What’s Worse Than Snakes On A Plane??

 Story time. Today I drove my mom to a dr’s apt in Tupelo. We were headed home and she noticed there was some wind noise around my sunroof. Rule number one in my car is do not mess with the sunroof because it has a tendency to get stuck in the open position. I accidentally hit the tilt button the other day and it opened a tiny bit and I couldn’t get it to close all the way, so I told my mom that was the reason for the wind noise. She said “Oh, I can fix that!” I was like “please no” but that girl don’t listen. So she started pushing buttons and the next thing I know the sunroof is open all the way. She said “Whoops, didn’t mean to do that” and I was like “WHAT DID I TELL YOU?!? But I didn’t even get that out of my mouth before something long and black fell through the sunroof directly onto my head and slithered down my arm. Now one thing about my mama—there’s nothing that scares her worse than snakes. I’ve worked very hard as an adult to overcome this fear but let me tell you I was not ready to deal with one suddenly landing on my head. To be fair, I love puppies and kitties but if one of those fell from the sky directly on top of me while I’m barreling down the highway that too would be cause for alarm. I’ve heard of people having racing thoughts before but I swear so many thoughts have never paraded through my brain all at the same time. I realized I need to keep control of the car, get the snake OUT of my car, and keep my mama IN the car because we just left the back dr but if sister gets her feet under her she’s bailing out of this car and headed off into the woods and we will never find her. It’s maybe been two seconds since the snake fell in the sunroof and as I’m reaching for mama to try to physically hold her in the car I notice she’s not even moving. She’s frozen stiff as a board and her eyes aren’t even open. It’s too much. She has been faced with a crisis of epic proportions and she’s just playing dead in the passenger seat. So I’m like wait a minute, YOU’RE MY MAMA wake up and save me!!!! It was also at this moment I realized someone was screaming loudly and that someone was me. You’ve heard the expression “screamed loud enough to wake the dead?” That’s exactly what I did because Mom reanimated and promptly joined me in screaming and flailing around. Also I’m swerving all over the place but thankfully no one was around us. In all this excitement the snake had not moved since it fell from above. We both took a good look at it where it had fallen across both our laps and we realized……it was a big piece of black rubber from the side of my sunroof. I have never been so relieved or laughed so hard. Here is the “snake” that nearly took out me and my mama: 

A Parable

This morning I rolled into church, settled into my seat, and crossed my left leg over my right while swinging my foot in my typical fidgety fashion. Almost immediately a very unpleasant smell reached my nose. I thought “ok, someone’s gassy,” and tried to focus but the smell just didn’t go away. In fact it didn’t diminish at all. It didn’t take long for me to decide someone had pooped themselves. In church.  Surreptitiously I cast my eyes around checking for someone who appeared to be in the throes of gastrointestinal distress. Everyone around me seemed fine. I was puzzled, but continued to sit there swinging my foot and trying to breathe through my mouth. 

A few minutes later my eyes happened to land on my left foot. Now I know I’ve had issues in the past with wearing boots that did not match. I am proud to tell you all that on today my boots matched. I am not proud to tell you that I had stepped in dog doo and the horrible smell I was smelling was ME.  I had walked the dogs one last time before heading to church and had quite literally stepped in it. And all the foot bouncing I was doing was just fanning the smell around.  I had to leave church in order to clean dog poop off my shoe. Who else but me would this happen to? But I think there’s a lesson to be learned in all this. 

The sermon today happened to be on parables, which  was ironic to me given that the Bible says things like “get the beam out of your own eye before you get the speck out of someone else’s” and there I was wearing dog poo shoes and wondering who it was around me that smelled so bad. Always, always check your own boots before judging anybody else. Furthermore, if you’re local and are interested in attending a church that is open and loving no matter what I highly recommend Church of the Crossroads because THEY LET ME GO THERE. Lastly, if you feel down or discouraged, I actually have friends and family that love me in spite of  (or maybe because of) my tendency to get myself into situations like this, so there’s hope for you too. Be extra kind this holiday season because you never know what other people may be stepping in.  And remember to always check your own boots first. 

Busted at Dave and Buster’s

It’s our spring break week, and we came to Nashville for a couple of  days. Korban had some appointments at Vanderbilt. (More about those later!) We made plans to do some fun things and so far we’ve had a great time and enjoyed very nice behavior from Korban. Are you sensing a but, because there’s definitely a but....

Tonight we decided to try Dave and Buster’s. We’d never been, but Korban loves arcade games and we could get food there. Brad has some friends that live nearby and they agreed to meet us. 

We all sat down to dinner together and it was great. The food was good, Korban was patient and let us eat before going to play games. He ate his food and didn’t complain or beg for more. Everything was going really smoothly. 

Here we are with our friends. They are so sweet and were so good with the kiddos. 

We went to the game room to play but Korban had noticed they had a bowling alley and he really wanted to bowl. He is obsessed with bowling. So we waited on a lane to come open and Korban was doing well but he was getting overly excited and anxious. He loves bowling so much it’s hard for him to stop when it’s time, and he tends to focus a lot on how much time he has left to bowl and it’s hard for him to be in the moment and just enjoy it. But he did okay and bowled really hard for an hour. He understood it was time to go and that we were going to go back to the game room for a little bit, and looking forward to that helped with the transition. 

Another couple was coming up to bowl on the lane adjoining ours as we were leaving. I said hello to them and bent to pick up our stuff. That’s when things went south. I heard like a shocked gasp and “Noooooo!” And I popped my head up to see Korban has snatched their drink up off the table and was guzzling it. Y’all, I will never forget the looks on their faces. I was yelling “Oh no, I’m so sorry!” And they were yelling “IT’S ALCOHOL!!!!” This is where it’s gets really funny because I am repeatedly apologizing and telling them I will buy them another drink and they are repeatedly telling me it was alcohol. I guess they were wondering why I wasn’t freaking out more about that fact and I’m just over here like “That’s totally not the worst thing he’s ever done, just please don’t be mad at us.” They ended up telling me not to worry about it, that they didn’t need another drink, and it was ok.

 I felt really bad. We’ve had a looooong discussion with Korban about how he is to ask one of us for a drink if he’s thirsty and not just snatch up something that doesn’t belong to him. Also, his breath smelled like a brewery which was disconcerting to say the least, and he said that drink tasted really yucky. Fortunately he doesn’t seem drunk and I don’t expect him to be hungover tomorrow. Maybe he’ll sleep good tonight?!? 

And in case anyone is wondering, we did do something to quench poor Korban’s thirst. Brad bellied him up to the bar and ordered him a glass of Nashville’s finest tap water, on the rocks. Although, Korban did ask him for a snow cone because of all the “flavor bottles” lined up behind the bar. 

*I also feel the need to add he’s a kid, but he’s a 120 lb kid and there’s no way one would sip (okay, even if it was a big sip) would actually inebriate him. I just feel bad he stole a stranger’s drink, and sure didn’t intend for my preteen to drink alcohol.*

I felt like a horrible mom, but it happened so fast and I wasn’t able to prevent it. You know what they say about looking around you and seeing someone worse off? As we were leaving I saw this in the parking lot and figured somebody’s kid had been drinking harder than ours, and then got behind the wheel. 

Today Is A New Day

Yesterday was a weird day for me. Y’all ever have one of those Twilight Zone days where it seems like everything that can go wrong will? That was me yesterday. 

It started off innocently enough. Our homeschool group had a Valentine’s party at the bowling alley and we were all looking forward to it. Korban LOVES bowling. Actually he loves it so much that sometimes leaving the bowling alley is a problem and provokes a meltdown. We had talked this over and he assured me he would leave when I said it was time to go so that he could go back another time. 

In typical Essary fashion, we were running late. I didn’t have cash to pay for their bowling but figured I’d use my card. Except when I got there I found out we were supposed to pay cash and it would be one lump sum payment from our homeschool group. I figured I’d let the kids bowl for a bit and then run down the street to the ATM at my bank, get cash and come back. It would be a good excuse to stop bowling and when we got back the kids could eat their snacks and then we could go. In theory it was a good plan, but I was already late and halfway through their game it came time to pay. So I told them we had to leave real quick but we could come back and they could finish their game. To their credit, they did leave quickly with me. So quickly in fact that as we were pulling out of the parking lot Selah said “Hey Mom? We still have our bowling shoes on.” *facepalm* So we had absconded from the bowling alley with two sets of bowling shoes but they knew we were coming back. I figured it would be ok.

 I fly down the street to the ATM and wouldn’t you know it, the ATM is being restocked or worked on or something. Seriously? I’d never even seen that happen before. But an orange cone was blocking the ATM line and a big white van was parked in front of it with a guy out working on it. 

Ok fine. The main branch of my bank has an ATM outside it too. It’s across town but I can drive over there and get cash. So I head that way. It seems to take forever but I finally pull up to the ATM, feeling every second tick away it seems like. And then I can’t find my bank card. Of course I panic. I was tearing my wallet apart and trying to retrace my steps of when I’d used it last. I text Brad and told him and he’s said he’d call the bank if it didn’t turn up. 

I pull away from the bank so frustrated because I STILL don’t have the money to pay for the game my kids haven’t even gotten to finish AND now I can’t find my bank card. My in laws live nearby so I called to seen if  my mother in law had any cash at home. She didn’t, but kindly offered to go to her bank and get some. I declined and searched out a checkbook and figured I would write a check. 

I headed back to the bowling alley, taking a shortcut to get us there faster. Wouldn’t you know it—TRAIN! My frustration was mounting, I was snapping at the kids and I felt like an absolute failure as a mother in those moments. I was trying but I was like a dog chasing it’s tail. I couldn’t catch it and even if I did I wouldn’t know what to do with it. Ha! 

I finally got us back to the bowling alley and took my check in and found that another parent had coverered the cost for us. I felt bad but she was so sweet about it and I told her what had happened and that I would get cash and repay her at our co-op classes later that day. 

While we were gone doing all that crazy mess, they turned our lane off and everyone was getting ready to go. I told my kids I was sorry, that I’d just made a lot of mistakes that day and we’d do a do over day soon. They took it surprisingly well, even Korban. We left and I lamented to Brad through text that I had just been an unorganized mess all morning and it was no one’s fault but mine. I told him I felt bad for the kids and said “None of the other moms there were struggling like that.” What he said back really stuck with me. He said “How do you know?” I didn’t. I assumed everyone could see what a crazy mess I was, and they all seemed fine to me, but I couldn’t see out of my mess long enough to really check and see how everyone else was doing. Sometimes I miss others pain and struggles because they’re either very good at hiding it or I’m very good at not seeing it. You know what I’m saying? 

Our day began looking up shortly thereafter. I found my debit card in the floor of the van. Apparently I got it out to use at the first ATM I went to and dropped it in all the confusion of the ATM not being usable. I went back to that ATM and it was open for business. I got cash to repay the sweet mama that helped me and we went to Dirt Cheap to get Valentine’s cards for my kids to pass out in their classes. Sometimes it pays to be a last minute mama—I got 3 boxes of really cool Valentine’s for .16. 

My kids wrote their names on their cards when we got home and I think this is the first year that Korban actually did his own. It tickled me too because he got tired of writing after awhile and instead of writing his name twice on the two cards that were together he just wrote “KORBAN” in block letters across the two cards so that when I tore them at the perforation someone got a Valentine that said “From: Kor” and someone else got one that said “From: ban.” I left it because I thought it was an accurate representation of our life and it made me laugh. If you got a Valentine with Korban’s whole name on it, consider yourself lucky. 

Our classes went well, and afterwards we got to visit with some of our favorite friends, and I chatted with some of  my other friends via text and felt better. This morning when Korban got up he said “I’m sorry you were ill at me yesterday.” That’s one of his things, he pointedly apologizes to you for stuff you did to remind you that you messed up and should apologize to him. Ha! Of course I had already apologized several times but he doesn’t forget easily. I felt bad for a minute but didn’t want to wallow in it so I just told him “Today is a new day.” He promptly responded “And yesterday was an old day.” I laughed so hard. Wise words from my little man. 

I hear a lot about how we only share our highlight reel on Facebook. And that’s pretty true for me I guess. I very pointedly try to keep my Facebook very lighthearted and happy. It’s mostly kids, dogs, and food matter of fact. So unless those things offend you, we’re good. I use the blog for deeper stuff, and you actually have to click on it to see my junk. ;) Here’s what I shared on Facebook yesterday: 

Selah, posing with the cupcakes she decorated for our party. 

And Korban bowling without bumpers and killing it. 

So those were definitely the highlights, but in the spirit of transparency,  here’s the rest of the story to go with it. If you find this relatable I will be glad to commiserate with you on the hard days and remind you that “yesterday is an old day.” If you do have everything together feel free to laugh at my circus act because I probably won’t even notice and at least some of the time we are laughing too. :) 

The Story of the Sleepy Santa

So yesterday we had Christmas Eve dinner and exchanged gifts with my mom. It was wonderful. Of course the kids were completely tanked up because hello, it’s Christmas! Korban went to bed peacefully with the assistance of Jet and melatonin but Selah was wide eyed and very excited. Brad and I thought we’d lay down with her in our bed and talk for a minute, let her go to sleep there, and then we’d get up and put out their gifts from Santa. One problem though—we passed out too and didn’t wake up until Brad’s internal alarm clock woke him up at 7:00 a.m. So yeah, no Santa at our house. Fortunately, the kids were still asleep so we jumped up in a panic and started slinging gifts under the tree. We had most of Selah’s gifts out but none of Korban’s when we heard a noise behind us. We turned around and there stands Korban in the doorway. We just froze and stood there with our mouths hanging open while Korban surveyed the dolls and accessories. He said “Hey, uh, is there going to be any boy gifts?” Poor dude was legitimately concerned. I said something profound like “GobacktobedgobacktobedGOBACKTOBED!” Brad took him back to bed, and persuaded him to wait until Selah woke up. Lo and behold, there were boy gifts. If you remembered to actually put gifts out for your kids, you’re doing better than me and Brad this Christmas. Luckily all’s well that ends well and even though we know gifts aren’t the most important thing, they did get their gifts, even the boy ones. We took some time before they were unleashed on the gifts to reflect on the true meaning of Christmas. Brad read the Christmas story and Selah assisted by acting it out. Korban prayed and we sang happy birthday to Jesus. It was a great morning even if it did get off to a wild start. 

Merry Christmas from our (crazy) household to yours! 

Four Score and Nearly Ten Years Later

Brad and I were fortunate enough to be able to attend a TEAAM (Together Enhancing Autism Awareness in Mississippi) Autism Conference in Hattiesburg today. The last time we were able to come to TEAAM event we came to a family retreat shortly after Korban was diagnosed. I was pregnant with Selah at the time, and she turns 9 in a few weeks, so it’s been a little minute. 

That was the first major autism event we went to after his diagnosis and I remember what an impact it had on me. Reflecting on that has had me in my feelings a bit today. I remember being so relieved that other people were facing the same things we were, but at the same time my heart hurt that they were having struggles too. 

I had so many questions and so, so many fears. Mostly fear of the unknown. What would the future look like? Would Korban talk? How would he handle having a sister? Would he love her? Would she accept him? Would his meltdowns ever cease? On and on and on....so many questions, so little answers. I was honestly terrified. 

Roughly a decade later we have mostly settled into “our normal.” Most of those questions have been answered. He does talk, a lot. He screamed for about the first two weeks of Selah’s life but after that he decided we would keep her and now I think he’s decided it was his idea to get a sister in the first place. They love each other a great deal and have a very special relationship, even though they drive each other crazy sometimes. Selah is nurturing and accepting and is the perfect little person for our family. Eh, meltdowns we are still working on, but in the past year he’s been much less aggressive and I am so very thankful for that. 

I still have questions. Will he read? Will he be able to live independently? Does he know how much we love him and rest in that? Am I messing this whole parenting thing up? Will the aggression come back? Will he be able to make friends? Will these meltdowns EVER CEASE? But I can honestly say I’m not terrified like I was when we first started this journey. Maybe I’ve mellowed with time. Maybe Korban’s knocked off some of my rough edges. And maybe I’ve just seen that the future I was worried about back then looks like this: 

I promise you not all of my life looks like this. They don’t always get along and Korban still deals with many challenges and behavioral issues. But the good outweighs the bad by so much, and so many of the things I wasted my precious time worrying about never came to pass. How could I afford to be anything less than grateful? 

Don’t Be Afraid

As a mom to a child with autism, I feel like one of the hardest and yet most important things is getting our family out to do stuff together. I’ve said before that sometimes it goes great and sometimes it doesn’t go so great but we dust ourselves off and keep trying. I honestly get frustrated with myself because I have so much anxiety about just regular outings. It involves so much planning and I’m honestly scared of what Korban will do when we get wherever it is we are going and what people’s reaction will be to him. We’ve had way more good experiences than bad ones but the fear never leaves me. 

Yesterday afternoon Brad’s parents returned from their vacation and called to ask if they could stop by our house on the way back home. Of course we said yes and were so glad to see them. While we were visiting with them Korban started to holler that he was hungry. (That’s a regular occurrence. Lol) So we decided we would go out to eat. 

The restaurant we picked was Country Squire in Iuka. None of us had been there in a long time, but that was my parents’ favorite restaurant when I was a kid and we ate there lots. Isn’t it funny the things you remember from when you were a kid? I remember we always sat in a booth in the back. The walls are finished with small rocks and there was this one smooth stone I liked to rub. They had apple rings on the salad bar and my parents used to get them for me. I can still remember the way the color bled out onto the napkin and dyed  it pink. I don’t remember this story, but my dad used to love to tell it. When I was little enough to still sit in a high chair I got those little paper cups like condiments come in and started spinning them on my thumbs. One flew off and landed on the table of the people eating next to us. Ah, I was a weird kid. If you know me as an adult, that’s not much of a surprise. 

Anyway, the point is I have a lot of fond memories of this place and I was really excited to be going. At least I was until we started driving there. Korban is still so jealous of me talking or interacting with people and was mad that I had been talking to his grandparents, even though we hadn’t seen them in a week and everybody had tried to make him feel included. He started asking if I was going to talk to them while we ate, and threatening to scream. His scream is so loud and awful and I knew he wouldn’t leave peaceably if things started going badly and would cause a scene. I started panicking inwardly. I had Brad call and ask if there was a wait time to be seated and started trying to prep the kids on how to act. I was just thinking “Get in there, eat, and get out.” We had the iPad with us of course, and Selah had her frog purse packed with coloring stuff, cool pens, Star Wars stickers, notebooks, etc. We were prepared. I just never know if it’s going to be enough. 

We got there and walked in right behind another family. We had to wait a minute while they cleared tables and pushed them together for us. There were some seats up front so I sat the kids in them while we waited and kept reminding Korban not to talk loud and trying to keep him happy. They had the table ready for us in a minute and we went and sat down. I don’t know whether the Holy Spirit moved in Korban or his meds kicked in or both, but his mood shifted and dude was a joy to eat dinner with. 

He talked loud, but that’s just him. He wasn’t angry or upset. And he had some really decent one-liners during our meal. Some examples: 

(Hollering down the table): “Hey Mammaw, do you wear lipstick?” 

Charlotte: “No, I don’t.” 

Korban: “ME EITHER!” 

My personal favorite—“I like tartar sauce. It’s like sauce but with tartar in it.” 

And this one, as he shoveled food in—“My hand hurts. I think I’m getting arthritis.” 

Sometimes he says the blessing before we eat and it generally goes like this “THANKYOUGODFORTHISFOOD. BLESSITTONOURISHOURBODIESANDOURBODIESTOYOURSERVICEAMEN.” All in one breath, because he is ready to eat. But apparently he decided last night was a special occasion and he announced unprompted that he was about to pray and then dramatically folded his hands and proceeded to tell each of us to close our eyes. Then he prayed like a preacher at a tent revival. He blessed the food and everyone in our family. He asked God to put a hedge of protection around us and to let no weapon formed against us prosper. He was on a roll and it was great. Very sweet. So things were going well. 

When I went to the salad bar I had an unexpected encounter. A man came out from the back and said “Excuse me, was that your son that was sitting out front earlier?” Even though things had been going great I thought, my heart kind of jumped into my throat. I was sort of braced to hear “What’s wrong with him?” or to have to apologize for Korban talking loud. It wasn’t any of those things. The man kindly asked “Can he have sweets?” I smiled and said yes, that he loves sweets. He asked what he liked and what my daughter liked and if it would be okay for him to send them something when they got finished eating. I said of course and thanked him profusely. 

So when we finished eating our waitress brought out a platter filled with brownies, ice cream, chocolate syrup, and whipped cream. I thought Korban was going to vibrate right out of his seat he was so happy and Selah was tickled pink too. 

Look at those faces! Korban’s eyes are cracking me up. 

Look how full his cheeks are! He’s like a squirrel. 

Nomnomnom

Selah’s curls were kicking and so was her daddy’s beard. 

He’s got that fork ready, y’all. 

So it was the owner who sent the kids the dessert and it really, really meant a lot to me that he did it. I was feeling pretty apprehensive before we sat down to eat last night, but it ended up being the highlight of our week. I said all this to say to other families that are in our shoes, especially with kids younger than Korban, do like Dory and just keep swimming. I know it’s hard. Some things have gotten so much easier as Korban has gotten older and some new challenges have popped up. I still get scared and want to hide under a rock at least once a day. But if I had done that last night I would’ve missed this. There are a lot of good people left in the world, and I want to be one of them. Please be enouraged, and remember to be kind to others. You don’t even have to give brownies and ice cream but my goodness what an impact it made on my family last night. A very sweet treat indeed....

Like A Boss

Korban is at an odd stage right now. Technically, physically, he is 12. He is a preteen. Mentally and emotionally, he is much, much younger in many ways. The best way I can think of to describe it is imagine raising a toddler who is roughly the same size as you. Korban is more advanced than a toddler in many ways, but he’s definitely still so impulsive, unreasonable,  and emotional and it’s not like I can just pick him up and tote him out of a store if things go south. He is making progress in so many areas but sometimes it just feels like one step forward and two back. 

This past Sunday he came to me while I was cooking breakfast and asked me to pull a wiggly tooth. He isn’t dramatic about pulling teeth thankfully, but he generally wants them GONE when he can feel them moving. I was elbow deep in biscuit dough and told him I couldn’t pull it right then and he accepted that and walked off. A few minutes later he returned, tooth in hand, and proudly told me he pulled that tooth “like a BOSS!” He sure did and we were all really proud of him and made a big deal out of it. I’m so glad he is starting to be more independent and can do things for himself. And then there was yesterday....

Yesterday afternoon Selah was sitting at the kitchen table working on her math, I had already started getting things ready for dinner, and Korban was in his room sitting on his crash pad, flipping through a picture book. At least that’s what he was doing the last time I checked on him. I was turned around to the sink washing a dish when I hear Korban’s voice behind me and he said “Hey Mom! I cut my...” Based on his history my mom brain is filling in blanks like “cut my hand, cut my arm, cut my ENTIRE LEG OFF!” So I spun around in a panic. Hair, y’all. He cut his hair. So on the one hand I’m relieved (very relieved) that there’s no blood and no injuries. On the other hand, my 12 year old now looks like Jim Carrey did in Dumb and Dumber. I did some deep breathing and told him to show me the scissors he used. He took me to his room and showed me a pile of hair on the floor. Hair that used to be on his head. He was so proud of himself and thought the whole thing was hilarious. No regrets whatsoever. I decided I need to step back for a minute and connect with Jesus so I left him in his room and walked back to the kitchen.

 Selah was making deviled eggs for her daddy. She is very good at that. She had broken one of the boiled eggs as she was peeling it though, so she was feeding it to her new puppy. Her new, not quite housetrained puppy. So I explained that probably wasn’t the best idea and as I’m going over that Jim Carrey Jr. pops back up in my kitchen and says “Look Mom, I cut it more!” I didn’t really think he could make it look worse, but trust me, he did. How did I not think to confiscate the scissors when I left his room? More deep breathing. My boy looks like this:

And again, he is still SO PROUD. He said “I cut my hair like a BOSS!” I’m thinking “Dude, have you seen your noggin? This is the opposite of a boss!”

 I didn’t say that out loud but at some point in all this he realized I wasn’t quite as thrilled as he was and he scooped a handful of his hair off the floor and said “Will you help me glue it back on?” I got so tickled at that and couldn’t stop laughing. But seriously, when he does things he doesn’t understand that they can’t easily be undone. 

We’ve had a long talk about how we don’t cut our own hair and how we go to the barber shop for that. Selah, who graciously offered to “even it up” herself, told him “Korban, you need a PROFESSIONAL!” 

Sister ain’t lying. He needs a professional. We are going to get his head buzzed this morning. Once he gets something on his mind he can’t let it go. He was still getting ahold of scissors and trying to cut his hair more last night. I had no idea we owned so many pairs of scissors. We apparently also need to own a safe to store them in. He also decided last night that since I wasn’t happy about the whole hair cutting business, he’d just fill in the bald spot himself. With a magic marker. I kid you not. 

I gotta at least give him credit for creative thinking on that one. And as one of my friends pointed out, he used two colors! Orange and green, maybe he’s getting ready for Halloween. Selah said he looked like a rock star and I thought about letting him rock this look until November. If y’all see me out and about with my kids looking any sort of way just pat me on the shoulder and pass me a coffee, please. 

My Easy Button Child

I say this with caution, because I don’t want it to seem like I am saying I love her more (I don’t) but Selah is a much easier child to raise than her brother. I can turn her loose in a playground without worrying she will run off or hurt another child. I don’t flinch when she raises her arm around me. She hit her milestones on point and communicates very well, which makes life a lot simpler. She’s gentle and compliant and wants to be helpful. And she’s also extremely funny and just a joy. 

My fear with her is that since she was so easy she would feel overlooked since Korban has so many needs. She doesn’t seem to feel that way, and we’ve tried really hard to make sure she has her own activities and we spend time just with her. That’s one of the main reason I homeschool her—so we will have a few hours out of the day just me and her. 

Selah always just seemed healthier and stronger than Korban did as a baby. She had her share of sickness like any child does, but nothing like what he went through. As he has gotten older his health has thankfully improved. He has primary immune deficiency, and required treatments for that until last year. He has been under close supervision from his immunologist, but his levels have stayed good and he hasn’t required additional treatments. 

Selah has actually been sick more than he has this year. A couple of months ago she was getting ready to go to her jiu jitsu class and she came and told me she didn’t want to go. Very unusual for her, because she loves jiu jitsu. I asked her why and she said her ear had just started hurting. Brad had to go to a board meeting that night so we decided he’d go early to take her to the urgent care clinic that was still open. We debated on taking her, but decided that she was probably getting an ear infection and didn’t want to put off having a dr check her. So they went on, and the dr said she definitely had an ear infection. Brad got her script filled and took her to his parents’ house while he went to his board meeting, which was just around the corner. They text him during his meeting saying she was inconsolable and they were worried. They never do that, and Selah is generally calm, even when she feels bad. Brad left immediately to go get her and found her screaming in pain. She was calm again by the time they got home but I figured I knew what happened. I looked at her ear and she had fluid and junk pouring out of it—her eardrum had ruptured. 

I took her to her regular dr the next day for confirmation. She even let me look at it. Selah’s eardrum was a raggedy hole. Ugh! We added ear drops and they scheduled her with the ENT. It was scary because it happened so fast. She went from perfectly fine, to “oh my ear hurts a little,” to screaming in pain as her eardrum ruptured all in a manner of hours. Her dr said it just happens that way some time. 

The ENT got her in quickly and said we’d just watch it, that they typically heal up on their own. Selah sighed and said “I’ve seen THREE doctors over this ONE ear!” Ha! We went back in a few weeks to the ENT for a recheck. Her eardrum was looking much better. The audiologist did a hearing screen, which she passed, so thankfully her hearing wasn’t damaged. 

The dr did say it was unusual for ear infections to persist in an older child. She had two sets of tubes when she was younger. He thought maybe it was allergy issues so he started her on Zyrtec. I explained about Korban’s immune issues and that during our genetic workup they found out I was a carrier for immune deficieny. He thought it would be best to have Selah tested so over the summer Brad took her to the local hospital and they drew some blood to check. She did not love that whole process. 

We went back to the ENT last week. Her ears looked great but the blood work showed that her iGA was low. He recommended we see an immunologist and referred her to the one Korban sees, whom we love. As it turned out, Korban was already scheduled for a checkup this week so they were able to add Selah on as a new patient and see both of them. Specialists hardly ever get somebody in that quickly so that was a big deal. Also, it’s about a 4 hour drive from our house so getting both kids seen the same day was a huge help. 

That all happened last Thursday. On Saturday night Selah said “My mouth hurts.”  I flipped my iPhone light on like a true Dr. Mama and shined it in her mouth. Her gum was all swollen up by one of her back teeth and looked red and painful. She said it had felt funny for a couple of days but it just started hurting. On Sunday Brad took her back to Express Care and got an antibiotic for her tooth, which was abscessed. I called her dentist first thing Monday and he wanted to see her on Thursday. They were able to do it at 9:00 in Oxford and then we would drive on to their immunology apt in Madison. 

Brad took off work to help and we all got up early and headed to Oxford. Brad, Korban and Jet went to get gas while I took Selah in to her dental apt. They wound up having to pull her poor tooth but she did really well. She cried a lot afterwards when the feeling came back. 

Look at that little face! I felt so bad for her. The dentist told me the roots broke off and he had to dig them out. When I was explaining this to Brad she overheard and said “What do you mean roots? I’m not a tree!” We cracked up. She settled down as we drove and was feeling much better by the time we got to Madison. 

We love our immunologist and the kids were glad to see him. He comes in carrying a basket of treats. Korban picked a water gun and so did Selah. I guess she figured she’d need to defend herself. 

Both kids did breathing tests. Korban couldn’t quite get the hang of it so we didn’t get test results for him. Selah did the test, took a breathing treatment, and then did the test again. She just needs a rescue inhaler because she wheezes when she gets exerted sometimes. Both kids also had to get blood drawn. Korban handles it like a pro now, which is probably a miracle. I can’t believe this is the same kid I used to have to sit on so they could get his IViG started. He went first to show Selah how it was done and she climbed up on the table beside him and held his hand. 

Isn’t that the sweetest? 

She was nervous for her blood work and cried a little. Brad asked if they had anything to numb it with and they had a cold spray. We called it “Elsa breath” and she thought that was hilarious. She didn’t want any of us to hold her hand while they drew her blood but she held her daddy’s elbow. She got her own style. 

We were there for several hours but the boys were quite chill. 

Selah was in a good mood despite all she’d been through. 

 After we finished the apt we went to eat at Chili’s. Selah had barely eaten anything all day but her mouth was feeling better and she ate really well. 

Obviously. 

We didn’t have time for a museum or anything fun, so I ran into Target to get them a treat off the clearance rack for being so good today.  I do love a good Target. I found this gem for Selah: 

No matter what kind of day you’re having, Star Wars always helps. 

She also got a squishy toy and a Little Mermaid fidget spinner. I got 0 pics of Korban’s happy, but he got tiny keychain flashlights which made him so happy he vibrated, a squishy ball he wasn’t impressed with, and a Funko Pop Supreme Leader Snoke that I scored for $2.48. Selah said he was ugly and Korban absolutely loved it. Yay for Target clearance! 

Selah’s a tough little cookie, animal expert, and the best sister ever. We should get our test results next week. Our little easy button could use your prayers and so could her big brother. 

For The Moments I Feel Faint

Korban started another school year (6th grade!!!) on Monday and is doing very well. He has a new teacher this year and new students in his class so I knew it would be an adjustment. He likes his new teacher a lot and one of the aides he is close to is still in his room so I’m very thankful for that. He was anxious to meet his new teacher at open house but once he met her he settled down and was excited to start school. 

Monday went well. I picked him up at 10:00 because we had therapy from 10:45-3 in Corinth and he’d done well and had a good day. Tuesday he was scheduled until 12:00 and was supposed to eat lunch in the cafeteria. That was a huge deal to us because he has not eaten lunch in the cafeteria since his kindergarten year, and it was a huge trigger for him then. Sometimes he would scream in the cafeteria, or act out, but a lot of the time he would hold it together until they got back to the room and then lash out at anyone and anything. He threw a chair across the room one day after lunch. It was major. So that was when things were so bad we did homebound for awhile and his teacher came to our house three days a week and the other two days I took him to the school and stayed with him while she worked with him one on one. We did that so he would still remember the school and be in a routine of going so that we could slowly build back up. 

Those were really hard times but the school really stuck with us and his teacher was amazing. He had his own little room at the school that we worked with him in and I remember one day he got really upset with little warning and suddenly turned and clawed my cheek so hard blood started running down my face. I was generally pretty good at being stoic but that day I burst into tears and ran and locked myself in the staff bathroom, leaving his teacher to deal with my screaming child. She handled it like a boss and still loves me so it’s all good. But until you’ve locked yourself in a bathroom at your kid’s school sobbing and bleeding you don’t know the struggle. (His teacher also knew this struggle. She got more than her share of scratches and bruises and somedays I would pick him up and wads of her hair would be in the trashcan from him pulling it out. It was a dark time.) 

I said all that to say, we’ve come a looooooong way since then, thankfully. We still have our struggles of course, and some days are harder than others but progress is a beautiful thing. When I went to pick Korban up Tuesday, the principal waved me into her office and was so genuinely excited because she had seen him in the cafeteria holding his tray and acting all calm and grown up. I could’ve cried. (But in a good way, not a lock myself in their bathroom kind of way.) 

I got him from the aide  and she said he did great. He ate his chicken quesadilla and asked her for another one. Ha! I had written a note explaining that it could go one of two ways—either he wouldn’t eat anything or he would eat it all and ask for more. I told them if the latter was the case to just tell him mom had more food at home. She told him just that and he was fine. He also ate his chips and salsa from his tray at school and drank his milk. And he ate again when he got home because he’s a hobbit. Brad said “We need to explain to him that the school cafeteria is NOT a buffet.” We’ve laughed so hard about how things have changed and how once he remembered they had food up in the school they may not be able to get him to do anything else.  

He did well at lunch on Wednesday too, although he didn’t eat very much. That’s definitely ok because it’s not like he’s malnourished or anything. He did get cranky with me when we were trying to leave because he wanted this pencil he had left in his room. He loves to sharpen pencils down to nubs and then hold onto them. I was trying to tell him to leave that in his classroom because he had one at home he’d brought from school the day before. He got pretty loud in the hallway but he finally settled down and left with me. On the way out he said “CAN I CUSS?” Dude, no. 🤦‍♀️😂 I told one of my friends about that and she laughed and said that might be her new motto. (For anyone who’s wondering, he knows exactly two cuss words that he periodically belts out and embarrasses the mess out of me, so at least he asked that time.) 

Today they contacted me to say he was really overstimulated and they weren’t sure he would do as well in the cafeteria so I made the decision to go on and get him. I want to set him up to succeed and not put too much on him. If he was already struggling, no sense in ruining a good thing. I told Brad the other day that I feel like we are constantly walking a tightrope between not holding him back and underestimating him  and pushing him too hard. But I feel like between the two of us we balance each other out fairly well and get fairly close to a happy medium. I hope so anyway. 

So I picked him up and he really was overstimulated. He was trying to wiggle out of his seatbelt and lay down in the backseat and just being wild. He kept aggravating Selah and being loud. I finally got him settled down and got both kids lunch and then finished up Selah’s schoolwork for the day. She had an appointment with her ENT at 2:00, and Korban was going to stay with his Mamaw while I took Sis to the dr. I had fixed myself a cheese quesadilla for lunch but let it sit on the stove and get cold while I finished lessons with Selah. I figured I better scarf it down before we left so I asked Selah to walk her dog Roxie in the back yard while I ate. 

I took my food out on the porch so I could hear them. Korban asked if he could walk with Selah and she said yes and I did too. He had calmed down considerably. They walked behind the house and I sat on the porch and munched my quesadilla. In a few minutes Selah rounded the corner and said “Mom, I think you need to come look at Korban.” 

I should mention that last week we had to have our septic tank replaced. So there was a lot of dirt in our backyard. It’s been pretty dry but we had a big rain this morning while Korban was at school. I wasn’t thinking about any of that when I turned the kids loose in the backyard. I was just thinking about lunch and getting on the road. I rounded the corner and saw this. 

Can someone make me a shirt with “CAN I CUSS?” printed on it? 😂😂😂

I made him strip down on the porch and then I gave him a good scrubbing in the tub. Even with that I still managed to drop him off (clean!) with his Mamaw and make it to Selah’s apt five minutes early, which is a miracle. I guess we got bath time out of the way early today. 

Today was a bit of a setback, but I’ve made it through much, much worse. The aggression and self harm was honestly the hardest thing we’ve ever dealt with and I’m so thankful that has been loads better the past year. His aide saw I was concerned today when I picked him up and said “Oh don’t worry, it wasn’t like it used to be.” Whew! I felt like I could breathe again. 

What some people don’t understand is sometimes you can work and work and work and still only make limited progress. It’s both exhausting and terrifying, to give your best and it not be good enough. He was diagnosed with autism at age 3 but he started therapies like OT and speech when he was two. He started getting ABA (behavioral therapy) when he was six through the school. Before that I drove him back and forth to Tupelo to the Autism Center for ABA several time a week for close to two years. We do prescription medicine and alternative treatments like supplements. We have a service dog. We work hard.

 

Just an example—Korban has this horrible, ear splitting scream he does when he’s upset. I’ve never heard anything like it. If you heard it out in public you would immediately notice and be alarmed. And he’s done it in public plenty of times. Six years we’ve worked on this behavior with his therapist. Six years of saying that if he had to scream he could scream in his room but no where else. Six years of trying to give him other ways to cope. And after six years, this summer he got upset while we were out and looked at me and said “Can I scream in my room when I get home?” I said sure and he went on and managed to stay composed. He’s done that several times since. Sometimes he is fine by the time he gets home and sometimes he does go to his room and scream. But either way, I applaud his self control. I don’t mean he’s only been doing this particular scream for the past six years. He’s done it since he was about 18 months. I just mean we had tried other things that the dr who diagnosed him recommended, such as ignoring it and waiting for him to stop the behavior. Never did any good and if you heard him do it you’d swear he was dying and not just angry that his favorite flashlight needed a new battery or something. I mean we’ve been dealing with that behavior for over a decade, but we finally got behavioral therapy six years ago when he started school and have been working with a behaviorist to help him find better coping skills since then. 

Setbacks are hard sometimes, but he’s doing well overall and I am so so thankful. Some days are gonna look like this: 

While other days look like this: 

But either way, it looks better than where we’ve been. 

Because I Love A Good Deal

I consider myself a very frugal person.  I mean, I kind of have to be. I stay at home with the kids because I love it and because we can’t afford to pay anybody to do all that I do, but I’m not bringing home an actual income. Brad works super hard but mental health workers in Mississippi aren’t exactly getting rich. But we have all that we need and a lot of the things we want, we just have to be careful. And we are pretty good at being careful. 

So today I ran in one of my favorite stores, Dirt Cheap. They had a rack of clothes for $1.00. Clothes for a dolla? Sign me up. So I found Selah a Minions dress, a Minecraft t-shirt that glows in the dark, and a Halloween shirt that says “I love candy,” for when that time comes. Korban got a Darth Vader t-shirt (and as a bonus he and I wear the same size shirt now, so I can steal it!) Also, I found myself two cute dresses. 

I love wearing dresses in the summer because you don’t have to match top and bottom, you just put one thing on and bam, you have an outfit! But mostly it’s just because it’s too hot in the South to wear pants. One of the dresses was actually long sleeved, so I don’t plan on wearing it right now, but I figured that once fall got here, I would be happy I had it and Selah’s Halloween shirt. Also, it was a size smaller that what I normally wear, but the waist wasn’t fitted at all so I figured for $1, what could go wrong? 

After I left Dirt Cheap, I went to meet Brad. He had taken the kids to therapy this morning and I had to get Selah from him to take to another apt while he took Korban to ABA (behavioral therapy.) When I met them, Brad saw the sack on the front seat and asked what it was. I told him clothes and he was all like “Don’t be getting crazy with the spending!” and I was like “Dude, seriously. Did you forget who you are talking to? That sack of clothes cost $6!” and he was all like “BUT STILL!” 

So anyway, I got Selah and took her on to her apt. I had a few minutes to kill while I was waiting on her to be finished so I ran in the library. Let me preface this by saying I’m honestly not much of a clothes and shoes shopper, but I’m pretty much obsessed with books. So I go in the library and wouldn’t you know, they’re having a book sale and there’s a sign saying “Fill a bag with books for $2!” So of course I’m like “Wow! I need a bag!” I was expecting like a small grocery store bag, and that would’ve still been a good deal. But no, the woman gave me a giant bag from (of all places, if you’ve read this blog) CRACKER BARREL! Brad’s wife is loose in the book sale with a Cracker Barrel sack. Best Monday ever! Here’s my bag of books: 

Isn’t it fabulous? I got 33 books for $2. 

Summer reading here I come! 

So then I pulled out the clothes and looked at them and the books and thought “I got all this crap for $8!” I showed Selah her new clothes, and she loved them. Brad and Korban were still at therapy, so it was just me and Selah at home. I decided I should try on my dresses. 

Now the fall dress looks like this: 

Perfectly innocuous looking dress, right? I pull it on and it fits. The shoulders feel a bit tight but all the buttons fasten with no problem and it feels fine and looks okay. I’m good to go—until I try to take it off. The shoulders are SO tight I don’t have enough wiggle room to take the dress off. So I call Selah to help. She’s not tall enough, so she stands in a chair and tries to help me pull it over my head. No luck, so then I try kneeling in the floor but she still can’t get the dress off of me. Being stuck inside clothes is the worst claustropic feeling so by this time I’m laughing hysterically and also totally certain I’m gonna die in this dress. I’m just hoping at this point that Brad’s next wife is frugal because he has no idea how much normal people pay for stuff and that she has better taste in clothes than I do. 

I had no idea how much longer it would be before the boys got home. Selah suggested cutting the dress of but I said “No! That would ruin it. I still want to wear it.” She said “Why would you want to get back IN it after you manage to get OUT of it?!? Which is a pretty solid point from the eight year old. She then asked if I wanted her to dial 911 but I noped out of that one real quick too. 

I did like the idea of calling for help though, so I called my mom instead of emergency services. She lives around the corner, which comes in handy in situations like this. I asked if she was busy. She said no, so I told her I was going to come over and show her something. I loaded Selah into the car (I can move fine in this dress as long as it doesn’t involve raising my arms above my head) and we head out to my moms. Selah offered her services and asked if I wanted her to use my phone to video while Nana got me out of the dress. Yet again, my answer was a big NO! 

We went in my moms and I said “Hey look, I got a new dress!” It was pretty obvious it was new because I hadn’t even bothered to cut the tags off of it yet. I explained that it cost $1 and “It even has POCKETS!” (Dresses with pockets are the best. Except for when you get stuck in them.) Honestly my mom didn’t even think anything about me showing up at her door with a new dress with pockets and the tags still on it, because I’m really random like that but then Selah was like “Yeah, she’s stuck in it.” And my mom yanked the dress over my head and saved me just as soon as she got done laughing. 

In hindsight, maybe cheap dresses aren’t always a great deal unless they are exactly your size. Even if they do have pockets. But I have to say I’m very glad I didn’t try it on in the store. No one at Dirt Cheap gets paid enough to bust me out of a dress I’m stuck in. Maybe my shoulders will shrink by this fall. My thoughts and prayers go out to everyone shopping for summer clothes. 

That Time We Cracked Out And Cracked Up At Cracker Barrel

We headed down to Jackson, MS for the disAbility Mega conference Wednesday morning. We took this picture before we headed out.

 I was really happy because Korban let me rest my hand on his back for the picture, even though he wouldn't stand very close to me. I mentioned in a previous blog how he is going through a period where he can't stand for anybody to touch him or stand close to him. Remember that, because it's going to be real important here in just a minute...

Brad's parents asked to go to the conference with us and we were able to make the necessary arrangements for the conference. We were excited because they haven't gotten to go on a trip together in a very long time and we have never been anywhere all together. I was really hoping they could relax and enjoy themselves and it would be a good trip for all of us. The kids were excited to go. This is the third time we've been to this particular conference and our first time to speak at it. We are speaking Friday morning about autism and service dogs. 

We decided to stop in Tupelo to eat, since we were hungry and it was lunchtime. We chose Cracker Barrel. It was actually my idea I believe, because I am a stubborn individual who does not learn from her mistakes. (Again, more about that later.) 

Now I know most of you have probably eaten at a Cracker Barrel, so you know the experience of walking in through the country store crowded with breakable merchandise. I thought we could make it past that. What I failed to take into consideration was the crowd of breakable PEOPLE that might be in there. Shall we say that Cracker Barrel appeals to the um, geriatric population? 

So in we go with Korban securely tethered to Jet and the rest of our little entourage following along. Not only is the little store packed with all the things, it is also packed with people. Old people. So many old people. Brad was handling Jet, and he deftly led the boys through the perimeter of the store, following the path of least resistance. We navigated that successfully but then it was time to wait at the hostess stand, along with a crowd of other people. And Korban was not having it. He took one look at all those people and instant panic set in. "NO!" he wailed "NononoNOOOOOOO!!!" By then everyone was looking and I knew we needed to make a hasty exit. The problem was we were literally hemmed in on every side by all these sweet, fragile elderly people and since teleporting isn't an option (although for autism families by golly, it should be) we were just stuck. Korban's screaming and trying to bolt but he can't because he's attached to Jet. Every time I reach for him he screams louder and jerks in the opposite direction. I finally just grabbed a fistful of his shirt in each hand, figuring it was better than touching his skin, and started hauling him in the direction of the exit while Brad and Jet propelled him from the other side. We said excuse me a bunch of times and I frantically prayed he wouldn't inadvertently cause someone a broken hip. Finally we were in the sunshine, looking at a sea of wooden rockers, which we collapsed gratefully into. 

I offered to run Korban through a drive through while the rest of the family ate inside Cracker Barrel, but Brad just rolled his eyes at me. Actually he rolled them twice, because he was wearing sunglasses and he took him off to make sure I got the full effect the second time. As we were leaving a lady came outside and asked me if Korban was ok. I told her yes, that he just panicked because of too many people. She said her neighbor has two children with autism and she understands. Hugged me and told me she hoped he felt better soon. In case you ever need to how to react when someone's child has a meltdown in public, her reaction was pretty much the epitome of the best possible reaction. 

We decided we should just go through the drive through at Chik Fil A and be on our way. (I love you, beautiful chicken manna from Chik Fil A.)  The rest of our family loaded up and me and Brad stood at the back of the van and looked at each other. It was one of those "are we gonna keep moving or find a hole to lay low in for awhile," kind of looks. After a minute, he said "Bless 'em, they were TRYING to move out of the way. They weren't stopping to stare and be all judgy, they just couldn't get out of the way fast enough." I sighed and said "I know. I'm really glad he didn't push anybody." Brad said "did you see that one fella? He hitched up his pants so that he could move faster!" *Brad hitches up his khakis and rapidly shuffles across the parking lot to demonstrate* I couldn't help it, I started laughing. "And there were three little ladies all yanking on each other and trying to run away in different directions," he went on. I was totally cracking up by this point. We sure caused a scene. 

And that made me think of the last time Korban flipped out at that same Cracker Barrel. I hadn't thought of that incident in ages, and if I had've I probably wouldn't have been so quick to suggest it today. Korban was around 6 and we stopped by after a neurologist apt in Tupelo. It wasn't even that crowded but he was really antsy and threw one of those peg games. I got super worried because they have those oil lamps on the table too so we beat a hasty retreat before we even ordered. He was small enough then I could still scoop him up in my arms and hustle with them, but he was fighting me that day. He managed to hook his fingers in my scoop neck shirt AND my bra and jerked it down, causing me to flash everyone. And then when we got out to those lovely rocking chairs, he treated all the folks sitting out there to the same show! So yeah, it's probably a miracle they don't have a poster up with our faces on it saying "Do not let these people come in." 

I relayed that story to Brad and it was his turn to crack up. We agreed that at least I kept my clothes on this time. And then I remembered that whole controversy about Cracker Barrel firing Brad's wife, and I am also Brad's wife, so we laughed about that for a while too. 

If there's one thing I've learned, if there is anyway at all, find the humor in a challenging situation. Laughter will carry you through some tough times and I ugly cry anyway, so I'm really doing the world a favor. Look for the kind people like the lady who went out of her way to show us kindness.  And every single chance you get,  BE that kind lady. 

We still haven't made it out of northeast Mississippi, so if you pray now would be a good time to do so. ;) More updates coming soon! 

Immunologist Apt

So here's the deal--We had Korban's immunology apt first thing this morning. We met with two different doctors and they conferred over Korban's case. He has to be off of his treatments for three months. This will give the infusions time to clear his system and will let us know if he can produce immunoglobulin on his own. We will go back in September for a check up and labs. If the bloodwork shows that his levels are good, we can stay off the treatment. If his levels have dropped, we will start back on SCiG treatments through Batson instead of UAB. So three months off of his treatment, plus waiting several weeks on all the lab tests to come back, then getting back started on SCiG and waiting for it to get back in his system good since we are starting over...if he does need it, it would be Christmas at least before we got him back healthy. I'm trying to think positively that he won't need it, but I honestly have a lot of anxiety about this. The Drs understood this and did tell us to call if he starts getting sick before then and they will reevaluate. Basically, as far as his insurance is concerned, he's starting over and we have to prove there is a need for his treatments. 

On the one hand, I'm pretty excited thinking that there's a chance we won't have to do treatments every week or every month for the rest of his life. But I'm just scared he will get sick. I keep going back and forth in my mind. They told us this is the best time to do a trial like this because there isn't as much sickness circulating in the summer. They did tell us to avoid water parks and the lake though. Too many germs there if his immune system isn't functioning as it should. I worry about staph a lot because he always has open sores due to his skin picking, and they looked at all that today. It's just scary. 

So basically we go home and wait. I think about how much work IViG and SCiG was, but it was so worth it. We've had the best year yet health wise this past year. It was so hard when he was little and sick all the time. We hardly ever got to go anywhere or do anything. Lots of frantic middle of the night ER trips with asthma attacks. Before he was diagnosed his pediatrician told us to just keep him home for a couple of months to see if he we could get him to well. My parents kept him at our house during the day because I was still working then. When me and Brad got home from work we immediately changed clothes and scrubbed up like a surgeon before we even touched Korban. We took turns going to church on Sunday. It was tough but we just wanted him healthy. All those precautions and he was STILL sick all the time. Always worrying. Once we finally knew what we were dealing with and got him somewhat healthy, we tried to make up for lost time. But he is older and stronger now, and his communication has improved a lot, so hopefully he can tell us if he feels bad. 

We will see how it goes. Thank you all for your thoughts and prayers. Please keep them up! We are hoping Korban exceeds our expectations health wise and that Mom and Dad don't get too anxious. 

We used our Pink Palace membership to get in the Museum of Natural Science for free as a treat after the apt. We always love going there. As an added bonus, today was snake day and they have a dinosaur 

exhibit. 

Birdwatching! 

Korban was apparently pretty excited to see this dinosaur. Ha! 

Selah got to pet a rat snake. 

And a turtle! 

Jet was good and never makes a peep; however, Korban randomly barked at some people and startled them. 

Immune Deficiency Update

Just in case you didn't know, or didn't remember, Korban was diagnosed with a primary immune deficiency back when he was 4. He had been sick SO much and we'd had some pretty good scares. When the results of his bloodwork came in identifying the immune deficiency, his pediatric immunologist at Blair Batson in Jackson was on extended medical leave, so his pediatrician referred us to Children's of Alabama in Birmingham (at UAB). 

We saw his immunologist there for the first time when he was 4. She's always been great to us. She started off treating him with less evasive treatments such as prophalactic antibiotics but it didn't work and he was still sick a lot, so we moved on to the IViG. Every four weeks we would drive to Birmingham (about a three hour drive from our house) to get him hooked up to an IV so he could get an infusion of blood products that had the immunoglobulins that his body wasn't producing in it. This took several hours and getting an IV in him wasn't fun, but he was finally healthy so it was definitely worth it. 

We did IViG (intravenous immunoglobulin) infusions in Birmingham from the time he was 4 until he was almost 10. We started having trouble getting our insurance to cover the out of state treatments, even though Blair Batson in Mississippi is even further from our house (over 4 hours). Korban's immunologist at UAB told us about a research study that Korban could participate in and we opted to do it. It was SCiG (subcutaneous immunoglobulin) so his treatment went in through three little sites on his belly instead of through a vein. Brad and I were trained and did it three weeks out of the month at home and went for a checkup at UAB the fourth week. 

We've been in the study for about a year and a half and Korban has tolerated it very well. It's much easier than getting the IV's and his levels have been wonderful. We thought the study was going to be extended and we would only go to UAB every few months for checkups but unfortunately we found out a few weeks ago that the study was ending abruptly. Once the meds we had ran out, there would be no more. We had two more doses in our fridge when I got the call saying the study had ended. 

It wouldn't have been such a big deal but UAB no longer accepts Korban's insurance (MS Medicaid through SSI) so our people in Birmingham were scrambling to get us in somewhere that could help us. They referred us back to Blair Batson, so we've basically come full circle. Batson initially said they couldn't get us in until August, which panicked me because that is a long time to be without a medicine he needs to take every week to stay healthy. 

So then his dr and nurses sent a referral to home health to see if they could start seeing us and shipping Korban's meds to us. Still waiting to see if his insurance will approve that. In the meantime, Brad called Batson Friday and they told him they could get us in Tuesday at 7:45. So we are driving down tonight to stay in a hotel so we can be there for that apt first by tomorrow morning. We don't even know for sure which dr we will be seeing, they told us it would be whichever immunologist is on call, but we don't care. We are just thankful they could work us in. 

Korban however, doesn't understand why we can't keep going to UAB like we've been doing every month for the past 7 years or why he didn't get his treatment this past Friday. As you can imagine, we've gotten pretty close to the people at UAB, especially the ones doing the research study. They worked so hard to earn Korban's trust, which isn't an easy thing to do, and he loved them. We all did! I know Batson has good people, but change is HARD, especially with autism. When Brad took Korban for his final visit at UAB last Friday, he wouldn't even tell them good-bye. He didn't accept or understand that he wouldn't see them again. 

We aren't sure if this dr will want to continue the SCiG or try him off of it and see how he holds up. It's scary for us because he only missed one month during his time on IViG and it was because we couldn't get the insurance approval. That was a rough month. He didn't feel well and was super ill because of that. His levels had started dropping so they said then it didn't look like he was outgrowing his immune deficiency. (That is possible. The only way to know is to stop treatment and see if he gets sick.) We have mixed feelings about that. We hate seeing him sick and we know what happened last time he missed a dose. But we don't want him to be on any medicine he doesn't have to be on. There's also the third (scariest) option, and that's that he still needs the medicine but we aren't able to get it because of insurance. It's crazy to me--if at any point

in this whole journey with his immune deficiency we had said "You know what? It's just too much. We aren't going to drive all this way and hold him down for an IV. Bye bye now," they would've likely reported us for medical neglect, and rightfully so. But if insurance decides they don't want to pay for his meds, boom, that's it, you have a sick kid and that's that. I'm not complaining or asking for pity--I'm just telling our story. There are a lot of families in much worse shape than us. I know because I've been in plenty of dr's and hospitals and I've seen them. But it bothers me when insurance companies either can't or won't take care

of people and then I scroll through Facebook and my friends are ranting about all these families getting a free ride on government programs. I left my job to come home and take care of my child with special needs, my husband has a master's degree and works hard and we pay taxes like everybody else. I'm not going to argue on Facebook or anywhere else but sometimes I think people forget they are talking about real families, real people, and they don't understand the full scope of their situation. I know there are people that abuse things, but there are so many that don't. 

Here's my real little person and we are going to do whatever we need to take care of him. Please pray for safe travels for us and a good outcome to our dr visit in the morning, whatever that may be. 

When You Just Can't Deal

So last week Korban had a checkup with his neurologist. It went pretty well. We mainly discussed some behavioral problems he's been having. She recommended a behavioral therapy group out of Booneville that I had never heard of. She said they even did home visits. I was pretty blown away that there was a practice of behavioral therapists half an hour from my house that I didn't even know about. I called Brad and asked him if he had heard of this group and he hadn't, so we decided maybe they were new. We try to stay pretty up to date on what's offered in our area, so we were excited to learn of this place. 

Fast forward to today. I got a call saying they had gotten the referral from Korban's dr and asked if I could bring him in this afternoon to get the ball rolling. So I said yes and rearranged my whole afternoon to be able to do this. 

They took us straight back as soon as we got there and Korban sat down and started playing on his iPad. The lady looked at him, then looked at me and said "Does he have autism?" I said "Yes ma'm he does," and she said "Oh we don't deal with autism." I very nearly blurted out "The heck you do all day?!?" Ha! A behavioral therapy group that does not see people with autism? I was floored. She could tell, because I was sitting across from her looking like this: 

so she offered to go get the number to a group in Tupelo that provides therapy for people with autism. She came back and handed me a sticky note with the info for the Autism Center of Tupelo. Which is fine, and he went there for a long time when he was little, but they only provide services up until age 8, and he's 11 so there's that. I explained that and she was shocked. Another lady came in and told me about a group with Delta State that does therapy. Again, good information, but Cleveland is 3.5 hours from my house (one way) and that would be pretty torturous every week. At this point, I'm wondering if they've ever MET anybody with autism. 

I asked if his referral form mentioned that he had autism and she said it didn't. She said "I wish I had asked you on the phone." So did I, but at at this point I was really more tickled than angry, even though it was a wasted trip. I really wanted to ask what kinds of clients they DID see, but I didn't. I know there's a lot out there besides autism, but I really had not come across any therapeutic groups that just "didn't deal with autism." The next time Korban has a meltdown out in public I think I'm just gonna yell "I don't deal with autism!" and walk away. 

I'm not trying to be negative because the ladies I met were very sweet and apologetic but it was a perplexing experience. I did call his neurologist office when we left just to let them know that it was not an appropriate referral for their autism families. Hopefully I saved some other family from a wasted trip like we had today. 

Our little trip was good though. Korban was pretty calm. He's just been having some really tough behaviors lately that we need to get a handle on. Just within the past few weeks he has decided he doesn't want any of us (except for Selah and Jet) to touch him. He's always been affectionate and all of a sudden no hugs, no kisses, I can't even rest my hand on his back without him freaking out. That makes being in public challenging because if I try to guide him at all he starts yelling and running into people trying to get away from me. We are very thankful we can tether him to Jet because that helps a lot. Selah has also been a huge help. She will hold his hand when we are out in places and she is so good with him. She also picked up on how sad I was that Korban wouldn't even give me a hug, so she went and hugged him and then came and hugged me. She said "See, Mama, I brought you a hug from Korban!" Bless her sweet heart. What would we have done without our Selah? 

In addition to the sudden sensitivity to touch, he is also going through another spell of breaking glass. Sometimes because he's angry and sometimes just because he likes to watch it shatter. Very scary! We are in the process of replacing the windows in his room with Plexiglass--they've been broken more times than I could count. Also we are still dealing with all the things we've been dealing with for years, like his skin picking, screaming fits, etc. This time last year he was SO aggressive towards me (that was when I got the black eye) so I'm thankful he hasn't been aggressive like that this year, although we still deal with it infrequently. Oddly enough, even though Selah is the only one he will currently show affection towards, she's also the only one he's been aggressive towards. He's pulled her hair and scratched her within the past couple of weeks. I hate it so bad. I would rather it be me than her. We've got a lot to work on, and I'm hoping we can get it under control better soon. 

His behavior tends to cycle, and like I mentioned earlier the spring is just a hard time of year for us. Thankfully Brad will be out for the summer soon. Last year was his first summer to be off and we spent the first part of it just staying home and working on behavior. Things got better and I could breathe easier. To say I am excited about him being home would be an understatement! Here's to "dealing with autism," y'all. :)