Guardians

The coldest days in the park are the easiest.

It’s Sunday. It’s quiet. The temperature is fifteen degrees, lower with the windchill. The local elementary-school playground has three pairs of swing sets, a climbing gym with a twisty slide, basketball courts, a soccer field, and a football field flanked by metal bleachers. The playground is layered in eco-conscious wood chips and bordered by a field of balding grass. The field ends at a cyclone fence, beyond which is a swath of woods with hilly dips and trails. As far as parks on elementary-school playgrounds go, one could do worse.

My only son, Peter, who has autism, is unaffected by the cold. He refuses to wear any shirt with long sleeves. Still, I make him wear a hoodie and his down coat for extra layering. He insists on wearing Crocs, even in the snow. I’ve given up trying to make him wear boots. Convincing him to wear socks takes forty minutes of pleading. Jeans aggravate his sensory issues, so I dressed him in the warmest pair of sweatpants he has. I still dress him. I still shower him. I still goop toothpaste onto his brush. I still scrub at his teeth until he hits my shoulder with his wrist. I shave him. He’s seventeen years old.

He did the same wrist-punch to a woman with purple hair and sleeve tattoos who was cutting his hair. She asked us not to come back. My wife, Deborah, bought a trimmer. It’s easier and saves us from being embarrassed. She forces him to sit on the lip of our bathtub and zips lines across his head. His hair, curly wisps, drifts onto the tile, reminding me of falling leaves. The locks of hair that don’t make it to the floor Peter plucks off his shirt and flicks at her in protest. Our son should be embarrassed but doesn’t understand, so we have become his stand-ins, the upholders of his dignity. I used to apologize when he became agitated and jutted his tongue out at someone who was laughing too loud, or trying to ask him a question, or simply cutting his hair. But I soon realized that I was apologizing for who he is, a boy with autism, and I decided that instead of saying, “I’m sorry,” or, worse, “Sorry, he’s disabled,” I’d ignore the person and correct my son instead. I’m not asking for sympathy. I hate sympathy. It renders you helpless. I want empathy. After playing this out for seventeen years, I’ve decided people’s inability to recognize my son as a person with needs, wants, and feelings is a form of blindness.

The last time I went to a regular park instead of a school playground, my son ran to his favorite swing—he has to go on each of the six swings in a particular order or else he becomes agitated—and accidentally bumped into a toddler, tipping him over. The mother clasped her child as though she were fleeing an erupting Vesuvius and yelled, “This park is for babies!” I looked around at the other kids Peter’s age. I understand that she was being protective. I’ve seen parents fight in the park about a lot less. But the hate in her eyes surprised me.

For years I fought the realization that Peter was different. When he was a year old and had never smiled at himself in the mirror, I told myself that babies progress at different paces. When he was four and had no interest in stacking blocks, I thought building towers wasn’t his thing. When he was six and sprinted the length of the Target aisles until he was winded and sweaty, I believed that he had a lot of energy. When he was six and had no interest in playing with other children, I convinced myself that he had a vibrant internal landscape and craved solitude, even though by then he’d been diagnosed with autism. When he was eight and still expressed his needs using single words like hungry or more instead of speaking in complete sentences, I persuaded myself that maybe he had a speech delay. I still believed that with enough time he’d talk more.

 

Today on the elementary-school playground, we’re alone. The sky is overcast, and the wind whistles as it blows across the open field. The branches of the trees behind the playground sway and creak in a pleasing way. I follow Peter across the basketball court. I say, “We can’t stay long.”

He takes a few steps, stops, walks back, steps on the foul line once, twice, then takes three steps forward. Unsatisfied, he walks back to the foul line, steps twice, and then turns. I say, “You have to hurry. It’s cold.”

Peter says, “All done,” his way of disagreeing.

Once, he told me, “Oh shut up,” and I laughed about it for two days. He never said it again.

I say, “Just go on the swing please.”

He says, “Leaves coming,” his way of telling me, maybe, that he’s cold.

I say, “Go play. Please.” He continues his three-step cha-cha toward the swing. I’m freezing, but at least it’s quiet.

When kids do show up at this park, they’re usually teenagers playing basketball or riding their bikes. On cold days I don’t have to worry about them showing Peter their ball and asking him impossible questions like “Do you want to play?” or “Why don’t you talk?” I don’t have to watch another parent assess the danger of their five-year-old playing near my seventeen-year-old. I don’t have to listen to the father in khaki shorts call to his son to use the swing farthest away from my son or hear the mother in yoga pants tell her daughter to go down the slide instead. I don’t have to answer questions like “How old is he?” It used to embarrass me. Now, if it happens at all, I say, “He’s seventy-two.”

On cold days it’s only us. Peter is free to self-regulate, stimming in all the ways he needs to. He can flap his hands and stand on his toes until his balance gives and his heels fall flat onto the ground. He can exhale his winding noise, “Aeeeaahhhh,” as loudly and violently as he wishes. He can bang his wrist on his chin or teeter on the swing as an icy breeze blows his hood off his head. On cold days I look at my son and my heart breaks. Like any parent, I want the best for my child, and I can’t help feeling that he’s missing out.

Another breeze cuts across the field, the wind whistling in my hood. Peter stops a few feet before the swing. He says, “Happy?”

I say, “Sure.”

He says, “Happy like Big Bird?”

I wipe my nose with my glove. I say, “I’m happy like Oscar.”

“All done.” Peter flaps his hands. “Daddy?”

I say, “What, Peter?”

He says, “Happy like Big Bird.”

I say, “I’m happy. OK? I’m happy.”

Lately he says, “Happy,” and I’m not sure if that means he wants me to be happy, or he’s asking me if I’m happy, or he’s saying he’s happy, or he’s worried that I’m mad at him. It might be none of those, just repetitive speech. When he was six, he repeated, “All done,” for no real reason. The worst repetition was when he said, “Swing today,” but followed it with “No swing today,” giving me both options without expressing his desire for either. His speech therapist said he was trying to understand the binary of yes or no. He likes to count, so he’d say: “One, no one today; two, no two today; three, no three today,” all the way to one hundred. “Today ______, no ______ today” became every facet of his speech.

 

Peter’s speech is also a problem when he’s not feeling well. When he has a fever, I ask, “Does your head hurt?” He tilts his head so he can stare at the ceiling in his peripheral vision, another stimming behavior. “Peter, does your head hurt?” He rocks, says, “Head hurt.” I nod. He has a fever, so that was what I expected. I ask him, “Does your throat hurt?” He says, “Throat hurts.”

I smile. We are two for two, but to make sure he’s not just repeating the last thing I said, I ask, “Does your funny bone hurt?” He says, “Funny bone hurts.”

I watch him, the tips of his bronze-colored hair twisted into fine points like a paintbrush dipped in sweat. There’s a trick that sometimes works. I say, “Peter, does your knee hurt or your throat hurt?” He says, “All done.” I move toward him. “Does your knee or throat hurt?” He says, “Throat.” Then to make extra sure, “Does your throat or your knee hurt?” He skews his head and says, “Knee.” I feel helpless and overwhelmed. Instead of pushing him further, I call the walk-in clinic.

His inability to tell me when he’s sick, the most baseline, possibly the easiest thing to express, means he isn’t expressing a million other needs that are harder to pin down: If his shoes are too tight. If his ear hurts. Once, my son was walking funny. When I looked at his foot, he had a bee stinger sticking out from his toe. Being a parent of a disabled child means I can’t assume anything. I am taking care of his needs, and if I miss a need he can’t express, I’m failing him.

I’m always failing him.

 

In March Peter will turn eighteen.

He will be an adult, but since he needs help with every facet of his care, we have to apply for what is called general, or “plenary,” guardianship. Once that is granted by the state of New Jersey, Deborah and I will make all medical decisions for our son. Ironic, since we have been making these decisions up until now without legal interference.

While browsing the New Jersey disabilities website, I had a hard time understanding the differences between having guardianship of the person versus guardianship of the estate versus guardianship of the person and the estate. The website was written in complicated legal jargon. The Q and A page answered none of my questions. Afraid that I’d fill out the wrong form, my wife and I decided to pay a lawyer to submit the paperwork for us. Once it was submitted, the county would retain an attorney to represent our son in court. The county attorney would then visit our home to ensure that Peter actually needed assistance and that we weren’t applying for guardianship against his will. Anyone remotely competent would realize within seconds of trying to talk to Peter that he couldn’t care for himself. Nevertheless we would have to pay the county lawyer anywhere from $900 to $1,500 for their hour-long home visit.

Not only did my son need to be interviewed by the county lawyer, but we were also asked to provide his neurological report from when he was first diagnosed at the age of five; his most recent Individualized Education Plan (IEP), which stipulates the speech and occupational therapy he receives and his need for a one-on-one aide; and, finally, documentation of two separate pediatric examinations. My son has a hard time at the doctor’s office. When the doctor tries to examine him with the otoscope, he covers his ears. Peter gags on tongue depressors, sometimes vomiting. He hits the nurse who fastens the blood-pressure cuff around his arm. Once he fled the room wearing only his underwear. He was fifteen.

Fighting for even a little self-preservation, I called the office to see if it would be possible to have both doctors see my son on the same day, but the state wanted two separate examinations, each on a different day. They also needed to be conducted by medical doctors. A nurse practitioner or one of my son’s speech or occupational therapists wouldn’t do. Even his social worker’s opinions were invalid. Between the pediatricians and the lawyers, the cost was more than $3,500 to obtain guardianship over our disabled son.

We met with our lawyer over Zoom for a consultation.Robert was friendly, with slicked hair and impossibly white teeth. First he asked for basic information such as my address and work status. As he typed my answers, I realized that everything I said about Peter would be recorded. I had this tugging desire to be honest for my son’s good, yet also to lie to protect his dignity. The more forthcoming I was, the easier it would be for the judge to grant us guardianship. But I also felt I was betraying Peter by describing his most vulnerable, and my most heartbreaking, moments to our lawyer, who would then present my testimony in court. I had become enmeshed in the legal system, and my choices within the process were limited.

Robert asked, “Can your son prepare his own meals?”

We have cooked the same type of pasta and Rao’s sauce for the last thirteen years. Each day we cut up his salad of scallions and cucumbers. We heat his frozen pizzas. We butter his bagels. When my wife cooks, Peter blows at the lit burner as though it were a birthday candle.

I said, “No.”

Robert asked, “Can your son dress himself?”

Each morning I slip on his socks, wrestle his sneakers onto his feet, and knot the laces four times. When he tries to dress himself, he comes into the living room wearing his shirt backward and his pants inside out. No underwear.

I said, “We do it.”

He asked, “How is your son with hygiene?”

Sometimes I accidentally gag him with his toothbrush as I scrub his tongue. I slick his armpits with deodorant; I shampoo his hair; I cut his fingernails. We wait for him to fall asleep so I can clip one toenail a night. Once I tried it when he was awake. He kicked me in my face.

I said, “We take care of all of that.”

He asked, “Is your son aware of danger?”

I told Robert about the time my son went to the park and an older man stepped out of a beat-up white van holding an emoji-face pillow. As I yelled for my son to come back to me, Peter walked to the man and grabbed at the pillow. I ran toward them, and the man ripped the pillow out of my son’s hands, jumped into his van, and drove away.

“So that happened,” I said.

Robert typed, the keys clacking, and said, “This will help your case,” as though my son were on trial for murder. Then he said, “Anything you’d like to add?”

Yes. I’d like to add that applying for legal guardianship of a child we’ve taken care of for his entire life, a child who goes to a school for disabled children and has an IEP, makes me feel as though this humiliating process is simply a money-grabbing scheme by the state that I’ve been forced to endure.

I’d also like to add how ridiculous this guardianship process is for a boy—sorry, a man in the eyes of the law—who still flips through Sesame Street picture books; who still watches Dora the Explorer; who is still terrified of thunderstorms; who still asks me to say good night to his stuffed animals; who still likes his mother to sing him lullabies; who still laughs at peekaboo; who still holds my hand as we cross the street; who still needs me to tell him to flush the toilet or shut the bathroom door; who still doesn’t understand that two of his four grandparents are dead; who still hasn’t asked me the most essential of developmental questions: Why?

But I do. I ask: Why do I feel as though I’m perpetually failing my son? Why can’t he progress, if only slightly? Why can’t Peter just tell me when he’s sick? Why and why and why.

I have this recurring dream where I’m seated at my table drinking coffee, and Peter sits next to me, his eyes focused, conversationally clear, as he talks about a video game or his favorite movie or his skateboard. Just when I believe this is really happening, that he is really talking to me, his eyes get that gauzy look, and he says, “Happy?”

But I told Robert, “I think I’m OK.”

Robert said, “Good. This has been very informative.”

Then he emailed me the link to pay his consultation fee.

 

Now Peter, still standing on the playground grass, skews his gaze to catch the branches swaying in his peripheral vision. It’s too cold to stand around and do that, so I say, “Go on the swing.”

Peter smacks his wrist, annoyed that I interrupted his stimming. He says, “Happy?”

I say, “Blissful. Now go on the swing.”

Peter finally does his hopping jog toward his favorite swing. I lean against the metal door of the school. They are recessed within an alcove that shelters me from most of the wind. Sometimes I watch him from the car, but today there are pallets of bricks blocking the parking spots—the school is being renovated. Even if we are the only people in the park, I don’t like being unable to see him. I pull my hood farther down, blocking as much of my exposed face as possible. I take a deep breath and relax, knowing that I can put on my headphones and listen to the Spotify folder that I’ve labeled “Cheer Up.” I have at least forty minutes of music, usually the only quiet time I have alone.

Until someone walks across the field and we’re not alone. A man wearing a black bubble jacket rushes toward the swing set. He’s wearing a plaid hunter’s cap. The cuffs of his jeans are rolled high, and I can see his red socks, his pale ankles.

As I walk toward the swing set to protect my son, I notice a woman chasing after the man.

He stops a few feet from where Peter is swinging and pivots fast. She walks in front of him, clasps his cheeks in her palms, and leans close, talking intensely, and I realize that he’s disabled. Of course. Only disabled kids would go to a school playground on a freezing day. He is at least six feet tall, so she stands on her tiptoes to kiss his forehead, holding her lips against him longer than you’d expect, as though this is one of the few moments that she can steal some affection from, I’m guessing, her child.

Then she lets go.

He runs to the swing set, hopping and flapping his hands as if trying to fly across the field, the exact way my son did fifteen minutes before.

I turn to sit against the doors, but the woman waves and says something that the wind steals. As I walk toward her, I feel a tap on my shoulder. I turn, and her son is standing in front of me. Surprised, I say, “Hello.” He rocks, then presses his face into my shoulder, shoving me a step backward and inhaling a long, snotty breath. She says, “Samuel, stop it. Go on the swing.”

He lifts his head and moves toward the swing again, hopping and flapping, until he sits next to my son. Samuel’s mother stands next to me. She’s wearing a sheepskin coat, a matching hunter’s cap, and a wool scarf tied in a sensible knot that reminds me of an actor in a Victorian movie.

“I’m sorry,” she says. “He just wanted to smell you.” She watches as he grabs the swing’s chains and kicks off. “He does that to everyone.”

I say, “It’s OK.”

She shrugs. “He’s disabled,” she says, a familiar hint of sadness mixed with the absurdity of these strange moments.

Samuel lets out a long, winding moan. Peter laughs. I wipe spit, or snot, off my jacket and point to my son. “Really, it’s OK. He’s disabled too.”

Her whole body relaxes. I understand her relief. She watches me, then says, “I’m sorry, did your son go to basketball?”

I realize that I know her and her son. Deborah and I enrolled Peter in a special-needs basketball program four years ago after his teacher suggested that we involve him in more social situations.

Each of the “kids” in the program—the ages ranged all the way to twenty-two—was assigned a high-school senior probably trying to score a charity blurb on their college application. I had my doubts, but Peter liked to bounce balls. He was always racing across playgrounds and supermarkets. Maybe basketball would redirect those impulses.

All my son wanted to do was wind-sprint up and down the bleachers. All Samuel wanted to do was face-plant his nose onto his senior’s shoulder. When his mother walked over to pull him off, Samuel would shake free and search for a new shoulder to sniff. I’m not sure if they lasted the whole twelve weeks, but we lasted only three. Peter tipped headlong down the bleachers and bruised his forehead. We wrote a letter to his teacher explaining how he refused to interact (we didn’t mention the bleachers), and she wrote back, “Maybe next year.”

I tell Samuel’s mother, “We stopped going.” I think about sharing the truth, then say, “Work and stuff.”

She says, “I get it,” and I realize that she knows I’m lying. Of course she does. Our kids unknowingly remind us how they need to navigate through the world, and there’s very little room for much else. Then, maybe as a sign of solidarity, she says, “I just couldn’t keep him home. He was making me crazy.” She grips the flaps of her hat and yanks down, and I can’t tell if it’s out of frustration, or if she’s tugging another ounce of warmth from her hat.

I’ve also tried to keep Peter home, but part of his compulsive routine is going to parks every day. Nothing stops it. When he has school, we go after his bus drops him off. I’ve taken him to parks in spite of toothaches, stomach viruses, the flu, the deaths of my parents, and getting laid off from my job. It’s difficult sometimes to give so much forbearance to a child who has such limited ability to understand most things except for his routine. It’s not his fault. Still, what scares me is thinking about what happens if I get really sick. What if I have a stroke? What if cancer comes knocking, or my sad heart fails? What happens thirty years from now, when I’m sixty-seven? Will I be taking my forty-eight-year-old son to the park? Eventually I’ll be forced to place him in a home, which I know is right, but also feels like the ultimate betrayal. It’s hard to reconcile. He’s my boy. I can’t let him go.

Maybe that’s what I hate most about this guardianship. He’ll be eighteen, an adult, and it will get harder and harder to keep that blinding hope, a parent’s hope, that he’ll be OK. I have family members who say, “He doesn’t know what he’s missing.” But I know what he’s missing. He’s missing first dates, driving tests, college, first job, first love; even the hard things—breakups, shit jobs, the loss of relatives. The quiet passing of time. He’s missing it all. So I’m perpetually grieving these losses for him. Each missed milestone is a new grief, a spiraling mourning that he’s unaware of, which makes it more painful.

Samuel’s mother asks, “Are you OK?”

I say, “In what way?”

She says, “You’re crying.”

I wipe my face and say, “That’s embarrassing. Like you said, long day.”

She gives me a glassy-eyed nod that says, I know. Oh, do I know.

Trying to shake our awkward moment together, we turn toward our children.

They’re swinging out of sync with one another: Samuel, the older, pushes forward, laughing, as my son swings back. Samuel is staring at his feet while Peter skews his head to one side, catching a glimpse of the sky.