Where’s the Kenai story?

First, an apology.

Many of my friends and even people I don’t know (who would likely be my friends) are expecting me to continue my account of my diverted flight to Kenai, Alaska. This post isn’t it. Sorry.

I’ve got reasons, of course. Nobody likes to hear excuses, which I can understand and respect. Frankly, I would love to sew up the loose ends of my story. I just haven’t had the time yet.

I say I haven’t had the time. Yeah, right, you say. Why not? Let me tell you.

His name is Alex. For those of you not totally familiar, Alex is my now 7-year-old son. Alex has autism. He is non-verbal. He communicates with others in very basic ways mostly. Pointing at things, or better yet literally taking your hand and making you come to the pantry with him for a snack, or the refrigerator for a cold drink or outside for a walk in the stroller. He will whine in largely indecipherable gibberish to reinforce his desires.

When his needs are not met, he will strike himself with his fists. Or he will lean forward or to the side and attempt to smash his head against the wall, or door or table. It must hurt him, too, because sometimes he will put his hand or his arm out and try to cushion the blow. But not always. In a fit of irrational possession, he’s all out rammed his head into anything hard. It’s sickening to witness. His mom and I have become experts at shoving our hands between his skull and whatever he’s trying to collide with. As he grows bigger and stronger, sometimes it hurts us, too.

Sometimes these needs aren’t really needs at all—wants, actually. We know because he can be “re-directed”. That means with some gentle but firm guidance, he can be steered to do something else. When this doesn’t work, Alex occasionally wears what looks like a football helmet for his own safety. It follows him pretty much wherever he goes. If he’s got it on in public, which is rare, it is a fair guess that we, too, have reached our wits end with his self-injury and feel like ramming our heads into something immobile.

Since about a year ago, Alex has been learning to use a special app on his iPad. Essentially, it is a program that uses pictures of things he might want to do, or to eat, or to see, or even a picture of how he might feel—a stick figure holding his tummy while grimacing, when pressed states “my tummy hurts” for example. This is communication for Alex.

He doesn’t use it all the time, though. It doesn’t yet have an appropriate carrying case that allows him to tote it everywhere, so there are limitations where it gets used. It is pretty sophisticated, showing images of many specific things, places, actions or emotions that all of us are well familiar. Alas, Alex does not use it consistently. The old cliché about leading a horse to water, but being unable to make him drink applies. Endless modeling and repetition in the ‘doing’ of things via iPad are well-established parts of our lives. “Alex, use your iPad” is an ever-present phrase in Alex’s life.

I bring up the whole “Alex communicating” bit because it seems to be the trigger of much of his self-abuse. Imagine how pissed off you would feel if you were unable to tell others what you needed, or how you felt. I equate it to being in a country so foreign that even most rudimentary nonverbal sign language is indecipherable to the locals. How would you get food? What would you do to keep yourself occupied? What would happen if you didn’t feel well? Or felt scared? I’d go pretty much batshit crazy if that was my life, too. Head, meet wall.

It is the hypothesis of myself, my wife, all of Alex’s teachers and therapists that the root of Alex’s self abuse is frustration with being unable to communicate. But that’s just part of the explanation, I think. Recall that many people with autism do not handle “transitions” well. That is, changes in their environment. Breakfast ready when he sits down at the table, for example. Or a school bus waiting for him on a weekday when he walks out of the house. Seemingly innocuous little deviations from what his ‘normal’ is, like strawberry yogurt for a snack instead of cinnamon applesauce or staying inside instead of going for a walk because it’s raining can make him melt down in a puddle of fist-flying fury.

Even a 10 minute car ride to grandpa’s house, a favorite destination for Alex, can be grueling because every time I depress the brake pedal to slow or stop the car because of traffic or a stop sign or whatever—a cry of frustration and a thrown fist will result, all due to NOT BEING AT GRANDPA’S YET.

When I am not feeling overwhelmed and halfway expecting it, it actually is kinda funny. Just the apparent connection between the brake pedal of my car and Alex’s transition overload button. Alex can see where we are, what streets we are on. And just like us, Alex can feel the vehicle he is riding in slow or stop—or speed up. Those senses work just fine, thanks.

A simple “Alex, we’re just not at grandpa’s yet. We have to stop for this red light. Really, we have to” does nothing to placate that volcano of discord that erupts with such rage within him.

Transitions suck right now.

They weren’t always this bad. In conjunction with the continual oversight of a psychiatrist, Alex has been on a raft of different medications, all in the hopes of calming him, or allowing him to sleep better, or to focus. Some have worked, some obviously have not. And with still others, it takes a while to see if the new script actually does anything. There’s a period here where, according to his doctors, the medication has to be given time to become effective.

The month of May (and now continuing into June) we strategized would be a good month to switch Alex from not just one but two different medications. Alex would be on a steady routine of school days, bus rides, ABA therapy sessions and weekends at home with his big brother Drew, Kat and I. We would have the ability to closely monitor him for changes to his behavior. We hoped for the best.

But it hasn’t worked out well. His sleep cycle was the first casualty. After a week of a new medication for this, we went back to the old one. Still works, thank God.  We need our sleep, our precious sleep.

The biggie, however, is his daytime behavioral medication, Resperdal. This drug is used to curb impulsivity and focus attention in people with autism. Alex had been on Resperdal for over 3 ½ years. During that time, he has responded mostly well to the drug. However, a side effect of Resperdal is increased appetite. Alex has definitely increased his appetite while on Resperdal. To the point where he weighs 10 pounds more than Drew, even though he is 19 months younger. Being a chubby 6 year old is okay—cute even. But for obvious reasons neither his mom nor I wanted Alex to grow into an obese adult.

This wasn’t the only reason we wished to stop the Resperdal. For the past year or so, Alex’s dosage had been increased to the point where he was practically getting what an adult would get. That’s scary to me. Alex weighs 76 pounds.

He’s also occasionally overtaken with what I would describe as waves of aggression. Punches thrown back at himself in frustration are sucky, for sure. But when he tries to hit a teacher, or us, or worse yet, his brother or a classmate—that’s when we have to take action. It absolutely kills me to think my son has hurt anyone else on purpose.

Yeah, we don’t know if it was on purpose or not. It just looks like it was. “Do something about it!” cried our brains.

So…here we go with a med change. A medicine called “Fanapt” was gradually added to Alex’s yogurt or ice cream while the Resperdal was faded out.

Result? Less rage, more impulsivity. Less appetite, more ‘manic’ episodes where Alex will literally tear through the house laughing. If you’ve ever heard Alex laugh, you’d think this would be a pretty cool result, and in one way it is. But when he dumps a glass of apple juice on the floor or scratches his brother out of the blue, then runs away cackling, this is not a good occurrence.

And that’s where we stand today. Alex’s psychiatrist allowed us to increase the Fanapt a small amount if we needed to, but to date it has not made a difference yet. He’s still hurting himself. He seems less interested in his work and self care needs like using the toilet. He’s still lashing out at others, but this time accompanied by laughter. There’s nothing about this that is funny.

What would you do if you were Alex’s parents?

I ask that, because sometimes I wonder if we are doing enough. All I know is that when we are directly with Alex, our ‘helicopter parenting’ skills have to be even tighter. This is exhausting. Kat and I become crabby and irritable with each other and our kids. Our stress meter has pegged, then failed due to overload. Other than another adjustment of medication (which I absolutely loathe, but I guess loathe less than Alex doing what he’s presently doing—or not doing), we’ve got few other options.  I’m all ears here.

To be honest, there’s a side of me that wishes I could devote every waking minute of my life to Alex and his unique needs. But that’s not fair to Kat, or to Drew. Or to my friends. Don’t forget about my full time job, either. It’s what pays the mortgage, and the $19 packages of diapers Alex still wears.

I’m writing this in the same environment I wrote my first 4 installments of my Kenai story—in a hotel room during one of my layovers. It’s cathartic, but not easy. Because sometimes when I’m on layover, all I want to do is rest. Especially since May 1^st, when we began weaning Alex off of Resperdal.

So, there’s my excuse. Trust me, it’s worth reading, this Kenai story–when I get around to finishing it. But you’ll have to wait a while as I shore up things at home.  Thanks.