Mike and Jake said things

June 24, 2016

Today I changed the pull-up diaper of a man about one year my senior.  Though I’ll spare the details, know that there were many details and they all adequately tempted my gag reflex. Throughout the whole tidying, my thoughts ranged from “Why am I the one the one who has to do this” to “I’m not sure if I should write a thank-you to my mom for doing this for me back in the day or if she should write one to me for becoming potty trained before I was grown enough to do this much damage.” My spoken words, thankfully, were gentler. “Mike, you really gotta get to the toilet next time.” 

“Next time” was 30 minutes later and I found myself in the same exact spot, latex-gloved and mouth-breathing. 

If the St. Joseph Center was a ski resort, I’ve been told that the unit I’ve been primarily placed to work in would be considered a “Black Diamond” slope. The Knights of Columbus unit, where seven “low-functioning” adult men reside, is a challenge to even the most experienced direct care worker. Michael is probably one of the main reasons for this. Along with his toileting faults and communication via his own brand of sign language (that includes a lots of constant pointing and loud “Hahh!” sounds), he makes himself the very clingy shadow of every worker that passes through the door. This makes it difficult to maintain the necessary patience to care for the others, each with their own challenges. Many seem to have written Mike off as a hopeless nuisance.

I’ve tried to avoid surrendering to this. Through process of elimination, I’ve begun to decipher his outlandish hand gestures. If I am engaging with another resident and he tries to be the center of attention, I gently tell him to wait. When he intently watches me fold clothes, I have begun to let him hand each piece to me as I put it in its respective pile. One of my favorite Michael moments was a few nights ago, when I turned to the laundry basket and he was holding up two matching blue socks, smiling like a Golden Retriever with a freshly dead bird. Granted, these were the only two blue socks in the whole basket, but his attention to my actions and his intelligence struck me. I was humbled by how quickly I’d dismissed the possibility of him being able to do it. 

Then fast forward to this morning, and the incident(s), and I told his finally-clean self to sit down and stop following me. I didn’t want to understand him. I was disgusted, frustrated, and exhausted. He was a nuisance. I went into the laundry room and locked the door behind me. 

Of course I was being unfair. Though with enough prompting he probably was capable of doing better, he did not do it purposefully. No one wants to do that. And I knew the smiley, affectionate, blue-sock-matching Michael wouldn’t do it out of malice. It’s just one of the messier parts of his disability. 

After a few minutes and adequate clean inhalations through the nose, I opened the door and my buddy was standing right in the doorway. He said “Hahh!” and I said “Hi Mike, wanna help me sort these?” With an enthusiastic nod, he began handing me each item. Then he picked up a washcloth, folded it himself, and placed it carefully on top of the others. 

July 1, 2016

Some of the residents at the St. Joseph Center require a staff member to be with them at all times. In the Black Diamond unit resides one of such people, and recently many of my shifts have placed me in the position of his 1-on-1 caretaker.

Jake is about six years older than I am, with ginger coloring that makes the two of us passable as siblings. He is non-verbal, diagnosed with autism and pica and diabetes. His 1-on-1 requirement is due primarily to his runaways from the unit. Secondly, it’s due to his occasional aggression.     

Enter naïve twenty-year-old intern girl. 

In humility, I must admit that I was slightly afraid of Jake at first. He often sat alone against a wall, rocking back and forth and rubbing his hands around one another.  The first time I walked over to greet him, the staff I was shadowing warned me to keep my distance. 

When I was officially working on my own, I felt as though I was at the mercy of what I perceived to be Jake’s unstable whims. When he wanted a snack, he would grab me by the hand and stare intensely into my eyes as he guided me to the kitchen. When he would “elope” from the unit, he would slowly shuffle to one of four locations throughout the St. Joseph Center. I had to follow behind him and sit with him in silence until he decided it was time to return to the unit.

My fear of his unpredictability peaked when the kitchen ladies sent donuts along with dinner one night. 

As the quantity allowed, we passed out one donut to each of the residents, who happily received the unexpected treat. Jake ate his in about 10 seconds—as a diabetic, he craves the carbs and sugar that the staff often keeps him away from in the interest of his health. When he grabbed my hand and motioned for a second one, I had to calmly tell him he could not have another. 
The silent man widened his gaze as the rejection registered, and then he promptly lifted his fist and thumped me hard on the shoulder. A loud “Ow!’ escaped my lips before I could stop it. I quickly stepped into the kitchen and locked the door. My heart was racing. Fear flooded my being, and I’m sure he picked up on that. The other staff told me to keep my distance for the rest of the night. I didn’t question it. 

A day or two later, I picked up my schedule to find that I was to be Jake’s 1-on-1 every single day for the next week. 

I could not keep my distance forever, for a) part of the whole internship deal is showing up to work, and b) playing it safe is not what I came here to do. How can you connect with people if you perceive them as some “other” to be feared? And how are they expected to trust you enough to understand that you’re denying them that delicious doughy treat for their own good instead of just asserting your power over them? The morning of the next working day, I stood in front of the bathroom mirror and looked myself in the eye with the internal pep talk of: Get over the donut incident. 

When I saw him the afternoon of my next shift, I tried to smile and say “Hey Jake” as normally as possible, but even I could hear the caution in my voice. I fulfilled all of his basic care requirements and was careful to avoid any potential conflict. When he walked out of the unit, I followed him, and we sat on the couch in the Center’s lobby as we always did.  We occasionally exchanged glances between Jake being off in his own world and me trying to occupy the time. When the silence felt too awkward to bear, I started making beats by hitting my legs and the couch, and he would look over at me curiously before returning to his own introspection. Eventually, I’d learn to revel in this peaceful time away from the noisy unit.

As we sat there, other workers of the Center would pass. Some said hello and kept walking, perhaps throwing a sarcastic “Having fun?” my way, while others walked over and visited the couch. I watched in fascination as they approached Jake first, who would smile and raise his hand. These select staff members would then high five it multiple times, breaking the silence with the claps’ increasing volume. Then, they’d flip their surely red and stinging hand over and Jake would tenderly feel the edges of their fingernails. His eyes remained smiling and fixed on the visitor. Apparently they’d discovered long ago that this was his choice conversation with those he trusted and considered friends. 

So, I began to give this type of communication a try. We would high five and I would let him feel the edge of my fingernails. After a lot of repetition, we established the secret handshake of a fist bump followed by the hand explosion followed by the Rocket-Power-esque “Woogedy-woogedy-woogedy.” I started getting the occasional smile and the frequent looks my way, which I usually read as, “Lady, why are you so strange?” 

One of our lobby visitors that day was Father George, an aged and joyful Sicilian priest on the Center’s administrative board. He walked over and greeted Jake with a handshake—I don’t think a man of his age can quite reach the high-fiving velocity Jake requires—then began talking to me in his thick Italian accent without breaking Jake’s smiling eye contact.  

“You know, he used to be our poster child here.”

Before I could ask what he meant by this, he retrieved a small red book from a nearby bookshelf and handed it to me. It was a low-budget prayer book of sorts, like a freebie you’d find in the back of church, and the cover featured the image of a motherly-looking woman holding both hands of a young redheaded boy. Their foreheads were touching and their eyes peered into each other’s with an intensely tender connection words don’t quite do justice. I looked up at the redheaded man sitting beside me. The one I once feared. 

“That’s Jake?” 

“Yes. Oh Ally, I wish you could have seen—he used to talk and laugh and everything. And then, one day, he just sort of shut off. No one really knows why.” 

I pictured Jake as the young boy in the photo, wild in childlike spirit and fearlessly running around the playground, and in that instant I was struck with the truth that that boy was still in between those two freckled ears, lost in a silent scream of a dropped signal. I no longer saw an enigma, a violent other who rocked back and forth and moved his hands in ways I could never comprehend. I saw a child, a man, a human. It was overwhelming, and I suddenly was at a loss of words myself. A few nights after, I had a dream that Jake started talking again and I woke up with tears in my eyes. 

A shift occurred after that, and I began looking forward to seeing Jake rather than dreading it. The next time I saw my friend, I skipped over, saying “Hi Jake!” with genuine enthusiasm. His smiling eyes lit up, his hand went up, and I high-fived it until my palm was throbbing. 

July 5, 2016

Today was Mike’s 22nd birthday. As usual, I was scheduled to be Jake’s 1-on-1 for the day, so I was seated on the lobby couch when Mike got off the summer school bus.

He saw me instantly and walked over, with his leaned-over posture and a smile that overflowed from its typical domain so that his eyes were squinted shut and his lower lip was tucked behind his front teeth. He flailed his hand back and forth. “Hahh!”

“Hi Mike! Happy birthday, man!”

He alternated between the super-smile and a relaxed face a few times, then pointed to a watch on his wrist. Along with a buzz-cut and glasses, the watch hadn’t been there the last time I’d seen him. I smiled at the newness of it all and the specialness I could tell he was feeling. He walked up to Jake, and began rubbing his shoulder. Jake, who normally would cringe at such an invasion of personal space, responded with his smiling gaze—it was the first time I’d ever witnessed him in “conversation” with a resident rather than a trusted staff member. 

The three of us walked back to the unit together. When Jake held my hand as he usually did, Michael slid over the other side of me and took the other. He leaned his head on my arm, but let go as soon as we passed another staff who simply couldn’t go un-greeted (“Hahh!”) or unaware of the birthday boy’s new arm candy (the watch, of course, not me).

When we got back to good ole Black Diamond, Amanda, the other staff on duty, motioned for me. In whispers, she told me that we were taking the whole unit to get W-E-N-D-Y-S (spelled out for extra secrecy because premature announcement would lead to premature chaos) and eat it in the park for Mike’s birthday. We attained the van keys. We began packing our totes with pull-ups and meds and emergency-info binders. Finally we started applying sunscreen to all the residents, and the guys began putting the pieces together. Leo blurted out, “Alright, where are we going?” Mike’s eyes were squinting with his all-encompassing grin again because he knew what it was about. 

So we guided our seven-man party down the hall toward the parking lot. Amanda conducted, just barely keeping up with the six-foot-seven, blue-eyed, adorably toddler-spirited Benny as he skipped ahead like a gazelle (“Eeeee!”). Stu followed, holding his “daughter”—a doll who apparently needed a diaper change every fifteen minutes—and singing “uptown Donald Trump, uptown Donald Trump” in between curse words directed at no one in particular (his mothering instincts give away the sensitive guy behind the angst). Leo, very proudly at the end of his second official week in the workforce, bounced his broken silicone bracelet in front of his face as he deliberated our destination under his breath. Jake, who had miraculously agreed to put shoes on for the occasion, shuffled silently in the middle, smiling to himself. I brought up the caboose, trying to keep Tom and Dennis at a pace ever so slightly faster than the usual crawl as Mike pried my backpack off my back and put it on his own. Dennis asked if he was going home, whining as his hands threatened to derobe his lower half when the answer wasn’t what he wanted (thankfully the promise of soda and French fries kept him tottering onward, belt intact). Tom, essentially your very forgetful jokester grandpa blissfully stuck in a John Wayne movie, “took my nose” about four times over the course of the walk. We often had staged bouts that entertained his affinity for the Western films.

“You wanna fight old lady?”

“I could go all day, grandpa.”

We had a Playdough ball fight one day, but that’s another story in itself. 

Within ten minutes, everyone was loaded into the van. From my passenger-side front seat, I turned around to observe the group, calling out the few rebels trying to get away with an unbuckled seat belt (“Nice try, Jake”). It felt like a family road trip, where at least momentarily everyone forgets about any disputes they have with each other or any troubles they’re experiencing on their own.     

After merging the van onto the highway, Amanda turned up the radio volume a bit and we sang along unabashedly to Twisted Sister’s “We’re Not Gonna Take It.” Some joined in with the words, others with “Hahh!”s, “Eeeee”s, tapping, and/or silent smiling contemplations out the window. Of course the Wendy’s worker will roll her eyes when, according to the Center’s policy, we have to put each guy’s orders on separate receipts. Of course we’ll have to chase down Benny in the park so he doesn’t gleefully skip into the street or work himself into a grand mal seizure. Of course Dennis will have a meltdown and we will have to keep Stu from cussing out an innocent 5 year-old bystander on the playground. Of course Jake will finish his soda within two minutes and then try to steal mine. These inevitabilities didn’t matter, because when I turned around in that van I saw peace and I saw hope. There was a destination ahead and it was exciting, and until then all we had to do was sing along with the radio with people we loved.

      We’re not gonna take it.
       No! We’re not gonna take it!
      We’re not gonna take it—anymore!

Mike walked around the park like its mayor that day, personally greeting every inhabitant. This included the Bichon Frise, for whom he sat on the ground and rested his head on its small, fluffy white body. He walked up to a parked car after it pulled in, knocking on its window until the woman in the driver’s seat rolled it down—at first confused but then understanding. He greeted her with a “Hahh!” and a handshake so aggressive his tongue stuck out and his head shook as well. A younger girl sat in the passenger seat, so Mike ran around to the other side of the car to do the same courtesy. He pointedly showed them both his new watch. 

I walked over, fought off that awful initial impulse to apologize for him or explain him, and simply told the strangers with a smile: “Today is Mike’s birthday.” Mike’s whole face scrunched in that overwhelming excitement, a joy that instantly flooded into the strangers. “Well, happy birthday, Mike!” they said, laughing with him as he reveled in the attention. I was touched because they saw, just as I did, someone before them who deserved to be celebrated.
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Today was a good day. 

By Ally Bartoszewicz

All names, including that of the residential care facility, have been changed in respect of privacy.