A heartfelt story which doubles as a powerful teaching tool…this mother and her son lead by example.
Benjamin Breaking Barriers is a compelling read, coming at a time when 1 in every 88 children is being diagnosed with autism. This story appeals to heart and mind alike, taking the reader through the fascinating process of autism therapy while also revealing the psyche and philosophies of Benjamin’s mother. A valuable resource for anyone involved in working with an autistic individual; parents and therapists alike will find inspiration in the creative ideas put forth by the author.
Synopsis: Benjamin is diagnosed with autism at the age of two, and his symptoms fit textbook descriptions. He is completely nonverbal and has withdrawn from the world; he has disappeared into the devastating isolation of autism and is taken over by the strange, repetitive behaviors that accompany the condition. Through the loving and determined intervention of his mother, and with the help of a caring community of family members, friends, therapists, and consultants, Benjamin eventually develops speech and begins to know the joys of interacting with the people and the environment around him. He is revealed to have an essentially sunny and loving nature, although the problems caused by his autism are often heart wrenching and can subvert his personality.
Over the course of years, virtually all of Benjamin’s waking hours are spent in therapeutic activity and engagement; he is continually guided by the creativity and energy of his mother. She refuses to lower her standards and “be reasonable.” Instead, she continually reaches for the stars in hopes that Benjamin will one day move beyond his autism and lead a life of normalcy. Meanwhile, she struggles to maintain her own sense of self, burning the midnight oil in pursuit of her professional life as a musician and a writer. The deep spiritual relationship that exists between mother and son allows them to grow into a team; together, they achieve goals that few would have dreamed possible.
Now it is 2013, the present. Benjamin is in high school and, with the aid of his mother, has embarked on the path of becoming a compelling public speaker. He has already moved audiences to both laughter and tears with his forty-five-minute presentation on autism titled Breaking Through Barriers and is making an impact on his peers and the larger community, encouraging people in all walks of life to meet their own challenges. He has a website, a blog, and a Facebook page, and is being recognized as an exceptional role model.
Benjamin’s life story is inseparable from the storyline of his mother’s dedication to helping him, and the two intertwined histories provide an inspiring narrative—the underlying message is one of hope and perseverance. The author recognizes that the storm clouds of life can have a silver lining and that unexpected gifts may be reaped from this recognition. She finds ways to meet the daily challenges that arise from her son’s autism and detects the hand of destiny in the process. Thus, the story of Benjamin is punctuated by moments of elation and celebration that will uplift the reader’s spirit.
Google Benjamin Breaking Barriers to locate our website, blog, YouTube clip, and Facebook page.
Targeted Age Group:: age 13 and up
What Inspired You to Write Your Book?
Throughout the years, people have commented on the special bond they recognize between my son (Benjamin) and me. They have asked me to share stories about parenting, particularly in regards to Benjamin’s autism, but also in a more general sense. I kept getting feedback that my creative ideas and my spiritually-aware approach were inspiring and helpful, so I eventually decided to tell the full story in this book.
How Did You Come up With Your Characters?
This being a memoir, all the characters are real individuals, and I have portrayed them “true to life.” I’ve attempted to capture the essence of each person’s spirit while also encapsulating the valuable information shared with me. I feel privileged to have met such extraordinary human beings, and my deepest gratitude is to my son; he has made me strive towards growth and awareness in ways I never dreamed possible. The joy I’ve experienced in parenting him is beyond measure, easily outweighing the emotional pain heaped upon me by his autism.
Book Sample
Prologue
Imagine—you have a child, a beautiful child, of golden heart and loving manner, blue-eyed, blond-haired, and with the face of an angel…of ready smiles that light the world, of laughter and joy shared generously, making all around smile and laugh in response…
Imagine—that child begins to talk and to communicate with you, and then…gradually, you find that the blue eyes aren’t looking at you anymore…you realize that you haven’t heard the babbling and the first words in a while…you find that your child is withdrawing into a world all its own, far away from yours, rocking in the mindless rhythm of those children you just saw on TV—in the program that featured the neglected children of Rumanian orphanages, starved for touch and human contact…
But your child has always been loved, and hugged, and talked to. You have given up your career aspirations for a while, putting them on ice so you can fully enjoy the new experience of parenthood. You have long been desirous of this most important job on the planet: that of cultivating a caring, compassionate human being whose life will touch others, whose life will be fulfilling and meaningful…
Imagine—you are now handed a diagnosis. Autism. You are shocked to read phrases like “lifelong disability…intensive, ongoing therapy offers some chance for improvement…a lifetime of support and accommodation likely…is occurring with increasing frequency…cause(s) as yet unknown…”
Now what?
If you are like me, you get to work. You don’t waste time. Every hour of delay means that your child is one hour more down that inexorable path towards isolation. Every day that you lose will allow your child’s diverted brain to move farther down that lonely path, away from the fullness of life and love, away from the vigorous world of “us,” of “we,” of the community.
You try to deal with your confusion of feelings—the frantic desire to deny reality, the painful paroxysms of grief, the flaring fire of anger—and you push past the initial paralysis of being overwhelmed. You dive into therapeutic interventions, and you find your way into gradual acceptance while working to recover your shining star-of-a-child from the deep, dark clouds that have obscured its light.
You also find yourself writing in a personal journal, creating a daily log detailing the process that you and your child are going through.
That is how it was for me seventeen years ago. Upon realizing that my son Benjamin had autism, I immediately began therapeutic work with him. Every evening, I sat down and wrote about what we had done, about what Benjamin had achieved (or hadn’t), about how I was feeling and what I thought might be done to help him the next day.
By the time Benjamin was seven years old and had entered first grade in a public school, I had already generated several-thousand pages of single-spaced, finely typed journal entries filled with the creative ideas that were helping Benjamin. The joys and the heartaches that accompanied our journey were in there too. And while I cut back my journaling somewhat after Benjamin became elementary school age, I did continue to record the meaningful aspects of his life and mine. These materials have allowed me to tell our story, up to the present, in all its fullness.
I have been an intuitive writer since childhood. I am also a professional musician; my primary instrument is the violin. Since my early teens, my mind has been preoccupied with questions such as: How can I best build this particular skill? How can I make it more efficient? How can I make it part of something beautiful and meaningful?
It is no surprise then, that when Benjamin was diagnosed, I already possessed the necessary analytical and creative skills to begin working with him in a therapeutic manner. And oh, how much I have learned from Benjamin along the way! When you are dealing with autism, you learn to take nothing for granted; every little thing that might naturally be expected to develop in a child becomes something that must be worked at, triggered, developed, created. What a miracle then, what a cause for celebration, when a new neural pathway springs into life or an oft repeated drill becomes an integrated skill.
But, when you are in the midst of toiling, not knowing whether anything will come of it, you find that the real challenge is maintaining the capacity for hope and renewed determination. You realize that you need the help and support of two kinds of angels: the unseen kind, as well as the kind embodied in the people who share their love and talents with you.
This is the story of how, with ongoing help, Benjamin has grown from being a lost and silent toddler to being a bright, social young adult who loves his friends and gives inspiring educational presentations, in spite of the fact that he still has to deal with autism challenges on a daily basis.
Chapter 1: Where It All Began: San Diego, California January 1997
A stiff ocean breeze whipped my hair as I jogged alongside the ocean, comfortable in a light sweat shirt and thin running tights. It was January and, just as I did each morning come rain or shine, I was out exercising, pushing our blue baby-jogger with its large wheels and fat tires. Benjamin—two-and-a-quarter years old and big for his age—was nestled in the canvas seat with a woolly blanket tucked around his legs. As his comfortable carriage rolled along, he gazed silently out across the grey waters of the Pacific Ocean, watching the rhythmic ebb and flow of small waves breaking close to shore, contemplating the white fizz that ran up the beach and then disappeared, soaking into fine beige sand. The early morning fog was lifting. Blue patches of sky were already visible, and rays of sunshine were beginning to dapple the uneven sand, creating a play of light and shadow across the generous beach.
On returning home from our morning outing, I parked the jogger behind the quaint cottage we had rented for the past two-and-a-half years, lifted Benjamin out of his seat, and watched him climb the two stairs that led to our back door. We went inside, and Benjamin made a beeline for his box of wooden blocks. He plunked down and began building a tall tower, carefully balancing narrow blocks, one on top of another. Soon, the tower was nearly as tall as he was. Tensing his body and breathing rapidly with excitement, Benjamin stopped to survey his creation with an intent and serious look on his face, his arms outstretched and his hands rotating rapidly in an odd twirling-flapping motion. Then he picked up another block and very carefully placed it on top of the previous one.
I held my breath, watching. Slowly, the tower swayed and then toppled with a crash. Benjamin crowed with excitement, standing rigidly on tiptoe and giggling wildly as his hands danced and twirled. Then he immediately began the process all over again, seemingly oblivious to my presence, completely absorbed by his activity.
I sighed, feeling excluded. Benjamin rarely showed interest when I tried to engage him in playing with me, and if I interrupted his repetitive games, he would give shrill, high pitched shrieks, agitated and distressed at my intrusion. At other times, Benjamin would have a vacant look in his eyes, and I was repeatedly struck by how withdrawn and dejected my beautiful, golden little boy seemed. How could this be? Benjamin had once been such a happy, bubbly child…
I had been voicing my growing concerns to our pediatrician, to no avail. Frustrated, I thought back to our most recent “well baby” appointment. The intake nurse had brought us to one of the little examination rooms, and Benjamin had immediately begun twirling the seat of the round office stool. The shiny vinyl seat had whirled smoothly, inches away from Benjamin’s eyes as he tottered tensely on his tiptoes, mechanically jackknifing his torso forward, flapping and twirling his hands on straight, rigidly outstretched arms. Benjamin had practically choked with tense excitement as I exclaimed, “Doesn’t this strike you as strange behavior?” Looking disconcerted, the nurse had nodded hesitantly and then called out into the hallway.
“Doctor, could you please come take a look at this?”
He had walked in, a friendly comfortable man who had been in practice for many years and whose own children were nearly grown. “Oh, Benjamin’s probably just going through a stage, I wouldn’t worry. Let’s wait and see if he grows out of it.”
After the doctor left, the nurse had whispered to me, “I don’t think I would wait.” But, not being the doctor, she really couldn’t say anything more.
Prompted by an undefinable angst and feeling desperate for input, I phoned one of my closest friends in San Diego. “Abby, I need to get a handle on what I’m observing in Benjamin,” I told her. “Our pediatrician isn’t giving me anything to go on, but I know that something isn’t right.”
After listening to my concerns, Abby cautiously asked me, “Could Benjamin have autism?”
“Autism?” I echoed vaguely. “I’ve heard the term, but don’t have a clue about what it means.”
Abby told me that autism could cause social disconnection, lack of eye contact, and problems with language. Someone with autism would also tend to have odd, repetitive movement patterns. This description fitted Benjamin perfectly, and an unexpected wave of relief flooded me. With a diagnostic term to work with, I could take action instead of spinning my wheels, worrying.
Later that evening, with Benjamin fast asleep, snuggly tucked under his covers, I cracked open the library books I had checked out. I skimmed through the now familiar descriptions of the diagnosis and felt sweat beading on my forehead as I repeatedly read phrases like “…life-long condition… incurable… involves social isolation and limited speech development… institutionalization may be required…”
I slowed down and began reading more carefully when case histories were presented. The hairs on my body prickled, and by the time I had gotten to descriptions of teen difficulties with sexual issues and stories about the grossly inappropriate advances that a “hormonal autistic” might make, I was retching and howling through a flood of tears streaming down my face; I was near to vomiting from the emotional pain that scorched my being. It was well past midnight and, as I read on, one horrifying nightmare after another was being conjured.
Meanwhile, in the next room, my little angel lay sleeping peacefully, his bright blond hair and rosy cheeks straight out of a Boticelli painting. I muffled my anguished cries with a pillow, feeling tortured, my heart cramping, stabbed by needles of fear, my gut twisting with snakes. With tears blinding me and snot running faster than my cloth hankies could handle, I threw the books down in a heap upon the floor, clutched the eiderdown comforter around myself, and rocked, unable to fathom the idea of my beautiful child growing up to embody this hideous future. Sleep eluded me for the rest of that night.
Author Bio:
Malva Freymuth Tarasewicz, D.M.A., writer and professional violinist, is first and foremost a mother; her son, Benjamin, has long been the focus of her creative energies. Now, Benjamin is a young adult with a talent for public speaking, and Malva has teamed up with him, creating presentations about living with autism which educate while also inspiring others to overcome their personal challenges. Malva and Benjamin maintain a blog that continues the life-story begun in the book; it runs under the same title: Benjamin Breaking Barriers.
Malva holds a doctoral degree in music, performs and teaches, and is the author of the acclaimed book, Mental Practice and Imagery for Musicians.
During her free time, Malva trains her horse and competes in upper-level dressage. She lives in Boulder with her family, appreciates the beauty of nature that surrounds her home, and revels in the expanding adventure that is Benjamin Breaking Barriers.
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