Follow by Email

Monday, November 23, 2015

Two Kinds of People

 Last week I got a pretty clear glimpse of the "two kinds of people," and I thought it was worth blogging about. These two incidents happened a day apart and the two different perspectives were...interesting. 

First of all, let me say that this is very much a "keeping it real" kind of post and it might be a little different from my usual tone. I try to post a lot of positive things on here and on social media as well. I like to talk about things we've done as a family, things that have worked for us, and finding the good in tough situations. I also really like to post pictures of our kids and dog because I happen to think the three of them are pretty stinkin' adorable. 

But I've read several different posts here lately about sharing only your "highlight reel." Meaning you post only really spectacular stuff on Facebook so that the world will think you have it all together and that every single detail of your life is uber fabulous. Now it's kinda hard for me to keep a straight face as I type this, but if any of you read my stuff here or on Facebook or wherever and mistook me for someone who has her crap together, then I am truly sorry for that. I'm someone who bumbles and stumbles and makes a lot of mistakes but I do try really really hard. 

For me it's a fine line between wanting to focus on the positive and also wanting people to know what our life is like dealing with autism and immune deficiency. On the one hand, we have a good marriage, two precious kids, a service dog, a host of family and friends that love us, a home and many other blessings. Korban can talk, tell us he loves us, and give hugs and kisses. 

We like to be out and about so our kids can experience things. We believe hands-on is the best way to learn. We've been to parks, parties, movies, restaurants, children's museums, science museums, plays, aquariums, zoos, even Sea World and Disney World, water parks, Churches, conferences, concerts, as well as just about any sort of sporting event we can get too. Due to Korban's autism sensory issues, we've had to work very hard for these things but it's been so worth it. I can look back and say there was honestly much more good than bad.  Most of the time there is usually some bad with all good.  There are moments to overcome.  I'm not always the best at pushing on--I'd rather give in and give up most times, but not Brad.  This is why Korban can go to ball games.  He doesn't just go but actually soaks it all up to talk about for weeks.  I could do a post just on Korban's sporting experiences.  There has to be a time of overcoming the bad such as anxiety and overstimulation.  It's a revolving door that has to be dealt with before enjoying the good.  

But speaking of the bad...we've also had no time for each other or even ourselves, little sleep, black eyes, busted noses, scars from being clawed until blood ran down our arms, bite marks, bruises from being hit that hard. Korban has told me that he wants a different mother and wants me to die. We've fought to protect our daughter from a brother who can't control his behavior sometimes. We've fought to protect him from HIMSELF. 

Korban has autism, severe anxiety, obsessions, compulsions, severe sensory issues and an immune system that doesn't work as it should. He cries, screams, and has meltdowns in which he sometimes hurts himself or lashes out at whoever else is around.  He throws and breaks things, some of them that he cares very much for, then is upset over why it happened and when he can get the next one. Basically there is very little impulse control.  Over the years, he has picked his own skin off when nervous, pulled his hair out until he had bald spots, bit himself, banged his head, and has even tried to poke his own eyes out on several occasions. If that wasn't enough, every four weeks we go to a children's hospital three hours away to hold him down while he screams and begs us to stop just to get him hooked up to an IV that will infuse him with a blood product full of immunoglobulins that will compensate for what his body is not able to produce. 

Was that hard to read?  Are you glad I just stick to the happy stuff mostly?  This is our life, ALL the parts of it.  So I'm saying it now to let everyone know the good, the bad, and the ugly. Things aren't always rainbows and butterflies. We've had a lot of hard times, but we choose joy. I've said it before, I'll say it again: hard does not have to mean bad. I've had a lot of down times and been consumed by worry and fear but I know I can't stay there. My family needs me to be more than a bitter, angry shell of myself.  

We do see lots of doctors. Korban takes medication. We use nutritional supplements. He does intensive therapy three days a week. We recently got a service dog for him. Things have been looking up and we are SO thankful. The aggression and self-injury, which had always been the hardest thing for me too deal with, is better than it's ever been. We've worked so hard and it's finally starting to seem like we might be getting somewhere instead of spinning our wheels. 

So that's why I was kind of blindsided when I heard this week that there are people who are concerned we are doing too much for our kids. I believe the statement was "too many children's museums and pizza places and does Korban actually need all those doctor's appointments anyway?" (News flash: he does. I mean, we don't HAVE to do so much therapy but given all the issues I mentioned a couple paragraphs ago, I really don't feel like sitting on my hands and just hoping it all goes away. As for the IViG, I'm pretty sure that if you don't follow the doctors plan of care for immune deficiency they call that medical neglect.) 

Needless to say, when I heard this I was upset to say the least. And I explained and justified myself. The point by the person was, we shouldn't be spending our money to do those sorts of things. I mean, for crying out loud, I don't even have a job!  I spend my days running back and forth to therapy and eating pizza after playing at the children's museum you know. ;)

I told Brad awhile back that he couldn't afford me. He laughed because he knows it's true. What I was saying is, we literally could not afford to pay for somebody to take care of our kids every day and do what I do.

Anyhow...we aren't rich by any stretch of the imagination. I'm paying student loans on a degree I'm not using. But I'm so glad I get to be home with my kids. I really wanted to be able to stay home with them and I'm incredibly thankful it worked out so I could.  Brad does have a good job and he works very hard to take care of us. 

We are on the road a lot, due to all the aforementioned appointments. So we've always tried to do at least one fun thing while we are out in hopes that our kids will remember that instead of just an endless parade of doctor's offices, IV sticks, etc. We're already there, so why not make the best of it? And we KNOW we aren't rich. We've gotten very good at planning outings, purchasing year long passes while they are on sale, scouring Groupon and Living Social for deals, saving money by packing our own food, etc. I need to do a separate blog post on how to do family outings on a tight budget because we've gotten it down to a science over the years. And we've done it because it's important to us. 

Why is it important to us? Because, unlike the person making the comments about us, I don't think that just because we have a child with disabilities we need to hide out at home and feel sorry for ourselves all the time. How is Korban going to learn how to navigate the world if we don't take him out and show him?  I'm glad we started young and I feel like our little "field trips" are just as important as any therapy he's done. 

Also, it builds family unity. When Selah first started play therapy back when things we so rough with Korban she basically told the therapist that she'd like for him to just move to his own house and she could go see him every now and then. :(  It went from that to seeing our family as a team. She later told her therapist that she helps to take care of Korban, he plays with her, and Mommy and Daddy take the family places so we do fun things. Much happier scenario in my mind. 

Moving along to the second incident I mentioned; the second kind of person. Friday afternoon the kids and I were walking Jet on the trail behind our houses it had been a long, tiring week and I was glad it was the weekend. While we were walking, my cell phone rang. I answered it and was surprised to hear the voice of an old friend of mine, someone I had not gotten to talk to in quite a while. She told me that she had just had me and Brad on her mind and that she was thinking of us and our kids. She said she knew we had been through a lot with Korban and that we do a lot and some days we get up and think "why am I even doing this?" (It's true. Some days I just want to climb under a rock.). But she went on to say that she thought we were doing a great job and that our hard work was paying off because Korban is doing so well. Y'all, it blessed me so much. I can't even explain it!  Not only did it bring joy to my heart, it made me realize how much I want to be that type of encourager to others. 

I've now realized that I got way too upset about the negative encounter. Honestly, It's pretty cool that someone thinks we are doing too much for our kids as opposed to not enough. Although I'm sure there are those out there that feel that way too. You can't please everybody and unless you are living in their situation you really don't know. I'm one of those who just wants everybody to be happy with me, but the older I get the more ridiculous I realize that is. All that being said, there really are two kinds of people in the world: Those who build others up and those who tear them down. Which are you going to be? 

Sunday, September 20, 2015

A Boy And His Dog

I wanted to give everyone a little update about how our first week with Jet has gone. First of all, it has flown by and it's been really awesome. The first night we had Jet, he slept in his crate. We wanted to try letting him sleep with Korban but also wanted to let him settle in a little too. Let me explain that Korban has always had trouble sleeping and has NEVER slept in his own bed. We do use melatonin and that helps a great deal but still, me or Brad always have to lay down with Korban and help him fall asleep. He has trouble settling himself down to fall asleep so we would do something to help him unwind, like snuggle him tightly or rub/scratch his back. Once he falls asleep, he awakens very easily. So if we try to get up it usually wakes him up and we have to start the whole process again. 

So the second night we talked to Korban and told him Jet wanted to sleep with him. He seemed impressed by this and wanted to try it. He went and got in his car bed and Jet hopped right up there with him. I sat beside them on the crash pad until they fell asleep. I got up to slip out and Korban stayed asleep but Jet woke up and followed me to the door. I didn't really know what to do, but I happened to think and pointed at Korban's bed and said "Kennel!" That's the command we give him to get him to go in his crate or get in our vehicle. Turns out it works on car beds too!  Jet hopped right back in bed like "Cool, I get to stay here?  I didn't know. Thanks, Mom!"  Korban came and got in bed with us at about 4:00 that morning but that was a long stretch of sleep in autism land. 

The next night was even better. Since the previous night had gone so well I wanted to see how it would go if I just tucked them in and let Korban try to fall asleep in his own. Like I said, he's 9 and that's never happened. I told them goodnight and that I would be close by if he needed me. Korban said "I'm scared!"  I told him that there was nothing to worry about, that Jet was there with him, mommy and daddy were in the next room, and that God is always watching over us. And then I started to walk out. Korban called out "Close the door," and I pulled it part of the way closed. He said "ALL THE WAY, MAMA!" I couldn't believe my ears but I shut the door. I guess he really wanted to make sure Jet didn't jump ship. Ha!  But here's the amazing part--we didn't hear a peep out of them until the next morning!!!  It was really funny because I had just had this discussion with Brad about how I didn't want to heap a bunch of unrealistic expectations on Jet right off the bat.  We knew he was going to be a huge asset to our family but I didn't want everyone to be expecting miracles everywhere we went. But seriously, after our kid went to sleep on his own and slept through the night I was like "SWEET JESUS, THERE HAS BEEN A MIRACLE IN THIS HOUSE!" Never underestimate the power of a good nights sleep!  It just meant so much to us that Korban felt that comfortable and safe with Jet. That's a big breaththrough with Korban's anxiety; his separation anxiety in particular. 

Be still my heart...

Korban hasn't slept through the night every single night, but he has slept much better. If he gets up, Jet gets up with him. For example, one night Korban had a nosebleed. He gets them frequently. So he came to tell us and Jet came with him. Korban wasn't upset or anything, which was good. He hates nosebleeds and crying just makes them worse. We got his nose to stop bleeding and he headed back to his room. I offered to let him sleep in our bed the rest of the night and he refused. He said "No, I sleep in here with Jet." Impressive! 

Several people have asked me how Jet reacts when Korban has a meltdown. My answer is I don't know yet because amazingly enough, Korban hasn't had a major meltdown in the week Jet has been with us. I'm sure the opportunity for Jet to help deal with a meltdown will come soon, but Korban seems calmer and happier with Jet around and it's been a really good week. 

Korban did have to go to timeout yesterday for throwing his plate in the kitchen after he finished his lunch. He was mad because he had eaten enough and I told him no more food right then. And it was buffalo chicken, one of his favorite things, so hearing no was hard and he acted out impulsively. He had to sit in his room for five minutes. Jet went to timeout with him. I was listening outside the door and after a few minutes I heard Korban talking to Jet. It was so funny and cute. He said "I threw my plate. *deep sigh* It was a bad choice." Apparently Jet is a good listener because when the timer went off Korban came out of his room and apologized to me. Pretty cool!  

Please continue to keep us in your prayers. It is a big adjustment for all of us, Jet included. Poor Selah is a little jealous, and we've been dealing with some behavior from her due to that--namely being whiny and kind of clingy, which she usually isn't. She adores Jet, I think it's just a little hard for her because in her eyes it seems like Korban had this really cool thing happen to him and she's feeling a little shortchanged.  She is happy for Korban though and she's honestly a big help. One morning I found her with a washcloth gently cleaning Jet's paws after his walk. I would've never thought to ask her to do that, she just took it upon herself to pitch in when she saw his paws were wet from the grass.  I'm very thankful for how well things are going. We all love Jet, and he seems quite happy with us too. :)

He has to go back to his trainer this Tuesday for a vet apt to get his teeth cleaned. Gotta keep him healthy! And Charles will do some "fine-tuning" with Jet's training. All of this was planned and is normal.  It doesn't mean anything is wrong, so if you see us out without Jet don't worry. He will be coming back soon to stay permanently. That being said, I miss that sweet dog already and am a little worried how Korban will react, especially at bedtime. But this is all part of the process and it will be good. Just keep the prayers coming and please know we appreciate everyone's support and encouragement more than I can say!

Sunday, September 13, 2015

Bringing Jet Home!

Homeward bound with a hound!

That's right, it's time for Jet to come home.  Not for good just yet but for a week of bonding.  One might think that the training for an autism service dog would mainly be for the child and well,  the dog.  Jet has been in training his entire life for this moment, over 2 years actually.  Then, as with most things we have ventured into in order to help Korban, we find out that we the parents, the adults, but mainly me (primary caregiver) have to go to work. *Puts game face on*

We learned early on, after struggling so much, that for real change to happen WE had to learn and adapt more than we expected Korban to do.  The way we saw it was we were the adults and were able to change and Korban was not there yet.  With our willingness to change things in our lives and learn all we could came positive changes for Korban. This opportunity with Jet as Korban's service dog is no different.  Jet's primary duty is to Korban but Korban is not yet able to be the handler so we must fill this gap for him.  To do this our own training is necessary to know what to do and what not to do for the benefit of both Jet and Korban.

Public access training and testing is very important and that was some of the focus as we met Charles at a park in Senatobia, MS to do a group training with three other families that are also getting service dogs. The weather was beautiful and we were so glad to see Jet. 

Ready to get to work! 

The training was mainly for me as I will be considered Jet's handler but Korban participated more than I even expected him too. I was really proud of that! 

Geez, I look serious in this one! Must be that game face. ��

We had a really good time, learned some things, and got to meet some cool new people. Best of all: 

We got to bring Jet home!!!! We are SO excited. He will stay with us until next Tuesday, and then he goes back to Charles for a short time for a teeth cleaning and some fine-tuning of his training. Hopefully the week after that he will come home to us permanently!  We will have an official graduation ceremony with some other recent graduates probably in October. 

We have been looking forward to this day for so long and I can't believe it's finally here!  This week we are mainly going to focus on bonding with Jet and getting to know him. We just want him to be happy and feel loved as he helps to care for our precious boy. I can't even put into words how much I already love this dog. We are so grateful to all of you that have encouraged us and supported us on this journey. Please keep us in your prayers!  I still have a ways to go in my training. I'm having trouble using an authoritative tone when I give commands. Partly because seasonal allergies are not my friend right now and every time I try to sound stern my voice cracks like a teenage boy's. ��
I'll get the hang of it though. Jet is a great dog and so well trained. We are so grateful for Retrieving Freedom and the work Charles Dwyer does. He really has a gift for training dogs and I'm so glad he and his family share it in the way they do. We've been given an awesome (four-legged) gift and we just want to be good stewards. 

Resting between both kids in the van, eyes on Korban. I think maybe he likes us. ��

Tuesday, August 18, 2015

Service Dog Match!

So we started the process of getting Korban's service dog back in April of 2014, but until recently we didn't know which dog he would wind up with. We've met several and liked them all. Mr. Charles likes for the child and the dog to pick each other, and that made a lot of sense to us. I didn't want to get in the way and try to influence the process. It's hard because I now know the difference these dogs can make and I want that so bad for Korban.  Patience is something I struggle with but have had no choice but to develop the skill set.  The process of getting a service dog is a long journey but we have been very grateful for the moments along the journey thus far and look forward to the ones ahead of us.

About a month ago, Korban and I went to visit Retrieving Freedom. Charles had told us about a black lab he has named Jet. Jet turned two on Valentine's Day and has been doing fabulous with his training. He's everything Korban needs in a dog: smart, social, and as Charles said, "bulletproof." So he had Jet out for us to meet. Korban walked right up to him and said "This gonna be my dog."  Well. That was easy, right? ;). Jet didn't seem to have any objections and Charles said we would start working them together. 

Here's some photos of them together the day they met: 

I love this picture!

And this one because Korban had his arm on Jet. :)

I am a horrible photographer and Jet totally blends into that dark rug, but look at Korban's happy face.

Here they are walking together. Korban did a pretty good job holding his leash!

We even got to play outside. Naturally, Jet loves to retrieve things and he also loves the water. Korban got a huge kick out of throwing things into the water for Jet to fetch. Charles told me that Jet's foster home had a pool and they let the dogs swim in it. So now I'm trying to convince Brad that Jet NEEDS a pool. I'm sure Jet wouldn't mind sharing with the rest of us, right? ;)

We also got to visit with Jet again at the Hernando library a few weeks ago. Korban was very excited to see him again (and so was Mom!). 

I tried to get a better picture this time. Charles found a white wall for me to use as a background in hopes that Jet wouldn't blend into it. Ha!  You really can see him better in this picture but it still doesn't do him justice. He's such a beautiful dog, with a very sweet personality. 

Hopefully he can come live with us within the next few months. It's hard to nail down a timeline because we have training and fundraising left to do. I'm wanting it to happen quickly of course--we are SO excited. But I want to make sure I do everything right and know all the things I need to know to take care of Jet and make sure he and Korban have the best relationship possible. Hopefully we can do some weekend visits soon. I feel like we are adding to our family and it's a very happy and hopeful feeling. 

The other day Korban and I had stopped by the grocery store after a doctor's appointment. It was just me and him, and I had to return the grocery cart to the store (we were at Aldi's). I couldn't leave him sitting in the van while I went to turn the buggy in, but I was afraid he would bolt off while I loaded the groceries in the back of the van. I wound up sitting Korban on the bumper of the van and blocking him with my body while I loaded groceries so he couldn't jump down and run off. We made it just fine but I was tense. I just always worry that I'll get distracted for just a second and he will get away from me. But then I took a deep breath and realized that soon we will have Jet, and Korban can stand there tethered to him while I load up the groceries or whatever. Of course, I'll still be on high alert but it will ease my worry. That's so important because Korban can always sense when I'm anxious and it makes his anxiety that much worse. And then I feel guilty. It's a vicious cycle!

God is always faithful!  There is no doubt that He always comes through.  It may not be in our timing, and if it was then it wouldn't be perfect.  We are far from perfect.  God knows how to slow us down when we need it.  Our faith and trust have to be put in the right place.  During this past year there have been difficult moments for sure.  There have been times when there seemed to be no hope.  We would continue in our efforts of praying for situations that seemed to have no answer, and sometimes no answer may BE the answer.  Then, just as with Bolt For Blue in Hernando, God shows up and shows out.  My kids sure do love all of God's creatures.  We are very grateful for the opportunity granted us to be working towards bringing the perfect match into our home to help our Korban in so many ways.  What better way for prayers to be answered than with the aid of Man's Best Friend! God didn't automatically grant us what we needed. There is nothing special about us as parents.  When doors or even windows of opportunity are opened then we have looked for ways to get in.  RFI is definitely  one of those doors that were opened for us.

We are just so thankful that we found Retrieving Freedom and for the work that they do. We can't wait to have Jet home with us and i will try to do a better job keeping everyone posted.  If you would like to donate to Korban and Jet you can do that directly to Retrieving Freedom online right here

On the page there is a meter with our funding goal for Korban and then where we are at so far.  We have not pushed the fundraising aspect much due to the unsure aspect of the process.  What if Korban was unable to be paired with a dog or something such as that?  We did not want to have money given towards Korban and a service dog, then it not happen.  Well now it is for real I tell you!  Last year Brad's work, Region IV, held a fundraiser during Autism Awareness month.  That is the first big amount.  Then the second amount is from when Hernando High chose Korban to sponsor and help with funds towards the service dog.  Then very graciously a company in Alabama chose to help with a very generous donation.  Now as we close in on the final touches of working with Jet to bring him home we need your help to finish out our fundraising goal here.  Please consider that even a small amount means a lot! 
Thanks in advance!  Love you guys. 

Wednesday, July 1, 2015

DisAbility Megaconference 2015

Last year was our first year to attend the Mississippi DisAbility Megaconference in Jackson, MS and we really enjoyed it. We were excited to get to go for our second time this summer. We headed down to Jackson on Wednesday, June 17th. The Jackson Zoo stayed open late for a special Dream Night event for the conference attendees. It was so cool!  They had all kind of food and drinks (for free!), performers such as magicians, and of course cool animals to look at. There was even a group of local cheerleaders who greeted us and cheered for everyone as we walked into the zoo. The kids loved that. 

This was literally the first thing we saw when we walked in the gate. Always better to just conqueror your fears right off the bat and go on about your business. ;). This is a red tail boa, and she actually wasn't horrible. 

Here we are petting a turtle, which has never been frightening to any of us but Selah was hanging back a little because this turtle started pooping right when we walked up. Ha! 

This is a bearded dragon, the lizard that first inspired Selah's longing for a pet lizard when we saw some at Repticon several years ago. They really are awesome. She told everyone around us about her Chinese Water Dragon. 

This bear came right up to the fence to check us out. 

This was fun! 

They even had a snowcone truck giving away snowcones. Korban wanted to ride on it! 

He wanted a bite of hers. :)

Korban flopped on the bed and announced he was tired when we got to the hotel room. He didn't go to sleep though, and he found a renewed source of energy when I offered to take him and Selah to the pool. We enjoyed playing in the pool both nights we were there. The kids love water. Brad had to finish up two of his grad school classes by Friday evening, so he was working on them every spare minute and didn't get to enjoy the pool with us. :(

The conference was great. Very inspiring. I learned a lot of history on how the Anericans with Disabilities Act was passed, how far this county has come in the treat of those with different abilities, and how far we still have to go. 

The kids stayed in respite care provided by the conference, which was a huge benefit. We wouldn't have been able to both attend the conference if there hadn't have been someone there to watch the kids, and their respite workers are well trained. They had a big room all decorated for them, with plenty of activities. They called it Camp Carnival, since there was a carnival theme this year. Both kids loved it and are asking when they can go back. I always worry that Korban's separation anxiety will cause problems in situations like this. We had a few snags, but overall he did well, thankfully. 

So happy we got to attend the conference this year and we are already hoping to get to return next year! 

Wednesday, May 20, 2015

Bolt for Blue

I have something I've been trying to blog about since March. I have been struggling because it's so awesome that it's hard to put into words, if that makes sense. It's been a crazy couple of months at the Essary household but we've had some AMAZING things happen and I wanted to share with everyone. 

Remember the post I did talking about Korban's last check-up in Jackson, MS with genetics? What I didn't mention was the phone call we got on the way down there...Charles Dwyer, head of Retrieving Freedom (the organization Korban is getting his service dog from) called Brad with some incredible news for us.

Hernando High School host annual Light It Up Blue events.  They have added to these events each year.  On Friday the entire school gathers for a pep rally and on Saturday they have an annual run for autism awareness called Bolt For Blue. Last year, 2014, for the first time they wanted to help Retrieving Freedom so they decided to sponsor a child and help raise funds for their service dog. They wanted to do that again this year and our sweet Korban was the child they picked! 

We were completely blown away. That would have been fantastic news to hear anytime, but it came at an especially good time for us. We had been struggling, me in particular, with worry and discouragement. Several things had happened that made me feel really down, and I was in a slump so to speak. This news bolstered my spirits so much!  I can't even put into words how it made me feel. Just the thought that people who hadn't even met us yet cared enough about our son to do such a big gesture for us--It really lifted my heart. 

Charles told Brad that they were having a Light It Up Blue pep rally on Friday March 27th to kick off the Bolt for Blue run on Saturday. They had invited us to come to both events and Charles even offered to let us stay in the new cabin on the Retrieving Freedom campus for a couple of nights so that we wouldn't have to drive back and forth between our house and Hernando. All that was mind-boggling in and of itself, but to add to that, he told Brad that the TV show Small Town Big Deal would be there filming for an upcoming show. 

So let me sum it up for you--we are in a rough patch, then we get a phone call saying that a group of high school students and teachers are willing to help with raising money for Korban's service dog, they want us to be an honored guest at their kick-off pep rally and run, AND this is all going to be on TV, shining a light on autism acceptance and service dogs!!! How cool is that?  To say we were excited would be a huge understatement. :)

We eagerly started preparing for our visit. We tried to prep the kids and help them understand what was going on. Which was sort of tough, because we didn't totally know what to expect ourselves. We had Special Olympics on Thursday, March 26th in Pontotoc and then Korban had PT in Tupelo late that afternoon. After we finished that, we headed over to Senatobia to spend our first night at the Retrieving Freedom cabin. You would've thought our kids would've been tired after all that, but they went NUTS when we went into the cabin. They loved it. We all did!  It's beautiful and very comfortable. 

The next morning when we pulled onto the Hernando High School Campus I was awestruck. They had gone all out with decorating and the very first person I saw had on a bright blue wig and a blue cape. I knew we were in the right place. Ha! 

We went into the gym where the pep rally was being held. Charles was already there with some dogs. We started meeting people right away--everyone was so friendly! They treated Korban like some kind of little celebrity!  It made my heart so happy. (Korban's too. He told me the girls were pretty. Ha!) Lots of students came by to tell him hello or ask for a picture with him. I was blown away with how considerate they were in their interactions with him. Everyone was careful not to push him or do anything that would make him nervous. I was very impressed by that and appreciative of it. 

They had asked us earlier if we would like to speak at the pep rally and I eagerly jumped on the chance. I'm not much of a public speaker but I figured if somebody was willing to hand me a microphone and let me talk about how autism affects our lives, why we want a service dog and what a blessing Korban is to us, then I was not going to let that chance pass me by. I was also able to give an interview to a local newspaper, a news channel from Memphis, and Brad and I were both interviewed for the TV show Small Town Big Deal. Talk about God opening doors! It all happened and happened fast. I couldn't even tell you what all I said but I hope it made sense and that it touched somebody's heart. 

One thing that really stuck out to me was how much the students already knew about autism. They had already moved past the "autism awareness" part and gone over into the much longed for area of "autism acceptance." They celebrated my child. It was like balm to my soul. One of the students who spoke at the pep rally talked about how important it was to understand about autism because they may one day work with people on the spectrum or they may have a child with autism. To hear that said in such a matter of fact manner, without fear, it honestly kind of surprised me. I hear people talking about how to avoid autism at all costs, not about how they might be down in the trenches with us one day. To realize that they weren't afraid of who my son did something to my perspective. Would I have chosen autism for my baby boy?  Honestly, no. Because it makes his life harder. It makes EVERYTHING harder. And as a parent, you don't want your child to go through hard things. It's heart-wrenching to see them struggle and not always be able to help. You feel like you're taking one step forward and two back. But no matter what we go through as a family, our love doesn't waver. Hard doesn't mean bad. And I've learned that the harder you work for something, the more you appreciate it when you get it. These teenagers are already figuring that out. I wish I had known what they know when I was their age. If these kids are our future, then I have to say I think we are in good hands. 

We spent pretty much all day at Hernando High School that Friday. We had such a good time and they treated us like family. We had promised the kids a fun treat if they behaved at school that day. The kids were telling one of the teachers that they enjoyed hanging out with that we were going to go have fun that night. She asked them what they like to do for fun and they were telling her different things. She asked if they had ever been to Skyzone (huge indoor trampoline park in Memphis) and they told her they hadn't. So they gave us free passes to Skyzone. So nice!  We went that evening and the kids had a blast. 

Saturday morning was the Bolt for Blue run. It was cold and SNOWING, can you believe it?  But there was still an excellent turnout and everyone seemed to enjoy themselves. It was the BEST weekend. Those sweet people were such an encouragement to us. 

At the end of May we went back to visit with our Hernando friends again. They had a check ready to give to Charles. They raised $1600 for Korban's dog. That is AWESOME!!! We are so grateful. 

Korban and a service dog named Presley. She's not ours (we still aren't positive which dog Korban will be paired with yet) but she is such a beauty and so sweet. She and Korban both cheesed for this picture!!! 

That awkward moment when you try to take a cute picture with a puppy dog and your little sister won't stop being sassy. Ha! 

She's not always sassy though. Here she is being sweet and kissing Presley on top of her head. 

Selah wanted to go with Mr. Charles! 

Tuesday, March 24, 2015

Genetics Check-Up

Korban had his yearly check-up with his geneticist on Tuesday. We've been seeing this doctor since Korban was 3 and he's one of our favorites. He's brilliant and very, very kind and I always like taking Korban to see him. The reason we see a geneticist is because back when Korban was first diagnosed with autism they did a test called a chromosomal microarray and found that he has a deletion on chromosome 15q. It's one of those things where they don't totally know if it has anything to do with his autism or not. There are still so many unknowns with autism but technology and research are helping people (like our cool doctor) find out new stuff all the time so we keep plugging away. 

We actually missed our yearly check-up last year because it fell during the time we were at Disney and this was actually the quickest they could get us back in. I apologized to the dr today and explained why we missed the appointment last May and he laughed and said "Don't worry, I think Disney is very therapeutic!" See, I told y'all he was cool. ;)

We actually drove down to Jackson the night before. It takes 4+ hours to drive, which is a pretty long haul for the kiddos. We are able to get in at their Ronald McDonald House, which was such a help to us. Of course the kids were excited to get to stay too! 

Here we are heading in. Selah likes to pull the suitcase and Korban is making sure Tigger is good to go. He got it in his head that it would be really funny to toss Tigger over the stairwell as we were walking up to our room. Throwing stuff is a big issue with him so I tried to shut that idea down pretty fast and let him know that would not be tolerated. His response was to stuff Tigger underneath his shirt. To remove temptation I guess?  Cracked me up. 

Our appointment was at 8:30 and it sure was nice to get some sleep before it and not have to head out in the middle of the night and drive all that way. Especially since Korban had a rather sleepless night Sunday night and we were exhausted from that. 

So anyway, the appointment went well and our doctor seemed very pleased with Korban's progress.  He did send him down to the lab for some bloodwork so we can get an updated array done on Korban. The doctor explained that the technology has improved since the last one Korban had, so they wanted to do another to see if we could get any additional information from it. 

Of course, Korban wasn't thrilled about having blood drawn, but Brad held him for it and the nurses were really good so they got it done the first try. That's always a good thing!  
Here we are waiting outside the lab. Korban was being very patient. The Nintendo DS is a godsend. ;)

And I've always thought Korban looked like me, but take a closer look at this one. This is Brad Essary made over. Especially how he's sitting!  Am I right?!?

When we were checking out of the Ronald McDonald House the clerk gave us tickets to the Mississippi Children's Museum. Such a blessing!  We have been wanting to go there since it opened and we were so excited to get to go check it out today. 

We stopped to get food on the way and Korban got ill about something and threw his hamburger in the van. It splatted against Brad while he was driving and got mayo and mustard all over the back of his shirt. Not cool. So unfortunately Korban had to sit in the van with Daddy while Selah and I went on in to the museum.  They were able to join us after Korban calmed down. (It took about an hour. Brad waited him out. We are hoping it won't take too many more times like this for him to realize that certain behaviors (i.e. projectile hamburgers) are NOT acceptable. Pray got us to be loving, firm, and consistent and for him to understand!) 

They had the neatest play home with a big kitchen area and Selah and I had a lot of fun "cooking" together while we waited on the boys. 

We were glad when Korban was finally able to join us! 

Floor Scrabble!  Why do I not have this at my house?  ;)

They had the coolest water table!  You could actually go underneath it and watch the water spray over you. 

This is a replica of the Mississippi Capitol building that you could climb in, but Selah was convinced that it was a princess castle. She wasted no time in climbing to the top, pressing her little face to the window and calling down to Korban "Help me Prince!  I'm stuck in this castle! Come get me down!" He looked at her like she was nuts and said "Get your own self down!" Nothing like a very literal big brother to bring you back to reality. ������

Korban sliding 

Selah climbing UP the slide...

And then sliding back down. 

And here's one thing they were both afraid to climb in--it's a replica of the stomach. I went in to try convince Korban to give it a try. It made noises as you climbed through. When it started making chomping noises as Selah and I climbed in, Korban flat-out refused saying "It EAT you!"  Even brave Selah was a little unsure but we pressed on and Brad snapped that picture of us right before we ventured into the small intestine. (And that's a sentence you don't hear every day!) Shortly after that, we started hearing loud fart noises and Selah deserted me, leaving me to unfold myself from a very tight position while obnoxious noises boomed all around me. True story. All I can say is, I'm glad that exhibit wasn't scented! ;

Here they are "picking cotton."

This area was very fascinating to the kids because it had a real car they could play in, along with a play gas pump. When we first walked up there was a little boy about Selah's age in the driver's seat. She climbed in beside him and they started talking. After awhile she announced that they needed gas, and hopped out and pumped some. Then she jumped back in and shouted excitedly "Let's go!  Drive me to Egypt!" His mom and I cracked up. Pretty ambitious for a first date. And it also begs the question, exactly how much gas do you need to drive to Egypt? 

Korban loved playing with the toy boats in the water area. 

Selah loved it too. 

He was fascinated with the spinning globe. 

Check out Selah's backwards vest. Ha! 

We even got to stop at Bop's Frozen Custard for a treat after we left the museum. 

Here's Selah enjoying her confetti cone. 

We arrived back home safely but exhausted and very grateful for a safe and successful trip!