yesterday, and the Devil's all like "What are they doing so happy?  I better send some mess their way!"  Yesterday was really awesome.  Today wasn't terrible, it was just tough.  Korban wound up staying the night with my mom yesterday, since she had kept him while Selah went to dance rehearsal.  She brought him back around lunchtime today, and the transition did not go smoothly.  Brad and I used to be deluded in the fact that we thought Korban just didn't have that much trouble with transitions.  He DOES!  And we've got to find a better way to deal with it. 

Korban was really happy to see me and Selah when he got home.  He was all excited and in a good mood.  We greeted him and loved on him for a while.  But he was used to having his Nana all to himself and getting all the attention and he clearly wasn't ready to share with me and Selah.  Oblivious to this fact, I was showing my mom this new little game that Selah and I had been playing in which I call out a letter of the alphabet and Selah runs and stands on that letter on the alphabet mat in our playroom.  She doesn't know all of her letters yet but she's doing really well.  Anyway, we just made this game up this morning and she was all into it, so I was showing it to my mom.  Korban was in the living room playing with something, and I thought he was totally fine.  After about the third letter that I called out for Selah, he came barreling into the playroom like a little thundercloud, screaming "No more learning!"  (Also, WHAT is his deal with anything resembling learning?  He doesn't even want his sister to do it.)  He pushed me so hard I went stumbling across the room and my mom caught me. 

From there, everything just sort of went downhill.  He kept screaming and hitting me.  He had a couple of meltdowns.  This was interspersed with periods of relative calm.  Once he and Selah were playing together in the floor and I was close by watching them.  Before I even knew it, he was on Selah pulling her hair with both hands.  I had to pull him off of her, and she was screaming of course.  Not that I blame her.  I know it hurt, plus it's scary. 

I thought he was doing better, and both kids wanted to go outside and play this afternoon.  Everything was going okay but Korban got upset because his toy wasn't doing what he wanted it to, and he just flipped out.  He had a major meltdown--one of those where he just all out attacks me.  He was tearing at my clothes, pinching me, scratching me, hitting me.  I tried to hold him and he head-butted me.  Selah was scared and upset. 

This is my arm that he scratched up and yes it's worse than the picture looks.

 

It's hard to take pictures of your own wounds but I wanted proof.

Right in the midst of all this, Brad got home from work. There we were in the yard--I was literally bruised and bleeding.  Me and both kids were bawling.  Hi honey, welcome home!  Thankfully he was able to take Korban and get him calmed down while I reassured Selah that we were going to be okay.  "I don't like for Mommy to cry," she told me.  Makes me sad. 

So after all of that was said and done, and Korban was finally calm, Brad hooked the Wii up.  Since Korban was at my mom's last night, we decided to save the Wii for tonight and enjoy it for the first time as a family.  I wish I had a video of Korban's face when Brad turned on Mario Kart.  He did one of those things where he literally just vibrates with excitement.  It's so cute.  Selah had never seen anything like it before, but she knew right away that she liked it.  She was jumping up and down saying "I want to play!  Can I be the princess?" 

 



Korban still wants to sit and watch somebody play rather than play himself, but I think it's just because it's new and he doesn't have the hang of it yet.  The steering wheel is definitely a good thing--he can hold it better than the remote and he did drive several times and we could tell he enjoyed himself.  It's just so funny because Brad is good at it and when he starts driving Korban totally just zones in on the screen and watches the car.  It's hilarious watching his facial expressions for different parts of it.

Selah drove her car right off a cliff like 18 times in a row, which may indicate that she inherited my driving ability.  I took my turn to "show her how to do it" and drove the car straight off a cliff myself.  *cough*  Just trying to make her feel better.  I also forgot that the steering wheel was attached to her via the wrist strap, and when she and Brad were playing together she asked me for help and I tried to take the steering wheel from her.  Of course, when I pulled on it, she came with it and I ended up halfway dragging her in my lap.  She thought it was funny though. 





We had a really good night.  They were getting tired but didn't want to stop playing.  Selah even told me that she didn't need a bath, but I was able to convince her that the Princess wouldn't want her to go around all stinky. 

I bathed Korban first so he could go back and play alone with his dad while I got Selah washed and ready for bed.  She went back into the living room to watch them play and I went to put on my pajamas.  I was thinking about what all went on earlier in the day, and how one of the hardest parts is all the negative thoughts that run through my head during the midst of all of it.  I'm usually a pretty positive person, or at least I try to be, but it's very hard to keep that mindset when you are having your rear end handed to you by your own child.  I was worrying to myself that whatever we are able to do for Korban won't be good enough.  That things will get worse instead of better.  That Selah will hate all of us when she grows up.  So much worrying and fretting and bad thoughts.  And then when I finished getting dressed I went back into the living room and found this:

Kids are amazing. Such resilient little people!  More so than adults, I think.  They don't love on each other like this often, and it really meant a lot to me on today (and at that moment.)  Please pray for God to be extra close to my two babies, and to love on them and protect them as only He can.  Pray for his mercy and grace to cover our entire household.  I just want to say again how thankful I am for our friends who pray for us, and the ones who have gone out of their way to support us and provide encouragement.  You guys are our angels and we love you. 

One more thing...Korban actually fell asleep on the couch watching Brad play Mario Kart tonight (the steering wheel controller was still attached to his arm.)   :)

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up."  Galatians 6:9 NIV 

Showers Of Blessings

Wednesday was Korban's first day at Extended School Year.  He did really well.  His teacher came to see him and she and the special education director (whom he loves and insists on calling by her full name) met us outside and we walked in together.  His ABA lady was already in the classroom, along with the ESY teachers.  There are only three other students.  He did okay with me leaving, for the most part, he just kept asking if I was coming back. 

He stayed for about an hour and a half (it lasts for three hours) but I was so glad they called me when he started getting anxious and asking for me rather than letting him blow up. His ABA lady called me on her cell phone and let him talk to me and tell me he was ready for me to come get him.  I liked that because it gave him some control over the matter and hopefully helped him see that using your words and asking for things gets it done much better than throwing a big ol' fit does.  His teacher got him a smiley face balloon for doing so well and Selah got a star one.  They were both really happy. 

Today was pretty similar.  They were playing with shaving cream when I got there, and he separated from me pretty easily I thought.  He didn't really ask for me until about an hour and a half later, and his ABA lady let him call me again.  I think that is working well.  He's very funny--he is still adamant that he is NOT going to first grade, although he did tell me this morning that he had to go to "work."  So funny.  He didn't say it in a negative way, he seemed pretty happy about it and said he would see his friends, so I thought that was a good sign.  His ABA lady told me that he was very anxious today but was able to keep his impulses under control so well that it impressed her.  She said that when he started getting worked up, he would back up against her for her to give him deep pressure rather than lashing out at anybody.  I was very proud to hear that. 

Selah and I hung out at the library while we waited on him.  She enjoyed herself.  She played with the toys and looked at books.  She cracked me up when we were looking at sale books together.  They didn't have any children's books for sale really, but she picked out a book with a baby on the cover that she thought she needed. It was actually a Harlequin Romance, so needless to say, I politely declined to buy that one for her.  ;)

After school, I had planned to take Korban to my mom's because Selah had dress rehearsal for her dance recital this Saturday.  I took him to the rehearsal last week and he didn't do well at all.  Thankfully my mother-in-law had gone with me to help out, so I was able to see most of Selah's practice and do what I needed to do, but there was still a lot of screaming and it was tough. I  wasn't anxious to repeat that whole scenario again, so I made other arrangements.  He was excited about going to his nana's, and Selah was excited about getting to go dance. 

As I was leaving Iuka, one of my very closest friends since high school called me.  He lives in another state now, but we've stayed close throughout the years.  He and Brad had talked a few nights ago, and I knew that he was in visiting his family and we were hoping to see him soon.  He asked me what I was doing, and I explained that I was about to drop Korban off at my mom's and then take Selah to dance practice.  He asked if he could stop by my house a minute to drop something off, and I said sure. 

So we got to my house at the same time, and I let the kids out of the car seats to give him hugs.  After all the hugs and excitement were over, he handed me a bag.  Inside the bag was a Wii, Mario Kart, an extra controller, and two steering wheels to "drive" with--he explained that he thought it might make it easier with Korban's fine motor issues.  He even got a battery charger so we wouldn't go broke buying remote batteries.  Talk about thinking of everything!  I was completely flabbergasted and didn't even know what to say, so I just blubbered around for a while and acted like a dork.  Since he's known me since I was 14, this is absolutely not the first time he's seen me be a dork, so he took it all in stride. 

Seriously though, how awesome is that!  So excited.  Korban's going to be over the moon.  Brad and I are blown away. 

Selah did great at her dance practice.  I love watching that girl dance.  She's so funny.  They are doing two numbers--one ballet, and the other to the song "Chihuahua."  She loves Chihuahua so much, and gets really into it, facial expressions and all.  She's not as crazy about the ballet--she mostly freestyles.  I was telling Brad that she did a handstand during the ballet number and he said "What, was she not supposed to?"  No.  Ballet generally does not involve handstands.  Perhaps we need to look into gymnastics classes as well.  She keeps telling me her dream is to be "acrobat Selah."  Ha!

After dance, I took her to the park to let her play, since we were right by Kid's Town and we rarely get to go there.  She loved the "castles" as she called the wooden play structures.  Korban wound up asking to stay the night over at my mom's so I went to check on him and make sure all was well, and he was having a great time.  Very sweet.

When I finally got back home, there was a package on my porch.  A sweet friend in Texas has been mailing us care packages. God knows who to put in your life and when to do it, even if they are 1000 miles away.  This one contained a new cookbook (Comfort Food) for me and an Amazon gift card.  Amazing.  It blew me away, because earlier today Brad and I were talking on the phone and he asked me if I had decided on a sensory swing to order for Korban's bedroom.  I told him I had been looking at several on Amazon and had found some that were really reasonable.  We agreed that we needed to order one soon.  And then I get home and there's an Amazon gift card waiting on me.  It's like God was saying "Here you go!" 

Please don't take this like I want everybody to give us stuff all the time, and that material stuff matters more to me than anything.  I absolutely don't want anybody to think that.  It just really humbles me to know that people are thinking of us and I was just so excited today. I also want to be able to count our many blessings as often as we can, however big or small they are.  I make a point to explain to the kids that the gifts were from people who love us and that God is using them to bless us.  We want them to understand how by blessing others God in turn blesses us.  One of Brad's favorite sayings is "Love God, Love People, Nothing Else Matters".  This is what we try to live by and want our kids to stride for.  When we focus on helping others it takes our focus off of our own problems.  I get so caught up in helping Korban handle all his many issues that as I've stated before I don't take care of myself.  I am reminded by days such as this that God is ALWAYS looking out for me and that feels so very awesome.

I hope that all makes sense.  Today was a very sweet day and we have so many things to be thankful for.  Now I'm going to spend some time learning how to operate a Wii.  I've never really played before, and although I'm sure the kids can teach me, I don't want them to think I'm a complete dunce.  :)

Changes in Store

Busy, busy day today, but I feel like we actually got some things accomplished! 

Our day started out bright and early.  Korban had his first appointment for play therapy at 9:00 this morning, and since we just have the van, we all got up early, rode into Corinth with Brad, he took us by his parents before work and took his mother's truck to work to leave us the van.  Complicated, I know.  So me and the kids visited with Brad's parents for a little while and then Korban and I headed out to his appointment while Selah stayed with her Mammaw and Grandpa, until he had go to work. 

The play therapy room they have set up is very nice--lots of cool toys, a sand table, even some cool sensory stuff!  This is mainly to help Korban with his sensory issues and anxiety, and today was our very first session.  We love the therapist.  She is very sweet and Korban told her that he loved her and that she was beautiful.  Little charmer, isn't he?  Unfortunately, in the hour we were there, he also scratched the blood out of her face, pulled her hair and broke her necklace.  And this was in a very calm setting, one on one,  where the only expectation for him was to PLAY!  Does that give you any indication of how tough things were when he was in a regular classroom?

She was very kind and gracious about the whole thing though.  Told me not to worry about it and said that we would keep working at it.  We see her again next Tuesday. 

After that, Korban and I went to the Summer Film Fest at Malco.  Obviously, it wasn't any kind of reward for good behavior, it's just Tuesdays are the only day we can go to the movie and he looks forward to that every summer, so we already had it planned.  While we were talking that morning, Selah decided she would rather stay and play with Mammaw than go to the movie, so it was just the two of us for this one.  We watched Rio, which we had never seen before.  It was really good.  Korban liked all the pretty colors and the music.  He did well but got overexcited towards the end and was laughing hysterically and sliding out of his seat.  I was able to pull him over in my lap and calm him down enough for us to finish the movie but I had trouble hanging on to him.  I've never really had too much trouble with him in the theater before, so I'm hoping this isn't the start of another struggle.

I talked to Brad on the phone after the movie.  Good news--we finally found a vehicle!  We were trying to make arrangements to sign the papers on the loan this afternoon so that it could be ours.  Very exciting. 

After this, we went to get Selah.  We picked her up, thanked Mammaw for the help, and headed home.  I fixed the kids a late lunch that they hardly touched, probably because they were so anxious to get outside and play. 

It was a pretty day, so out we went.  I decided (foolishly, perhaps, given our recent experiences) that I would try to make a few phone calls while we were out.  First off, I called LeBonheur to check on the results of Korban's micro array that he had done while he was in the hospital.  I had to leave a message for the doctor's nurse to call me back, which took longer than it seems like it should've--several transferred calls, being put on hold, etc.  But the kids were playing well and no one was pooping anywhere, so after I finished that phone call I brazenly moved on to the next item on my list. 

I called Korban's ABA guy, then the special education director, and then the ABA guy again.  We are trying to iron out some details with Korban's summer schedule and just making sure everyone is on the same page.  So while I talked, Korban pulled his shirt off, looks at me mischievously, and announces "I'm taking my shirt off!"  In case I missed it, I guess.  I don't think this was totally attention-getting, although that was surely part of it.  I think this time my kids both realized that I was on the phone and they could possibly get away with doing things that they normally couldn't get away with.

Let me just add that we have one of those Little Tykes turtle sandboxes that the kids love.  Selah is always so good about putting the lid back on it all by herself after they play, and I always check to make sure it's on there tight.  Recently, though, we forgot and left the lid off and of course it rained that night.  So Mr. Turtle was one big sandy, soupy mess. 

Back to today--Captain Obvious announces that he has taken his shirt off, and since that fails to elicit a big reaction from me, he goes on and removes his shoes too.  And then his socks.  And his pants.  And his underwear, too, just for good measure!  So I'm on the phone with a behavioral consultant of all people, and my son is butt-naked in my front yard.  It's like he's mocking me!

And then what does he do?  You guessed it!  Jumped straight in that sand turtle!  And I just keep right on talking, because wet sand is gross but poop is worse.  Trust me on this.  Selah decides this looks like so much fun so she climbs right on in the sand turtle too.  She kept her clothes on though, shoes and all.  I really can't decide which was worse. 

I hung up the phone with the ABA guy, snapped a pic of my kids and seriously thought about texting it to him.  As I was considering that, I got a text from Brad saying that he could meet me after he got off work to sign the papers for the vehicle loan and asking if I could leave the kids with my mom and go ahead on up there and get started on the paperwork.  So I called my mom--while my kids were still playing in the wet sand--and asked her if she could watch them.  Pending a clean up, of course.  She agreed to this and I started herding them toward the house. 

Korban insisted on pulling his wagon behind him and taking the longest route possible.  Because if you're going to be naked in the front yard, you might as well make the most of it.  I tried to shield him with my body as much as possible and thankfully, no one drove by while we were trying to get inside.  I think I've just come to the point of accepting that someone in my house is going to be getting their naked groove on a good part of the time, and today I was just thankful it wasn't me!  (Let me add that after my experiences last week I got several large bath towels and a nice new robe from my aunt along with a note that said "for those unexpected shower interruptions." Made me laugh so hard, but I was seriously grateful for the towels and robe!)

I finally got the kids in and bathed.  Took me a while to rinse all that sand off!  Then I loaded them and their stuff up to take to my mom's.  After that, I went on to the loan place and got all that finished up right as they were closing.  Very big relief!  For the first time in seven months we are officially a two-vehicle family again.  Which means I don't have to be begging for rides anymore and we can do our own thing.  I told Brad I liked him better now--ha!

Since there were two of us in Iuka with three vehicles, we left the new-to-us one (a Kia Sportage) to be gotten later.  Brad took his mother's truck back to her in Corinth, I drove the van to my mom's to pick up her and the kids, and then we went back to Iuka so that I could get the Kia.  She drove the van to her house with the kids and I took the Kia to go pick up Brad.  Lots of running, but so, so worth it.  Did I mention I'm excited about having another vehicle? 

We are finally home and the kids are asleep.  Korban has been fighting sleep in a bad way for the past couple of nights.  I think this is what I get for telling the doctors last week that he has been sleeping really well.  He literally "fights" sleep, as in he beat me and Brad both last night and it was terrible as it lasted for almost two hours.  It's tough because he just keeps screaming that he wants to "play" but when given the opportunity to play he does nothing except for more screaming.  When asked what he wants to play with he will only say "toys" and then when asked what toy he will just get mad and then madder over and over.  Frustrating, right?

Tonight he started in again and was having a major tantrum first in the bathroom with refusing to brush his teeth.  He started in again about wanting to play and not going to bed.  Then once Brad got him to bed Korban continued putting up a pretty good fight as he thrashed around on the bed, continued scratching at Brad and even worked at trying to "squash the guts" out of Brad's arm by, as Brad tells it, putting Brad's arm in a leg lock of sorts.  Very weird.  Brad pulled up a YouTube video of Mario Kart, which made Korban very happy.  It calmed him right down and he was eventually able to fall asleep.  Yay for Mario Kart!  Specifically, he wants to see the one with Chief Chilly, whatever that is.  Brad says it's a monster of some sort and that the pool is very important.  Korban discovered his love for Mario Kart when he was at Lebonheur.  They had it on the TV in the rooms so that the kids could play.  Korban wasn't actually able to work the controller, due to his fine motor issues, but he wanted Brad to play while he watched.  Brad said "I'm playing video games for the sake of the child."  What a sacrifice.  Ha!  Since we've been home, Brad discovered that the YouTube videos work really well to calm Korban and he watches them on his iPad.  Served us well tonight.  Brad says we may need to think about getting a game system.  ;)

One more thing--Korban starts ESY (or YES if your name is Brad Essary) at 8:00 in the morning.  I'm excited but also anxious.  It's at Iuka Elementary school instead of Burnsville, so it will be a new school for him and a new teacher.  His ABA lady will be there, and his teacher is coming to see him tomorrow, to make the transition easier.  I think that's really awesome of her to do that during her free time.  We appreciate it.  Everybody has really tried to help with this transition.  It's only for a few weeks, but it's a big deal.  Korban does NOT handle change well.

Now that he's starting to get more verbal, I'm starting to realized just how much he worries about things.  Which is sad, but I'm so glad he can finally talk about it a little, although it's not always very clear what he means.  When we drove past his school last week he said "There's your old school."  He gets pronouns confused (reversed.)  He means "my old school."  I was puzzled, and said "No baby, Kossuth was your old school.  This is your school now."  The more we talked the more I realized that he thought he was changing schools again.  I don't know if the kindergarten graduation just felt really final to him or what.  But every night as we start getting ready for bed, he starts obsessing about first grade.  He has told me over and over that he is not going to first grade.  He also said that he was afraid the bell would ring.  He did not handle the bell ringing at school very well at all!  Poor guy.  We've tried and tried to reassure him that Burnsville is still his school and that he will have his same teacher, and that she will come to our house to help him work, and that Mommy will still go to school with him on the days he goes, but he is still obsessing over it.  So I'm worried that starting ESY tomorrow is just going to send him over the moon, especially since the plan is for me to drop him off and leave him.

But after talking to everyone today, I feel comforted.  The special education director reassured me that if he doesn't handle it well then we can just do his ESY at home, like we were homebound during most of the school year.  It's good to know we have options.  I want to try this and see how he does, but it's so good to have a back-up plan rather than pushing and pushing Korban and setting him back yet again.  Please say a prayer for all of us if you would!  Sweet Korban, all the staff members working with him, and his fellow students.  And also my Selah-girl.  She is feeling much better and Korban thankfully has not been as aggressive towards her but I know she senses our stress over things and I don't want her to worry or be fearful.  Thanks and God bless you all!  :)

Here's my kids in the sand turtle.  I'm beginning to wonder if nudist colonies are mainly comprised of a certain subset of grown-up autistic kids who don't have to listen to their parents about the whole clothes wearing business anymore.  Either that, or moms who got sick of doing laundry. 

The Kia

Brad took a picture of me the first time I drove it.  Happy, happy, happy!

 



Something Blue but Nothing New...

Korban had been pretty irritable for most of the day, but finally settled down and he and Selah were playing together in the playroom.  I walked into the bedroom and was talking to Brad.  We could hear the kids giggling and talking to each other.  "They sure are playing good together," Brad remarked, and I agreed with him. It makes my heart so happy. A short time later, I heard Korban say, clear as a bell, "Let's go show Mom and Dad!"  I remember thinking that was a really good sentence and I said to Brad "They're about to come show us something!"

We heard the stampede of little feet, and then they arrived in the bedroom.  The children attached to those little feet looked liked this:

 

According to Selah, they are tigers.  Because all good tigers have blue stripes.  She even colored the back of Korban's neck blue.  Since I guess he couldn't reach it, she was just being a helpful little sister.  Please note she also removed her pants to have more surface area to color.  They were quite proud of themselves. 

 

Thankfully this was a washable marker and it really did wash right off.  Pretty much.  After a good scrubbing in the tub they each have a slight blue cast to their skin which makes them look a little Smurfy.  But considering how they looked before, I'll take my little Smurfs and be grateful.

 

 

 

 

Sweet Jesus!