TITLE: Life on the Spectrum
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Calling his name for the fourth time, I await a response from the child standing close by. As the other three times, I see no indication that he has even heard me. A sigh escapes as I stand and move towards him. With a touch on his shoulder, he turns towards me. “You need to get off the hearth,” I explain for the millionth time. His eyes show no emotion, but he obeys.
Returning to my seat, I begin working on lesson plans, watching out of the corner of my eye as he returns to the very same place he had been standing before. On the hearth. This is a daily battle, along with many others. Some, such as this, are relatively unimportant. We have reasons for them, but basically they are not life threatening. Others, like “Don’t run into the street” are much more vital. Yet, all of them are met with the same reaction.
It is not that my child is dumb, or even that he is willfully disobedient. On the contrary, he is smart, and there are moments I see a great desire to do the right thing. However, somewhere in his brain, the wires cross in a strange pattern. What I see as common sense, he doesn’t see at all. Things that seem difficult to me come naturally to him. I find myself constantly at war…on the one hand I am in awe of him, and on the other hand I am completely frustrated by him.
You see, my almost ten year old has an autism spectrum disorder. It isn’t easy to see at first. In fact, most people just think he is weird. The fact that he talks too loudly, or that he touches people’s hair seems odd and a bit obnoxious to those who don’t know him, but no one suspects autism. After all, he talks without hesitation to anyone whom he meets; he is not drawn within himself like most people consider autistic kids to be. But we now know that autism comes in many packages.
We have known from early on that he was different. Around his first birthday we found that he was fascinated with shapes. Hours were spent emptying and filling the shape sorter. By eighteen months he was picking out parallelograms and trapezoids everywhere we went. Sleep was always hard to come by, and often when he was struggling we would find shapes on the ceiling or windows, or wherever they could be found. Yellow became his favorite color, and he was adamant that everything around be that hue. (He has switched to green now.) As a young child he begged me not to hold his hand. He didn’t like the way it felt. We learned to compromise—he held my pinky. From infancy he has been fascinated with hair. The feel of it in his hands brings him comfort. Pulling mine brings me grief. When he touches the hair of strangers, I cringe. On vacations, he begs to sleep in the closet though there are plenty of beds for everyone. Even putting on his shoes must be done his way. The right shoe always goes on first. Changing this routine is not an option.
At seven, we finally got him tested. As if he were a jar of mayonnaise, they placed labels on my little boy. Not just one, but several. Giving a name to his differences was both good and bad. It helped me, as a mom, to realize that maybe he really did have a problem, and maybe it wasn’t all my fault. However, labels are hard to peel off. Ever notice when you take off a label there is a bit left behind. It’s no different with spoken tags. They gave me a copy of their findings to take home, then they sent me on my way, offering their advice and directions to a pile of doctors that I should see.
Two and half years later, I am no closer to understanding how to deal with my son than I was then. Most days I feel like I have taken two steps forward only to find myself three steps back. There is a great deal of “advice” that is pointed in my direction, yet there is often very little understanding. A child who looks normal, should be able to act ‘normal’. If they don’t, it is considered a parenting problem. Sadly, I used to believe that too.
It is not my issues that bother me, however. Each day I see my son struggle with things that no child should face. Working on a composition with him one day recently, I found myself catching a glimpse of his world—through his eyes. When asked about what others like about him, he said, “No one likes me.” For the next several minutes I tried to convince him that this wasn’t true, but in the end, I knew that he had no reason to think differently. Though he seems to show no emotion when he is ignored or laughed at, it hurts deep inside of him. Rarely does he let anyone in on the pain, but it is there.
In reality, he is the odd man out. If the room was full of classically autistic children, he wouldn’t fit in. In the world he lives in, full of what we consider ‘normal’ kids, he doesn’t fit in. He is stuck as an outsider no matter where he is. Living in a world he has made for himself, but fully aware of the world to which he is unable to adapt.
There is no cure for him, and for that I am thankful. If there were, we would surely search for it, paying whatever the cost. We would ‘cure’ him of his ‘syndrome’ and all live happily ever after. However, we would cheat the world of having this wonderful child who will never fit in.
Only weeks before his tenth birthday there are many things that my boy can not do. He can’t tie his shoes, ride a bike, or understand the need for others to have personal space. Conversations with him are often one sided, and his ability to understand normal social cues is quite low.
On the other hand, there are many things he can do. In his mind he can see days long gone as if he were reliving them, remembering minute details that have been forgotten by most. After hearing a Bible story, good book, or interesting commercial once, he can quote—most times word for word—what he has been told. Give him a few minutes with your computer, and he will know where everything is, and how everything works. If he hears of a child who is lost or hurting, he has the ability to relate to them. Truthfully, if they were standing in a room with him he wouldn’t have the slightest idea what to do, but the moment he hears of an injustice, he relates with the one who is hurting, and he truly desires to help. Maybe because he has felt the pain himself. He too has been lost, hurt, and often treated unfairly.
As days turn into years, and I watch my dear son grow, I find that his differences are not a disability. Instead they are a different ability. He may not see the world as we do, but he sees the world as only he can. And it is his view of the world that, in my opinion, may be the one we all should have. It is simple really. Although he desires friendship, he doesn’t know how to make himself something that he is not just to impress others. What you see is what you get. When he finds something that he feels is important, he is passionate about it—regardless of the cost. He is unafraid of the truth, and willingly speaks it to anyone, no matter if they listen. Traits that most people don’t care for, yet the world would probably be a better place if we all had them.
Tomorrow we will awake to the same issues we faced today. Possibly ones that we thought were in the past will creep back up, or new ones will enter. There will be moments when I will fail him. Times when his strange noises and endless pacing will bring me to the brink of my sanity. However, when this season in our life has passed, the God in whom I place my trust will allow me to step back and see the whole picture. At that moment, the beauty of what He did will stun me, and I will bow my knee in thanksgiving.
Until that moment, I will hold to the beauty He has allowed me to glimpse so far. The day when, with tears in his eyes, he proclaimed, “I will die for Jesus.” Prayers heard from the hallway long after bedtime has passed—a child’s voice asking God to guide his life. The unashamed question to strangers, “Do you believe in Jesus?” These are the moments that will last far longer than those that cause me grief. For, these are the moments that will stand through eternity.
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