It was a cold January day in a small house located in Chanhassen along the Minnesota River Valley . She was dressed so pretty and we had spent so much time getting to know each other that we felt we had always known each other. I set up a scavenger hunt… notes hidden in places with clues, clues that led her from inside, to outside into the garage and finally into the upstairs of this new house I was “remodeling”…. the room where we would eventually spend our nights together as a man and wife. I’m not sure I really knew what was coming my way, in fact, I HAD NO CLUE!
She called me at work and told me she had to take the day off…again. Jess went on to explain, “I thought something was a bit off today and when I opened the kitchen drawer to get a knife, they were all gone. I’ve called the school and I am headed there now to meet the bus when he arrives” Yes, this played out one morning. How do I respond to this? What is the right way to handle a young man of over 6′ tall filling his backpack with kitchen knives and heading off to school? Not just one knife but all of them. How do I reconcile this in my life of fatherhood? He isn’t “psychotic” or “deranged” and he really doesn’t want to “hurt” anyone. So why would he do this? He isn’t truly aggressive, if you get inside his thoughts. He isn’t out to get anyone… so why? (I will answer this question later. The answer may surprise you.)
Al was a high school student in Shakopee and I was just getting to know him. He was always excited. It was as if he gained energy from chaos…. and that is opposite of my previous world where chaos was put into order, not order put into chaos. Some days were good, other days were … well, how can I put this? The most intense situations known to man…but on steroids! (Figuratively speaking, of coarse.)
Jess and I prepared to merge our very different worlds. She was living in 1200 square feet and my house was 2800 square feet plus a 20×40 garage stuffed with junk from the last 20 or so years. Fitting this all into our “new” 980 square ft home…that was just the pragmatic side of space. That was the easy part.
The first stage of our lives was simple, get married, move our stuff, arrange our home and make it all work…. Simple enough! Lets do this! Alex, Jacob and Al all get along great. That’s a blessing. Alex was a typical high school student that just wanted to get out into the world as a HS grad, enter boot camp a start his life away from dad only one month after we got married. Poof! Easy! Jacob was a bit younger and needed a bit more management by his father… Jess and Jacob hit it off from the start. This was nice to see, no conflicts, mutual respect and a likable daily routine. So by now you may be thinking,“This is a nice blog post,” or maybe you are thinking, “I should stop reading this blog.” I hope you keep reading. I am setting the scene of our typical blended family with no real personality issues.
You see, I love Al, like my own biological sons, but I wasn’t prepared for what I didn’t know. I wasn’t aware of the challenges. It was hard to learn what autism really is. Sure, read about it, learn the science behind autism, but you don’t know until you have lived it. It’s not bad, it’s not good, it’s DIFFERENT! So much different and so impossible to truly understand how different, until you have lived it.
My history is long. I’ve raised three boys. I’ve been told I have done it well, by God’s grace. I have dealt with troubled youth, Downs Syndrome, ADD, ADHD, rebellion, complacent kids and mainstream kids. I have seen nearly everything (BAD AND GOOD). As a special needs bus driver, a chaperone on field trips with special needs, Den leader, Cubmaster, Scoutmaster, Youth Group leader, prison ministry participant… the list is long in the area of “boys to men” concepts. My heart is for raising boys to become men and for men to be Godly husbands, friends and leaders.
So what can I do for this young man? I thought I had a good handle on this before we got married. I thought it would be difficult at times and rewarding at others. I thought I was prepared…. I THOUGHT! Let me take you on one short journey. Let me describe a small part of my experiences and bring you into the world of autism from my perspective.
Suppose you are having a conversation with your wife, you know, a private conversation, behind closed doors. It could be about anything. Jess and I had conversation that was about putting an addition on our house. Al overheard a few words, nothing bad, but a short snip-it of words. Why? Heightened sense of hearing? Yes. Heightened awareness of conversation? Yes. Intentional eves dropping? Yes. No big deal, right? I mean so what if Al heard a few words like “cut” or “make” or even “saw”… until it enters the mind of this young man. To him this is perhaps the most violent form of torture he can imagine… to hear a saw. But he has never even heard my saw. He never experienced this in his past. EVER! But now, for the next two minutes, that turns into hours, that turns into days, that turns into weeks, that actually turned into months. YES, MONTHS of the same question, over and over. Sometimes reworded but still the same question and comments. Things like, “Are you going to use the saw today?” perhaps 10 or 20 times in an hour, then repeat. Or, “I don’t want you to use the saw” even when there are no plans of using the saw for weeks. And then repeat every few minutes all day for weeks. Just over and over. The same question repeated within seconds or minutes but sometimes hours, if we are fortunate.
This can manifest in remarkable ways for reasons we can never know. Imagine going to work, and the guy in the next cubical plays music, now imagine its the same song all day, repeated. Now imagine its the same 10 second section of one song hundreds of times a day. Or apply this to a movie. Or something found in the yard, a small chunk of wood that has been imagined to have ancient carvings from natives, a carving so small that you would need a magnifying glass to actually see what Al can see. HEIGHTENED SENSES! IMAGINATION! CONTINUAL THOUGHT LOOPS. They have come up with scientific names for all of this, fancy names that are tossed around in the special needs community like pennies into a gumball machine.
I love our Al. I love him for so many reasons. He is funny, fun and exhausting. He is different. I have learned so much, and the more I learn, the more I realize how much I don’t know. I can’t tell you I understand it. I don’t. I can’t. But I can do something. I can change to meet Al where he cannot change. I can meet his needs and help him become the best man he can be. I can teach Al how to overcome a majority of his anxiety. I can be there for him, provide for him, buy him the things he needs, help him develop new skills… I can be a stepdad to Al.
I promised you an answer earlier. The question is, “Why is Al like this?”
The answer is more complex than you may know but to summarize this is simple.
If we were to relate Al to a computer operating system, the answer would be easily stated as follows: “Al is not a malfunctioning operating system, but rather a totally different operating system.” He is operating exactly how he is programmed to operate. Continuous loop feeds… with base computer language that may appear like this “if (a=b) {repeat}”. He finds comfort in “knowing”. He watches the same 10 second video because he can know what will happen. This is where he finds familiarity and comfort. It is where he finds compatibility and understands his world. Like I said, it’s not good. It’s not bad. It’s just different!
My journey is mine, your journey is yours, I cant know yours and you cant know mine… but together, we may be able to help each other in our journeys. My Jess is always interested in hearing about my journey and is in many ways surprised at what I say, not because its bad or good but rather because its so normal in her journey and so new & different for me.
May our God richly bless you today.