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Guest Posts, parenting, Special Needs

The Art of Acceptance

March 15, 2021
jessica

CW: This story contains outdated, culturally insensitive references to individuals with developmental disabilities. Prior to the 1990s, the term ‘’mental retardation’ was used to describe individuals diagnosed with low IQ.

By Cathy Shields

“Your daughter Jessica is profoundly retarded.”

The string of words yanks like an invisible chain, back to that moment in 1988 when the doctor made his decree. Those five words launched a journey I struggled to navigate for twenty-four years. Today I face what awaited at the end of my passage.

I stand in the middle of Jessica’s bedroom. Everything appears the same as yesterday; the same, but different. An assortment of posters hangs on the wall above her bed, most of them, images of the band, the Backstreet Boys. In one photo, the five boys lean forward, arms linked. They smile, and for a second, I imagine they can hear me. I whisper the words like a well-kept secret.

“We moved Jessica to a group home today.”

I turn my attention to the posters Jessica told me to bring. My fingers tremble as I grab the edges. I wonder whether my heart will crack into a million little pieces, like the broken keepsakes she has refused to throw away. Jessica often followed me around the house and repeated the same questions. “Mommy where we go today? Mommy, what we do? Mommy? Why you no answer me?”

What if we made a mistake moving her? Thoughts teeter like a seesaw. We should have waited. What if she doesn’t like it? What if she thinks we’ve abandoned her?

“You’re making that face again.” My husband Chip stands in the doorway. “I can tell what you’re thinking. The staff at the group home said they’d call if there were any problems.” He folds his arms across his chest. “We were supposed to wait a few days. You’re going to call anyway, aren’t you?”

I shrug. “Sorry, I have to.” I grab my cellphone and dial. Two rings later, Nina, the house manager, answers.

“Hi, it’s Jessica’s mom. I know you advised us to wait a few days to call, but can I speak to her?” The words leap from my mouth as if they possess a mind of their own.

“Yes, Mrs. Shields, but we want her to adjust to the new environment. Can you wait? I promise she’s fine.”

A long silence follows. I’m not sure whether to wait or hang up. When I don’t respond, Nina sighs. “Okay, I’ll get her.”

Seconds tick by until I hear Jessica’s voice.

“What you want Mommy? When you come here?”

“Um, I’ll come soon. In a few days.”

“You forget my posters? You say you bring them.”

“No, I didn’t forget. I started taking them down.”

“Okay Mommy. I love you. Bye.”

I hang up the phone and stifle an urge to cry.

“So do you feel better now?” Chip uncrosses his arms, a tiny smile peeking through his graying beard. His green eyes are like beacons calling me home. “What are we making for dinner? It’s getting late,”

“I’m not hungry,” I murmur. “Go ahead and grab something. I might be a while.”

“Are you still worried? Nina just told you Jessica’s fine.” He waits for me to respond and when I don’t answer, he says, “Okay, fine. Do whatever you have to. I’ll be in the kitchen.”

A rumpled pink bedspread covers Jessica’s mattress. I sit, pull her pillow close to me, and inhale. Faint traces of her vanilla-scented shampoo remain. Chip doesn’t understand. He didn’t spend years worrying about how to make Jessica normal. It seemed easy for him to accept. Why couldn’t I?

Stacks of empty video boxes, loose CDs, magazines, and crumpled pictures are scattered over the top of Jessica’s nightstand, and when I straighten the hodgepodge of items, I spot my favorite picture, a photo of me and four-year-old Jessica. In the photo, we smile at the camera. Her saucer-like blue eyes sparkle with childlike innocence. Silky bangs frame her face and her blonde hair cascades like a waterfall of curls. People often said she should be a child model. If things had turned out differently, it could have happened. My finger traces the curly lines of the embossed silver frame. I had insisted Chip take that picture. To mark the occasion.

I slide the photo from the frame and turn it over. In blue ink, I had written the date. April 5, 1988.

Dr. Morgan, the neuropsychologist who headed the program, met with us. He made his pronouncement. My mind reconstructs the scene. Snippets of details; the cold room, the red leather chair, the click of a pen, the tears. The meeting ended. Chip clasped my hand and led me away from the shards of broken dreams. I remember the way Dr. Morgan rose from his seat as I swept past him and headed into the hallway. For one split second, my mind had conjured an entirely different scene. What if I could change the ending? Then Chip opened the door to the children’s activity room. Jessica saw us. Her eyes lit up. She pointed and beamed at us. “That my Mommy.”

The woman beside her, clad in pink scrubs, laughed as Jessica tugged on her hand. “I’m Carol,” she said, “one of the nurses here. Your daughter is so sweet and adorable.”

A second nurse sidled up and stroked Jessica’s hair. “She certainly is. She’s angelic.”

I nodded, barely able to look at Jessica. Perhaps I would never see her the same way again. What then?

Carol touched my shoulder. “Oh, please don’t cry. So many kids come to our center, but your daughter is special. Perhaps she arrived in your life to help you. They say the Lord works in mysterious ways.”

I hated it when people said that. It sounded so condescending. Jessica held up both hands. “Up, Mommy. Pick me up. We go home?”

“Yes. Daddy and I will take you home.”

I remember how I held Jessica, pressed my face against her cheek, and inhaled the fragrance of her skin. A precious, heartbreaking moment. How could I live with the fact there was no cure for her irreversible brain damage?

*

Chip pokes his head through the bedroom doorway. “Didn’t you hear me call you? You’ve been in here for over an hour. Dinner’s ready. Come and eat.”

I steal one last glance at Jessica’s photo before I return it to the nightstand. It might take the rest of my life to learn the art of acceptance.

Cathy Shields is a retired educator with an M.S. Ed in Exceptional Education. She is a member of the South Florida Writers Association and a member of the Memoir Writers Circle. Her short stories have appeared in Ariel Chart International Literary Journal, ’45 Magazine Women’s Literary Journal, Flash Fiction Friday, A Story in 100 words, Spillwords and Variant Literature. Her work “The Phantom Ovaries” was nominated for the Pushcart Prize in 2019. Cathy resides in Miami, Florida where she and her husband raised their three grown daughters.

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A book about tears? Sign us up! Some have called this the Bluets of crying and we tend to agree. This book is unexpected and as much a cultural survey of tears as a lyrical meditation on why we cry. 

Pick up a copy at Bookshop.org or Amazon.

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

Guest Posts, parenting, Special Needs

Touch Down

January 13, 2017
down

By Angela Dawson

Larry was making the most of his freedom.

After three hours cooped up and airborne, he relished the opportunity to stand on his own two tottering feet. My husband queued at the hire car counter; Larry wandered wherever he fancied. We took turns, his siblings and I, being his shadow. We held a hand, or let him roam free, always one step behind.

As I scurried after him, I caught sight of John and his mother. We’d met on the plane earlier. Inveterate travellers, they’d spent seven weeks in Australia at the start of the year. They’d feared the marathon flight—he gets terrible pain in his back if he sits too long—but being chair-crammed for twenty-four hours troubled him none.

Each year, they visit The White Isle to spend time with the mother’s cousin who, decades before, came for a spell, fell in love and married a native Ibicencan. After his death several years ago, a Brazilian captured her heart. The cousin and the Brazilian used to run a farm, but now cherish the space and the slowed down pace. It sounded idyllic. Continue Reading…

Autism, Guest Posts, Special Needs

The Seventeenth Ring

October 6, 2016
autism

By Jayne Schroeder

His small hands, the only notice of what was to come; tiny fists clenched tight and shaking from the sudden storm of rage brewing inside. The yelling, incoherent screams of anger. His hands, now unclenched, his index finger waving wildly, signifying blame to an unknown source an arm’s length away. I wonder just how bad it will get this time. How long will it last and how will it end? I complete a quick scan of the room looking for possible items in his path I fear cannot be replaced. I catch sight of his iPad and my laptop, and I send a silent plea to the Universe. I make a mental note of the blue cup of water on the coffee table, but that’s the last thing I’m thinking about. It’s just water.

My third child was born with an extra twenty-first chromosome on Earth Day, seventeen years ago. It’s not lost on me that his love for every animal and human on this planet is given equally and unconditionally. There is an innocence so breathtakingly beautiful with the living out loud approach he takes in life. He is not self-conscious; the polar opposite of most typically developing teenagers, what you see is what you get. Contrary to the most popular of pre-conceived notions regarding Down syndrome, he is not happy all the time. He is human. Just like you, his emotions run the full spectrum. He does not think twice about letting you know what he is feeling in any particular moment. It can be both beautiful and painful to watch. Continue Reading…

Guest Posts, motherhood, parenting, Special Needs

Down Is Up: On Parenting a Child With Special Needs.

November 6, 2014

beauty-hunting-jen-logo-blackBy Anna Yarrow.

My daughter stands in the middle of a shallow pond, yelling, “If you love me, come and get me! Do you want me? Do you care?” I rest in a patch of shade, watching hordes of children and chaperones traipsing over a wooden bridge; an epileptic girl who fainted at the old schoolhouse, her face weary, limbs floppy in the aftermath; hearing-impaired students in red t-shirts, marching single file, absorbing this living-history museum with their turbo eyes, fingers dancing shadow puppets between them.

“Fine then Mom! I guess I’ll have to stay here . . . Forever! . . . Way past midnight!”

The tremor in her voice tells me there’s sand itching in her socks. Cicadas buzz in the cottonwood trees, volume cranked to unbearable. A canker sore stings her gums. Lunch uneaten. All factors tipping us towards melt-down. A teacher calls, “Time to go, kids!” I wave at the 2nd grade class as they jostle back to the bus. A boy asks, “Why does she get to stay in the water?”

I drove my daughter separately, in case she got wet and muddy, or needed to leave the field trip early. Water usually calms her, but today she’s rocking, hands in tight fists, moaning, “You have to come get me . . . “

I peel off my boots, roll up my jeans, and approach her, soothing, “It’s okay . . . I do want you . . . Please, let’s go.” She grabs my waist and holds tight, pretending she can’t walk. Words like ‘manipulation’ and ‘discipline’ flash across my mind (residue from my spare-the-rod-spoil-the-child upbringing). I’m triggered by her anxious questions: what is love what is want what is care?

She’s silent when I say, “I love you.” (But at least she doesn’t reply, “I don’t love you!” like years past.)

I escort her through heat and blowing dust, and “I’m tired!” towards the parking lot. She asks, “Can we can stop at the library on our way home?” I agree, and remind myself to breathe.

Reality feels slippery after a tantrum. Memories of previous episodes conglomerate in my ribcage, taunting: out-of-control! I judge the day’s events while driving. Pond, yelling, and desperation. Mother frazzled and inept. I give my daughter a carton of almond milk, and fumble the radio, finding her favorite country music station.

Yellow lines blur around a sharp bend. Oncoming vehicle red or orange spooks me and I swerve my Jeep off the road. Slow motion skid on dirt, hello sagebrush, windshield shattering. We’re crashing, tipping, rolling. My arm reaches out to protect her, and I promise, “WE ARE OKAY. WE ARE NOT HURT.”

And she believes me.

Hanging upside-down like bats. My legs pretzel the steering wheel. Engine sounds wrong, so I turn the key. Undo her seatbelt. She falls to the ceiling, surrounded by nuggets of turquoise glass. I say: “We had an accident, but we’re safe!“ She glows with surprise and says, “That felt like zero gravity!” I wonder why I don’t feel sorry. Why we’re not crying. Why all of this feels right somehow.

Continue Reading…

Guest Posts, parenting, Special Needs

Before You Judge Me.

October 8, 2014

beauty-hunting-jen-logo-black

By Rachel Pastiloff.

When you are out in the world, be it at a restaurant, grocery shopping, driving in traffic, or at the doctor’s office, and you see a child screaming and a mother losing her cool and grabbing that child by the arm and being stern: BE CAREFUL BEFORE YOU JUDGE THEM.

Be careful placing judgment upon others, for you know not what battles they are fighting.

Before you judge me, or anyone. Take a breath. Consider what you might not know. Look inward. Look outward. Whatever it is, realize this: you may never have any idea of someone else’s story, so judging them is a tricky business.

Continue Reading…