Follow by Email

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. 

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. 

Melissa Essary


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...

Wednesday, March 23, 2016

Kicking Off Autism Awareness

Last year I wrote a blog about attending the Light It Up Blue pep rally at Hernando High School and their Bolt for Blue 5k. The students and staff at Hernando High are an amazing group of people and we really enjoyed that time. They helped us raise the money to get our sweet Jet and it really touched us in a way that's hard to describe.

To read the blog post about last year's Bolt For Blue click here

We took a lot away from that event, and Brad's brain went into overdrive which is always interesting. Ha! He's a planner and a doer, and he appreciated what they did so much he wanted to be able to bring something similar to our community. He put his head together with some coworkers that have kiddos on the autism spectrum as well, and Reconnect 4 Autism was born. We kicked off autism awareness month with Bolt for Blue and closed it out with the Reconnect 4 Autism color run. April 2015 was a very big month for us! 

The funds raised from the color run were used to start sensory friendly family outings in our community.  This is the only fundraiser done by the group.  We've done monthly sensory movies (lights up, sound down, kids free to move about, etc), had a cookout, a pool party, playtime on jumpers, family get-togethers, costume party, and had a blast doing it all. It's been great being with people that understand where we are coming from and I love seeing families get to come and participate in events that they might not normally be able to do. Planning for the second annual color run is in full swing, and we are all looking forward to a year of more sensory friendly family activities. Please plan to join us if you can! 

What the people in Hernando did for our family meant a lot to us and will be with us forever.  They played a big role in Korban getting his service dog, Jet. This was our way of paying it forward the best way we could. I think of it like the ripple effect; like when you toss a stone out into water and see how far the ripples radiate out from it. So let's cast those stones in a good way and see what we can do to bring some positivity to our world!  Autism awareness turning into acceptance from one side of Mississippi to the other and forever connected.

For more information about Bolt for Blue, or to register for the run go here:
Light it up Blue Hernando Facebook Group
Bolt for Blue 5K Registration

Check out Reconnect 4 Autism here and sign up for the second annual color run here:
Reconnect4Autism Facebook Page
Reconnect4Autism Website
Reconnect4Autism Color Run Registration


Thursday, March 17, 2016

Changes Ahead!

We have been doing Korban's IViG infusions in Birmingham for 4+ years now. He was diagnosed with a primary immune deficiency when he was 4 and started the infusions when he was 5 after prophylactic antibiotics and other treatment measures didn't help. 

Driving to Birmingham every four weeks to hold him down for an IV hasn't been easy but it's kept him so much healthier than before, so it's definitely been worth it. We've made the best of it and have been so thankful that treatment is available and that we were able to get it. 

We've been worried about him for a little while because he tires out so easily and we can see the infusion "wearing off" at the end of the month. He gets really pronounced dark circles under his eyes and doesn't want to do much at all. Our family, his teacher, and all his therapists can tell when it's time for his infusion.

 We had a checkup with his immunologist a couple of months ago, and we told her what had been going on. We asked if his dose needed to be increased. He has grown an awful lot! (Nearly as tall as me and weighs 94 lbs. Whoa!) She explained to us that a clinical study was becoming available and thought it might be a good fit for Korban. Rather than getting his infusion once a month he would get a weekly treatment. Instead of having to get an IV, he would get a subcutaneous infusion. That means they would numb his skin with EMLA cream and he would have several small butterfly needles inserted under his skin on his belly and the medicine would go in that way. The weekly treatments will keep his levels higher and we shouldn't see such a slump at the end of the month. Also, Brad and I can get trained on this and start doing it AT HOME!  So we met with the nurse heading up the trial and did a bunch of bloodwork and tests on Korban and a lot of paperwork these past 2 months.  Thankfully Korban was accepted for the clinical trial!!! 

His first subcutaneous treatment will be  Friday. We go once a week for a month, which will be hard, but after that we should be able to start doing them at home and we will only have to check in at UAB every few months. We have worked closely with the nurse that is over this clinical trial for the past couple of months and are excited to get going. 

We've talked to Korban about it and he seems to understand and be okay with the change. He's pretty excited about the "butterfly needles" as opposed to an IV. Although I have to say, he's done better with his IV the past few months than he's ever done! 

We think Jet has had a lot to do with that! He's a big comfort to Korban. (And also a good foot prop! Lol) 

So a couple of concerns/prayer requests:
1) Like I said, Korban seems to be ready for this and we've done our best to prepare him, but despite our best efforts we never know what his reaction to a certain situation will be until we are actually in it. The goal is for this to be LESS stressful for him, so please pray for a smooth transition. 

2) If you had asked me 10 years ago if I thought I would ever be able to put a needle in somebody and give them any kind of medical treatment, my answer would've been a resounding "NO!" I mean, I am the one who fainted straight into the floor at my OB's office over a simple blood draw when I was pregnant with Korban. So very embarrassing! I haven't done very well with blood and related things in the past, but that was me before. I also didn't do well with frogs and lizards and such as that, but I sure have come a long way. I feel good about this, and I want to be able to help Korban       We never know what we are strong enough to do until we actually need to do it, so I've learned not to say "I could never..." That being said, I am a bit nervous so please pray for calmness and steadiness for me and Brad both. He's typically very steadfast in such matters and I'm so grateful for that character trait in him! But he won't always be there when Korban needs it done so I need to be proficient in it. Please pray for steady nerves, steady hands, and NO FAINTING! I'm pretty sure I'm past that. I'm glad spring is coming though. I may need to go out and catch some frogs and lizards just to remind myself what a tough mama I've become. ;) 

Thursday, February 18, 2016

10 Signs You're A Service Dog Mama

1) Your daughter gets upset because you have dog treats in your purse but no actual human snacks. 

2) "OOH LOOK A DOGGY!" is your cue to keep your eyes focused straight ahead and walk faster. 
3) You find yourself giving your kids one word commands such as "Here," and "Sit!"

4) After doing #3, you always ponder the fact that your dog listens better than your kids and are just grateful that someone minds. 

5) You are continually perplexed at the number of people that think this does not apply to them: 

6) But you are extremely grateful for people that understand this and have good service dog etiquette. 

7) Can answer questions about why we have a service dog, what he does, how we got him, and the Americans With Disabilities Act while grocery shopping, sitting in waiting rooms, trying to use a public restroom, etc. Depending on the day, sometimes the answers are more coherent than others! 

8) Chose your parking spots based on the nearest available bush or patch of grass. 

9) Think to yourself if you had known your child would actually sleep in his own bed once he got his dog, you might've actually stolen one several years back. (Not really, but oh my word. I kiss Jet goodnight and pray for him just like I do Korban when I put them to bed every night.) 

10) You had no idea you could love a dog so much. I just thought I liked animals before. Jet is family. 💙