We Tried Normal — Twice Exceptional (2e) Family Stories
By Dr. Melanie Johnson Hayes
“Pity impedes the dignity of disabled people; resentment is a parallel obstacle for people with enormous talent. The pity and the resentment alike are manifestations of our fear of people who are radically different.”
– Andrew Solomon, Far From the Tree
Prologue
What is 2e? Just a number and a letter, but for those who are 2e, it defines a unique and challenging way of life. Being 2e, or twice exceptional, means you are an outlier on both ends of the curve. You don’t fit comfortably into any preconceived notion of being gifted or disabled because you are both. Your life is spent trying to find a way to navigate society’s expectations, while holding on to what you know to be true about yourself.
I have spent the last fifteen years living with my own 2e children, and working and researching with many 2e children and their families. I hope this book will introduce you to the challenges 2e children and their parents face every day, as they try to fit into our world. I begin with my own story.
How Little We Knew
When I gave birth to my twins, I was unaware that I would become an expert in a field I didn’t even know existed. My story, like the stories of most other parents of 2e children, begins with ignorance and naiveté.
I was a first time parent at forty-one. Not by choice. My husband, Tom, and I had tried for fifteen years to have a baby, enduring years of infertility treatments. As anyone who has struggled with infertility knows, it is a bitterly hard and often disappointing journey. We were ready to give up. We were out of money and nearly out of time.
Then I got the phone message I had been waiting for years to hear. I had to replay the message three times to convince myself that my doctor was actually telling me I was pregnant. When I finally acknowledged the message, I called Tom, but I was crying so hard I could barely give him the news.
With that message, I began nearly thirty-five weeks of a pregnancy roller coaster ride. My doctor’s infertility statistics, based on my age and treatment response, told me I had less than a one percent chance of getting pregnant with one baby, and virtually no chance of multiples.
When we found out I was carrying twins, Tom and I were overjoyed: two for the price of one! I had always wanted twins, but when you are infertile, you start at the top of a ladder of hope and slowly descend one dream rung at a time. I was so grateful to be pregnant that I didn’t dare ask for more.
I spent my pregnancy fighting the risks and realities of being forty and growing twins inside a rebelling body. I had acute morning sickness that caused me to vomit so often that my throat bled. I was not gaining the weight I needed and the babies were not growing, as they should. The smaller fetus was considered to be profoundly at risk because, at each check up, it was deemed much smaller than it should have been. They warned me that it was probably not viable. The doctors thought it would benefit the healthier, larger fetus to perform “selective reduction” of the jeopardized twin. They also cautioned that, at 40 years of age, I was not a good candidate for a full term twin pregnancy. Despite their concerns, we decided not to abort the smaller fetus.
The weeks crept by and the twins did grow, although the smaller one continued to be at risk. Curled steadfastly in my pelvis, this miniature baby did not move very much, and, at checkups, they often had trouble finding the heartbeat. The larger twin, by contrast, was especially active and flipped and twisted relentlessly. I had frequent ultrasounds, and the techs always asked me if I had eaten candy before I arrived.
My obstetrician put me on a special diet designed to help the twins gain weight and increase the chance of a full term pregnancy. I ate 3500 calories a day, which is harder than it sounds, when every calorie is nutrient dense. My activities were restricted and, eventually, I was confined to bed rest. I followed all of the doctors’ orders religiously and worked hard to keep my babies in utero.
Despite my best efforts, at twenty-nine weeks, after six weeks of bed rest, I went into labor. We rushed to the hospital where they were able to stop the labor with a cocktail of drugs. I stayed in the hospital for the next six weeks, hoping, every day, to remain pregnant. The doctors tracked our babies’ progress through daily ultrasounds. They balanced our son’s need to develop his lungs with our daughter’s need to survive her calcifying placenta. We played the odds that his lungs would work and her placenta would sustain her. Finally, one day short of thirty-five weeks, my water broke and the waiting game was over.
I remember lying on the operating table, numb from the chest down, waiting for word from the other side of the curtain. I had no control over what was happening, and no way of knowing if all of my concentrated efforts to nurture my twins had worked. At last, I heard a short cry as the nurse whisked a tiny baby off to the side for evaluation. Finally, they came around the curtain with a bundle of blankets surrounding a diminutive, wide-eyed face. Our daughter, Morgan, gazed at me with such an observant, thoughtful look, I remember being surprised that she wasn’t crying, just looking around, seeming to take it all in.
Then came our son, Dylan, at five pounds twelve ounces, nearly twice the size of Morgan. He cried as they evaluated him, but stopped as soon as he was swaddled. He kept his eyes sealed tight, refusing to look at me. This baby wanted nothing to do with the bright, loud outside world. After showing the babies to me, the nurses took them to the NICU, to be more thoroughly evaluated. I was wheeled into recovery, where I tried to overcome a reaction to morphine and the return of my preeclampsia. Two days later, I was finally well enough to go to the NICU and see my twins.
It is shocking to see a preemie in an incubator. Their tiny bodies are hooked to wires and tubes, their skin is translucent, and they seem too fragile to survive. You can’t hold them for more than five minutes because it overwhelms them. You can’t nurse them because they are unable to suck and swallow. You can’t have them with you because they need the incubator.
I gave birth to two babies, but went home with none.
Tom tried to ease my grief by wallpapering my room with dozens of pictures of our infants; he couldn’t bear the thought of me pumping breast milk throughout the night without even a picture of our twins. The doctors had encouraged me to start pumping every hour to make sure I had colostrum for my jaundiced babies. I pumped and cried a lot that first week. We were able to bring Dylan home on the ninth day, but Morgan had to stay for nearly two months.
There were no available family rooms at the hospital, so the next six weeks were spent trying to sleep at home and rushing to the hospital at dawn to care for our daughter. Tom and I took shifts. I was there during Tom’s workday, and he took over in the evenings, so I could go home to rest. Often, I was too sick to go to the hospital. On those days, Tom left at 5:00 a.m. to make sure he had time to drop off breast milk and see Morgan on his way to work. He did his best to be there for her, despite a grueling work schedule.
Tom’s devotion probably saved Morgan’s life. He took her temperature every time he visited her, and one morning, caught a fever spike early enough to allow the doctors to identify the bacteria. They were able to insert a catheter to administer antibiotics directly to her heart, in time to prevent a possibly fatal infection.
The hardest part of having preemies in the NICU is that you don’t trust that you’ll ever bring them home. Morgan had ongoing heart problems, and even though the doctors told us she was making good progress, it was slow. Just when we thought we were about to bring her home, she would have a life threatening infection, or forget to breathe, and then they would reset the clock for that homecoming.
When we finally did bring them home, the drama was far from over. The next few years would see us navigating bad news about Morgan’s heart and Dylan’s brain. When they were nearly two year’s old, a surgical procedure fixed Morgan’s leaky heart; at the same time, doctors told us that Dylan’s issues were incurable. A cadre of specialists evaluated his significant developmental delays. He didn’t sit up or roll over at six months of age. He didn’t crawl at eighteen months. At two, he didn’t make consistent eye contact. The doctors believed he might be on the autism spectrum.
I fiercely loved my children through all the diagnoses and procedures. I didn’t always believe what the doctors told me and, sometimes, I was a mama bear. At one check up, the doctor listed all the possible reasons for Dylan’s significant developmental delays. He warned that I should prepare for having a disabled child, “You should do some research on how to raise your son, because it takes a special kind of mother to raise a disabled child.”
I was surprised that the doctor’s expectations were all about mothering. I was angry at his patronizing tone. “I plan to raise both my children with the same amount of love and attention, because, really, what else do they need to succeed?” I retorted.
The doctor looked at me like I was tragically naïve and mumbled something about getting me some handouts with available resources.
Despite the doctor’s lack of confidence in me, and his strangely absent expectations for Tom, we were both determined to do whatever it took to help our children thrive. It didn’t take too many more appointments with well-meaning doctors to show me that parenting an atypical child could leave you bruised and beaten.
Too many experts pathologized my children, and they were often unintentionally cruel. But through it all, I was consumed by the instinct to nurture and protect. That mother’s love has carried me through the relentless vigilance required to adequately care for my children. I know that all parents experience highs and lows, but for me, and many other parents of children with disabilities, these extremes seem to be more intense.
It’s Not Easy Being 2e
Tom and I knew Dylan was different. He had been different since birth. As mentioned earlier, our pediatrician believed that he might be on the autism spectrum, a diagnosis that later proved to be untrue. But he did display many autistic-like behaviors. He stimmed regularly, he avoided eye contact, he had delayed speech and motor skills, he obsessed about numbers, shapes, and toys. He had weird food aversions. He rarely interacted with his peers; his idea of play was lining up his Matchbox cars by color, or size, or type. He screamed if he was in a loud environment and he did not like people touching him. He seemed unable to express or recognize love.
I prepared myself to raise a child with autism. I read and studied every recommendation of what I needed to do to help him grow and develop. I sought the advice of experts. I set myself up to be successful in parenting my child. I did all the right things — and they didn’t work.
I failed Morgan equally. She was stealthy in her disability. Despite her heart problems, she reached every developmental milestone early. She was a darling, social, vivacious baby. She walked and talked in full sentences at nine months old. In fact, she was so active, her fingernails and lips often turned blue because her heart couldn’t keep up with her busy body. After the procedure to fix her heart, she was up and playing within 48 hours. There was never an inkling that someday, she would be riddled with anxiety, crippled by perfectionism, and emotionally and intellectually shut down.
Like many 2e girls, she looked like an average child in the classroom. She worked slowly, but was obedient and quiet. She was a very compliant student who made no demands and tried her best. Socially, she also tried hard to get along. She made friends and didn’t cause trouble.
Then she made the critical mistake of standing up to the kindergarten “queen bee” in defense of her brother’s weird behavior. Initially she was only shunned, but as the year progressed, the bullying escalated and ultimately culminated in a physical attack. I had no idea that five-year-old children could orchestrate such a systematic, thorough dismantling of my child’s self-esteem and confidence.
I was a teacher at the elementary school my children attended. While I was teaching in the room down the hall, they were struggling to fit in. By the end of the semester, it was clear that being at school was having a devastating effect on them. Dylan began to wet his pants every day, to hoard garbage, and to count the days until school ended.
Morgan started to be increasingly self-critical, embarrassed about her brother, and angry with me. These feelings of anger caused her to lash out, then hate herself afterward for making her brother cry. We were spiraling downward and there didn’t appear to be any good solutions. At the end of the semester, I quit my job and brought my children home. I decided it would be better to sacrifice my career, than my children. I was grateful that Tom’s work made that possible.
It wasn’t hard to go back to being a full time mom. I loved that job. I had longed for many years to be a mother and I was ready to do whatever it took to help my children succeed. I knew that my twins had issues, but was not fully aware of how different they were from other children. After all, they were the only children I had ever raised; but as they interacted more with the outside world, I began to see them through the eyes of other people.
I tried to find ways to compensate, to be thoughtful of others. I didn’t want my children to be rude or disruptive. I certainly never intended to go out in public and ruin someone else’s day. I hoped people would realize that my children were wonderful people, even if they had to look past odd behavior to see them. Most days, I didn’t notice the quirks, until someone gave my child that look: the one that tells me they are judging my child and possibly my parenting.
If Only They Knew What They Don’t Know
Cheese Sandwich Meltdown
When Dylan was five, he had many food aversions, had difficulty eating anywhere but home, and struggled to be functional when he was in a crowded place. Tom and I had worked for weeks to get him to be able to go into a restaurant. Each day we tried to acclimate him to the idea of eating in a restaurant. The first time, we drove by the restaurant. Then we stopped and stood in front of it. We looked through the window. We walked inside and right back out. We stood inside for several minutes. We went in, ordered food to go and took it home. Then, we ordered food to go and ate it sitting outside the restaurant. Finally, after several weeks of this, we went into the restaurant, sat down, and ordered food.
This was during Dylan’s grilled cheese sandwich phase: the only food he would eat at the time. He also had a particular problem with having his sandwich cut in half. He would not eat his sandwich if it were halved. So, I ordered a grilled cheese sandwich, and asked, and verified, that his sandwich would not be sliced. When the sandwich arrived, cut in half, Dylan started cry and scream, “It’s not supposed to be cut in half…it’s not supposed to be cut in half…”
The server looked at us with dismay. We quickly tried to sooth Dylan and get him to be quiet. The more I tried to explain that we could get another whole sandwich, the more upset he became. Finally, Tom tried to drag him outside. He was big for his age, and wiry, so a struggle ensued, which was accompanied by continued screaming. As we were fighting to usher both children out the door, I got that look and a few eye rolls.
Once outside, I eventually got him calmed down with a guarantee that I would make him a whole grilled cheese sandwich at home. Tom stayed with the twins while I went back inside to pay for our food. I approached the server and asked if she could please just wrap it to go. She agreed, but warned, “You know, the more you give in to that type of behavior, the worse it will become. You should do yourself a favor and just not put up with it.”
I wanted to slap the smug look off her face. I felt a real desire to grab her and shake her. I wanted to shout, “Do you have any idea how many weeks of boring, painstaking, humiliating work you just undid?!” I wished I could have somehow made her understand how hard it had been to make it this far. If only she could have comprehended what it took to get him to come in, sit down, and be ready to eat in a restaurant. I wanted to ask her just what she thought I should do? What exactly did “just not putting up with it” entail?
But that is the problem with Dylan’s behavior: it looks like he is being a brat. There aren’t any obvious markers to let someone know that he has a disability. His mental health issues sometimes make the simplest activities a major undertaking. Parents of neurotypical children may not have the perspective to understand that the everyday activities they do with their children, are not that simple for parents of 2e children. We never take for granted that our children will behave “normally” in any given situation. Most of our outings are done in a state of high anxiety, for both our children and ourselves. Our children are anxious because their disabilities make the outing fraught with perceived difficulty and danger. We are anxious because we know a melt down can happen at any moment.
Failure Is Not An Option
Meltdowns aren’t the only painful parenting experience. It is equally gut wrenching to watch your child’s sense of self slowly erode. When Morgan started kindergarten she was very worried about not being able to read and write. The night before her first day of school, we overheard her little five-year-old tremulous voice reciting how to spell her name. Then, there was a long pause, and suddenly she gasped, “What if is there is another Morgan!”
She is a perfectionist with high anxiety about failure. I think that is what ruined reading for her at such a young age. Her twin brother learned to read at 18 months of age; by the time they were three he could read Magic School Bus books flawlessly and recall every detail. Since she was just starting to sound out words, she was very frustrated by his seemingly effortless ability to read. Just before her sixth birthday, she and her Dad were online ordering unusual plastic animals for her collection and she wanted him to find her an okapi. When her Dad told her he didn’t know how to spell “okapi,” she sniped sarcastically, “Why don’t you ask Mr. Smarty-pants?” She refused to let her brother help her sound out words and wouldn’t practice reading if he was anywhere around. She didn’t want to hear my little encouraging speeches about how everyone has different abilities and developmental stages. She was just plain mad that he could read better.
Things got worse when they started kindergarten. They were in the same class and everyone commented on her brother’s reading ability. She didn’t compare herself to other children who were at her level of learning; she compared herself to those who could read better. As the year progressed, her stress level escalated and she began to refuse to do any work at school. Her teacher had her stay in at recess and tried to help by working with her one-on-one. Since Morgan was a very social child, this was more like punishment than support.
Her anxiety and perfectionism began to cripple her ability to produce any work in the classroom. She spent an inordinate amount of time worrying that she was not doing things right, that she would fall behind, that her teacher wouldn’t think she was smart, and that she wouldn’t have any friends. All these stressors began to take their toll on her five-year-old psyche.
I tried everything I could to ease her worry. I worked with her to help her feel more confident in her abilities. I tried to build her self-confidence. We did extra work at home to give her a chance to practice without pressure. I made a deal with her teacher that we would bring home every worksheet she didn’t finish each day so it wasn’t piling up and adding to her anxiety. Once we got home, we selected one or two things to practice, such as story writing or math problems, and threw the rest away. I focused on the things she could do so well, like vivid storytelling, intricate art creations, creative problem solving, and incredible vocabulary range, but nothing seemed to help; she couldn’t see past the failed work.
The Queen Bee’s Sting
She was struggling socially, too. The kindergarten queen bee often excluded Morgan from activities and the other girls followed her lead. One day when I picked up Morgan, she exclaimed that she didn’t want to be in school any more because she didn’t really belong there. When I probed for reasons why she felt she didn’t belong, I found out that she was targeted as an outsider because she didn’t live in the same town as the school.
We lived 30 minutes away in a less affluent community. My children were enrolled at this highly sought-out school because I was a teacher there. The queen bee used our address as a tool for rejection. On this day, Morgan had been playing house with another girl whose speech and movements were impaired, due to a brain tumor. The popular girls told Morgan and her playmate that this house was only for the children who lived in the neighborhood, and promptly evicted them.
When Morgan began to cry, the teacher came over to see what was wrong, and the evictor told the teacher that Morgan was refusing to wait her turn. The teacher, who was a kind and competent teacher, believed this consummate lie and encouraged Morgan and her friend to come and do another activity. Both girls were so intimidated that they never told the teacher what actually happened.
Sadly, this was not an isolated incident. The queen bee regularly pushed her out and took over many of Morgan’s activities, while skillfully making it look like Morgan was the problem. I talked with her teacher, who began to watch more closely. She often interceded on Morgan’s behalf, but she couldn’t follow her around all day. So, the bullying continued, in a stealthier way. The queen bee broke all Morgan’s crayons in half. She hid her scissors. She glued the pages of her workbook shut. She hid her favorite toys. She told the other children not to play with Morgan, and they followed her lead. The only child who didn’t exclude her was the girl recovering from her brain tumor.
Because they were both outcasts, they regularly played together. The queen bee and her pack labeled them as “retards.” She began to see herself as impaired and refused to believe any conversations I had with her about how smart she was. She simply could not see herself as a gifted person. In her own mind, she was defined by her disability. Also, she was often lonely. Her friend missed a great deal of school because of her health issues, so Morgan was regularly the odd girl out.
Then the queen bee sniffed out her academic weakness and began to taunt her and tell her she was stupid because she couldn’t read. This child — whose imagination is rich and active, who tells stories with amazing depth and clarity, and whose vocabulary is off the charts — began to hate herself.
She cried on the way to school, she called herself names, she disengaged from learning. The coup de grace was when the queen bee had two of her minions hold Morgan down while she pulled off her glasses and stomped on them. When I called the queen bee’s mother to talk about it, she told me Morgan must have misunderstood because her daughter was not a bully.
I watched five years of love and encouragement, and efforts to build my child’s self esteem, just wash away. She became quieter, more easily upset, less willing to engage in creative endeavors. She began to compare herself to the more affluent children at her school. She asked why our car was so old? Why didn’t we have a bigger house? Why didn’t we live near the school?
Then she began to criticize her brother. Why was he so weird? Why did she have to go to school with him? Why didn’t we have a normal family? I watched the lightness and joy evaporate from her personality. The combined pressure and judgment from teachers and fellow students eroded her confidence and character. It was a death of a thousand cuts.
Do No Harm
School wasn’t the only place our family struggled to acclimate and function. Medical treatments with Dylan were nightmarish. He could not tolerate the physical intimacy and intensity of doctor and dentist visits. Coupled with fear about the potential for pain, his disabilities made even the most benign checkup difficult.
Consequently, when our dentist proclaimed that our nine-year-old son had a tooth that needed to be extracted, I had a moment of pure dread. It had cracked from nightly anxiety-induced teeth grinding. The new tooth was ready to come in, but the cracked one wasn’t loose enough to come out on its own, yet. She recommended we make an appointment to have it extracted. Dylan refused to have it pulled and told the dentist he would pull it himself. She compromised and proposed he could try wiggling it every night and see what happened; but her parting words to me were, “Don’t let it go too long. If it abscesses, it could get ugly.”
On the way home, I told him that the dentist was concerned that the tooth could abscess if it didn’t come out pretty soon. I casually suggested that we should make an appointment and get the dentist to pull his tooth. Armed with our dentist’s suggestion that this could be a do-it-yourself project, he replied, “No Mom, I’m not doing that, I’ll pull my own tooth out.” I started to work up my arguments but, in truth, I didn’t want to go through an extraction either. So he wiggled and I waited.
In the vain hope that he would actually pull it off, I let it go too long. Two months later, while brushing his teeth I discovered the dreaded abscess. Filled with guilt and worry, I dug out the referral to the oral surgeon. He agreed to see us first thing the next morning for an emergency extraction. I spent that evening trying to prepare Dylan for the visit. I explained what they would need to do, and that it would be over pretty quickly. On-line, we researched about abscesses and tooth extractions. I tried to reassure him the best I could. He was nervous, but seemed to understand the necessity. He was willing to get it done.
When we arrived the next morning, I pulled the doctor aside and gave him a quick run-down of Dylan’s issues. The doctor reassured me that he had lots of experience with kids like our son. “Don’t worry, everything will be just fine.”
I had my reservations, but I was willing to give him the benefit of the doubt. The doctor explained everything they needed to do. He was kind and reassuring. He told Dylan that the extraction would only take a few minutes and wouldn’t hurt because the nerve would be deadened. They asked me to go to the waiting room, I told Dylan I would be right outside and the nurse would come and get me if he needed me.
About a minute later, the nurse rushed out to grab me. I hurried into the exam room to find Dylan wild-eyed with panic, a male nurse holding his hands, and the doctor with a syringe hidden behind his back. When he saw me, Dylan tore his hands loose, ripped the cotton packing from his mouth, and jumped out of the chair. “I don’t want a shot!” he shouted. I hugged him and tried to calm him down. I reassured him that the shot is just a quick pinch and it would deaden the nerve so it wouldn’t hurt when they pulled the tooth. I tried to get him to sit back in the chair. I promised I would hold his hand and stay with him. He wasn’t having any of it. I could tell the doctor was getting impatient.
Finally, the doctor asked me to step outside. He told me that he had other patients waiting and wouldn’t have time to do anything more that day. He wanted to put Dylan on antibiotics for the weekend and then reschedule a Monday appointment. His plan was to give Dylan a sedative he could drink, and once he was semi-conscious they would give him the shot and pull the tooth. I asked the doctor to tell me everything they would do, step-by-step, so I could prepare Dylan and give him time to process it all.
On the way home, I related everything the doctor had told me. I reassured him how easy Monday would be. He would come in, drink some medicine, get sleepy, and when he woke up, it would all be over. But he just kept repeating that he was scared and he wasn’t ready.
I’m ashamed to say that I scolded him. I was frustrated that we weren’t able to just get it taken care of that morning and afraid of what the abscess might do. I was worried about the extra expense of another visit and prescription. I told him that he was old enough to take responsibility for his health and that sometimes we have to do scary things to make sure we stay healthy.
Dylan started to cry and promised he would cooperate on Monday. He revealed that he hadn’t been able to do it that morning because everything was unfamiliar and happened too fast. Then I felt even worse. I had let my own fears and frustrations get us into a situation that was doomed from the start. I added to the problem by not following my instincts and staying with him.
Finally, Monday morning arrived. Despite the early wake up, and not having food or drink for 8 hours, he seemed remarkably calm. My stomach was in knots and my head was pounding, but I hid it well as we drove to the doctor’s office. We had a nice discussion with the receptionist about the merits of various chess moves and then headed back to the exam room. Dylan seemed ready to go. My blood pressure even started to decline.
Then the doctor walked in with a syringe.
He turned to me, “You know, I have been thinking about this all morning and I really feel he would do better with a shot of ketamine.”
Dylan jumped out of the chair, “I thought I was going to drink something to make me sleepy,” he shouted, panic rising.
I stepped toward him and cautioned, “We have to do this, your tooth is abscessed and it can be really dangerous if we don’t get the infection cleared up!”
Too late for reason, he bolted for the door. I grabbed him and tried to pull him back into the room. By now he was wild-eyed and struggling like a trapped animal. His adrenaline was giving him super kid strength. No amount of calming or comfort was going to help.
Two nurses, one a very large man, held down my wild fighting boy while the doctor quickly administered the shot. As the medication began to take hold, his fighting slowed and he began to droop.
I stroked his arm and fought back my rising anger, “I’m sorry we had to hold you down, but you have to get this done.” He looked at me through teary eyes, fighting the anesthesia.
The doctor patted me on the shoulder, “Don’t worry, it will all be just fine.”
I wanted to say to him, “No, I doubt it will be just fine! I have betrayed my son’s trust and will probably be dealing with the fall-out from this for a long time.”
The doctor assured me that he was in a dissociative state and even though he seemed conscious, he really didn’t understand what was going on, “He’s not really hearing anything you say. You can go to the waiting room, this won’t take long now.”
“But I promised him I would stay with him,” I told the doctor.
“I’m sorry, you can’t be in the room,” he replied, as he firmly escorted me out the door.
I sat in the waiting room feeling sick about how Dylan’s treatment had evolved. Finally, the nurse came to get me. As I walked into the room, the smiling doctor told me that everything had gone very well. “Don’t worry about a thing, he won’t remember any of it,” he again assured me.
I brought my groggy, nauseous boy home and put him to bed. When he woke up a few hours later, the first thing he murmured was, “I remember everything.” He then proceeded to give me a blow-by-blow account of the entire episode. His recitation ended with, “You are my Mom, you are supposed to protect me!”
I wished I had a video of that conversation to show to the doctor. I wanted to tell him that he should actively listen to the concerns of parents whose children have disabilities. We know our kids better than anyone else and we work hard to try to ensure a good outcome. I’m quite certain the doctor felt it was a successful surgery. Within a few days, he would probably have forgotten the incident, but Dylan didn’t forget. He is wary of any medical procedure and reluctant to trust doctors.
You Can’t Choose Your Family
For many parents, when the outside world is unkind to their kids, they can retreat into the comfort of their family. But for parents of 2e kids, sometimes, the extended family can be just as cruel. We have endured critiques of our parenting efforts and of our children’s behavior. Some comments hurt worse than others and some you can just let go. I try to understand how we must look to extended family members and even try to view things from their perspective. Sadly, that is not often reciprocated.
The first Christmas after my children were born, I took my ten month old babies home to meet their grandparents, aunts, uncles, and cousins on my side of the family. I had talked openly with my family about the clinicians’ various concerns about our children’s development and health. Tom and I had discussed with family members our worries about Dylan’s developmental delays and Morgan’s heart problems. Yet, despite our efforts to show we were informed and actively addressing the issues, family members still seemed to think we needed to be made aware that our children had “problems.”
At a large family dinner one night, a relative loudly commented that, “something is clearly wrong,” as he watched our son stare at his hand throughout dinner. In the awkward silence that followed, I wondered why this relative thought his comment was necessary. I tried to swallow the lump in my throat and respond without tears, but it was just too hard to do. I finally managed to say that we were meeting with specialists and hoped they could find out what Dylan needed, but it was painful to sit there being judged.
As my children grew and several diagnoses were assigned and discarded, we tried to keep our families in the loop. When we finally found out that the twins were 2e, we shared that news, and explained the meaning. Our families knew that both children had a high intellect and anxiety issues. They also knew Dylan had sensory problems and difficulty with social interactions. Close family members had heard enough of our experiences to formulate a general picture. By the time my children were preteens, Tom and I felt that most of our family members had a good understanding of both sides of being 2e. Then we went to a family reunion.
The first day we were there, an older cousin began to terrorize Dylan. He chased him on his bicycle and cornered him against the door stoop. When Dylan began to freak out and cry, his cousin laughed at him. By the time Tom got to the scene, the cousin had ridden away. Tom comforted Dylan and then they walked around until they found the cousin. Tom tried to explain to the cousin why this was so frightening to Dylan, but the cousin protested that he was just “playing.”
Later that day, he did it again. Dylan retreated to the motor home for refuge. This time my husband talked to the cousin’s dad. Another relative overheard the conversation, and later that day the relative told me that we were making a big deal out of nothing. He also warned me that we had better toughen Dylan up or he’d end up being a crybaby. There was no appreciation for his tenderness and lack of guile.
This is a child who feels love so intensely that he can hardly bear it. I have told my children I loved them many times a day, since before they were born. Morgan readily reciprocates and I bask in her sweet affection. Until Dylan was four, he never uttered those words. We had been told he might be on the autism spectrum, so I attributed it to that.
Then one day he sidled up to me and shyly whispered, “Mom, there is something in the kitchen for you but don’t open it until I am in my room!” Then he ran to his room and closed the door. I walked into the kitchen to find a wad of taped paper the size of a grapefruit. I peeled away layer after layer to find a post-it page in the center with “Mommy, I love you!” written in tiny letters.
I felt such an incredible rush of feelings: love, hope, excitement, and disbelief. Dylan had told me he loved me! It was then that I understood. His feelings were so overwhelming that he could only express them in writing from two rooms away. If you put that child into an arena where everyone tells him feelings are for sissies, life gets pretty confusing. He was devastated that family members, who profess to love him, teased and tormented him without remorse.
The rest of the reunion was not relaxing for anyone. Eventually, Dylan was afraid to leave the motor home and my husband was afraid to leave Dylan. When we all came together for meals or sitting around the campfire, we were fair game for jokes and judgment. While I can take being the butt of a joke now and then, I can’t stand by and watch that happen to our children; particularly when they already feel different.
It is difficult enough to know that most of the people in the world don’t understand your child, and often don’t try very hard to be accommodating; but it is much harder to watch it happen within the circle of your family. When it does, it brings all my own childhood insecurities to the surface, and reminds me of my own confusing past.
Wish I’d Known Then, What I Know Now
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.
