king of the creek

by Beth Deutsch

One Friday night in the winter of our grief, David and I curled up in front of a fire for pizza and a movie. Although this winter had been particularly hard—its cold colder, its gray skies grayer, its shorter days seeming cruelly longer—that night I was feeling pretty good. I lit the Shabbat candles, said blessings over the bread (or pizza, in our case) and wine. I had chosen the movie Ezra because a friend had recommended it, but I had no idea it was about the struggles of a young boy on the autism spectrum. The beautiful film strikes too close to home and by its end I am heaving in my husband’s arms. Asking David the same questions that I’d asked throughout our son Henry’s childhood: Why was life so hard for him? Why did he have to suffer so? A question that, I now realize, was always directed at God rather than any mere mortal. Including me, my husband, or our team of doctors and therapists. A question that Henry himself would ask me by the time he turned thirteen.

But even as I sobbed, I recognized that these tears were different. For the past six months I’d been mourning the death of our twenty-six-year-old son. Now every fresh tear that fell was for the death of our child. I wept for each of his childhood struggles. I wept for each of his damn diagnoses, which he collected over the years as easily as seashells at the beach. While he was alive, I never allowed myself to wallow in the muck for long. I was too busy advocating, finding resources to help him. But that night I wept for every hour and minute spent, like deposits, into our son. I wept for every IEP school meeting, from kindergarten through college, where I sat with his team reviewing and adding to what would become a never-ending list of accommodations that never did level the playing field like they were supposed to. I wept for every therapist appointment, every tutoring session, every phone call made, every coach hired, every private tennis, music and art lesson, every sleepless night I laid beside him, rubbing his back, telling him it’d be okay. And it suddenly occurred to me: Ever since he was a young boy, he was determined to fit into a world that, in hindsight, never could fit into his.

But it wasn’t always so. Not until age six.

At age two, we enrolled him in half-day preschool at our synagogue. While other toddlers scribbled, Henry drew his first face, complete with eyes, nose, mouth and hair. “An artist in the making,” I thought.

By age three, he asked, “Who’s God,” and I marveled at his inquisitive soul. David bequeathed his love of nature to Henry and bought him Audubon books on butterflies, fish and birds. They came with laminated charts, which Henry clutched during each outdoor expedition, memorizing each one. “Perhaps he will be a park ranger or fishing guide,” I thought.

By the time he turned four, his teachers told us that his mind went to very interesting places. Later, I wondered if that was their nice way of trying to tell us that he was different from other kids.

One day while volunteering at the preschool, I passed his Pre-K teacher, a middle-aged lady with a sour-puss face. I casually asked, more out of politeness than anything, “How’s Henry doing?”

She stopped for a moment and said, “Same as always. He’s not participating or socializing. He doesn’t raise his hand. He draws pictures of airplanes, helicopters and fish incessantly.” And then she went on her way.

I stumbled into the director’s office and burst into tears. “There’s something wrong with Henry,” I cried.

She assured me that Henry was fine and later chastised the teacher.

That autumn, Henry couldn’t wait to start kindergarten. I made him stop for a photo before he leapt into our minivan. It is his expression, so filled with promise, that captivates and later breaks my heart. In the photo, he’s standing with his back pressed against our mudroom wall, gripping his Spiderman backpack. It must have been raining because his face peeks out from underneath a red hood, which is zipped up tightly, adorably, all the way to his chin. His grin stretches ear to ear, and his eyes are lit up with eager anticipation. Even as I stare at the photo now, I can feel the energy radiating from him. And I remember feeling it, too as I walked him into Reed Elementary, certain he was about to take off like all those airplanes and fish he incessantly drew!

But soon he suffers.

I volunteer in his classroom every other week to work individually with kids on their reading. His teacher, Mrs. Reisenleiter, has set up a table in the hallway. As she delivers instructions, her speech is soft and hypnotic. I understand why Henry loves her: I could listen to her talk all day long. Her bin of books is sorted by their level of difficulty labeled one through six. She hands me a chart with each student’s reading level, which she reminds me is confidential. Students are to choose a book according to their level and then read it to me. If they get stuck on a word, I should give them clues, either phonetic or by pointing to a picture in the book. When they’re finished, I am to ask simple questions to gauge their reading comprehension.

Over the next month, level twos move up to threes, level fours to fives and so on. Only Henry remains stuck on level one. How could this be? We’ve read to him since birth; he loves books! Every child is progressing but mine. I become envious of five- and six-year-old children. Never did I imagine that I was capable of such a thing.

During October parent-teacher conferences, Mrs. Reisenleiter begins with all the positive things about Henry: his immense knowledge of birds and fish, his creativity, his kindness. She adds that he is well-liked by classmates. She is dressed like Mother Earth herself: long skirt, crocheted sweater, feathered earrings. When she begins to tug at one earring and says, “I do have some concerns,” I lean forward in my kindergarten chair. She goes on to say that she’s noticed perseverating behavior. For example, when Henry has a worksheet to complete, rather than sit at his desk, he walks over to the pencil sharpener and sharpens the tip of his number two pencil repeatedly. With redirection, he will return to his seat but then returns to the sharpener two or three more times. So, she has taken to folding his worksheet like an accordion and instructing him to complete only the top row but even then, she must redirect him several times before he is able to complete it.

She dabs at a tear, and her voice breaks as she apologizes for getting emotional. I brace myself. There’s something wrong with Henry! But then something unexpected happens. She says that she suspects the root cause is inattention. That for years she wondered why she couldn’t finish thick books like her friends or why she couldn’t complete her work until seven o’clock when most teachers left at five. Then, a few years ago, she was diagnosed with attention deficit disorder. Now she takes one pill each morning and finds that it really helps.

I am giddy with relief that he’s solved the puzzle. ADHD must be what’s affecting Henry’s inability to read. I know lots of people with ADHD! At full tilt, I begin to tell her what we see at home. If we ask Henry to do three simple things—grab jacket, water bottle, lunch—he will always forget two of the three.

David adds, “We’ve taken to saying eye contact, Henry to ensure he’s listening or ask him to repeat back what we’ve said, but even then, he forgets.”

She nods knowingly and says, “Right now my main concern is to preserve his self-esteem. Soon every student must present a book report to their class. Henry is excited about the bird book he has chosen but because he cannot read it, I’ll work with him on the report. And when he presents, I’ll sit beside him and prompt him if necessary, so that he feels successful.”

I leave feeling concerned but mostly grateful that Henry has a tender-hearted teacher.

But as the week wears on, I can’t shake a feeling of sadness. Something about the book presentation feels like a farce, as if he must pretend to be something he’s not. Then I chastise myself. Think positive. At least he’s happy at school. For the first time, I am grateful for his spaciness which I believe protects him, making him oblivious to the chasm that lies between him and his classmates.

But of course, I am wrong. Kids always know exactly how they compare.

One day, not long after, Henry gets off the school bus, slams the backdoor and drops his backpack on the mudroom floor. Before I can offer him a snack, he places each hand on either side of his head, pressing hard as if to squeeze out an answer, and says, “Mommy! It’s like I have a germ on my brain when it comes to reading! Just reading! Why can everyone read but me? Why can Nate read level six books, and I can’t even read the baby level one books?” Nate, a soft-spoken bespectacled brainiac, is Henry’s best friend in class.

A burn runs through me. My child knows exactly how he compares. And he is suffering. I stumble for a moment, unsure of what to say. Henry stares up at me pleadingly, waiting for an answer. Why can everyone read but me?

I stare back into his eyes, which have been robbed of all their eager anticipation from that first day of school. I consider giving him a pep talk: Don’t compare yourself! You’ve so many other talents! But I’d volunteered at school and seen his struggles. They were real and we both knew it. I decide to tell him the truth. I squat so we are eye-to-eye and say, “I don’t know why reading is so hard for you, Henry, but I promise to find out and get you the help you need.” I tell him that reading was also hard for my Uncle Larry, whom I knew he adored. Then I take him in my arms and say, “Eventually, you will learn to read any book you want, I promise, just like Nate.”

And that was when my heartbreak began. The first of many over the course of his life when he would ask, Why, Mom? and I would stand before him with no good answers to give.

David and I meet with Mrs. Reisenleiter and the school counselor who explains that the State of Missouri doesn’t test for learning disabilities until first grade. In 2003, the belief is that any delays in kindergarten may be purely developmental. I am hoping this is the case, even though Henry, born in September, is one of the oldest. We leave with two things: a document with a remedial reading support plan and a list of neurologists. By the time Henry gets an appointment and is diagnosed with ADHD, kindergarten is almost over.

Summer is filled with more specialists. More diagnoses: auditory processing disorder; speech deficits. I am completely overwhelmed. How could Henry, a chatterbox since age one with no speech delays, possibly need speech therapy? And auditory processing, what does that even mean? I ask the neurologist who says (perhaps because he doesn’t test for it) that auditory processing disorder is a waste-bin diagnosis. So I decide, without consulting anyone, that his speech deficits are also waste-bin diagnosis.

Years later, when Henry tells me how anxious he is at parties, whether trying to make conversation with friends or even relatives, regret stings me. I look at that young mother and think, What in the world made you think that you knew more than a speech pathologist? But, at the time, I could only handle so much.

The neurologist wants Henry to try ADHD medication in summer so that by the time first grade begins he can benefit from it. The process of landing on the right medicine, he says, can take some time. But he neglects to warn me that the process can be sheer hell! Our normally animated son becomes a zombie. Rather than splashing in the swimming pool with his cousins, Henry sits on a chair, staring off into space while sucking his thumb, a habit he’d quit two years before. One medication kills his appetite; another interferes with his sleep. Despite the panic building inside me, we keep trying. Henry never once complains.

I know we’ve landed on the right medication when his first-grade teacher, Mrs. Fields, a seasoned veteran with an easy laugh, says that she thinks Henry’s had a breakthrough. For the first time, he is completing simple worksheets on his own. I am overjoyed and think a similar breakthrough with reading is on the horizon. But the medicine only helps him focus; it does not demystify the hieroglyphic letters before him.

I attend a school coffee. Another mother says that she’s worried about the stress her daughter carries and I think I’ve found a companion in my suffering. But when she casually throws in the word “gifted,” I want to punch her in the face. Stress? What does she know about stress?

Around the same time, Henry is tested for learning disabilities. I’ll never forget the robust enthusiasm of the administrator delivering the results. She gushed forth, as if bestowing a first-place medal around our necks. “The good news is that—while some kids are borderline—Henry is a slam dunk for reading, writing, and math disabilities!” Her face lit up like a Bic lighter.

My stomach flipped. Three learning disabilities? Reading, writing, and math? These lumped atop of three disorders: ADHD, auditory processing, and speech? (Turns out I couldn’t easily disregard any diagnosis.) At seven years old, he already had a file six inches thick.

Thankfully, Mrs. Field, like Mrs. Reisenleiter, has a soft spot for Henry. During a field trip to the Missouri Botanical Garden, Henry does not want to leave. That morning he’d filled the pocket of his cargo shorts with quarters. I needn’t ask why. I knew it was to buy fish food from the machines that line the bridge at the Japanese Garden. Each time we visit, I have to practically drag him away from its pond teeming with turtles, frogs, tadpoles and koi the size of baby dolphins. Koi that clearly are not in need of more pellets.

Mrs. Field phones to say that she hated to drag Henry away—he’d just begun to dole out quarters to his friends when it was time to go—but the buses were waiting, so she promised him a trip back to the garden with a classmate of his choosing. We set a date and a few weeks later, on a Saturday, no less, she takes them.

One glorious day in May, Henry came home from school waving a blue flyer at me. “Read it Mom!”

SAVE THE DATE! CREEK DAY: MAY 1ST

Pack water shoes, change of clothes,

lidded jars & nets for exploring!

Parent Volunteers Needed

Deer Creek flows behind Reed Elementary, but students are only allowed to play in it on this one special day. I volunteer to help, mostly because I want to share in my son’s glory. If anyone’s going to excel at catching critters, it’s Henry.

The day arrives. I’m piddling in the kitchen around seven a.m., enjoying the quiet before the kids are awake, when I hear Henry’s voice bellowing down the front staircase.

“MOM! Do you know where my water shoes are?”

Which naturally wakes up Audrey, age two, and Marcus, age five.

And I think, “There goes my peace!”

Preschool begins at nine, so I typically let Marcus and Audrey sleep while I get Henry ready. I’ve found mornings to be much more palatable if I’m not pulled apart like play dough in three different directions.

Audrey is eating Cheerios from the tray of her highchair when Henry appears in record-setting time. He wears a Cardinals Baseball t-shirt and matching ballcap, which make his ears stick out, just a tad, on either side. In one hand he carries a net, in the other a lidded plastic jar. “Mom, will you drive me? I want to go early.”

Most mornings, he takes the bus with the other neighborhood kids. He hasn’t asked to go to school early since that first day of kindergarten. But neither has he, I suddenly realize, ever once cried, refusing to go. There is no way I’m going to say no to him.

I pop Eggo waffles into the toaster, slather them with peanut butter, and microwave breakfast sausages. I divide everything equally amongst three paper plates. After everyone is buckled in car seats, I rush back inside and quickly grab three juice boxes, the paper plates, then hand everyone their breakfast. And we’re off!

When Henry’s kissing me goodbye, I grab a Huggies wipe (a staple in my minivan) and wipe the peanut butter from his cheek. He grimaces and I say, “Love you, see you soon.” Marcus and Audrey, still in their pajamas, wave goodbye.

Ten minutes later, we are back home, getting dressed, brushing teeth, packing lunches, filling sippy cups. Then back in the car, heading west on Ladue Road where I drop them at Temple Israel’s Deutsch Early Childhood Center, turn around and head back east to Reed Elementary where I arrive breathless.

Mrs. Field steps into the hallway to give her volunteers instructions. Her eyes twinkle and she cups one hand to the side of her cheek, like she’s telling us a secret, then deadpans, “Basically, your job is to make sure that no child drowns.” Which cracks everyone up, including herself. She slaps her thigh. “I’m kidding! The creek is only about six inches deep. But please, keep them safe. Mostly from each other!”

Three first-grade classes line up and make their way silently through the halls. I am always amazed at how teachers maintain control. I can’t even control my own three children, let alone an entire class! As soon as the metal doors open, the silence breaks with the roar of seventy children running to the playground. The weather: a perfect seventy-degree, sunshiny day.

I keep my eyes on Henry, who is strutting like a quarterback. I overhear him talking fast and with authority to Nate and Margaret about the different creatures—frogs, turtles, tadpoles, minnows—that live in the creek. I smile. In the classroom, he is so quiet, using every ounce of his energy to focus, that at times I hardly recognize him. But today he is in his element. I look at him and think, “This is my son.”

Not long after, a whistle blows. “Mrs. Field’s Class, come line up!” She counts heads then beckons them with one hand. “C’mon! We have thirty minutes to explore!” The sound of twenty-something kids sloshing through water. I stay within earshot of Henry. My hunch is that he will be the first one to catch something.

But another voice, not Henry's, calls out, “Got one!”

My heart dips, if only a little.

Over the next ten minutes more voices shout, “Crawdad! Minnow! Tadpole!”

I am stymied and wonder, What the hell is going on? But I see Henry running to classmates with as much excitement as if he’d caught the critter himself, so tell myself to loosen up. I offer a silent prayer, please let him catch something. I try not to hover. I trail behind but never lose sight of him. I feign interest when other kids show me their critters, but in truth, I cannot share in their joy.

Downstream, I see Henry hunched over, sifting the water with his net, like Sherlock Holmes. I hear “Got one!” and run towards him, but in the next instant he says, “Darn, missed it!” More misses. Each time I brace myself, expecting to see him teary-eyed, but his voice remains filled with excitement.

Soon, classmates have caught their fill and begin to leave the creek. Henry seems blissfully unaware that the clock is ticking. Mrs. Field and I exchange a look of worry. She mouths the word please and looks towards heaven with clasped hands. She knows he needs this win. Minutes pass. Nothing. I begin to beg. Please, please, please God, I know in the scheme of things it’s trivial, but PLEASE let him catch something!

“Five more minutes,” Mrs. Field announces to the thinned-out crowd.

Henry is intently scooping, and I wonder if he even heard her. But I sure did. And now I’m getting pissed at the universe. My child has endured two years of suffering, two years of feeling lesser-than, two years of waiting for letters and numbers to make sense. He can barely read a three-word sentence, for God’s sake! I’m having a real pity party, choking back tears. Simple hopes dashed once more. I curse silently. Goddammit, can you give this kid a break? I kid myself that I am addressing the earthly world; never would I be so bold as to curse God to His face. The irony that I have just broken His third commandment, Thou shall not take the name of the Lord Your God in vain, completely escapes me.

And then. mercifully, the voice I’ve been waiting for.

“Got one! Quick, come look!”

Just like that, I breathe again. I can feel my face flush before my God. I’m sorry for acting like a spoiled child. Thank You.

I go to Henry. His hat has fallen off and his clothes are soaking wet, but his face is glowing. Three friends gather around. He extends the jar, “Look, Mom!” In front of me swims the cutest damn tadpole I’d ever seen. I could kiss its slimy mouth!

The whistle blows three times, our signal to go. But Henry gazes into the jar and begins to point out the tadpole’s intricacies: its pattern of spots, translucent tail fins, where its legs will sprout.

I remember my chaperone duties. “Whistle blew, time to go!”

Henry wades downstream. Margaret, Nate, and Jess, normally all rule-followers, follow him. It gives me great pleasure to see their devotion. I realize I am failing in my duties as chaperone and follow in their wake. Just as I’m about to say, “Henry, first-time listening,” like we do at home whenever he’s not listening, Mrs. Field appears. On one hand, I am slightly embarrassed of my ineptitude but on the other hand, I’m relieved knowing that she’ll be able to get these kids to do what I cannot.

She stops to ooh and ahh into Henry’s jar. Then with a wink at me and a pat to Henry’s back she says, “Mrs. Donnelly’s class has been patiently waiting. Time to go eat hot dogs!”

Only then does Henry say, “Please, Mrs. Field. I need to release him. It’ll only take a minute.”

She sighs and softly says, “Okay, Henry, but do it quickly.”

Henry dunks one hand into the glass jar and grabs hold of the tadpole, then hands me the empty jar. I am afraid the tadpole will squirm free, but he cups it between both hands and whispers, “It’s okay, lil’ guy.” Then he submerges both hands underwater and begins to sway them back and forth, the way his Daddy taught him to orient a fish before releasing it. Suddenly, his hands spring open and he says, so sweetly that it makes my heart sing, “There you go, little guy. Go on now, swim back to your family. They’re all waiting for you.”

After Henry died, we received hundreds of sympathy cards. One in particular I find myself returning to. Winter has passed; the weather a perfect, seventy-degree, sunshiny day. I take a seat in our backyard beneath a redbud tree, pull out the note, and begin to read. I am reminded of my son’s beauty rather than his suffering. A smile spreads across my face. The note is signed: “He will forever remain King of the Creek to me.”

About the author:

Beth Deutsch graduated with a Bachelor's Degree in Journalism from the University of Missouri and is currently a student of non-fiction in Pacific University's MFA program. It was through fellow students at PU that she first heard about sneaker wave. Beth is a mother of three and resides in Saint Louis, Missouri, with her husband and 110-pound dog Theo. On any given day Beth can be found jogging in Forest Park, bird watching in her backyard, or writing on her laptop. Whatever she happens to be doing, there is scarcely a moment she encounters that does not bring to mind memories of her beloved son Henry. Now, just one year later, she writes of a mother's longing for her son. And in this way he returns to her.