Poems and a Loss of Words

Published by Jeremiah Blue on Oct 29, 2019

"I made myself a snowball," Sandra presents to her son Mason, rehearsing a Shel Silverstein poem he will recite for his third-grade class.

Standing as tall as he can at just under four feet, his fingers fidget through his short dark hair. Mason takes a moment to clear his mind before he repeats the line.

"Good. Now, As perfect as could be…" Sandra continues.

"As perfect as could be," his tiny voice still a little unsure of itself.

"How about two lines this time?"

"Sure."

Straightening his back and pushing out his chest, trying to make himself feel confident, Mason clears his throat. His hands are clasped behind his back, wiggling with nerves. He takes in a deep breath as he stares at the ceiling of their living room, trying to remember two whole lines in a row.

Slowly but carefully, he recites, "I thought I’d keep it as a pet…And let it sleep with me."

Sandra contains her bubbling pride but lets out a burst of praise.

"Perfect. Nice job!"

With a quick smile, Mason’s face falls back to looking worried again, but not about remembering the lines of the poem this time. His question is much bigger than that now.

"But I don’t have to do it in front of the whole class, right, Mom?"

"Nope. Not at all. It will be just you and the teacher."

***

The rest of the kids in Mason's grade are required to recite their poems in front of their entire class, usually four to five times a year. Sandra understands her son all too well, and she knows that reading a poem in front of the other students will not be an option.

Four years earlier, Mason had completed an intensive feeding therapy program and been cleared to have a feeding tube removed from his belly. His parents began taking him to a counselor out of a concern for his mental and emotional health. Pursuing a diagnosis led Mason to be regularly seen by an array of doctors, undergoing constant testing and assessment. His parents correctly intuited that so much pain, discomfort, and continuous exposure to medical evaluation would take a toll on such a young child.

Once Mason began kindergarten—his first full-time school environment—it became clear that his health challenges were changing and evolving. He was free of the feeding tube and able to eat a limited amount of foods reliably without significant issues now. But his parents could not have anticipated the influence it would have on his socializing and functioning at school. It became clear very quickly that Mason was living with a constant sense of fear and physical pain. At first, his teachers and counselors assumed he might have autism, because he was too afraid to make eye contact or speak to anyone but his mom and his sister, Milana. Even talking with his dad, Mike, became difficult for Mason. He would often communicate through his mom. Eventually, a therapist diagnosed Mason with a disorder called selective mutism. The condition is a complex childhood anxiety disorder characterized by a child’s inability to speak and communicate effectively in select social settings. Mason found himself unable to communicate with teachers or other students at school, even when he was in pain. His co-existing diagnosis of cyclic vomiting syndrome, a part of the pediatric feeding disorder umbrella, often causes him to vomit for no reason or to vomit without being able to stop. It left him in chronic discomfort and anxiety. Still, he was too afraid to communicate with the teacher.

While in class one day, he knew that he was getting sick and needed to find a place to relieve himself. The medication he takes for the syndrome helps manage the symptoms and discomfort, but it doesn’t always work. A trash can sat not too far from his desk in the classroom, but fear was paralyzing Mason. He didn’t want anyone to know he was sick—a part of his desire to go unnoticed, to not draw attention to himself. Without being able to control the episode and unable to bring himself to tell the teacher, he instead threw up on his desk, in the middle of class time.

The paralyzing anxiety of selective mutism stops Mason from communicating about even his most urgent needs.

***

The day after practicing lines with his mom, Mason stands in front of the teacher to recite his poem. His arms are tightly strewn behind his back again, hands clasped together and turning over one another, legs visibly shifting from one to the other. The nerves from last night’s rehearsal are still real—even worse than before, now that Mom isn’t around. And he has to recall more than just the two lines. It's the whole thing this time.

"Ok, Mason, whenever you’re ready," the teacher says to him in a quiet room, empty but for the two of them.

Mason does not respond.

His eyes wander the floor. Anywhere but in the direction of the teacher. Avoiding any eye contact.

Finally interrupting the silence and Mason’s meandering gaze, she realizes her mistake. She and Sandra spoke about this dynamic and had agreed to what could work best for Mason.

"I’m sorry, Mason. I forgot to turn around."

Pivoting to face the wall, away from Mason, she is no longer looking directly at him. With more confidence this time, he begins the first line, "I made myself a snowball…"

All the doctors and therapists and nurses, with their testing and poking and prodding, have left Mason uncomfortable with adults, mainly when they focus attention on him.

With the teacher’s back turned and her gaze diverted from him, Mason finishes the poem, reciting each of the lines, naturally and fluidly.

"Nice job, Mason," the teacher affirms. "You know, you’re really good at this."

The expression on Mason’s face is still tight with nerves, but a small smile forms and his eyebrows prick upwards with a hint of more confidence and relief.

"Thanks. Maybe someday I’ll do it in front of the other kids."

***

The accommodation for the poems is only one part of the many arrangements that Sandra and Mike have to make for Mason so that he can attend school. A month before each school year begins, Sandra meets with counselors to talk about the unique facets of Mason’s personality, medical history and conditions. They also discuss what to expect of how this can influence his interactions with other teachers and students. Sandra will then meet individually with the teacher, explaining the details all over again.

One year, she chose not to reveal all of Mason’s medical history or symptoms with the teacher. She wanted to leave room for him and the teacher to develop their relationship and bond together. Never again. The teacher’s lack of understanding resulted in regular punishment for Mason. Punishment for when he wouldn’t speak or wouldn’t sit with the other students, or when he stayed in the back of the room because he was silently enduring sickness and pain again.

The ripples of Mason’s health extend beyond his experiences at school and with food, beyond his anxiety disorder and his syndrome. His big sister has also struggled. Milana, older by two years, didn’t understand why Mason gets so much attention and special treatment.

At a family dinner, Milana decided it was time to speak with her parents about it. She turned to her mom and pointed out that Mason was using the iPad at the table.

"That’s not allowed, Mom. I couldn’t do it," she pointed out with diplomacy and wit. "Mason even gets to stay up late sometimes. It doesn’t seem fair."

Sandra and Mike have been forced to improvise around Mason’s evolving health challenges and their management of it. They have mostly settled on no longer prioritizing a diagnosis over trying to be happy and thrive, in the absence of answers they have long and busily pursued. They had initially hoped a diagnosis would be the key to finding treatment and moving on. Instead, now, they focus on the day-to-day, the attempt to be as confident and comfortable with their understanding as parents. They are continually refining their ability to morph, learn, and adapt on their own to the new and compounding challenges that arise. Sometimes, that means their approach to parenting with Mason means different things than it means for the more independently functioning Milana. But Milana still feels it in her life—and feels it deeply.

At the dinner table that night, with conviction and clarity, in front of the whole family, she asked her parents a straightforward and emotional question.

"Why do you love Mason more than me?"

It’s a question that pierces deep into a parent or anyone who cares and loves for someone as profoundly as Sandra and Mike loves Milana and Mason, equally.

Mason faces the challenges of pediatric feeding disorders like cyclic vomiting syndrome and the anxiety disorder of selective mutism. But his entire family is intimately entwined with the ongoing and ever-changing circumstances they face.

***

By the end of the school year, Mason has had the chance to recite a few more poems. Just himself and the teacher, no classmates. The teacher’s back always turned so he can manage his fear and anxiety.

For his final recitation of the year, Mason and Sandra are practicing again in their living room. He chooses a little longer poem this time, something slightly more challenging than his first attempt. His confidence is growing. And the rehearsal with his mom goes as planned like it always does. Nothing has changed. They learn the lines, repeat them to one another, and Mason gears up to present with the teacher. Sandra has no reason to believe anything is different this time. Neither Mason nor the teacher mention any changes.

But that is not the case. Mason comes home with a report card from his teacher. Sandra opens it up and is happy to see that the grades are positive. She catches something in the remarks about his poem, though: Mason read the poem in front of the entire class.

Astonished and initially upset that the teacher would alter the agreement the two of them had decided on before the year started, Sandra asks Mason about it.

Her face shows a clear sense of confusion and concern.

"Mason, you read your poem in from of the entire class?"

Mason does not bat an eye. He looks at her, with all the innocence of a small child—Mason's innocence even more pronounced by his quiet and passive demeanor. But his response is plain and clear.

"You thought I couldn’t do it, but I could do it. So, I did it."

Sandra is shocked. And then, quickly, prouder than she could have imagined being at this moment.

She had been mowing the proverbial lawn for Mason for so long—preparing special meals different from the rest of the family, or meeting with countless teachers and counselors, or fillings out endless forms, or directing and monitoring Mason closely for his safety and comfort. And now he has joined her in pushing the mower across the lawn. He understands the need to challenge himself and try new things.

So, he did.

In the same way, years earlier, following a session in intensive feeding therapy, the family was encouraged to try new things slowly. They decided on going for pizza, a family favorite. Mason had a fear of foods he described as "wet." To him, a saucy and cheesy pizza was certainly wet. But like the therapist and his parents encouraged him, Mason challenged himself and tried it. Then, promptly gobbled the entire piece down. No issues.

***

A village has been assembled, by Sandra and Mike, to participate in Mason’s life and health. And Mason certainly has a hand on the figurative lawn mower, helping forge his path through the dense and often murky landscape.

But there is no doubt that a great deal of mystery and angst accompanies Mason and his family. In the last three years, since he started school, a whole new world and set of challenges have evolved. A series of unexpected things. His parents learn each day, each month, and each year anew. Doctors still offer minimal clarity on the disorders or treatments related to pediatric feeding. Not to mention rarely providing perspective on the traumas that result in a child. Or their families and communities.

Sandra, Mike, and Milana were happy to hear those words, "I could do it. So, I did," from Mason, and to see him gobble down one of their family's most celebratory foods. And they perpetually wait to understand how their lives and health will change and evolve. They are poised and on alert for how to manage the continuous novelty of it all. Hope and anxiety, good days and bad days, victories and failures—these are the things that define their daily lives. They remind themselves to be patient and kind because everyone has a story.

But Mason and his family live a story with far more mystery and unanswered questions than the average family. Clarity on treatment and diagnosis for Mason is most often silent. An utter loss of words or the ability to communicate about pain and paralyzing anxiety.

Much like the absence of words Mason experiences in his young life.