My oldest son, Jackson, turns 11 this week. Another year passes and I wonder, “Where on earth did these 11 years go?”
And I can’t write really anything about my son in good conscience without crediting his mother, Megan, for how she’s raised him. He’s always been a wonderful little boy but I guess I have to get more comfortable saying, “He’s a wonderful big boy.”
Jackson was diagnosed with autism around 3 years of age. It would be foolish of me to look at his attributes and mislead you by saying that anyone with autism or on the autism spectrum is exactly like him. The adage within the ASD (autism spectrum disorder) community is that: When you’ve met someone with autism, you’ve met one person with autism. The degrees are very different and no two individuals with autism will be identical.
That aside, to my fellow parents of children or adults with autism, you will probably understand and nod your head in agreement with much of what you’ll read below.
Specifically, in Jackson’s case, he is high functioning, he has low verbal skills and is most challenged by reading and reading comprehension. He has no mental retardation.
Like many people, I had no clear knowledge of ASD before Jackson was diagnosed with it. Most of what I knew at that point had been reasonably demonstrated by Dustin Hoffman in the movie Rain Man.
In tribute to my big boy, here are 11 ways that loving someone with autism can make you a better human being.
- You Learn Tolerance. It’s easy to attempt to put things into nice pretty boxes in life. This is black, this is white, this is straight, this is crooked. With autism, it’s never really that easy. Things go left when you think they should go right. Things falls apart when they seem so well put together. Once upon a time, I would have been one of those people who would carelessly use the term “retarded” to describe something that was “silly”, “dumb” or “unorthodox.” How wrong I was. When you love someone with autism you learn how sensitive and inflammatory of a word “retarded” can be. It makes it seem that something is “less than” which is far from the truth. The term within the autism community is more accurately put “Different Not Less.” Different is accurate but if Jackson has taught me nothing else, it’s that in no way, shape or form is he less of anything. He is more than I’ll ever be. And while I was fortunate to be raised by parents who taught me to be tolerant of all religions, all sexual preferences and all cultures and creeds, Jackson taught me how to be tolerant of all people in general. We all have our respective battles, neurotypical or not, and those battles deserve their place and their recognition.
- You Learn Patience. My mother will be the first to tell you that I do not have patience in spades. Maybe that was credit to being an only child and basically getting what I wanted when I wanted it. I remember vividly my mother saying “Patience is a virtue.” It would take me decades of life to understand this. While I do believe I exhibit far more patience at this stage of life, I credit the last 11 years with Jackson heavily for helping me with that. Jackson is almost oblivious to time. So, what might be a rush and a push to get things done on my time schedule, Jackson could care less. As I’ve been known to say: It’s Jackson’s world, we’re just passing through. There are certain things that Jax does efficiently but he mostly is a very laid back and chill personality. It’s forced me to ease up a lot and let him do things at his pace. When you love someone with autism, you learn to breathe differently, take a step back and let things happen of their own accord and not always forcing them. Patience is also something that would come in handy with the next attribute.
- You Gain A Different Meaning Of Progress. One of our first clues that Jackson had challenges which needed diagnosis was when we realized he wasn’t speaking as early as other children. Once the diagnosis came into play, it all made sense. At 11 years of age, most of Jackson’s speech comes from “scripting.” In other words, if he hears a line from a song or from a movie, he’ll repeat it. Sometimes, he’ll repeat it over and over again (this is often referred to as “looping.”) While I cannot speak for his mother in this regard, I will tell you that in all of his life, I have only ever heard Jackson speak a full sentence that was not directly from a movie, video or song one time. That sentence went like this: “Dad?” “Yes, Jax?” “Can I have a drink of water?” My heart jumped. I almost started crying. “Buddy, of course you can. You can have anything you like if you speak like that.” It may sound silly to some people. Jackson might have been 9 or 10 when that happened. I’m sure most people wish their three year old wouldn’t talk as much as they do. Not me. The thought of holding a conversation with Jackson gets me all emotional. It just doesn’t happen. Most of his responses are monosyllabic in nature. You ask a close-ended question, you get a short one or two word response. That’s how it works. When you love someone with autism, you learn that progress means different things to different people. This has been a tremendously valuable lesson to learn as I have owned RevFit. You celebrate the little things. You give them proper importance. They all count.
- You Gain A Different Meaning Of Happiness. I am blessed in this regard. I have not one, but two sons, who I can say exude happiness. As Jackson was my first born, he taught me that happiness can often come just from being lost in yourself. Sometimes, Jackson will just start giggling for no reason. He may not be watching anything on TV or the computer. He may not be playing on his iPad. He just starts giggling. It makes me wonder “What’s going through that mind of his?” And of course, I have to ask “What’s so funny, Jax?” I never get a response to that. He usually just giggles some more. I’m okay with that. When you love someone with autism, you learn that entertainment and happiness don’t have to come from an obvious place. It can simply exist. I’ll reference this in a point later in this post but if autism has done nothing else, it has almost insulated Jackson from the opinions and feedback of others. So, if he’s going to be happy, nothing will stand in his way. I’d say that sounds like a really magical place to be.
- You’re Reminded Of The Power Of Song. Jackson takes after his Dad. I was never much of an athlete but I have always been deeply connected to music. Jackson has almost no athletic prowess but music is something he has always been drawn to. Despite his mother’s appropriate attempts to get him involved in different sports, he just never really had the interest. But Jackson has always loved singing. So, the big shift happened when, at the encouragement of many of us in the family, Megan got Jackson enrolled in piano and voice lessons. It was a game changer. When you love someone with autism, you learn that there tends to be an area where your loved one really thrives. For Jackson, music has been one of those pivotal areas. I don’t want to say much more about that but I will encourage you to read this post I made last year that highlights it better than anything. Grab your tissue and turn up the volume.
- You’re Reminded Of The Joy Of Dance. We started taking Jackson to the movies pretty regularly around the age of 5. Even back then, he had this interesting little thing he would do. He would watch the entire movie and then when the movie would end and the end credits would roll, he would burst out of his seat and start dancing. Here we are all these years later and it’s not changed a bit (well, his dance moves have.) When we take him to any of the handful of animated movies that come out in a given year, he’ll bolt out of his seat and start dancing all the way through the end credits. Sometimes, he’ll stay right in front of his seat and sometimes he’ll march all the way down to the front of the screen and dance to his little heart’s content. The dancing won’t stop until the credits end. At first, it was a little bit alarming. I didn’t want him to attract unwanted attention. As time went on, you saw his whole body light up when he would do it. Jackson could care less if you’re watching him. He’ll dance until he’s good and ready to stop. When you love someone with autism, you find that certain things give them endless amounts of joy. For Jax, his choreography during the movie’s end credits certainly qualify. Even when we ultimately buy the DVD of the same movie, the same thing applies in the living room. Jackson will dance away in front of the TV until the movie resets itself to the menu screen.
- You Learn To Communicate Better. When you have a child who speaks as little as Jackson does, communication takes on a whole new meaning. You have to learn to read between the lines. When he’s sad or angry, we don’t always know the true reason. He obviously can’t find the words to express it. This is where the monosyllabic responses or otherwise short responses become a challenge. Sometimes, we just have to get him calmed down and assume it’s all nothing serious. When you love someone with autism, you learn that communication can come from many different places. Sometimes, all you have to work with is facial expressions. Where speech fails the relationship, we have to step outside of conventional dialogue and probe deeper to get a problem solved.
- You Learn The Importance Of Independence. Jackson has always been uniquely self-sufficient. He learned early on how to get what he wanted using as few words as possible since they likely weren’t going to form anyway. As a result, much of his strength as an individual comes from what he is able to do without the help of others. While this can be somewhat frustrating when you take into consideration the things a parent might teach you that you can work on together, it has actually helped him form more of his own identity. When you love someone with autism, you learn that not everything that constitutes progress happens as part of a parent-child team. Jackson tends to do most of his great work in play or in his respective growth with activities that require only his own input. The drawback of course is not appreciating the value of having the help of others. The advantage is learning the skills you need to advance all by yourself.
- You Savor Every Word. As I mentioned a few moments ago with regard to communication, Jackson can go spans of time in complete silence. He might be engaged in a task that has his full attention or he hasn’t found the need to communicate in an audible fashion. But for me, any word that comes out of his mouth is a welcome one. If you’re reading this, chances are you are neurotypical and not on the spectrum. It’s amazing how many words we waste that never really communicate what we want effectively to begin with. When you love someone with autism, whether you love someone with high verbal skills, low or none at all you’re keenly aware of this. But those of you included in that statement like myself, know that every word is a gift.
- You Understand The Importance Of Touch. If you ask Jackson to give someone a hug, he generally will. He’s a loving guy. But he won’t initiate that interaction. Many times, when he goes towards someone’s arms (even a family member), he’ll turn himself around so that his back is turned to them and he’s not embracing in return. So, it’s always especially sweet when he does initiate the point of contact. Sometimes, we’ll be at a restaurant and he’ll just lay his head into my arm or my lap, pull my arm around him and just want to cuddle. I’ll stroke his hair, rub his back or what not just to give him the affection he may need at that time. Much like a weighted blanket can be a comfort for many individuals on the spectrum, Jackson won’t always ask for the contact but you can tell it’s what he needs at that moment. When you love someone with autism, you learn their limits and their individual needs for affection and attention. Sometimes, it’s just the warmth of an embrace that they need at that time to make them feel safe.
- You Learn That The Outside World Means (Almost) Nothing. I reference this in the post I linked to earlier but Jackson, in his world, is nearly oblivious to outside influence. I don’t think that he notices or cares to notice what others are doing around him. If someone were making fun of him (which I shudder to think about), I’m not even sure it would register. He’s made almost a cocoon of indifference around himself. I think about what my own life would be like if I had not a care in the world about what others thought about me: How would I behave differently? What would my actions be? Could I accomplish more if I was immune to the opinions of others? Jackson tends to live within that mindset. He just acts. It’s his world, his rules, his playbook. There is rarely an act of deceit or malice. Nearly everything comes from a place of innocence and curiosity. If there were any attribute of his that I would wish never diminishes, it might be this one. If I could impress upon him that it is such a gift to not be discouraged by the criticism of others or to be held back by someone’s interpretation of what he can and can’t do, I might be inclined to do so. Granted, sometimes we need the feedback of others to help us on to the next great place in life. When you love someone with autism, you learn that their world matters. Their control over that world matters. Every routine, every schedule, every habit plays into their ability to function within that world. It doesn’t mean that there can’t be deviations (this is life and life is not predictable.) But it means that sometimes, the influence of the outside world is the least likely thing to help us be our greatest selves.
To my son, Jackson, everything I write about you, I write in the hopes that someday you might read it. That someday, you might understand it. Until that day comes, know that all of us in your family love you through and through. You are more than just a special boy. You are happiness to the nth degree. You are a wonderful big brother. Sebastian is so lucky to have you, as we all are. You have made me want to work harder every day to be the Dad you deserve to have. I don’t always get it right but you teach me more and more all the time that it’s worth the effort in trying. Some day, maybe I will have tipped the scales more in balance by giving you all that you have given me. Happy Birthday, my handsome boy. Dad loves you.