#TheyTaughtMe : “The Horsefly That Got Away” by Dr. Laz

Joey

“Let’s go,” I urged. “On the count of three, we lift together.”

My lifeguards were already used to the procedure, and I couldn’t get over how we functioned like a smooth, synchronized Swiss watch. There was no need to tell them to use their legs and not their back, or to make sure their feet were firmly planted. (The deck was usually slippery.)

“Laz,” one of the guards said. “Do we really have to?” I knew exactly what he was thinking.

“Is it worth all this effort?” he continued, verbalizing what most were probably thinking. “What’s Joey getting out of this anyhow?”

It was not only a good question — it was the question. It pervaded all of Joey’s activities here at Camp Mishkon, a summer camp for individuals with profound special needs. As a New York State certified special education teacher, who also had American Red Cross training in water safety and lifeguarding, I was hired to run the pool and waterfront programs. It was my responsibility to make sure each and every camper got to go swimming and boating to the best of his or her abilities. This was quite the task — their ages ranged from sixth graders to over 60 years old. Their skill levels were just as diversified, including individuals with profound Autism, Down syndrome, Cerebral Palsy (CP), medically fragile conditions, and other physical and mental challenges. Many were non-verbal, and nearly half required wheelchairs for mobility.

Quite honestly, I, too, wondered if all the effort was worth it. Joey had multiple challenges; he had multiple profound disorders, along with various physical challenges. He was most comfortable sitting in his wheelchair and preferred being left alone to engage in self-stimulation behaviors.

In fact, my lifeguard’s question is a very common inquiry in general toward individuals with profound special needs. What, if anything, are they processing from their “outside” environment? It’s something I hear echoed by both parents and professionals working in the field: “They just seem lost in their own world.” Making meaningful connections with anything outside their “own world” is often a frustrating process.

“I don’t know,” I answered. “I really don’t, man. Could be something. Maybe nothing. Maybe even lots…lots more than we even imagine. I guess it’s all worth a shot.”

“Yeah,” one responded. “We were at your training and got the GOK and FID thing down. But still…”

“GOK,” the third guard said as if to encourage himself more than anything. “What a child will become, and where the kid is even now… God Only Knows.”

“So you were paying attention,” I smiled.

“And FID,” he continued. “We all have hang-ups and issues. But they do it more F, Frequently, with greater I, Intensity, and for D, a longer Duration, of time.”

“Impressive indeed,” I said. “Now we have no excuses. Let’s get big Joey in the water.”

With individuals with special needs, every task is more intense and much more involved. The attitude was to offer our special campers the usual, fun summer camp experiences that “regular” kids take for granted—including boating and swimming—and each was a major production.

Eventually, I figured out a creative way to get our stubborn campers into the water. It came to me as a flash of wisdom from above. For weeks we were trying to convince one older camper, a guy in his late 50s, to enjoy the water. He had limited verbal abilities and would simply say a long, drawn-out “Noooo.” One really hot day it was business as usual, and he wouldn’t budge.

“No problem, mates,” I said. “But he is going in today!”

My guards looked at me like I had lost my mind.

“In fact, not only is he going in the water, but so is his wheelchair!”

It was a stroke of genius. His eyes got big as we approached the edge. We slowly but surely lowered him into the shallow end of the pool. Within moments, he was happily splashing away and playing catch with a beach ball. It was the first time we ever allowed a wheelchair in the pool, but it worked like a charm. Now he didn’t want to leave the water!

I have to admit, getting Joey into cold water in an outdoor pool didn’t seem to make much sense. Although he was 19 years old, he was on the small side. Quite frankly, I wasn’t sure what, if anything, was sinking in with Joey whenever I did manage to get him in the water. I held him in front of me and helped move his arms and legs to stimulate his blood flow.

So there we were, standing in about four feet of cold water. Within a minute or two he started shivering. I couldn’t help but question: Why were we subjecting Joey to this? It seemed that the only thing he was getting from this wonderful experience was a cold.

But I was about to get the “GOK” lesson of my life. As we stood in this position, I kept trying to keep things on the positive side.

“Good, Joey,” I said. “Oh, you’re doing a great job there, buddy. Yeah, let’s move this arm. Good. Now, this one.”

Poor Joey was shaking badly, and I knew we’d have to get him out in a few seconds. That little voice of doubt was getting bolder inside me. Who even knew if Joey was processing any of this? Was this experience beneficial in any way? Was it worth all the effort?

Then, good ol’ divine providence sent a little messenger to me: a very small messenger that packs a powerful wallop. A horsefly, to be exact. Unbeknownst to me, this little guy had landed near the middle of my back and sunk in some teeth.

“Ahhhhhhhhhhhhhhh,” I shouted, swinging one arm around and smacking myself in the back while trying not to lose Joey below the surface.

My left arm still held on to Joey, shivering in the water. I gave myself several smacks, desperately trying to get the bug off me. It was so frustrating, because my immediate reaction was to dive underwater and escape my tormenter, which wouldn’t have worked all that well for Joey.

To my utter amazement, Joey himself had something to say about the situation: He started laughing in these deep, loud guffaws.

“Ha-ha-ha-ha-ha,” he roared, his eyes lighting up.

I was in shock. Not from the horsefly, but from Joey. The horsefly laid into me a few more times, but those bites didn’t faze me. I stared gratefully at Joey, a few tears of joy streaming down my face. No, he wasn’t incapable of processing anything from the “outside.” Not only was he highly aware of his environment, but he also had a great sense of humor. Like my class at the Quest Center, where I do music and drama therapy for individuals with special needs, he absolutely loved slapstick.

From that point on, I did my best to keep Joey a happy camper. I’d walk into walls in the dining room, or pretend to slip and fall, just to hear him roar with delight. And whenever he came to the pool, I’d yell from the top of the lifeguard stand, “Hey Camp Mishkon! Is everyone happy?” Those with verbal skills shouted back a loud yes, which, of course, I wasn’t satisfied with, and asked the question several more times. Joey would move to the best of his ability in his wheelchair, his eyes bright while he awaited the glorious result. Then, I would cannonball into the deep end to their roaring approval.

Now, I’m the kind of guy who’ll rescue a fly trapped in water in my sink, but I also take pride in my ability to smack a horsefly into orbit. But the one that bit me while I was holding Joey got away, and I’m happy it did. I figure it was the least I could do.

As I developed my slapstick routines for Joey and the entire camp, I hoped I wouldn’t need another horsefly to remind me in the future that, yes, these individuals can learn. They can process and respond, and are probably much more aware than we imagine.

Danielle

The first time I met Danielle, she was sitting quietly in her wheelchair at the Quest Center. She was a 19-year-old with Cerebral Palsy. She controlled her wheelchair using an adaptive head switch, and communicated through a pretty sophisticated communication device, which was attached to the front tray of her wheelchair.

“Are you okay?” I asked her, noticing her downcast expression.

She looked up at me for a moment and I could tell she wasn’t feeling well.

For the next few minutes I went through a series of questions.

“Are you hot? Cold? Tired? Sick? Angry? Upset? Hungry?”

And the list went on. To each she simply shook her head no. With Danielle, just like with Joey, I wasn’t sure if she was processing anything I was asking. Maybe she just liked shaking her head back and forth. But when I asked if she was thirsty, she changed her response to a nod of approval.

“Thirsty, eh? Okay then. Would you like a Bud Light? A Coors, perhaps?” And I kept up this list for a good 30 seconds.

But then I noticed something else going on. She was using her knee switch to operate her communication device. I waited patiently to see the outcome. Or, to be more precise, hear the outcome, for after three minutes the machine verbalized what she wanted to express:

Yes we can learn and grow and process information and even have wonderful interactions with you strange, stubborn adults! And we often have a very cool sense of humor to boot.

“Dr. Laz, are you an alcoholic?” her device said out loud in a rather monotone voice. We both started laughing big time, right there in the school hallway. For me it was another wakeup call from an amazing student.

Robert Frost once stated that he wasn’t “a teacher but an awakener.” To become awakeners we have to stay awake. Kudos to Joey and Danielle, and hundreds more of my incredible students, for all the important wakeup calls. And that nasty biting horsefly? Guess I owe you, too. I’m glad you got away.