Redefining Normal is a coming-of-age story with a twist. There was a time when all disabled children were placed in special schools. The disabled schools that our main character―Alan Jones―attended didn't pretend to offer anything resembling synaptic stimulation. These schools would never be mistaken for real schools in the academic sense. They were glorified babysitting centers. As time passed, Alan and mom became increasingly frustrated. These schools repeated the same third-grade lesson plan year after year. Finally, his mom convinced the school's psychiatrist to give him a variety of tests to determine if Alan was worthy of a competitive education at regular schools. At every stage of this process, hurdles were put in his path. Sometimes the very people who ran academic institutions were closed-minded bigots. Time and again, Alan had to fight the same battle against different foes. Meanwhile, after each skirmish, this shy, over-apologetic boy had to decide whether to stay in his shell and accept his fate or become assertive and learn how to self-advocate.
Redefining Normal is a coming-of-age story with a twist. There was a time when all disabled children were placed in special schools. The disabled schools that our main character―Alan Jones―attended didn't pretend to offer anything resembling synaptic stimulation. These schools would never be mistaken for real schools in the academic sense. They were glorified babysitting centers. As time passed, Alan and mom became increasingly frustrated. These schools repeated the same third-grade lesson plan year after year. Finally, his mom convinced the school's psychiatrist to give him a variety of tests to determine if Alan was worthy of a competitive education at regular schools. At every stage of this process, hurdles were put in his path. Sometimes the very people who ran academic institutions were closed-minded bigots. Time and again, Alan had to fight the same battle against different foes. Meanwhile, after each skirmish, this shy, over-apologetic boy had to decide whether to stay in his shell and accept his fate or become assertive and learn how to self-advocate.
Chapter 1 - INTUITION
Ms. Jones asked her eldest son, Thomas, to clear the dinner table. Bedtime was quickly approaching for little Alan. As she scooped her two-year-old son off the floor and tickled his belly, he squealed in delight. She turned him over and saw her maternal love reflected in his eyes. To her, he was an unexpected joy who captured her imagination with each passing day. To him, she was mommy, his universe, as the only person he felt tethered to and safe with in his young, challenged existence.
After their pre-bedtime bathroom ritual, she changed him into his teddy bear printed “jammies”. Upon placing her boy in a special bed with protective side rails, his eyes lit up when she grabbed a book from a nearby table and sat by him. It mattered little that she read to him five times a day, he always was enthused when mommy read bedtime stories. Likewise, her heart soared whenever he displayed obvious signs of comprehension. Although she couldn’t scientifically prove that Alan possessed at least average intelligence, her mother’s intuition told her differently.
Due to a massive stroke suffered at birth, Alan’s initial prognosis was so dire that he wasn’t expected to survive his first weeks of life. Moreover, doctors grimly asserted that even if he lived, he’d be in a permanent vegetative state with brain damage classified as so severe that doctors predicted he’d never recognize people or be able to interact socially. Therefore, it was recommended that Ms. Jones do the right thing by placing her son in an institution, as she would not be able to care for him properly.
Doctors are given expert status in society. Consequently, lay people trust them for not only medical assistance but also advice. However, Ms. Jones' pesky gut told her to take her son home from the hospital—if he survived.
A fairly bright individual, with multi-tasking skills, Ms. Jones could complete three crossword puzzles and balance a checkbook before her morning coffee turned lukewarm. Yet, she knew that sometimes one’s mind wasn’t best at discovering all of life’s answers. More often than not, her intuitive skills served her well. As she watched little Alan nod off to dreamland, something gnawed at her to find out, once and for all, if those doctors were wrong.
A little more than two years after his birth, her belief in him and what he could be finally motivated Ms. Jones to seek out other experts. She spent the next morning on the phone with pediatricians and other mothers. Just before office closing hours of five o’clock, her phone rang. Hoping to have some kind of response today, she pounced on the receiver like a hungry cat nabbing a wayward rodent.
“Hello?” she hurriedly blurted.
“Hello. Is this Ms. Jones?” a man’s voice queried.
“Yes. And who am I speaking to?”
“Oh, sorry, I’m Dr. Howard Shasta. I’ve heard you’ve been looking for someone to evaluate your son’s cognitive aptitude.”
“Do you mean intelligence?”
“Yes, Ms. Jones.”
“Well, yes, I suppose I have.”
She went on in detail of what she’d been told of his condition by doctors who oversaw his birth and the subsequent complications. After telling Dr. Shasta of her desire to discover what her son’s mental potential or limitations truly were, he agreed to see them both.
The following Monday, Alan’s uncle Lou drove Alan and his mom to Dr. Shasta’s office. Lou was a night supervisor at a manufacturing plant so he had a few free hours before his shift started. He and his wife, Ann, were always glad to lend a hand to his late brother’s widow. Ms. Jones was a proud woman, however, and rarely asked for assistance.
Upon arriving, they found a waiting room packed with mothers and kids of all ages. Ms. Jones interpreted this as a good sign. Apparently, Dr. Shasta had an excellent reputation in his field. After chatting with some moms, she found that her assumption was accurate. In a funny way, she became simultaneously settled and apprehensive by this revelation. On the one hand, she knew that by day’s end she’d have a definitive prognosis on Alan’s abilities. On the other hand, she feared that her hopes and his prognosis wouldn’t correlate.
Back when she was a child, doctors were looked upon with great reverence. Oftentimes, people would only see a doctor as a last resort when home remedies and elixirs failed. Fearing a bad prognosis would mark a person for certain death, doctors were sometimes negatively stereotyped as doomsday predictors. As a result, even though on an intellectual level she now knew better, her initial god-like perception of the men in white coats still bedeviled her core being.
After a 45-minute wait, a feminine voice called out from the reception window, “Ms. Jones, Dr. Shasta will see you now.” Springing out of her seat like a jack-in-the-box toy, Ms. Jones quickly wheeled Alan toward the doctor’s open door. Uncle Lou trotted to keep pace. Just before they arrived, a short, pudgy fellow in a well-tailored three-piece suit greeted them. His pleasant mannerisms temporarily lessened her anxiousness about encountering another “expert”. From young Alan’s narrow perspective the balding middle-aged stranger looked like Santa Claus, shaved and out of costume.
“Come in, come in. Please, both of you. Have a seat.” Dr. Shasta grinned.
After Ms. Jones and Lou settled in, Dr. Shasta positioned Alan directly across from his desk. The likeable fatherly figure casually chatted with the adults while showing a series of pictures to the youngster. Sporadically, he’d pause, conversing to ask Alan to identify objects in the pictures. Without much hesitation, Alan confidently pointed to and identified each object in Dr. Shasta’s first test.
Alan saw this as a fun game with a new friend; similar to the games he played with mommy every day under their tree at home.
Ms. Jones wasn’t completely comfortable with Dr. Shasta’s apparent disinterest in evaluating Alan. Her perception of a typical doctor’s persona was a straight-laced, no-nonsense, emotionally devoid person who was just interested in facts. His easygoing mannerisms, in her opinion, were very atypical behavior for a medical professional. She began resigning herself to the fact that he was just going to do his requisite time with them and regurgitate what Alan’s first doctors had told her.
A few minutes later, however, Dr. Shasta made a statement that pleasantly surprised her.
“I’ll need to have more extensive testing done on Alan.” Dr. Shasta said.
“What kind?” Ms. Jones apprehensively exclaimed.
“We’ll run him through a battery of standardized tests which will determine his cognitive function level.”
“When can you do this, doctor?”
“Can you bring him in tomorrow morning at nine?”
“Why so early?”
“Because Ms. Jones, these tests will take a good part of a day to administer.”
“Oh, okay. Well, I guess we’ll just make it a priority. We’ll be here tomorrow. Thank you, doctor.” She slightly stammered, stood up, shook his hand, and wheeled Alan out the door with Lou trailing behind.
The following morning, at quarter to nine, Ms. Jones, Alan, and Lou were back in Dr. Shasta’s waiting room. As soon as the office clock’s minute hand reached twelve, Alan was called in. One of Dr. Shasta’s interns quickly whisked him away.
Ms. Jones was stunned by her son’s sudden departure. Until now, he’d rarely been out of her sight. Even though she was extremely unsettled by leaving him in the hands of strangers, she knew that testing protocols required Alan to be alone.
In an attempt to keep her mind occupied, during the next few hours she completed two crossword puzzles and read a good portion of a crime novel. Lou brought back lunch from a fast food place at 12:30 p.m. and chatted with his sister-in-law, over cheeseburgers. While their conversation didn’t produce any tangible outcomes it did serve as a much needed distraction for her. However, ten minutes after chewing her last bite of ground beef, her anxious musings grew more acute. With no more puzzles to solve or books to read, her thoughts now obsessed on her baby boy.
All kinds of “What if?” scenarios floated in her head. Her mind became a popcorn machine of thoughts. What happens next if he’s smart? What happens next if the original diagnosis is proven correct? Can I send him to school if that’s the next step?
Finally, she picked up a magazine and immersed herself in a topic she had no interest in.
Soon after reading Popular Mechanics from cover-to-cover, her name was called. Looking up, her eyes caught a clock face that read 2:35 p.m. She instantly turned and apologized to Lou knowing that now he’d miss a part of his shift. He assured her that a mea culpa wasn’t necessary. Slowly, they walked down a hallway and into Dr. Shasta’s office.
As they entered, Dr. Shasta greeted them with a smile from behind his desk while Alan sat directly opposite.
After all parties settled in Dr. Shasta placed a wooden box in front of Alan. The hollow box was a perfect cube, nine inches high, wide, and deep. Five sides were solid but its remaining side was a hinged door with five shaped holes cut into it. There were also five multi-colored solid shaped blocks: cube, star, cylinder, pyramid, and rectangle.
As Dr. Shasta gestured for Alan to play with it, he took a relaxed pose in his office chair, chin resting in hand.
“Watch what Alan does here,” he said.
Without being prompted, Alan picked up a cube and tried to fit it into a cube-shaped hole. Even though he successfully identified what shape belonged to which hole, lack of coordination prevented him from completing his goal. After dropping the cube several times, a pained expression went across Ms. Jones face. In her mind, he’d already failed. All that remained was taking her son home. Finally, Dr. Shasta picked up the cube and smiled at young Alan and then at his anxious mother.
“Do you know what this means?” Dr. Shasta mused.
“What, doctor?” Ms. Jones nervously inquired.
“Well, Ms. Jones, in all of our tests, your son demonstrated a unique ability to quickly identify problems and formulate solutions. Furthermore, despite his coordination problems, his intestinal fortitude won’t allow him to quit trying,” he said.
“But he can’t get the cube in the hole,” Ms. Jones lamented.
“Ms. Jones, Ms. Jones, I’m afraid that you can’t see the forest for the trees,” he lightly chuckled, “The point of this exercise was to see if he could correctly identify which shapes belonged to what holes. Whether or not he could make the blocks go through was of little importance. Furthermore, the speed in which he figures out answers speaks volumes about his analytical skills.”
“So, intellectually speaking, you’d say he’s at least as smart as an average kid?”
“Oh, no, I wouldn’t say that. I would say that he’s smarter than an average kid. Moreover, with all due respect to you and your brother-in-law, I’d say that he’s smarter than the two of you put together.”
“What do you think we should do next?”
“He should be enrolled in school now,” he emphatically asserted.
“But he’s not even three yet,” a slight tone of panic was evident in her voice.
“A child’s prime learning years are before they turn five. The longer you wait to send him to school, the harder it will be for him both academically and socially. Now is not the time for half-measures and compromises, Ms. Jones,” he chided, “You have to give consideration to what’s best for Alan’s long-term interests.”
“But he’ll be the youngest one in school, other kids…” she rationalized.
“I’m not saying that there won’t be an adjustment period. Will he struggle at first? Yes. Will he miss home and cry some? Sure. Will you have days where you just can’t stand parting with him? You bet! However, over time, both you and your son will adjust and he’ll be further ahead in the long run.”
A silence fell upon the room as Alan’s mother gave consideration to his words. Even though she just heard the best possible news regarding her son’s intelligence, a new reality hit home. Before Dr. Shasta’s tests had confirmed her hopes, she never had to concern herself with the next step. She loved having him home; teaching him what she could while being able to protect him like a mother lioness. However, now that there was documented proof of her intuition, her only recourse as a responsible, loving mother, was to do what was best for her son.
“Okay, what kind of school can he go to?” she relented.
“The nearest handicapped elementary school in your area is Ramsey Elementary School. They have everything Alan needs in regards to teachers, personal attendants, door-to-door school bus pick up, facilities, etc… ” he said.
“Okay, I guess I’ll call their principal tomorrow and tell him or her about Alan and how to proceed from there. Thank you, doctor,” she sighed.
Dr. Shasta stood up and walked toward the door, “Well, it was a pleasure to meet you all and if I can be of any further assistance, please don’t hesitate to use me as a reference,” he smiled.
Two weeks later, Ms. Jones and Alan waited in front of their apartment for the school bus. A series of phone calls and a meeting with Ramsey’s principal led them to this fateful day. Her heart never wanted to let him go. Yet, that same heart also knew that she had to do right by him. Whatever temporary pain about to occur was going to be more than offset by long-term academic achievement. To that end, she steeled herself in this moment for his sake. Regardless of what happened today, he wouldn’t see her falter.
The bus arrived on time and she gently handed her baby boy to a kindly driver who seated Alan directly behind him. At this point, everything was okay because he thought mommy was coming too. However, as soon as the bus began pulling away, he thought that he was being taken from his mommy forever! His sudden crying didn’t dissuade the driver from doing his job.
Ms. Jones saw her son’s pain through the window. She kept smiling and waving, smiling and waving, until his bus vanished from sight. Then, she leaned on the mailbox, put her head in her hands, and wiped her eyes. Alan’s future had begun.
Alan Jones is not at all what he seems. To the average outsider, he is a wheelchair-bound child who can barely communicate verbally—and yet, he is destined for much, much more than the doctors predicted at birth.
Redefining Normal is aptly named to show us that “normal” is an abstract concept that simply does not exist. Based on author Paul Nankivell’s life from the late-1960s onwards, the main focus lies on protagonist Alan’s educational experiences. The reader is treated to a brutally honest insight into the treatment of people with disabilities within school systems, alongside Alan’s attempts to break the mould. Kindly bus drivers, abusive attendants, and shockingly-trained teachers all play a role in shaping Alan’s life, as do setbacks such as medication dependence and the loss of friends at a depressingly young age. All of the issues are described in a matter-of-fact way that, sadly, reflect how prevalent these issues were—and often still are—decades later.
It is interesting that all of the schools covered in the book have such different expectations of their pupils academically. Some are no more than glorified daycare centres, whilst others strive for academic excellence. “No self pity in my class” is a policy of one teacher that clearly strikes Alan, helping him to see that he should not use his disability as an excuse. Overcoming discrimination, fending off physical and verbal attacks, and learning self-love are all part of the journey, allowing the reader to reflect upon their own struggles.
What is refreshing is that the author does not attempt to paint the protagonist in a wholly-positive light: just as he can be kind, courageous and determined, he can also be unsympathetic, judgemental and arrogant. In other words, Alan is human, and has all the perks and flaws that comes with that fate.
Whilst at times the book is repetitive in its descriptions of routines and the daily grind, on the whole it is an enjoyable read with plenty of humorous analogies. A particular favourite moment is Alan “frantically flipping through channels like a hummingbird on steroids” when trying to overcome a tough detox period. The humour helps to keep the tone light in a book that deals with serious issues, keeping it easy to read. It should be borne in mind, however, that the events may be hard-hitting for someone who has had similar experiences to Alan, or for those who have a close relative with special needs. For this reason it should come with a trigger warning.
Whatever experience the reader has had with disabilities, Redefining Normal is a guaranteed eye-opener, carrying multiple important messages for the world at large. The most prominent message for this reviewer? Do not underestimate people with disabilities, for appearances can be deceptive. It is for this reason that Redefining Normal is a must-read, and one which will hopefully pave the way for many other authors with disabilities to share their voices and experiences.