03 Oct We Tried Normal – 2e Family Stories: Chapter 3
Chapter 3: Wish I’d Known Then, What I Know Now
By Dr. Melanie Johnson Hayes
When I look at my kids’ behavior and experiences, I realize they are echoes of my own childhood. I was a child who lived in my own world because the real one never felt like it was made for me.
My dad was always trying some new get rich quick scheme, so we moved often. In my parents’ 35-year marriage, they moved 72 times. That would be difficult for any child, to always be the new kid in school, but for me, the rootless existence untethered me from much of reality.
I spent my days lost in a world of my own making and was often surprised by others’ reactions to it. Looking back, I know that what I did was not age appropriate, or socially adept, so people’s reactions were not surprising. For example, when I was eleven, I liked to pretend I was a horse. I spent most of my time behaving in horsey ways. When my peers were beginning to try out preteen versions of growing up, I was prancing and neighing and pawing the ground.
My awkwardness didn’t improve in high school. I often joined in where I wasn’t wanted, oblivious to others’ reactions. During a high school home football game, I ran onto the field and joined the cheerleaders in their routine. Picture me in street clothes, badly imitating their moves, a half step behind throughout the whole routine. The cheerleaders were horrified, the crowd amused, and the school bullies delighted. I might as well have put a neon sign over my head that flashed, “Bully Magnet.”
In a way, all of our moves were a blessing; at least I got to start over in a new community every year or so. That probably prevented me from being the long-term school pariah, but I never did learn to fit in socially until I was a young adult.
The annual moves may have been good for me intellectually, too. I was a curious child and spent my days exploring my surroundings. My dad’s get rich quick schemes took us to diverse and interesting places, from a mining town in British Columbia, to a cattle ranch in Nevada, to a salt mine in New Mexico. Our annual moves covered most of the western half of the United States and part of Canada.
I think my dad could be 2e, which explains a lot about his decisions and lifestyle. He was intelligent and creative, but couldn’t conform to society’s expectations, so he was often looking for a new job. While he worked enough traditional jobs to keep us fed and clothed, his desire to make his own way kept us always moving toward yet another adventure. While I am sure this constant moving was a nightmare for my mother, it was a joyride for the kids.
For most of my pre-teen years, I have very fond memories of exploring extinct volcanoes in New Mexico, virgin forests in British Columbia, the Great Salt Lake in Utah, caves in Missouri, petroglyphs and petrified forests in Arizona, cave dwellings in Colorado, and sand dunes in Idaho. We were well traveled and largely unsupervised, a wonderful setting for fiercely independent learners. My dad’s fallback job was as a truck driver. We often lived on rental properties with large workshops full of fascinating tools and junk from which to fashion and build whatever took our fancy. We tinkered and invented contraptions just for the fun of it. We made gizmos with no real purpose: a bicycle rim with paper butterflies attached, that spun to make the butterflies twirl; or a monster sculpture made from wire, nuts, and bolts. But some of our inventions were designed to be functional, like a two person harness for the wagon that we used to haul more junk back home. I think my siblings and I were “makers” long before it became popular.
I don’t know if this constant moving contributed to my feeling out of step with other children, but I never felt I found a true peer in any of our communities. While I do remember having friends, I spent most of my time daydreaming and living in my own private world. Since I didn’t pay much attention to what others thought of me, it was a satisfying way to live. To the outside world, I was a loner, but in my own world I had lots of company.
In addition to my imaginary friends, I had my brothers and sisters, and many beloved pets. I don’t ever remember feeling lonely or left out. When other kids made fun of me, I just went away. My lack of reaction probably saved me from harsher bullying. It was like being shrouded by an invisibility cloak.
My invisibility even worked somewhat at school. I found school tremendously slow and boring. I believe my rich imaginary world is what saved my sanity. I could just mentally leave my body and be somewhere else. During a spelling test, I would be racing my Arabian steed through exotic deserts. Math drills happened while I mentally explored a mysterious forest. Sometimes, I could do the work on autopilot, part of my brain engaging in what needed to be done, but also not be aware of what was really going on in the classroom. Lucky for me, in an average class of thirty something, being quiet and looking semi-productive was enough to keep me out of serious trouble.
Being the new kid in school each year helped, too. Because I could produce average work in most subjects, I was not immediately on the teacher’s radar. I had no history with each new teacher, her only knowledge of me as a student was through the paperwork in my files. I was obedient and polite. I got most of my work done and I worked without needing much help. To most teachers, I was a solidly average student. My elementary school report cards mention my inattention, but also comment on my good behavior. I think for many teachers, I was an easy kid to overlook.
I was an avid reader, sometimes reading two or three books in a day. I loved fiction and non-fiction equally, so my book knowledge outstripped my real life experience. I often mispronounced words because I had acquired an advanced vocabulary from reading. I knew the words and their meanings, and used them appropriately in context, but had never heard them spoken. I told my second grade teacher that I needed to go home because my stomach was “writhing” in pain, except I pronounced “writhing” with a short “i” sound. My experience was no match for my vocabulary.
In middle school, I began to struggle in math, but continued to make adequate progress in every other subject. I remember hating math and feeling like I would never understand it, but when I look at my report cards from those years, I earned fairly decent grades in math. Whether I understood it or not, I was able to do most of the assignments and pass the tests. I just was not able to retain the knowledge for very long. I always tried hard to do my best. I never wanted to disappoint my teachers.
Even in high school I worked hard to earn my teachers’ approval and attention. I attended a very small, backwoods high school, with only 28 students in my graduating class. I think that may have helped me be more successful academically, as I was not lost in the milieu. I graduated as a co-valedictorian, but had no confidence in my abilities and no plans to attend college.
Looking back at my school career, I believe I was a pretty unremarkable student overall. I don’t think I ever felt I could be good at what I loved to do, or even if what I loved to do was enough. My Dad told me that if I wanted to go to college, I should be a teacher or a nurse, as those jobs would be useful when I became a mother. There was little validation of my artistic and creative abilities. This influence lasted well into my adulthood. When I was finally able to attend college, in my thirties, I undertook a double major, fine art for who I really was, and teaching for my parents. While the art degree represented a little rebellion against my Dad’s edict, I didn’t really believe I could make it as an artist. Consequently, I never even tried to work in that field.
My childhood had a profound effect on my emotional state, too. I am in the middle of eight children and my mom had to cook, clean, and care for all of us while packing up and moving one or two times per year. I remember having intense feelings of needing to help her and ease her burden. From a young age, I would try to help with the housework and the younger kids. Often when she went grocery shopping, I would try to do one of her chores to surprise her when she got home. I knew she wasn’t happy and I wanted to change that.
I sensed my dad’s restless unhappiness, too. He seemed to be always looking for something better than what he had. His temper often was directed at his kids, and that made me feel guilty for contributing to his anger. These overwhelming feelings of responsibility and empathy often made it hard for me to just be a kid and not worry about my family. I used to count everything–my steps, the sidewalk squares, bites of food, people in church–as a way to sooth my worries. While I have no diagnosis of any childhood disorders, looking back at my younger self, I recognize many of the traits I now see in my own children.
Growing up, no one ever talked about any of us being gifted, although high intellect and creativity runs rampant in our family. Most of us grew up not feeling smarter than average, and many of us still don’t see that in ourselves. Certainly there was no acknowledgement of any disability, even though anxiety disorder has since been diagnosed in several family members and their children.
Dylan and Morgan both have anxiety disorder. When they are crippled by their fears, it throws me right back into my own childhood feelings of overwhelming anxiety. Witnessing Morgan have a panic attack because a plane is flying overhead, and she is sure it will turn and crash into us and kill her family; or seeing Dylan rocking back and forth, counting in binary numbers to try to soothe himself about the germs around him, is painful to watch. I feel great empathy for them and for the child I was. Looking back I have a greater understanding of my efforts to cope with my own world, even though it is embarrassing and uncomfortable to recall.
Past Meets Present
I often wonder what my life would have been like if there had been knowledge of twice exceptionality when I was growing up. Would I have turned out differently? Could I have helped my children earlier? What would it have felt like to grow up knowing people who understood me, or feeling like I fit in? I know many parents of 2e children ask themselves these same questions. We wonder if we can make it better for our children, even for ourselves. Some of us recognize we may also be 2e, and most of us have figured out ways to cope and survive, but usually at a price. We have given up essential parts of ourselves to fit in.
For many 2e adults, conformity and compliance were the focus of their childhoods. They were not just square pegs trying to fit into round holes, they were hectogons; but so many of those points were chipped away to make them well-rounded, to ensure they fit in. Eventually, whatever had made them brilliant was gone. I feel a keen loss of the artist I once was. Perhaps it is just nostalgia, but I remember feeling a sense of artistic freedom, and a deep connection to my creativity, that is no longer there.
My struggle, and the struggle of every parent of 2e children that I have met, is to preserve those extraordinary points in our children, to help them learn how to adapt and succeed in the world without giving up their passions, strengths, and dreams. We want them to stay connected to who they are and to feel, at an elemental level, that they are not broken. We work extremely hard to make that happen. We are determined and resourceful, and we refuse to accept the status quo. We know our children’s futures, and for many, their very lives, may depend on our willingness to change the world.
Working for Change
It was precisely this parental desire to help create a different world that prompted me to take on 2e advocacy as a profession. As my children struggled to connect with other children, I was determined to find some place where they felt they belonged. I looked for special playgroups and social opportunities, in hopes of finding true peers for my children, and like-minded parents for Tom and me.
We looked for local classes and resources, joined listserves, searched parent resources, and asked around. We finally found a group for gifted children in our area. Regularly, I began to take my kids to their activities. Among the members, I saw children like mine and heard stories that mirrored my own parental experiences. Other parents talked about how difficult it was to find resources and support. They, too, had struggled to help their children thrive. I heard over and over from parents of gifted children, who also had learning, behavioral, or social difficulties, how they wished there was someone to turn to for advice and advocacy, particularly around educating their children.
I had worked with many gifted children in my ten years as a teacher, but was now staying home to raise my own. Since I was looking for some way to combine my professional experience with my desire to help, I decided to become an educational consultant who specialized in gifted and twice exceptional children. I looked into Educational Therapist programs, Masters in Education programs, and Psychology programs. In the end, I decided to undertake a Masters degree and completed my Masters in Education, with a focus on gifted children, in 2006.
In January of 2007, I obtained a business license and began to offer support for friends and acquaintances with their issues around schooling their children. I attended public school Individualized Education Plan (IEP) meetings, assessed schools, and observed children in their classroom settings. I tried to find data to support my observations, which was difficult, as twice exceptionality was a newly emerging field of study. I spent many hours researching how best to mitigate the problems I observed. I wrote reports and made recommendations to parents and educational professionals.
This was painstaking work. I was often met with suspicion, and sometimes, outright hostility, at the IEP meetings I attended. I found that most school administrators did not actually believe twice exceptionality was a real diagnosis, or, if it was, it had no relevance in their case. Many of them worried that I was building a legal case against them and were stingy with information and collaboration. I had people yell at me in meetings, tell me I did not know what I was talking about, or completely dismiss my concerns and suggestions.
At one meeting, as I was trying to explain how neither the child’s abilities nor the disabilities were being adequately addressed, the Director of Special Education looked at me and snapped, “I don’t like your tone. You clearly don’t understand the appropriate accommodations.” I assured her that I was just trying to problem solve with them, as a team. I tried to explain to her that I wanted to use my expertise to support them in better understanding twice exceptionality, and my main goal was to adequately support the child. She replied, “I have a doctorate in education. Your so-called ‘expertise’ is in a field that no one accepts as legitimate.”
Even when teachers and administrators at IEP meetings seemed to genuinely want to help the student in question, they didn’t seem to believe that both the intellect and the disabilities needed to be addressed. I was reassured, many times, that appropriate resources and programs were being offered to the student, when what was actually offered only addressed the disabilities.
It was also difficult to assess potential private schools. I would tour a school and hear how they could accommodate the potential student’s abilities and needs. I would come to the parents with high hopes that this school could actually be a good match for their child. Then, we would bring their child to the school for a shadow day and it would all fall apart. I watched a second grade boy, who voraciously read high school level books, have his intellectual abilities dismissed by the teacher because he couldn’t read a passage out loud. Or I’d witness a girl asked to sit out of games at recess because she was over stimulated by playing tag and kept tagging the other children too hard and screaming when they tagged her.
These schools usually told us, at the end of the day, that they were not equipped to deal with this child’s academic and behavioral needs. I could see how painful the rejection was for the parents and how it wore on the children. Each school visit became just one more rejection, one more verdict that this child did not fit in.
Eventually, I began to evaluate schools and programs with a much more critical eye. I learned to ask more probing questions, to give examples of potential behavior and solicit hypothetical responses. Within a year of touring schools, I had pretty well exhausted the supply of potential private schools. There just did not seem to be any private schools in the greater Bay Area that would fully accommodate 2e children.
In addition to the school failures, I was beginning to hear stories of medical and therapeutic practitioners’ lack of understanding of 2e children. As a result, they were prescribing inappropriate treatment pathways, sometimes with disastrous results. One family told me their ten-year-old child had been diagnosed as schizophrenic and given medication that caused extreme psychosis. The child was actually 2e, with bi-polar disorder. Luckily, the parents finally were able to find a psychiatrist, who was willing to do research on twice exceptionality, and get their child stabilized with an appropriate diagnosis and medication.
In my practice, I listened to many parents tell their stories and cry with frustration at the lack of support. They were trying their best to find ways to help their children, but there was sparse literature and few experts to consult. I decided that if I were to be an effective agent for change, I would need to have the credentials to validate my experience. I spent a year preparing and applying to schools. In 2011, I was admitted to the doctoral program in Educational Leadership at Saint Mary’s College. I was on my way to becoming the expert these families needed, or at least to having the letters behind my name that I believed would give me academic respect.
That journey was eye opening. As I conducted collaborative research with parents of 2e children, I realized that my previous efforts at advocacy had only scratched the surface. What we wanted was broad recognition that this was a misunderstood and marginalized population, in need of recognition and support. These families were perpetually stressed and their children were falling between the cracks.
There were too few experts and not enough support systems for them to turn to, in times of crisis. There were virtually no systems in place to help doubly marginalized populations, such as families with low socio-economic status who also had 2e children. How could I help them? The changes needed were bigger than one person, or even a small group of people, could accomplish. But we had to start somewhere.
I utilized my doctoral journey to figure out how to help. The parents I had served as a consultant became co-researchers for my dissertation. We met for several hours each month, over the course of a year, conducting Participatory Action Research (PAR), which means we gathered data on the problems we felt were most pressing within our community.
In most research, participants are the subjects to be examined by the researcher, but in PAR, the researcher and the subjects are equal investigators and members of a community, who are looking into a common problem. During our year of work together, we shared stories, brainstormed, and gave each other advice. As we conducted these research meetings, we found that we began to function as a support group. The comfort, advocacy, and action that emerged from our group, helped us realize that the PAR model of support, and its outcome, should exist for all parents of 2e children.
Over time, we also figured out ways to reach out into the community. One of our members wrote brochures for medical, therapeutic, and educational practitioners. Another made a short film about twice exceptionality. I invited 2e children from our community to join my homeschool, which was the beginning of a lab school that I conducted in my home.
We began also to reach out to the general public, to tell our stories. We wanted to form networks of support and find ways to educate others on the needs of 2e children and their families. Our movement is growing. We hope that in the future you can tell someone your child is 2e without feeling defensive. We want the public to understand the behaviors associated with being twice exceptional. We hope that someday our challenges and gifts will be recognized and accommodated. But most of all, we hope that we will be heard, understood, and accepted.