20 Sep We Tried Normal – 2e Family Stories: Chapter 1
We Tried Normal – 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
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 mark an “X” on the calendar each day to note how many remained 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.
 The repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.