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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...