What It's Really Like To Raise a Child with Autism
Just a Simple Trip to the Park.
"Eesinnuh, eesinnuh,"my son, Ben, blurts out.
I struggle to figure out what he's trying to say: It's a nut? It's a knot? It's enough?
"Eesinnuh, eesinnuh," he yells again.
Though I can't understand him, I'm happy to see he's making direct eye contact, something that took plenty of work, and training, and practice. And that he's beaming his radiant smile. Today Ben is in a good mood.
My wife always comments that when our son is happy, he is the most delightful little guy in the world, but that when he is unhappy, he is the most distressing person imaginable. She is right, except for the 'little guy' part.
Our 8-year-old son is five feet tall, weighs 150 pounds, and wears a man's size 8 double-wide shoe. He is hardly a toddler, although most of the time he acts like one. Ben has autism, and with him, anything and everything can be a major ordeal.
Autism is a disorder of neurology, not (as was once thought) of psychology -- at least for those afflicted directly. The psychological problems tend to come to those who love them.
Let me describe a recent Saturday afternoon. Ben's occupational therapist calls to cancel his appointment, and we are left without any scheduled activities for him that day, which can be a challenge. So I decide to take him to a small playground on the shores of Lake Michigan, not far from our home in Chicago.
After Ben grows tired of the swings and jungle gym, he blurts out, "Take a walk." This is actually one of his few phrases that are easily understood, even if it is often belted out for no apparent reason -- like during a bath. But we revel in all of Ben's words, because there was a time when we didn't hear any. Today his request makes sense, and I am happy to comply.
We leave the playground and head up to the bluffs. I follow Ben as he walks -- and walks and walks -- along the long driftwood fence that separates us from the lake. Later on, I'll realize that Ben was probably trying to get close to the water, which is why he was willing to walk so far. But at the time, I simply follow as he trudges along.
After going well beyond what I think is wise, I say, "Okay, time to go back." But Ben pushes onward. If he were 4 years old, I could scoop him up onto my shoulders and that would be that. But he is too big to lift, let alone carry. I have no recourse.
I set my sights on the turn in the road up ahead, hoping Ben will somehow see the slight change of direction as a good place to turn around. He doesn't, and we don't. I become more and more concerned, finally turning back myself and saying, "Okay, Ben, I'm going back now. Bye-bye." Luckily, he follows me.
My good mood restored, we are about three minutes into our long haul back when the tantrum begins. Actually, the word "tantrum" doesn't really do justice to what's happening. Some behavioral specialists use the term "behavioral seizure," which, in its clinical cleanliness, also misses the mark. I have yet to come up with a phrase that captures it. It's one of those things where "ya hadda be there."; But you don't want to be.
Ben stops walking and starts hopping on one foot. He screams and hits himself with full force on the sides of his head. He bends forward at the waist, flings himself back up, screeches loudly, smashes himself in the face with his left hand, and then sobs, all in about five seconds. Uh-oh. I realize we have gone too far.
I grab him by the wrists and say, "Come on, Ben. We have to walk to the car. No hitting." He screams again. He shifts into dead weight and crumples to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.
"Come on, Ben," I say. "Let's get to the car and have a bottle."
"Autistic tantrums are the best."
Yes, my son is 8, taller than his grandmother, and heavier than his mother, but he still drinks diluted apple juice out of a baby bottle. He loves it (it soothes him), so we give it to him. It is also handy for giving him medication, since he is extremely defensive when it comes to ingesting all but a few foods and drinks.
I am hoping the offer of a bottle will be my carrot on a stick, but it doesn't work. I bend down and try to pull him to his feet from behind, my arms under his. He stands up, screams, jumps, and then flails, knocking off my glasses and hitting my nose hard enough to bring tears to my eyes.
"Damn it, Ben!" I reflexively blurt out.
Shifting into my numb, task-oriented mode, I stand behind him to hold him up and push him along. I am sweating, my back is aching, my ears are ringing, and I don't know if I can keep this up for another third of a mile. I do know that I don't have much choice.
After another dozen steps, Ben tries to jump up and down, and then slides to the ground. He lies flat on his belly, bouncing his face on the asphalt, screaming. I only now notice the spectacle we're creating.
A car has turned around and come back, the passengers staring. I wave faux-cheerily at them, understanding their concern but at the same time wanting to flip them the bird and ask if they've paid for tickets. "Autistic tantrums are the best," I yell out. The spectators say nothing.
Ben makes another little leap, loses his balance, and tumbles to the sidewalk. In fear, I look at his arm, which seems to have taken the brunt of the fall. I am worried that he might have broken it. Less than two years ago, Ben misjudged a step, fell, and broke his wrist. I am imagining a repeat, but he gets to his feet and starts to slap himself again.
Maybe no broken bones, I think to myself, but he will have bruises on his face this week.
I am half-expecting a cop to pull up, which I would half-welcome. "You feel like serving and protecting?" I'd ask. "How about serving us a lift to our car and protecting us from the rest of this tantrum?" But the cops don't come.
Yes, Ben still wears diapers.
Ben's nose is bleeding, scratched by one of his fingernails. His face is flushed but not wet, because for some reason Ben never sheds tears. But he's hollering, and his nose is running. As I say, "Bye-bye, Ben, I'm going to the car," he rises, only to bolt toward the street. I lurch and reach him before he gets to the crosswalk. Then he goes down again and tries to crawl across the strip of grass into the traffic, still slapping away at his face.
I am breathing heavily, having been a bit frightened when he ran for the street, and I'm wondering why we can't just have one nice, normal day when a trip to a playground can mean simply a trip to the playground. I'm feeling sorry for Ben, because whatever he's going through sure isn't fun for him, and his dad can't do much to help. I now wonder if he thought that his walk along the sidewalk would bring him to the lake. I wonder if his stomach hurts. I wonder if he's feeling worn out yet, like I am.
After more of the same, we finally get back to the playground and our van, and I discover a possible explanation for what has been making him so miserable: Ben could not have been comfortable walking with what he was carrying in his very large diaper.
Yes, Ben still wears diapers.
To be honest, I considered this possibility earlier in our trip, but I didn?t bother to check -- what good would it have done anyway? Since our walk was unplanned, I left the ever-present backpack of wipes, diapers, plastic bags, and spare clothes in the van. And even if I'd had the pack with me, it would not have done much good on a busy sidewalk. I can just imagine the faces of the drivers, or the cops, if they'd gotten an eyeful of that scene.
Though Ben doesn't stop yelping and hollering once we reach the van, at least he "assumes the position" to be stripped, cleaned, and redressed. I try to hand him a bottle, but he pushes it away and says, "Pig, pig!" He wants his little pink rubber pig, which I put into my coat pocket when he began climbing the monkey bars prior to our walk. Has he wanted this all along? Is this why he's been upset? Only Ben knows. He holds the pig, and I go to work.
I spend ten minutes taking care of business, sweat dripping down my nose, arms aching, and a headache approaching. I feel both relieved that our ordeal has ended and fortunate because I know that it could have been worse. Once Ben is dressed and buckled in, I hand him a bottle, which he grabs and sucks in desperation as we pull away. We?re going home. It's over. At least for today.
"Eesinnuh, eesinnuh," Ben blurts out as we begin to drive home. "Eesinnuh, eesinnuh."
Is it a nut? Is it a knot? Is it enough?
Is it ever.
To learn more about autism, get our annotated list of the best resources on the Web.
Copyright © 2003 David Royko. Reprinted with permission from the January 2003 issue of Parents Magazine.