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Wednesday, June 14, 2017

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! 

Tuesday, June 6, 2017

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. 




Monday, June 5, 2017

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. 

Tuesday, May 23, 2017

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. :)

Friday, November 18, 2016

Then and Now

Korban had his monthly infusion appointment in Birmingham today. For those who don't know, Korban has primary immune deficiency and has to have a gamma globulin treatment to keep him healthy. When he was 5, we started doing IViG treatments at Children's Hospital of Alabama at Birmingam. We would go every four weeks and they would hook him up to an IV and infuse him with a treatment made from human blood that contained all the antibodies and things his body wasn't making on its own. 

The hospital is a three hour drive from our house, one way. And it usually took 4-5 hours to get started and let his medicine drip in. Definitely an all day process! And an extremely tiring one. Getting an IV is tough on pretty much any kid (and many adults!) but you add in autism and all the sensory issues that go with it and it's pretty much a nightmare. It took always took me and Brad and as many nurses as they could round him up to hold him--with him kicking and screaming-- so they could start the IV. 

But as hard as it was, it was so worth it, because for the first time either, his health was decent. He was always SO sick as a kid and we couldn't figure out why. When he was finally diagnosed with an immune deficiency at the age of 4, it all made sense. His immunologist tried to treat it with other methods, such as prophalactic antibiotics, but it just didn't work and he still stayed sick. Immunotherapy is pretty much the last straw, but it worked. We could tell such a difference in him right away. He actually felt good and we could get out and do things, which was such a blessing after being cooped up at home so much during his early years when he was sick all the time. 

So that once a month IV treatment was hard, but it changed our lives. All the nurses were so sweet and took such good care of us. They did everything they could to make it easier on Korban and were very understanding of his autism. We would always try to take him to do something fun after his infusion, in hopes that he would remember the fun things and not just the "pokes" as he called them. 

We settled into a pretty good routine over the years, but then some problems crept up. Korban's veins started getting kind of weak from all the sticks. Twice his vein collapsed mid-infusion, causing his medicine to seep into the tissues of his arm and making it swell up like a balloon. We could also see his infusion start to "wear off" over the course of the month. He would be super tired and not feel well as it got close to time for his next infusion. 

In late 2015, we discussed these issues with Korban's immunologist during his check up. She talked to us about switching from IViG to SCiG (subcutaneous immunoglobulin). This meant me and Brad would get trained on how to give Korban his treatments at home. Instead of an IV, we would use tiny little needles that go right underneath the skin on his belly. It hooks up to an infusion pump and his medicine goes in that route over the course of a couple of hours. Also, the treatments are given every week instead of every month, which generally keeps the patient's levels more stable and prevents the "wearing off" effect. 

They were actually starting a research study on a particular brand of SCiG medicication, and we were able to get in on that. We started it in February of this year and are so thankful that Korban has done amazingly well with it! We still have to go to Birmingham once a month for them to draw his blood and check his immune levels. This is only for as long as we are in the research study; he won't need check-ups that often once the study is over. 

I was really worried that the blood draws would be traumatic for him, but they haven't been.  The nurse over the research study did an excellent job earning Korban's trust. We also use the same numbing cream that we put on Korban's belly before his SCiG treatment to numb his arm for the blood draw.  That helps a lot, and of course Jet does too. 

We had Korban's monthly check-up in Birmingham today and all went well, as far as Korban goes. His levels are great. He feels good and is tolerating his treatments very well.  It was ME that was struggling today. I managed to leave his infusion pump at home. We didn't realize it until we were 45 minutes out of Birmingam. So we had to go back and get it, which of course made us quite late. I felt bad for messing up the nurses' schedule at the hospital. Korban didn't understand the change in routine and had a meltdown. Brad and I were ill. But we made it. My mom went over our house, grabbed the pump, and met us in AL with it, which saved so much time and was a huge help. I was shown a lot of grace by the hospital staff. So things weren't as bad as my mind tried telling me this morning. 

Bizarrely, we had a fire drill in the midst of Korban's treatment. The alarm was SO loud and there were flashing lights but Korban didn't fall apart. Jet did awesome. That's a whole lot for a dog to take in, but he handled it like a real champ. We had to go stand outside on the sidewalk until the drill was over. We walked outside and Korban yelled "Oh no! I forgot my shoes!" We took off like it was a real fire, which I suppose is what you're supposed to do during a drill. When I looked down and saw Korban standing out on the sidewalk like this 
I got completely cracked up. All I could think about was the viral video of Sweet Brown talking about the fire where she said "I didn't get my shoes or nothin'!" And her most famous line "Ain't nobody got time for that!" I love that woman! 

Calm boys waiting to go back in the hospital. The thing hanging around Korban's neck is his infusion pump. I sure was glad we weren't dragging an IV pole! 

So all that drama today, but it all worked out and I wished that I hadn't have gotten so upset over leaving the pump at home. I mean, I wish I hadn't have left it at all, but mistakes are going to happen and it's usually our response to them that matters the most. I didn't do so well today, but I've got a lot to think about for next time. 

The funny part is, I looked at Timehop this morning and realized that Korban's very first IViG treatment was five years ago today. It is amazing to look back and see how far we've come. 

Then...
Asleep in his daddy's arms after fighting the IV so hard. Look how little he was! 

And now...
This was after his treatment today. He's carrying the cooler with his next three weeks worth of treatments in it, slurping on a sucker, and hanging on to his beloved Jet. All his health issues have been challenging, but I'm so thankful he's doing so well and for all the progress we've made. It's amazing to see him grow and change, and I know I am one blessed mama! We appreciate everyone who has loved on us, encouraged us, and prayed for us through the years. Please keep it up! Looking forward with hope to a bright future for our sweet boy. 


Tuesday, June 28, 2016

Dear Sir

I think I may have had one of those out of body experiences today. Something happened and it was like I could see myself still sitting there but in my head I was screaming "Is this really happening?" Here's how it went down: A few months ago a dear family friend approached me and Brad with an idea that really resonated with us. She has a heart for people with special needs and a lot of talent to offer. She had a plan for how we could merge our collective talents and do something pretty cool. No more details on that right now; I'll just say that it was an idea that was big and good. So big and good in fact, that we felt we needed to get some outside expertise on it. So we set up a meeting and went to seek advice from a professional. My friend even took a vacation day and drove several hours to meet me for this--that's how much she believes in what we want to do. We talked excitedly on the way to the meeting and we were so pumped up. 

We sat down and made our introductions. We laid out our backgrounds, our credentials, and our passion. And then we waited for words of wisdom. What happened, well it was the opposite of wisdom. 

Almost as if he were telling us a great confidence, our "professional" told us that we might want to target those in poverty stricken areas, since that's where autism usually arises. We were taken aback, as this is a completely erroneous idea. Autism occurs in all countries, states, races, and it most certainly knows no socioeconomic boundaries. I tried to explain this and was told that these things happen in poverty stricken areas because of inbreeding. INBREEDING!!! Y'all, I can't even. I've heard some pretty whack causes of autism but that takes the cake. Needless to say, my friend and I were shocked. We tried to educate, we really did. I'm not sure any of it got through, but we both tried. We were gracious, because we are gracious people. And also because Brad had the kids and we didn't want to have to call him for bail money. 

You know how sometimes someone just says something so completely out of left field that you aren't even sure how to respond and later you think of all the things you wish you had said but didn't? That's kind of what happened to us. So just to get this off my chest, here it goes:

Dear Sir,

We came to you with a great idea and a whole lot of passion. You didn't provide much of the help we were seeking, but you certainly reminded us that we are passionate for a reason. We were just talking on the way to your office that we (perhaps naively) believed the word is pretty well out about autism awareness. You proved that there are still people around us that are so very unaware, whether we realized it or not. You reminded us that a person can be very well educated yet still remain ignorant. Autism is a complex neurological disorder that may be poorly understood, but I feel confident in saying the medical community at least agrees that it isn't caused by being poor or inbreeding. There is strong evidence of a genetic cause for many cases of autism; however you would do well to learn that a genetic basis does not equal parents who are related to each other. I wish you could meet the geneticist who works with my family. He's a true example of a professional; brilliant AND compassionate. 

Autism is characterized by a lack of social skills. But Sir, after you informed us that back when you were in school people referred to people with autism as "idiots" and made your whole spiel about the poverty and inbreeding AFTER I had told you that I was the proud mother of a son with autism illustrates the fact that they are not the only ones with a lack of social skills. You may have meant to make me feel stupid, but you didn't. I'm in charge of how I feel, and you don't have my permission to make me feel stupid. 

I do feel sad to know that people like you still exist. People that don't see my son as an amazing individual. People that are part of the problems in the world and not part of the solutions. I told you today that until it happens to you, most people don't care about it. That's a sad statement, but I've found it to be true. All your money, your degrees, and the letters after your name won't protect you from having a grandchild with autism. However, I really hope that doesn't happen to you. Not because I would feel sorry for you having to deal with that, but because I would feel sorry for the kid having to deal with YOU. 

Regards, 
Melissa Essary

P.S.

My family and I went on to have a great evening. Here I am enjoying a night out with my awesome son with autism, his precious service dog, my lovely daughter, and my husband, who is not a blood relative. 

Friday, June 24, 2016

True Stories From the Back of the Struggle Bus

I haven't written in a long time because honestly things have been quite hard and when I need to write the most I want to do it the least, even though I always feel better afterwards. It's a hard balance for me because I truly think that we help each other by being authentic and just keeping it real, but I fear coming across as negative and I don't want that. With that being said, here it goes. 

A couple of months ago we noticed some alarming changes with Korban. There was an increase in his already plenty high anxiety, which always seems to result in an increase in aggression. His skin-picking, which had been eradicated well over a year ago, suddenly returned with a vengeance. He also started pulling his hair and biting himself again. 



That's what his skin looks like after picking. It's awful. We've tried all sorts of sensory toys, redirection, rewards and medication to get him to stop and this go around, nothing has worked. 

There was also a regression with schoolwork as he pretty much couldn't focus at all. He stated having meltdowns and screaming fits with no warning that we could see. Usually we at least realize when something triggers him, and even if we couldn't head it off completely we could brace ourselves a little.  Now they seem to come out of nowhere, both at home and in public. This has really put a damper on being able to get out and do things as a family. Everyone who knows us knows how important that is to us, and it really hurt to have all of that suddenly snatched away. 

Of course, we started scrambling to his doctors and therapists, trying to find an answer and get some relief for him. His neurologist tried adjusting his meds. We take that slowly and carefully and are just now finally starting to see some positive results but only by a slim margin. He already has a pretty intense therapy regiment, and the therapist his neurologist recommended that he see  we've already been seeing for years and love. 

We talked to his neurologist about some physical changes we had noticed and she told us that he is starting puberty and that's likely to blame for his personality changes. She said there wasn't much we could do about that besides ride it out. I gotta tell you, I was in no way prepared for that. He's 10, and mentally seems much younger. I think of him as still my baby and figured we at least had a few more years before we had to worry about any of that. She said it wasn't abnormally early and that it takes several years to get through. 

Me when getting Korban's autism diagnosis: "Well, at least we know what's going on. How do we help him?" 
Me when getting his primary immune deficiency diagnosis: "Oh there's a treatment for that? Thank God! How soon can we start?"
Me being told he has started puberty: "We will all surely die." 

Seriously though. I've kept a pretty even keel through all the other stuff, but the one thing that happens to everybody I think is going to kill us all. In all fairness, puberty is hard no matter who you are. But puberty and autism sure don't mix. If there's any positive to be found, at least if he started earlier maybe we can be done earlier, before he gets much stronger and bigger??? 

The hardest part has been the sudden and intense aggression, which has mostly been directed towards me. I'm very thankful it has not been directed towards Selah but sad that she has witnessed a lot of his aggression towards me. And I really don't enjoy being a punching bag. I've been hit so much here lately I get nervous when people walk up behind me and start trying to turn and move away from them. It's so odd to me that my brain has responded like that. I had pretty much zero experience with anything like that before Korban. He's the only person that has ever hit me but it's thrown me into some kind of survival mode and I find myself flinching away even when there is no danger present. I guess my mind is making up for all the times when I haven't seen it coming. 

Example: Last month Brad and I made plans to meet a friend for dinner in Corinth. We arranged for my mom to keep Selah and Brad's parents to keep Korban. He is only rarely aggressive with anyone besides me, but we split them up just in case and because he does so much better with one on one attention. We were gone for a short amount of time, and then I went to pick Korban up. They bragged on how good he had been. No behaviors while I was gone. He seemed fine, we said our goodbyes and went to load up in the van. I will say at this point that Jet had started acting odd right after I got there. He started whining and pacing. He got up beside me on the couch and pressed against me. He does that sometimes when it's about to storm, and I even went outside to check for rain but it was perfectly clear. I thought it was odd, but loaded him in the van and then turned to buckle Korban in. When I leaned over him he kicked me in the stomach and then punched me right in the face. It happened in a split second and I had no idea that the "storm" Jet was trying to warn me about was not outside, but inside. 


And that's what I looked like the next day. Lovely shiner! So yeah, I'm a bit jumpy. 


We've worked really hard on making Korban's room sensory friendly so that he would have a safe place to decompress. The large blue thing is a crash pad and it's awesome. He can jump and flop on it. He likes to lay on it and have Jet lay with him when he's stressed. The green thing with rollers is called a steamroller. He climbs through the two sets of rollers and it applies deep pressure to his whole body. It's modeled after Temple Grandin's "squeeze machine."  The red punching bag is a recent addition. Found it for $18 at Goodwill. What a find it was! If we are lucky enough to tell when Korban's getting angry or upset, we can get him to his room and let him put on his boxing gloves and punch the mess out of that thing. Better it than me! He understands that it's ok to hit the punching bag but NOT people. He's just sometimes so impulsive that he can't stop himself in time. He feels badly about it afterwards. We are hoping these changes to his environment will help him remember to use his coping skills and calm down with appropriate methods. 

I could say lots more, but this post is plenty long so I'm just gonna to wrap it up with some FAQ: 

Q: Does Jet help? 
A: Absolutely. He keeps Korban from bolting when we are out places, he applies deep pressure to Korban to help calm him, he enables him to sleep in his own bed in his own room. All those things are huge. As I mentioned in the story I told earlier, he clearly feels when Korban is getting upset. Is he able to prevent that? No, not always. But I've been Korban's mom for 10 years now and I sure can't do it all the time so of course I don't expect a service dog we've had for 6 months to be able to do what his parents can't. 

Q: Have you tried...
A: Essentials oils? Yes. They smell good. Doesn't change his behavior but at least be smells good while he acts bad. 

Biomedical treatment? Yes, for years. Limited results. Still working at it--have an order of probiotics and high dose vitamins headed to my house right now as a matter of fact. 

Pharmaceuticals? Yep. Don't have a thing against prescription meds and I've mentioned many times that we use them. Do I worry about side effects? Of course. I worry about everything! That's why we stay on the lowest dose possible and keep regular appointments with his doctors. But his anxiety is fierce, and in my mind it would be cruel to not try whatever methods were available to help him with that. Meds don't bother me and I don't feel guilty about giving them. It's sometimes hard to find what works, but when we do come across something that helps him feel better it's worth it. 

Therapy? Yes. He currently gets AutPlay (autism specific play therapy), ABA (applied behavioral analysis) speech therapy, occupational therapy, and physical therapy on a weekly basis. 

Cannabis oil? No, but only because it isn't legal in Mississippi. If it were and we had a dr to prescribe and monitor, I'd sure give it a go. 

Special diets? Yes. Helps his stomach issues but not behavior so much. 


Here he is eating raw veggies dipped in Wholly Guacamole. Took us a lot of years to get to this point with his eating and I'm
super thankful. 

Q: Are all people with autism aggressive?
A: Of course not. I just happen to have one that reacts aggressively when he is anxious or upset, and since that's what I know that's what I talk about. However, I do know many other people with autism (both children and adults) and the vast majority that I've met are quite meek and gentle. 

Q: Don't you just wish he was "cured?" 
A: Actually, no. That's not my ultimate goal with all of his therapies, medication, etc. I want him healthy and happy, we much as possible anyways. Autism is a part of who he is. He's funny and cute and quirky and I would never seek to take those things away from him 
I just want him to learn coping skills so that when he gets overwhelmed he can ask for help or self soothe rather than tearing his own skin off or attacking me. 

Q: What about Selah? 
A: Obviously she's aware of all that is going on. She loves her brother so much and hates it when he struggles. Brad and I have always tried to be open and honest with her and explain things in way that she understands without it being too much for her. We've made a big effort to do things one on one with her here lately, since Korban hasn't felt up to getting out much. At home we have activities they can enjoy together, like playing outside, which they both love. 



We are fortunate to have grandparents close by that are glad to have Selah over for a little break when things are rough at home. Also, we have her in play therapy so that she can work through her anxieties and so that we can make sure we aren't missing anything that's going on with her. 

Q: What's your biggest fear?
A: That all this stuff won't be enough to help my kids. 

I'll just leave this here...