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!

 



Memorial Day Memories

On Monday morning we got a call from some of our very favorite people asking us to come have some fun, so we jumped on that opportunity.  We headed to Memphis to see the Redbirds play.  It was a beautiful day and we got seats in the outfield, spread out some quilts, and let the kiddos frolic. 

The Redbirds have a nice little playground too, so of course we spent some time visiting it.  Selah’s favorite part was digging in the dirt.  Korban was super excited to see some baseball and made us say “Go Redbirds,” about a million times.  The Redbirds lost, but I barely noticed.

Afterwards we ran by the Pink Palace to put those memberships to good use.  We only had an hour left before closing time but we made the most of it.  The kids ran from exhibit to exhibit pointing things out to each other and the adults enjoyed watching them.  Of course we visited the dinosaur.  His name is Stan, by the way. 

I wanted to explain why the friends whom we shared the day with are some of my most favorite people—they are the kind of people you can really be comfortable around.  It’s just so refreshing to be able to be with friends that you don’t have to worry around.  They are so understanding of our family situation and wonderfully sweet to us.  It cracks me up because we have been quite a few different places with these friends and while Korban will pull away from us and not hold our hands, he will happily hold hands with them, all the while smirking over his shoulder at me and Brad as if to say “See?  They’re just so much cooler than you.”

They have two boys and they are awesome.  Selah is madly in love.  She once climbed all the way over a booth in a restaurant in order to cover Jakub’s face in kisses.  She was barely two at the time.  She recently told me that she is going to grow up and marry Korban.  I say, “Oh honey, I’m glad you love Korban, but you can’t marry your brother!” She thought on that for a minute and said “That’s okay.  I will marry Jack and Jakub.”  I then had to explain to her that while she can’t marry her own brother, she also can’t marry a set of brothers.  “You have to just pick one husband,” I told her.  After mulling that one over for a while she said “I pick Jakub!” And then when she thought I wasn’t listening she quickly added “And Jack!” under her breath.  “You don’t have to decide tonight,” I told her.

But they are truly awesome kids and I would be blessed to have either one (but not both of them) for a son-in-law.  Forty years from now…But seriously, I’m a social worker you know, and I took a lot of classes that made me really think about things.  Like the whole nature vs. nurture debate.  Basically it asks are we a product of our genetics or our environment.  Obviously they both play a role, but it’s hard to know which is the biggest sometimes.  I’m always favored the environment side myself.  But now that I’m a parent, I look at my kids and other people’s kids and I think about this some more.  Really cool people like our friends naturally seem to have really cool kids.  So I’m wondering if they get an extra helping of endearing qualities such as moral strength, compassion, acceptance, etc. in their very DNA or if they just learn it by seeing their parents model it over and over and over?  I mean, there are a lot of people that I like a lot, and have great kiddos, but I’m specifically talking about the ones that go the extra mile to love on the people that are “different,” like our sweet Korban.  Parents that embrace people that are different from them tend to have children who embrace children who are different from them.  And that really means a lot to me.  I even noticed early on that Korban’s special education teachers had children that always reached out to us and to the other special needs students.   I’m guessing they had just grown up exposed to children with disabilities and watching their parents love on these kids, and that their hearts were drawn to it as well.  Just something to think about.  Selah also has been around many different special needs children—she lives with one!  And I pray that she always has an open, compassionate heart and isn’t afraid to reach out to people.  One of my mommy friends that has a little girl with Down Syndrome told me that she was in a store once with her sweet little one, and her daughter went up to hug another child about her age.  The child pushed her away and said “You look different.” It broke my friend’s heart and rightfully so.  I pray that we are not guilty of this.  I try to impress upon my children that like the little songs says “Red and yellow, black and white, they are precious in His sight, Jesus loves the little children of the world.” No matter what color someone’s skin is, or if they ride in a wheelchair or walk with leg braces; whether they talk or not, if they flap their hands or do different things, Jesus loves them and we should too. 

I really don’t know how I got off on all of that—I was really just trying to say Jason and Dez, we love you guys and you are great parents.  We truly appreciate you guys including us in your family and loving us despite our weirdness.  And I’m clearly not talking about just Korban.  ;)

And now that I’ve rambled, here are some fun pictures!

Here's a group shot, minus Brad, who took the picture.

 

Korban in the play area, having an important discussion with his daddy.

 

 

Of course, Selah's favorite part of the day involved DIRT!

 

Helloooooo...

 

Our four kiddos checking out the baseball action.

 

Selah with one of her future husbands...also known as Jack.

Here's Jack's favorite part.  He calls it the "polar kitty."

My kids getting ready to greet Stan the T-Rex.  Notice Selah still doesn't fully trust him.  I see a little of fight or flight in this picture.

After the Pink Palace...

Tired after a full day

 

Ups and Downs!

After days like Friday, I’m all like “Yay, success!  We should do this more often!” and after days like Sunday I’m like “WHY do we leave the house?!?”  I know there’s going to be ups and downs, and good and bad times, but it’s still frustrating.  We got ready for church Sunday and headed out.  We gave up Sunday school late last summer, August I think, because that was when school started back up as well. This is when things got so tough with Korban that he started refusing to go to his classes along with other activities that he would normally do.  So we just go to the service now.  Selah happily goes to nursery and Korban goes to “big church” as he calls it with me and Brad.  Sometimes he does fine and sometimes not so much.  This Sunday fell into the latter category…

We had seriously just gone in and the praise band sang a few lines of a song and Korban let out one of his eardrum shattering screams.  It didn’t go with the song real well, but I’m glad it happened while there was at least some music to cover it as opposed to during the sermon.  I immediately left with him and we sat in the van for the rest of the service. 

There really aren’t any words to explain Korban’s screams—it’s one of those things you just have to hear to understand.  It literally makes my ears throb.  It’s SO loud and when it’s very sudden and you are unprepared for it, that’s the absolute worst.  He usually does it when he’s angry about something, but sometimes (like on Sunday morning) he does it for reasons only known to him.  It will literally almost make you fall off your seat.  He did it in a restaurant once because he bit his tongue and I think a few people actually did fall out of their seats.  I know, because I was one of them.  Or imagine driving down the interstate, everything totally quiet, in your own little world, and all of a sudden you hear a scream that sounds like someone is being tortured.  I’ve seriously almost wrecked. 

Sunday didn’t improve much after that.  Honestly, it hadn’t gone real great before then either.  Sometimes you can tell as soon as Korban wakes up that he’s struggling and the day may be rocky at best.   He continued to scream on and off for much of the day, and I wound up taking Advil last night.  He was happy for the most part as long as we played outside, which we did for the best part of the day.  It’s easy now because it isn’t terribly hot and it wasn’t rainy or anything yesterday.  But those days that he’s determined to be outside and we can’t are miserable all the way around.  It seems like screaming like that would hurt his throat or hurt his head as sound-sensitive as he can be, but it’s like he’s immune to his own noise.  Last night I gave him some of his favorite crackers for snack and he was asking me for more before he even finished what he had.  I wasn’t telling him no, I was just saying to eat what he had, but he got so upset he screamed until he threw up the crackers he had already eaten.  I just don’t understand.

Back to church though—I just feel worse when he acts out in church because it’s usually a relatively quiet and peaceful experience and I don’t want us to be the ones distracting people from the service.  But honestly, even when Korban is behaving, I sometimes feel like I don’t get too much out of the service because I am so uptight and worried about what he might do.  Don’t get me wrong; I get a lot of prayer time in.  Unfortunately it’s mostly “DearGodpleasedontlethimscream,” over and over.  Deep, huh?

If screaming is a means of escape for him, he got exactly what he wanted Sunday when I jumped up and left with him.  But what else do you do?  I’m NOT going to sit there and let him continue to scream and disrupt the entire service. Let me explain—it’s not like he usually just screams once and it’s over with.  It usually happens again and again and again.  More often than not, it’s also a precursor for worse things to come.  First he starts to scream, and then something is broken or someone is bleeding.  Or both—sometimes we get something broken over us that causes us to bleed!  This is why it is necessary to intervene, i.e. by leaving or whatever you can do to calm him.  Also, he didn’t calm down just by leaving Sunday.  He continued to scream intermittently while we waited for Brad and Selah.  I couldn’t see that anything was wrong, but something was obviously bothering him.  He even asked to go back into the service but I had to explain to him that we couldn’t stay because he was screaming. 

 

Our ABA lady told us that her boss had told her instead of going for the first part of church and leaving when the child gets unruly, to go at the very end of service.  Like just for the last five minutes, and then you leave when everybody else does, and you reward the child for staying to the end of the service.  And the next time, you go in ten minutes before the service is over and you gradually increase the time you are staying.  That way they don’t get “rewarded” (by getting to leave) for their bad behavior.  I thought that was really brilliant.  The problem we have is that Korban doesn’t always misbehave in the way that I usually think of kids misbehaving during church.  You know, talking, squirming, etc.  He does plenty of that but suddenly letting out a bloodcurdling scream during church just takes it to a whole ‘nother level, you know?

Brad felt bad that he stayed and I didn’t get to on Sunday.  He said from now on, he would stay home with Korban and let me and Selah go to church.  I said a fast no to that one, but told him we could maybe take turns for a while.  We did this when Korban was a baby and his immune system was so bad his doctor advised us to keep him home.  (Yep, that’s right, he didn’t go anywhere for a long while when he was so, so sick.  Thankfully those days are behind us now!)  We have also done this on and off at times when the behavior has been bad.  Just staying away from places is the easiest most of the time but not necessarily the best.   We could just all stay home all the time and not have a Church family.  We are both able to and do share God with our kids on regular basis.  So we could just have Church as a family at home. 

But you know what?  We sure would enjoy getting to GO to Church as a family…we know the Bible tells us to do just that.  We don’t want to just go for appearances but we truly have a desire to worship God and we feel that we can do that best where we currently are.  We love the worship at our church.  Korban’s favorite is the drums, so it’s not strictly the noise at church that bothers him, you see.  We want that connection with Christ that we can’t get by just staying at the house. 

 

  Hebrews 10:25 states:  “not giving up meeting together, as some are in the habit of doing, but encouraging one another—“.

We have had successes with this before but it never seems to last. I know it confuses people too—there we are on a regular basis, involved in as much as we possibly can be, and then all of a sudden we just sort of drop out of life. We have been very successful with not hiding Korban away.  He has done so much and we keep on pushing him to do more.  He loves Church, he’s proud of his Church and talks about each part of it often, so I know he does want to be there but it’s just that there is something that keeps him from enjoying things sometimes.   We have been successful with taking him early so that it all builds around him, but this fails at times too.  We talk to him to prepare and encourage him for what he is facing.  He can be so excited about going and then just explode once we are there.  In the middle is the hardest.  But we don’t want to give up.  We want to persevere. 

Please understand that we aren’t looking for another church—it’s not one of those scenarios where I’m wondering if the grass is greener on the other side.  I’m looking to fertilize the grass in my own yard, so to speak.  I’m also not asking for anyone to offer to keep Korban or whatever so we can go to church (maybe for a date night or something but that’s for another blog lol).  First off I’d just worry he would beat you up.  Secondly you need to be at Church yourself, aren’t you paying attention here?    What we are really looking to do is find a way for him be a part of the Church and services too.  We’d like to serve and not just be served, but our lives are so unpredictable I just feel like we’re flying by the seat of our pants most of the time.  There’s gotta be a better way…right?

I’m looking for some honest feedback here.   How do you guys that have children with autism or other special needs handle church?  Do you have any tips or ideas that might be helpful to us?  Any suggestions?  And if you have made the decision to just stay home, please feel free to tell me that too.  No judgment here—I’m just thinking surely we haven’t been the only ones to ever face this obstacle and we can all learn from each other and offer encouragement as well.  Our church has been very supportive and has come alongside us in our journey.  Several people have told us that they want to help us more, but seriously don’t know what to do.  Here’s the thing—I totally understand that because we don’t know what to ask for!  It’s so hard.  Especially when you are dealing with the aggression like we are and just my usual reluctance with not wanting to be a burden to anybody.  So any suggestions anyone has on how to better integrate children with autism and their families into religious services would be greatly appreciated. 

Go!

The Coolest Place!

Korban’s monthly infusion was Friday.  We took Selah with us this time, and the nurses are always so good about accommodating us.  Selah was very good and it was so sweet to see her sitting with Korban and trying to comfort him while he waited to get his “poke.”  He did really well; thankfully there haven’t been any major infusion meltdowns since that huge one several months back. 

We promised the kids we would go do something fun if they behaved, and they earned their treat.  It’s kind of hard finding stuff to do on a budget sometimes, but we really lucked up this year.  Groupon ran a deal earlier this year on a membership to the Pink Palace Museum in Memphis, the home of the infamous “real” dinosaur I blogged about previously.  For $85.00 we got a deluxe family membership including unlimited passes to their planetarium and quite a few IMAX tickets.  It basically paid for itself the first time we used it, but the really awesome part is that the membership gets you in free to other museums.  One is the McWane Science Center in Birmingham, which is just a few blocks away from the infusion clinic Korban goes to.  We took him there on his birthday, after his infusion last month and we loved it.  So we knew Selah needed to see it to.  It’s so awesome to be able to get in for free and not even have to pay for parking!  I even packed a cooler so we wouldn’t have to worry about lunch, or snacks or drinks.  It worked out really well. 

So we’ve been doing this infusion thing for a year in a half now--that’s 18 times--and we feel we have it down to a science along with our team of great nurses.  We even felt comfortable enough this time for Selah to stay in the main room watching TV while Korban, Brad and I went with two of the nurses to a private room to put in the IV.  We go to a private room because it has a bed we can lay him on to better hold him and also because he is so loud we don't want to scare all the other little patients! Once we were all in place, with Korban sufficiently held, it only took one quick try to get the IV in his foot, which he prefers, but he still puts up a fight each time.  Once the IV is in they push his Benadryl, which is required for the infusion but he refuses to take by mouth, and each time he passes out asleep almost immediately.  The fighting so hard tires him out pretty good and then the Benadryl takes care of the rest.  Once we get back into the main room Korban likes for his daddy to carry him and then lay with his daddy in the chair and sleep.  Now there is always this lady there who helps with special projects and such to keep the kids happy.  I think she is a volunteer, and she's very sweet.  She goes around to all 10 stations or chairs and checks with each patient to see if they would like their faces or hand painted.  Korban does not care for this but Selah takes her up on the offer each time.  So as Korban was still in the midst of drifting off Selah went with the lady across the room to get her face painted.  Selah requested for it to be a surprise for mom and dad.  When she returned her face was painted like a beautiful little kitten.  She was so happy with herself and how it turned out that it just made her morning to show it off, so she went around to the other patients and did just that.  Also, she spoke to me in meows for a good portion of the morning. 

Korban snoozed right up until the end of his infusion, while Selah watched Dora and bounced around some (it’s hard for a 3 year old to sit in one location for so long you know, but she was super good overall.)  Once we got him unhooked and all of our stuff loaded, we piled back into the van and headed on over to McWane Science Center.  Korban was very excited to be going back, and Selah was super excited too.  I love taking them to places like this.  I just love that it’s hands-on and they can learn new things while having fun.  I prayed that it would be a good experience and we wouldn’t have any outburst of aggression or meltdowns for Korban and that Little Miss would be good too.  I don’t take these family experiences lightly. 

Also, it’s very good to see Korban actually interacting with the hands-on stuff and trying it out for himself.  A few years ago he would only look, but we could tell he was interested so we kept trying and now he dives right in, sorta.  So exciting!

Diving in has never been an issue for Selah, we just have to make sure she doesn’t dive so far in we lose track of her, as she usually hits the ground (or the giant piano) running. 

 

 

So we let the kids play and run around looking at all different kinds of things.  Korban’s favorite level last time was the one with the aquarium area.  (Of course it was!)  He kept asking me to go look at the octopus.  I honestly didn’t even remember them having an octopus, but he sure did.  He even remembered where the area was located and started pulling me toward the stairs as soon as we got close saying “Let’s go see the octopus.”  So we went, but unfortunately the octopus wasn’t in his tank.  I figured maybe they had taken him out to check him or something, so I told Korban he was taking a nap.  He asked me if they folded the octopus up to take a nap, and I said no.  I sincerely hope the poor octopus isn’t dead and folded up in a box somewhere, so that we can see him next time we go!

They also have a stingray and shark tank where you can reach in and pet them.  They’re little hammerhead sharks (I think that’s what their called at least) and not like something from Jaws, and the stingrays have their barbs removed so no worries of any danger.  Korban loves stingrays, and he will rest his hand in the water, but he won’t usually reach in far enough to actually pet one.  I found out why yesterday—he doesn’t like getting that wet.  I’ve known for a while that he is very uncomfortable if his clothes are wet or whatever, but I never made that connection with reaching into the stingray tank.  I kept reaching in and trying to get him to, and then I would rest my hands on his shoulder or take his hand and try to show him and he kept pulling away from me.  He said “Mommy’s like a stingray,” and I still didn’t understand.  I finally figured it out when he pulled away from me yet again and said “Mommy’s wet like a stingray!  You bothering me!” Ha!  Gotta love improving verbal skills.  Truly makes life so much easier!  He was upset because my hands were wet and I was getting him wet.  So I tried to be more mindful of that. 

 

Selah loves the stingrays and would get in and swim with them I think.  When she was younger and we were at the Tennessee Aquarium petting their stingrays she told me she wanted to get a little stingray out to hold and maybe take home with us.  I had to explain to her that we only visit the stingrays, not take them home as pets. 

I love touching the stingrays, but I had never gotten to pet one of the little sharks before.  The staff always cautions visitors to be careful and use a two-finger touch.  But yesterday a shark finally swam close enough for me to touch, and I was so excited that while I remembered to just use two fingers, I pretty much just leaned in and poked the poor shark.  It actually jumped and swam away from me really quickly.  I scared a shark!  Oops.

Selah’s favorite exhibit involved the large soft blocks that you would build things with.  (And  climb on and jump off of, of course.)  She stayed in that area for a long time. 

 

She also liked digging for dinosaur bones and the water feature and the sand table. 

They had a big playground type area.  It was sort of like a huge tree house with lots of little tube slides and climbers.  Selah loves anything like that, but Korban is usually kind of fearful of getting in them (enclosed spaces).  He’s been getting better about this and more willing to try things like that as long as I go with him.  So off the three of us went yesterday while Brad stayed firmly on the ground and snapped pictures.  Of course he did.  Once Korban found something he liked, he just stayed in it while Selah climbed all over the place.  I knew Brad was watching from the ground, but it was a very large area and I didn’t want to lose track of her.  So I kept calling for her and trying to look around for her while I stayed with Korban to make sure he was ok.  There was another little boy playing up there—maybe around 8-9, and he was the sweetest kid.  He totally helped me keep track of Selah.  “She’s over here, I see her!  Climbing on the rope wall,” or “She’s on this slide, if you lean out you can see her.” I really appreciated that kid.  We’ve had several instances like that happen in different places and I just feel like God always sends somebody, and it's very cool.  I told my aunt about this, and she said “God’s everywhere.”  I said “He sure is,” and she said “You wouldn’t have thought about God being in a museum for you before you had kids, but now you know.”  Which I thought was a good point.

 

When it was time to get down and start making preparations to leave, the problem was I couldn’t get Korban out.  He did not want to leave!  I was so glad he enjoyed himself but it took a while to talk both kids down out of that tree.  Literally!  I told Brad that he better be thankful he has a short wife who can still fit in kiddy play structures or he would’ve been paying some 12 year old to climb up there and haul the kids down. 

The only issue came when we were trying to leave and Korban didn’t want to go.  Both kids were tired and he was asking for a drink and a snack, but didn’t want to leave.  We tried to prepare him as much as we could, and I got him to take some deep breaths and Brad offered him a sticker if he left happily.  He still got upset, cried, screamed and scratched me a few times, but it didn’t kill our day.  Honestly, I’ve had worse.  We got out of there and he settled down really quickly.  Thankfully, most of his tantrums don’t last terribly long but they are quite intense. 

We loaded the kids in the van and got them settled with drinks and snacks—water, crackers, and pineapple for Korban; chocolate milk, a granola bar and pineapple for Selah.  They discovered a newfound love for pineapple rings.  They’ve always liked pineapple, but they like to wear the rings on their fingers and eat them.  Fruit jewelry!

 

As we were pulling out of Birmingham, Selah sighed sleepily and said “That was the coolest place…” as she drifted off to sleep.  That’s a pretty high compliment from a three-year-old!  As always, I’m thankful for another chance to make happy memories.