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- Herausgeber: Future Horizons
- Kategorie: Geisteswissenschaft
- Sprache: Englisch
- Veröffentlichungsjahr: 2012
Congratulations! It's a girl with Asperger’s! Join author and mom Julie Clark as she guides you through her family’s adventures raising a young child with Asperger’s Syndrome, a mild form of autism. Whether you have a boy or a girl with Asperger’s in your life, you’ll nod and smile as you turn each invaluable page of real-life challenges and solutions.
- The Road to Diagnosis
- The Teacher Who “Gets It”
- Occupational Therapy and “Group”
- Tuning in to Social Signals
- Winning the Daily Battles
- Hope for the Future
- And more!
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ASPERGER’S IN PINK
All marketing and publishing rights guaranteed to and reserved by:
721 W. Abram Street
Arlington, Texas 76013
800-489-0727
817-277-0727
817-277-2270 (fax)
E-MAIL: [email protected]
www.FHautism.com
© 2010 Julie Clark
Book design © TLC Graphics, www.TLCGraphics.com
Cover by: Monica Thomas; Interior by: Erin Stark
All rights reserved.
No part of this book may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc., except in the case of brief quotations embodied in reviews.
ISBN for E-book Version: 978-1-935274-29-2
ISBN for Print Version: 978-1-935274-10-0
For my amazing, beautiful daughter, and her father, my husband and teammate
Acknowledgments
Recently, I thanked a friend for her support along the way, and she quickly dismissed it, thinking it didn’t amount to much. But kind words do add up, and every person who has uttered even a few words of encouragement along this journey is forever imprinted on my heart. Thank you.
First and foremost, unending thanks goes out to Wayne Gilpin, along with everyone at Future Horizons, for taking on our story, and being so wonderful to work with! I can’t say enough, and am forever grateful. A special note of thanks goes to my editor, Kelly Gilpin. “Thanks for everything” just doesn’t seem to cut it.
Thanks to Ellen Notbohm, for a timely boost of courage with a side of wisdom every “young” author needs. Thanks to Rudy Simone, for her uplifting words to me, and for writing the foreword. Much appreciation goes to Dr. Cara Regan, who has provided wisdom and support. A condensed “thanks” goes to Kim Casey, whose gentle pushes of encouragement throughout the decades continue to provide me with confidence to be true to who I am. And to Sally, whose friendship I will always, always treasure.
I’d also like to take a moment to express appreciation for experts in the field, such as Dr. Tony Attwood, whose work continues to help families like ours. Likewise, helpful online sources, such as the Bridge newsletter (a publication of the Advocacy Center).
Endless gratitude goes to my husband, who is a large force behind Asperger’s in Pink. I could not have written this without his support. And to my daughter, the best daughter anyone could ask for, who has permitted me to share a glimpse into her world with the world. I don’t know what I would do without her.
Kristina would like to thank all of her friends who support her for who she is and what is within her, without judging her, and she would especially like to thank her first ever “real” best friend. Thank you.
Table of Contents
Foreword
Before You Begin
Preface
Introduction
Section I—The Diagnostic Process
Chapter 1.
The Road to Diagnosis
DON’T Take Me Out to the Ballgame!
Chapter 2.
It’s a Girl ... with Asperger’s!
Section II—School
Misunderstanding the Rules
Chapter 3.
The 504 Plan
But I Want to Know!
Chapter 4.
Occupational Therapy and “Group”
The Parent-Teacher Conference
Chapter 5.
The Teacher Who “Gets It”
Section III—Community
Trying to Teach Empathy
Chapter 6.
Tuning in to Social Signals
Holidays are Hard
Chapter 7.
A Part of—and Apart from—the Community
Literally?
Chapter 8.
And Then There’s Family
Section IV—Day-to-Day
A Birthday Breakfast
Chapter 9.
Holding the Marriage Together
That Empathy Thing, Again
Chapter 10.
Winning the Daily Battles
Chapter 11.
Thursdays with Tori
Hope for the Future
Tiger’s Big Game—A Short Story by Kristina
References and Resources
Index
About the Author
Foreword
“She doesn’t seem autistic to me,” is a statement that Julie Clark hears again and again when she tells people her daughter has Asperger’s Syndrome. “I didn’t know girls could have it” or “she sounds just like my kid,” are other common responses. This skepticism even occurs after a positive, professional diagnosis. Ironically, one of the biggest challenges in being high-functioning lies in convincing others we have challenges. Most people don’t realize that autism is a not only a long spectrum but also a wide one, and different people sit on different parts of that landscape. “She’s not autistic; she’s spoiled,” Julie also hears, a mild cousin of the “refrigerator mother” theory of autism. Even the best parents can be accused of being part of the problem rather than the solution. Even the most well-meaning individuals may dispute a diagnosis of AS, in an effort to simplify or normalize the situation.
There is a mindset that naming something will give it more power. Naming is a powerful thing—“Asperger’s Syndrome” aligns us with a group, it gives us a backdrop and a catalog of information. So many AS females don’t have the name; Asperger’s manifests differently in girls, often resulting in multiple misdiagnoses and not having access to the proper care and support. Diagnosis is the beginning of a labyrinthine, bureaucratic but sometimes very effective system of support for a child. Without diagnosis, girls are left with the wondering and the questions. They don’t have the subculture to turn to for answers and support. In short, they struggle.
Kristina, the real life star of Asperger’s in Pink, is a little girl who has to contend with many struggles but is too young to know it yet. She doesn’t understand that other children don’t have the same perspectives, the same talents and the same sensitivities. Or if she does see it, she thinks it is because she is gifted and they are not. In many ways she is right, but to be intellectually gifted is often to be emotionally, socially, and sensorially challenged. Often the drawbacks for an AS girl only become painfully obvious when she hits adolescence or puberty. When her childhood friends, if she had any, may begin to distance themselves from her quirks and align themselves with other, less awkward, more popular girls. This is when the person with Asperger’s begins to realize the downside of “different,” when to be different almost guarantees isolation and bullying.
Those involved in the life of a young child need full understanding of Asperger’s so the child isn’t blamed for their behavior, resulting in guilt and confusion. These can lead to lifelong depression and anxiety, which may, in the case of older girls looking for diagnosis, throw counselors and psychologists completely off the trail of AS, causing them to treat the symptoms rather than identify the source. Kristina’s mother Julie knows this and does her best to stay one step ahead of the game. Battling apathy, ignorance, and indifference, she tries to pull everyone else in her daughter’s world up to speed. Like the mothers of some of our more well-known Aspergirls, such as Temple Grandin and Liane Holliday Willey, Julie is a mother who knows, and always knew, that her child is “super special,” that she is worth taking the time for. She fights daily so her daughter doesn’t have to, so that the weight of being different doesn’t cause her daughter to lose the spring in her step. Not all girls with Asperger’s are so lucky. Many have had parents who did not have the ability, the wherewithal, the education, or the patience to understand their child. Some had children on the spectrum before the diagnosis existed. Julie Clark took the time to investigate Asperger’s Syndrome with the tenacity of a detective on the trail. She followed the clues, she enlisted the aid of professionals, and then she diligently monitored the progress of her daughter’s education and care. She wanted to trust other people to have her daughter’s best interest at heart, but unfortunately some people who are entrusted to sculpt an inclusive, enlightened world for our kids sometimes find it easier to leave the odd ones out of the reindeer games. Julie also eloquently illustrates how just one caring, thoughtful, engaged soul can make a vast world of difference in a child’s life and the lives of her family.
Kristina is very lucky to have both parents take the time to actively be involved in all facets of her life and well-being. Usually one parent or caregiver has the burden of not only educating themselves about Asperger’s, but everyone else around them as well, including their partner. Julie and her husband Andrew were likewise fortunate that Kristina’s pediatrician took their AS suspicions seriously, and became a crucial ally early on. The doctor was easy to convince. Other, less knowledgeable people proved to be more difficult but just as crucial to bring on board. Julie’s description of an interrogative phone call from a case worker was chilling to me because we’ve all been put on the defensive by those that don’t do their homework. Ms. Clark stresses the importance of communication and cohesion between everyone involved, so no one is working at cross-purposes, so they are supporting rather than defeating each other’s efforts. She warns that you may have to be a squeaky wheel to get that communication, and to keep the whole machine from grinding to a halt. She gives advice no one gave her, and although she laments the lack of a handbook of terminology, she provides us with the beginnings of one in this book.
As Ms. Clark so eloquently points out, many of Kristina’s good points were not only overlooked, but were almost treated as problems or evidence of a disturbed nature. Most people think it isn’t “normal” for a three-year-old to be a self-taught reader. But in the world of female Asperger’s, my research shows that it is quite common. Barring learning disabilities, so is burning through assignments at a rate so rapid teachers can’t give them out fast enough, and correcting adults when they are wrong. These should be signs that there is a gifted, unusual child on the scene. The lack of social graces and eye contact, taking things literally, adverse reactions to sensory overload, those of us familiar with AS know these are garden variety traits, but for the uninformed world, they are evidence of a slow, spoiled, or unsocialized child. This is the universal Aspergian experience of being misunderstood. Julie reminds us that although the child’s blunt honesty is often interpreted as disrespect, it should be applauded, for although it does make for some difficult interactions, this is an attribute of a leader, not a follower.
Julie’s humility and the admission that her experiences are subjective are part of what makes their story so universal—we all feel very alone at times in this journey. She reminds us that kids with AS aren’t the only ones who struggle for a social life; parents and caregivers can also become isolated. Julie wants no thanks, no sympathy, she is plaintively calling out to people—family, teachers, psychologists, friends—to just take a moment and hear this story, in order to make it easier for the next family, the next Kristina. I was riveted from the moment I started this book until I put it down at the last page. Story after story, milestone after milestone, I was with Julie and her family. I felt their fear, their worries, but mostly I felt incredibly relieved and gratified that Kristina has such a champion on her side. I wish all little girls with Asperger’s did.
This book is going to be both lighthouse and life raft for parents, giving them something to aim for and the way to get there. Parents of an AS child (whether girl or boy) who are trying to procure a diagnosis or who have a diagnosis but don’t know what to do next, Ms. Clark has provided you with a map. Kristina will have another series of chapters to go through and I almost heard the word “sequel” in my mind when I finished this book. One thing to remember is that while female AS is different than male, no two girls will be exactly alike either. Some will want friends, others won’t. Some make eye contact, others can’t. Some will be verbal, others visual, and so on. And as Kristina gets older, and becomes a teenager, she too will change. I’m looking forward to catching up with her in the future. I’m sure it will be a challenging but happy one. Thanks to books like this and the parents and professionals who take the time to read them, many more little Aspergirls will have the future they deserve.
— RUDY SIMONE
Author of Aspergirls: Empowering Females with Asperger’s Syndrome and Asperger’s on the Job: Must-Have Advice for People with Asperger’s or High-Functioning Autism, and their Employers: Empowering Females wand their Employers, Educators, and Advocates
Before You Begin
“I feel like any other ordinary kid, and I want to be respected like one.”
– KRISTINA
ASPERGER’S, IN A NUTSHELL
Asperger’s Syndrome Disorder is an Autism Spectrum Disorder. Autism, itself, varies greatly, with some individuals always needing attentive care, while yet others with milder forms, such as those with Asperger’s, live “normal” lives, completing college, marrying, and going on to raise families.
Once thought to affect one out of 166 people, the CDC now estimates that autism affects one out of every 110 individuals. It is not yet understood whether instances of autism are on the rise, or if it is simply an increasing understanding of autism that is resulting in better, and more widespread, diagnoses.
Although more males than females are diagnosed with Asperger’s, the exact ratio is unclear. However, both males and females share certain traits. Markers and traits of Asperger’s generally include lack of eye contact, inadequate social ability, strict adherence to routine, sensory integration difficulties, lack of empathy, intense interest in a limited number of subjects, rigidity, and a literal way of thinking.
Although Asperger’s Syndrome was brought to light by a Viennese physician, Hans Asperger, in 1944, it would not be until 1994, a full fifty years later, that this syndrome would be recognized in the United States, and added to the DSM-IV.
As of this writing, the exact cause for Asperger’s Syndrome is unknown. It is suspected genetics play a role, as at least one parent or close family member typically exhibits a marker or two of the syndrome. Regardless, the cause is considered neurological, not psychological in nature.
As with classic autism, there is no known cure. In fact, many individuals believe a cure is unnecessary. Many desire to look at Asperger’s simply as another way of thinking.
PINK PEARLS
“Pink Pearls” pulls out the key points and ideas presented throughout each chapter. Located at the end of each chapter, Pink Pearls is divided into three sections. The first section speaks to the parents, referring to them as “caregivers,” as some children are not under the direct supervision of their parents. The second section is addressed to those outside the immediate family, such as educators and extended family members. The target audience for this section reflects the content of the particular chapter. The third section is a one-sentence wish or a sentence of thankfulness, mentioning an available tool/service deemed extremely helpful or desirable. (A fourth section, “For Everyone,” is interjected when applicable.)
TO PROTECT AND RESPECT
In order to protect and respect the privacy of the individuals and establishments mentioned, names, places, and identifying characteristics have been changed.
Preface
THE LIFE CYCLE OF A DOUGHNUT
Kristina’s eyes widened as her father suggested a trip to the new doughnut shop across town. It was a perfect proposal for a daddy-daughter date. For me, it was a perfect plan for some bonding time, as well as some quiet time for myself.
After zipping up her pink parka, Kristina griped as we fiddled with her mittens. Not quite five, she still struggled with arranging them “just so” on her small fingers. In Kristina’s world, there would never be a need for mittens or gloves.
“Do you want us to bring you back anything?” asked Andrew.
“No, I don’t think so. Thanks, though,” I responded. Andrew and Kristina made their way to car. Being the gentleman he is, he opened the door for our princess, allowing her to plop easily inside her carriage.
A short while later, the glowing neon lights reflected in Kristina’s eyes. The radiant sign indicated fresh, warm doughnuts inside. The warm, sweet smell of the confections filled the small building. So many choices. So many options. Kristina rushed up to the glass encasing the workroom. A small, raised walkway allowed smaller customers to watch the baking process. Trays upon trays of raw dough circled around, until making their way onto a metal conveyor belt, making each step of the process, from dough to dining, easy to follow.
Kristina stood mesmerized, as Andrew explained it all to her. As she listened, Kristina chose to lock her eyes on one particular doughnut, following it to the end. A glass case full of sweet choices greeted them at the conclusion of the “tour.” True to form, Kristina settled on a simple doughnut with sprinkles, while her father chose something slightly more complex.
The two sat down, enjoying time together. Such a simple night out, firming the bond between father and daughter. After putting jackets and caps back on, Kristina took one more glance through the large windows, once again following a doughnut to the end.
All too soon, bedtime came calling, time to head back to the carriage, back home.
“Did you have a good time, tonight?” asked Andrew. “Oh, yes, Daddy. When can we go back?”
“Oh, I don’t know. Next time, how ‘bout we bring your mother?”
“I think Mommy would like that. I can’t wait to tell her all about the life cycle of a doughnut!”
Andrew sat there, eyes fixed on the road, his mind ruminating over her choice of words. The life cycle of a doughnut. He’d never thought of it like that before.
“That’s a clever way to put it,” Andrew mentioned.
“Well, you see it starting out, then it turns into a doughnut, then you eat it. It’s a life cycle,” quipped Kristina.
“You know, you’re right.”
Not yet in school, Kristina made the connection. Somehow, somewhere, Kristina picked up on the concept of a life cycle. Kristina being Kristina, it was nothing but common sense.
As often said, common sense is the least common sense of them all.
Introduction
“Your child has Asperger’s? I know someone at work who has a kid with Asperger’s. When was your son diagnosed?”
“We don’t have a son. Our daughter has Asperger’s.”
“Your daughter? Huh. I thought mostly boys had Asperger’s.”
I bite my tongue, as I feel sarcasm rising in me, wanting to say, “Most, not all. That makes the remainder of ‘most’ girls.” But I don’t share my thoughts. I simply reply, “Yes, I know. My husband and I have yet to know anyone else who has a girl with Asperger’s.”
I finish exchanging pleasantries with the well-meaning individual, and go on my way. At home, I plop on my couch, sinking into its oversized pillows, sulking at the general lack of understanding surrounding my family.
Sure, Asperger’s is diagnosed less frequently in girls than boys. However, according to Dr. Tony Attwood, a respected expert on Asperger’s Syndrome, the ratio is thought to be 4:1, similar to classic autism. But that doesn’t mean girls with Asperger’s are any less affected than boys. Still, according to research, the ratio of boys to girls referred for assessment is much higher, 10:1, with the gap narrowing as girls approach adulthood. Simply put, girls often go undiagnosed much longer than their male counterparts.
It is no wonder we feel we have to defend Kristina’s diagnosis.
Over and over again.
“Oh, come on,” another says, “all kids are picky. All kids are shy. All kids speak their minds. All kids have favorite things. All kids...”
All kids do not have Asperger’s.
Meanwhile, as I reflect on the words of those who question my daughter’s diagnosis, I want to crawl into a hole. Or pack up my family, and head to the hills. Many, many times, it seems as if we are in it alone. Sometimes, it even seems as if it’s all a ruse, and Kristina is like any other perfectly “normal” child. Sometimes I wonder if her idiosyncrasies are our doing. But then something will happen, something in life that will make Asperger’s appear alive, well, and inescapable, like thick snowflakes in January.
In writing this book, my hope is to shed a little light on what life is like raising a young girl with Asperger’s Syndrome Disorder. This is our story, told from a mother’s heart. Our experience isn’t any less, or even any greater, than anyone else’s in our situation.
Kristina was diagnosed with Asperger’s Syndrome Disorder during first grade. To date, five professionals concur with her diagnosis. I am including that bit to assure you that her diagnosis is firm, our experiences real.
In talking with Kristina about this book, she, like any other kid, has bounced around from excited to anxious. Excited she’s having a book written about her. Anxious her parents will do something to embarrass her. After all, she is on the brink of middle school, where parents embarrassing their children becomes nothing short of an art form. Still, it is very important to Kristina that Asperger’s be understood—and especially how it relates to girls.
Kristina, like any other ten year old, loves to read, play, and watch TV. Like any other ten year old, she doesn’t like chores—or brussel sprouts. In other words, in many ways, Kristina is just like any other daughter. Her desire is for others to understand that kids like her are much like any other kids. However, Kristina understands there are things about her that do make her different. It is important to Kristina that folks understand these differences, and, as a result, accept her for who she is. After all, it doesn’t matter to her if her friends have special needs or not. We’ve taught her to look at the heart, not externals.
She expects the same.
If you would ask her about Asperger’s, she would put her hands on her hips, cross her eyebrows, and firmly tell you it is not a disease, and she is not sick. She would also tell you there is nothing wrong with having Asperger’s. She might even ask you “what’s the big deal” about Asperger’s anyway. She would tell you that kids with Asperger’s are like any other kids. She would tell you there is nothing wrong with her, though she is a bit different.
Let’s not lose sight that these folks with Asperger’s are just that—folks. People. Relatives. Individuals with souls just like anyone else. I hope this book provides you with a peek at the heart of a young girl with Asperger’s Syndrome, and her family.
Here is a glimpse of Asperger’s in pink.
Chapter One
The Road to Diagnosis
Why do kids always ask, “Are we there yet?” when they can look out the window and see for themselves?
– KRISTINA
Last night, I sat across the table from my ten-year-old daughter. Dinner was ending, and it was about time to leave for her school’s art show. This was Kristina’s last, as middle school starts up this fall. As our dinner conversation wrapped up, she tilted her blonde head, looked away from me, and lifted a hand in disgust.
Here it comes.
“Mommy, I just can’t look at you anymore!” Kristina declared.
I sat there clueless as to this latest proclamation. It was not unusual for similar comments to follow an unacceptable dinner. And I’m not talking just about the food. It could be how the napkin is lying on the table, or the order of the silverware.
Or using the “wrong” silverware.
However, tonight was her favorite, so that couldn’t be it. Conversation ran smoothly, so it wasn’t something I said. I already asked her about my new haircut, and she was uninterested. So, I just sat back, waiting for it to come.
Kristina is not one to hold anything in.
“It’s your hair!” she began. “It’s ... got ... gray ... all ... over-it-now. Ugh! Mommy, I just can’t look at it anymore. It’s just not right!”
Andrew sat there silent, as did I. In our household, it’s a well-known fact that new haircuts magically sprout more gray. In our household, it’s also a well-known fact that I’m hanging onto the illusion of remaining a natural brunette.
Andrew and I exchanged a smile, chalking another “encouraging” comment up to Kristina being Kristina.
A few years back, sitting in the same chair, across from the same child, Kristina offered up more wisdom. I was in the middle of a diet, and felt pretty proud of my progress, having only a few more pounds to go. As I mumbled something to Andrew about wanting to whittle a little more from my waistline, he encouraged me, telling me I looked just fine.
Kristina, on the other hand, didn’t see things the same way. She sat for a moment, intense in thought. Finally, a large grin graced her thin lips, and, with a matter-of-fact tone, she verbalized her assessment of the situation.
“You know, Mommy, when you sit that way, you do look fat!”
At least we weren’t at Grandma’s house.
At least she did not say that to Grandma.
This morning, as we waited for the school bus, I asked Kristina about last night’s conversation. She said the gray in my hair “freaks her out.” I am not supposed to turn gray. It goes against her perception of me. In her mind, it also means I’m getting older.
Life with a child who has Asperger’s Syndrome Disorder can be ... interesting. Having a daughter with Asperger’s makes the situation even more so. Often times, we feel like pioneers, much like other parents must have felt in the early 1990’s, when our country first began officially recognizing Asperger’s Syndrome. Back then, the overwhelming population of boys diagnosed with the syndrome overshadowed the rest. Today, not much seems to have changed.
In many ways, I don’t mind considering myself a pioneer. I always did like “Little House” books, written by Laura Ingalls Wilder, still like quilting, and being self-sufficient. As for Kristina, she loves the American Girl® series about Kirsten. And what girl doesn’t want a horse?
Somehow, the real thing isn’t as glamorous, is it? Especially when you are sitting in a covered wagon (Asperger’s), while others (the school) swear it’s just a minivan (wrong diagnosis). It gets even better when the doubters question the makers of the covered wagon (the doctors).
Sometimes, you just want to bang your head against a wall.
Or pull your hair out.
Except for me. I’d rather have gray hair than no hair.
For us, it’s as if the doubters have locked into one understanding of Asperger’s, solely in relation to boys.Since Kristina does not match up exactly to that portrait, she “must” be misdiagnosed. Simply put, due to lack of experience with girls on the spectrum, their understanding is skewed. And that is not a good thing. See, I was there too. I had my own thoughts on the matter. Early on, I had my own view of autism.
When I closed my eyes and pictured autism, I imagined individuals who appeared physically different, who could not communicate like everyone else, if at all. I pictured individuals always needing help functioning in the day-to-day world, never experiencing life in the mainstream.
Then I had Kristina.
Kristina is our only daughter, our only child. As with other parents who have only one child, whatever is normal for Kristina is normal for us. There weren’t any siblings to “compare” her to, nor were there any cousins or neighboring children her age. As a result, opportunities for social interaction with peers were sparse, existing for only a few minutes each week during Sunday School. Although her Sunday School class consisted of several girls her age, she never seemed to click with any of them. So it was hard to say which of her behaviors were normal, advanced, slow, or peculiar. All we knew was that Kristina is Kristina. Still, observing other parents with their children, whether at the store, or church, some of my daughter’s behaviors seemed a bit, well, different.
As an infant, she was never much of a cuddler. She was not a baby you could rock to sleep—ever. The only times she wanted to be held was when she was sick. In fact, that became a flag for us. If Kristina wanted to be cuddled and held, we knew she wasn’t feeling well. Though disappointed that she did not like cuddles and hugs, we did not think too much about it. After all, my husband and I are not huggers, either. We simply figured it was how she was.
I remember early on having to guard Kristina more closely than other kids her age appeared to need safeguarding. I had observed other kids her age who were largely able to stop when called to, or who seemed to have an innate sense of personal space, but Kristina did her own thing. I remember unending calls of caution as she would toddle down the driveway toward the street. I remember how my cries seemed to fall on deaf ears. I always had to be within an arm’s reach of her to stop her from venturing out into the road. Kristina simply did not seem to have any sense of personal space.
Too late, I learned about dogs used as therapeutic means for kids like Kristina. In those days, I often wonder if a Border Collie might have been of help, nudging her back into the yard, or wherever else she needed to be.
Inside, it was not abnormal for Kristina to make her way from point A to point B, stepping on whatever was in her path—including people. More times than not, Kristina would trudge through the room, successfully arriving at her destination, totally oblivious to what had just happened. Not only did we repeatedly stop Kristina, pointing out the fact that she stepped on someone, we also had to teach her that was not a good thing. On top of that, she needed to learn that when she hears someone call out in pain, she needs to see if he is okay.
(Over time, we taught her to use the phrases “Are you okay? Is there anything I can do for you?” any time she heard someone say “ow.” In practice, it works, but still comes off as rather scripted, which I suppose it is. To this day, a loud cry of pain or a simple “ouch” solicits an equal level of animated attention.)
Outside the home, there were other clues. Shopping was a constant mixture of filling the cart while redirecting Kristina from obliviously crossing the paths of other shoppers. Thank goodness, Kristina preferred riding in the cart. Even so, many trips ended with Kristina “losing it” in one way or another, usually via loud complaining or crying. At the mall, it proved near impossible to let our daughter walk alongside without holding her hand. She never seemed to “follow” where we were, constantly losing track of her surroundings.
As for behavior modification, we tried all sorts of things. Efforts at using reverse psychology proved transparent. Kristina was the first kid I ever ran across who never fell for it.
Not even once.
Kristina spoke early, and had a large vocabulary by age two. This was something else we passed off as insignificant. To us, it seemed perfectly normal. To her pediatrician, it seemed advanced. Maybe it’s different for girls than boys when it comes to language delay and Asperger’s. Regardless, Kristina spoke early, and well.
For Kristina, language delay did not apply.
Kristina spoke incessantly.
Kristina took to talking early; she is quite “oral.” Her mouth is always going—whether something’s going in it or on it, or sounds are coming out of it. She loves the feel of her special blanket pressed up against her lips. At school, her silky blonde hair is often twisted, and held to her mouth. When she was a baby, she preferred the sensation of the silky tags (belonging to her stuffed toys) in her mouth over the feel of their soft fur on her hands.
Thankfully, the “tag habit” was short-lived.
However, as soon as she discovered scissors, she chopped them all off.
Fortunately, I discovered her new hobby before she gave her Beanie Babies® a trim, and quickly found them a new home on a wooden shelf, out of Kristina’s reach.
Kristina was also an early reader. I often wonder if her oral stimulation behavior played a role in her early reading capability. I wonder if her desire for constant oral stimulation, coupled with the enjoyment of producing sound, contributed to those early linguistic abilities. It is not a scientific hypothesis I present, but a simple observation and supposition. By early, I mean this: Kristina taught herself to read before she turned four. She learned to read by teaching herself.
More than once, we have had people assure us that we are duping ourselves. They swear it is impossible for a child that young to read anything. “It’s pure memorization,” they attested. Let’s face it, most people thought we were simply exaggerating, and bragging. But my husband and I strongly disagree. Kristina was reading complete books by three-and-a-half years old. She read Arthur’s Birthday Party by Lillian Hoban to my sister at three years and eight months. She wasn’t coached, and only missed the word “somersault,” (Arthur’s Birthday Party is a Level 2 reader.)
It’s funny how such great accomplishments are often questioned, rather than lauded. While talking to another family member, who was doing her best to wake me up from my fantasy of having an early reader, I pointed out one of the best pieces of proof for our case. When Kristina read, she often mispronounced words. If she was using her photographic memory, I doubt she would consistently do such. She pronounced words as anyone else learning would—by sounding them out. For example, when she saw the word “jumped” on a page, she would pronounce it “jump-ed,” not “jumpt.” One of our favorites is the word “youth,” which she perpetually pronounced “yowth.” After all, if “mouth” is “mowth,” then isn’t “youth” “yowth”?
Kristina’s early reading opened my eyes to our own language. It’s easy to take reading and pronunciation for granted when you’ve been at it for years. It’s often hard to understand those who struggle with something that’s so easy for you. But listening to her read aloud made the difficulty others have of learning our English language makes sense. It made me more empathetic.
Not too long ago, our family watched video clips from Kristina’s youngest years. One in particular caught our attention. It was Kristina’s third birthday, and she was quite excited. A few kids were coming over for a brief celebration, and Kristina couldn’t wait. She sat at the decorated table, surrounded by paper plates and balloons. She grabbed a party blower, and played with it while the tape rolled. As I asked her about the day, Kristina communicated her excitement, all the while looking away from both the camera and me. It was quite obvious Kristina was avoiding eye contact (one of the markers of Asperger’s Syndrome). All these years, I knew Kristina avoids such, but seeing it on camera, at such a young age, was revealing. Before we knew something was different enough to warrant further investigation, the markers were indeed there.
At home, Kristina preferred to play by herself. I would often check in on her, but she largely wanted to be alone. When we did play together, it was more “side by side” than interactive, regardless of my efforts.
Kristina never seemed lonely.
My daughter’s playtime was limited in its themes, focusing primarily on birthdays (of her stuffed animals), shopping, and going to the doctor. Every day, there would be at least one birthday celebration. Most days, a doctor visit. Her play appeared to mimic life. Instead of pretending her animals were taking an imaginary trip to some far-off castle for a party, they celebrated each and every birthday just as Kristina had experienced them in her own life. She had specific props that she used, and a specific order she followed for each celebration. Doctor-play followed a similar route, as did grocery shopping.
As for playmates, the social world has never been an easy one for Kristina to maneuver in. Sunday School proved increasingly problematic for her. I recall one occasion when a little girl proudly declared to Kristina (in front of me) that she was “inviting everyone to my birthday party—except you!”
So much for the spirit of Christian Fellowship, huh?
