Dear Son, Help Me Help You Help Me
An Autoethnographic Communication Timeline
This wasn’t supposed to be about me.
It was Nathan who struggled just to pass his classes; Nathan who couldn’t finish his homework before bedtime, no matter how hard he tried; Nathan who suffered disappointment after disappointment at his failed attempts to communicate his needs to teachers. This was about Nathan. It had to be. Nathan needed me, his mother, to be strong for him—to advocate for him. Nathan needed me to speak for him.
For the last several months I’ve been coaching Nathan to self-advocate in the academic setting. It’s his first year of high school—an arguably important, identity-shaping time of life—and up to this point he’s not taken part in any of his school planning, and I generally handle interactions with his teachers for him. I’m also in school—a senior in college, making mental and practical preparations for post-graduate studies in Communication. My concern for Nathan’s future prompted me to focus my undergraduate capstone research on the subject of helping students with disabilities learn and use the communication skills necessary for self-advocacy.
At the age of six, Nathan was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is a progressive neurological disorder in which the body inadequately produces the dystrophin protein (and its isoforms) necessary to muscle tissue regeneration. Resultantly, DMD is characterized by constant and perpetual muscle atrophy. Because dystrophin isoforms are also essential to proper brain function, a lack thereof in DMD patients often presents as a specific cluster of cognitive deficits, most markedly in Verbal IQ and immediate memory skills (Hinton, Fee, Goldstein, & DeVivo, 2007). Research also evidences that children with DMD, although comparatively “normal” in intellectual ability, consistently score lower than their “normally developing” peers in tests of learning, memory, and executive functions (Wicksell, Kihlgren, Melin, & Eeg-Olofsson, 2004).
Words never seemed to come easy to Nathan. While other babies his age were experimenting with single-syllable sounds that would eventually become words for identification (e.g. dada, mama, bobba), Nathan was content with spontaneous and nonsensical cooing. While others used gestures to indicate that their babbling corresponded to specific objects, Nathan provided very few clues in that regard (and seemed to get a kick out of my guesswork). While I genuinely believed that he understood people when they spoke, I had little proof, as baby Nathan didn’t seem too fond of language. So I accommodated him as best I could.
One memory stands out in my mind as exemplary of the communication style we developed (collaboratively, no doubt) early on in his life: Nathan, about ten months old, crawled to where I was seated at the kitchen table, pulled himself up on my leg, and looked me directly in the eye without making a sound. Without a moment of hesitation, and without any conscious thought, I pulled his bottle of apple juice from the refrigerator and handed it to him. He nodded affirmatively, put his bottle in his mouth, and crawled off. Although we’d certainly engaged in nearly identical exchanges numerous times before, that was the first instance in which I can recall knowingly registering our nonverbal way of interacting. It was as if I’d been audience to the scene and then realized in wonderment, “so that’s what we do!” Thereafter, it was easy for me to see how often we did this (daily) and how well it worked (for our purposes, flawlessly). When people commented on how quiet Nathan was as a baby and toddler, I told them—in jest—that Nathan and I communicated telepathically.
And people did comment. A lot. They meant well, but for me, as a first time mother, the experience of explaining, on a regular basis, that, “yes, he’s always this quiet,” was unsettling, and disheartening. There was nothing I could to do quell the voice in my head that wondered, “Is something wrong with my baby?” I couldn’t imagine anything more horrifying—more devastating—than something being “wrong” with my child. Of all the things I’d ever wanted for this life, being a mom and raising happy, healthy children was at the very top of that list.
As a toddler and school-aged child, I always had a favorite baby doll. This baby doll had its own stroller, swing, car seat, diapers, diaper bag, and dresser full of clothing. There was never a time when I was without my baby doll. It didn’t matter if I was going to the grocery store or to my grandma’s for the summer, to leave without it would have been unthinkable. I even threw elaborate birthday parties for my baby—my siblings, friends, and (of course) dolls dressed in their best—complete with gifts, decorations, and cake. At the time, baby dolls generally came as girls, but once I figured out that an easy wardrobe change would allow me to swap genders, my babies were always boys. So, even as a very young girl, I was a mommy, and a boy’s mommy at that.
I told Nathan’s father, my now ex-husband Matt, that I was pregnant as soon as I knew, which was too soon to register on a pregnancy test. Still, I knew that I was pregnant and I knew I would have a boy. Matt and I were both twenty-two, newly married and eager to start our family. My greatest fantasy had come true.
Nathan truly was everything I could’ve hoped for—a perfect baby boy with huge brown eyes and a head full of ash-blond hair. I “wore” him in a carrier everywhere I went, even as I did housework, so as to always feel his tiny lungs expand and contract against mine, his chubby cheek a warm pillow on my heart. It pained me even to lay him down to nap, so I carried him while he slept, too. It was as if he were a new appendage that I couldn’t imagine having ever lived my life without.
Baby Nathan was quiet, and naturally content. He slept through the night at two weeks, and never went on crying jags. We spent so much time together that it didn’t seem too odd to me that he displayed so few attempts at verbal communication. Although I sometimes registered an intuition of concern for Nathan’s silence, I told myself that he had no need for language when I so readily spoke for him. Speaking for him came so naturally to me that I often forgot I was doing it until people remarked on it, often using terms like “cute” and “sweet” to describe behavior that I could tell they found unusual. This became a constant source of self-consciousness for me. Every time a friend, family member, or well-meaning stranger commented on how little Nathan communicated and how much I communicated for him, I retracted a little further into our private world—anything, really, to avoid the thought that something might be wrong.
It felt like a major loss when I had to reenter the workforce and register Nathan with a childcare provider. Up to that point, I’d been a stay at home mother . . . which meant it had not been too difficult to shield him (or, really, myself) from the reality of his comparatively underdeveloped communication skills. My return to work was accompanied by the gravest, darkest depression; it didn’t seem real to me that I wouldn’t be spending the day with my child. It’s not how I’d planned things. The little girl in me held even tighter to her baby doll, as if letting go might bring the entire world crashing down.
Luckily, I was able to find a kind woman who provided childcare in her home, right up the road from my workplace. “Susan” had a clean, spacious house with a large playroom. About six toddlers populated this space on a daily basis. Susan encouraged me to stop in on my lunch breaks, and whenever else I felt like it, which is exactly what I needed to hear. And I did take her up on that offer, often.
It was during my daily visits that I saw just how “different” Nathan was from his peers. While they sang songs, poked and pulled at each other, and broke crayons in feverish attempts to depict letters, numbers, and family members on paper, Nathan sat quietly, watching—always watching, never participating. Clearly concerned, Susan approached me ever-so delicately about the differences she, too, noticed. It was obvious to me she was being gentle—tip-toeing around the proverbial elephant in the room—and I felt sympathy for her difficult position. She presented her observations to me as if she were troubleshooting with me. But I was not ready for troubleshooting something that I could hardly acknowledge. I responded to her innocent inquires with defensiveness—of Nathan, of myself, of all the parenting knowledge I’d gleaned from books and parents and doctors. When Susan asked if I’d ever had Nathan’s hearing tested, I told her that his hearing checked out just fine (while thinking to myself, “is this lady getting an attitude with me?”). When Susan remarked on how Nathan refused to eat at lunchtime, I squeezed his chubby legs and said, “It doesn’t look to me like he has a problem eating.” One day Susan showed me art the kids had worked on that day. Nathan, she said, had drawn nothing. She handed me a seemingly blank page and shook her head to express her frustration. When I turned to Nathan and asked about it, he waved his arms up and down excitedly and pointed to a tiny dot on the paper. With great satisfaction, I held the paper up to Susan and corrected her: “But the page isn’t blank. Nathan just pointed to this little purple dot—can you see it?”
Susan sighed and insisted she didn’t see. I was convinced she was trying to win and just wouldn’t admit to seeing it. Either way it didn’t matter. What did matter was that Nathan exhibited no interest in making her see.
Not more than four months later, I showed up at Susan’s house midday with a maniacal smile on my face and announced, “I quit my job!” Susan laughed and gave me a hug. She said she felt it was best that I have Nathan with me during the day, as it was clear that’s what I wanted more than anything. And she was right.
Nathan wouldn’t have to start kindergarten for at least a few more years, which to me meant I had more time to help him catch up. When I brought my concerns to our family doctor, she insisted Nathan would do better with a more disciplined approach to learning. She explained that in her homeland of India, children started learning at much younger ages, and so they had no chance of getting lazy about it, the way American children do. She asked about our routine and I was embarrassed to admit that we didn’t have one; my philosophy was to integrate learning opportunities into our daily routine so that learning could happen naturally and pleasurably. Dr. Bhushan corrected me emphatically: “That is his problem! He does not take learning seriously! It is not a game! It is something he must do whether he likes it or not! He should be practicing his letters and numbers at least four hours a day!”
That sounded extreme to me, but I had little else to go on and I hated the thought that I was somehow shortchanging my son with what my doctor, a trusted family friend, seemed to find a lax parenting style. So I began “homeschooling” Nathan several hours a day. These were laborious hours, to put it lightly. My first objective was to teach him the letters of the alphabet. We’d spend an entire day on one letter—with worksheets and songs and crafts—only to find that the next day, any progress from the day before would be completely lost. No matter what I did or how much work Nathan put into his activities, he just couldn’t seem to retain new information from day to day. Each session left us both frazzled and, not unusually, in tears.
It was clear to me that I was unequipped to help my son, but I didn’t understand why. As Nathan had not yet been diagnosed and his pediatrician insisted he was a normally developing child, I could only blame my own shortcomings as a mother. I was young and in an unstable marriage, with few resources and next to no familial support. I felt powerless. Fear and guilt were the overriding emotions of my every waking hour, and the cause of many sleepless nights.
By the time Nathan entered kindergarten, he was measurably behind his peers both academically and communicatively. He spoke very little, and when he did speak it was indistinctly enunciated and nearly inaudible. The gravity of the situation was clear: My son, who relied on me for his communication, would be spending the majority of his waking hours in a strange place, surrounded by strangers who wouldn’t understand him and, therefore, wouldn’t know how to help him.
Just a few weeks into kindergarten, I requested a meeting with his school. A number of specific circumstances prompted my request: Nathan’s daily reports had been consistently disappointing, his self-esteem was visibly slipping, it seemed he was making no academic progress, and I believed his teacher was mistreating him. (During that time period I met Nathan and his classmates for lunch in the school cafeteria several days a week. Two of Nathan’s classmates spoke regularly of Nathan’s teacher yelling at him. When I asked Nathan about it, he couldn’t articulate what was happening, but I knew something was.)
Nathan’s teacher, guidance counselor, several special education professionals, and a psychologist sat at a round conference table at the meeting, with me, Nathan, and Matt grouped together at one end. We seemed to be enveloped by a cloud of somberness. Few attendees made regular eye contact with me—that is, other than the psychologist, a district employee charged with assessing Nathan’s learning aptitude (i.e. Intelligence Quotient) within the public school system. The psychologist was overtly sure of himself—condescending, even. Although I remember little of our exchange that day, some details are indelibly branded on my memory. The psychologist reported that, after a couple of hours with my son, he’d determined Nathan was “severely cognitively delayed.” He explained that Nathan couldn’t count past one. When I told him I’d witnessed Nathan counting to ten on numerous occasions, the psychologist acted as though he didn’t believe me. He referred to my son as “ineducable” a number of times. Nathan was sitting next to me to witness the whole thing. My instinct was to cover his ears—to shelter him from any audible indication that he might not be capable of functioning as any “normal” boy would be—because by then I’d learned what powerful scaffolding for self-image labeling can be: When Nathan was about eighteen months of age he had learned to say, “I love you” in spite of his proclivity for silence. Only it came out, “Iyuyou.” I would say, “I love you” and Nathan would say, “Iyuyou” in return. Sometimes when I held him he’d say, “Iyuyou” and give me a snuggle, a hug, or a slobbery kiss. It was clear to me—unmistakable, even—that my cherub-faced baby who barely uttered a word was saying, “I love you.” It was with great pride that I encouraged Nathan to say, “Iyuyou” to his Nana, and it was with some prompting that he braved past his introversion to do it. But Nana wasn’t convinced. She said, “Oh, come on! He’s not saying I love you!” Nathan flushed and recoiled. My heart spasmed. Never again did I witness baby Nathan attempt to say, “Iyuyou,” even when I begged. It was as if he’d forgotten how to form the words. It seemed to me that his Nana’s disbelief in his ability to say I love you was enough to scare this sensitive child away from trying altogether. I had no way of knowing then that Nathan would not again attempt to say, “I love you” until well into his thirteenth year.
Reliving this painful memory at the psychologist’s quick and reckless labeling of my son, I was infuriated. Nathan’s dad was equally infuriated and verbally reinforced my allegation of the psychologist’s carelessness. The meeting rapidly devolved into a joint questioning of the man’s intelligence. It was a nightmare, fueled by a combination of shock, disbelief, anger, and grief—a potent mixture that would take years to sort out emotionally. It was clear to me that Nathan’s academic progress—and ultimately the development of his self-esteem—would be significantly hindered by the mere fact of others’ perceptions of his difficulties.
My current studies have led me to an understanding of how disability may be socially constructed. At the time, however, I had no name for this phenomenon; it seemed almost a figment of my imagination and therefore insurmountable to me. It was the ultimate powerlessness. I came to embody a type of rage I couldn’t name (who and what was I mad at?), and a sense of shame and guilt for the rage (why didn’t I have better control over my emotions?).
As much as I wanted to believe that school psychologist was a complete quack (and I still believe he was unprofessional and ethically irresponsible in his approach), the deepest, darkest parts of my psyche tormented me with doubts about my son. This was, by far, the hardest thing to live with during this time. I was horrified by the questions that circled through my mind on an obsessive reel: Can Nathan comprehend love and caring if he doesn’t verbally express it? Is he aware of my love for him? Can he even process feelings? Or is he just a shell with an unthinking, unfeeling brain inside? These thoughts were too shameful to share with anyone; I couldn’t even bear to write about them in my journal. Even now, I acknowledge them with marked difficulty. Although I now understand this type of dissociation is a natural coping mechanism in the face of such shock and pain, it still hurts my heart to know that I ever felt that type and amount of distance from Nathan. It was as if I’d lost my child and his non-communicating self could offer me no way back to him. Every day I sunk further into this black hole, far away from feeling anything. Around this time I started seeing a therapist.
Under my therapist’s advice, I integrated coping techniques like meditation, mindfulness, imagery, deep breathing, and journaling into my daily routine. Although I only journaled sporadically, it helped then, and it helps now, to sort out the mess of emotion I was experiencing. Journal entries from that time show a depressed young mom, wracked by self-doubt:
October 15, 2004
“ . . . constant feeling of guilt over not being able to do enough for Nathan . . . “
October 23, 2004
“Today I have been depressed, but I am working through it. I managed to pull myself out of bed fairly early this morning, even though I really just wanted to pull the covers over my head.”
November 2, 2004
“We spent too much money [on Nathan’s birthday], probably because of my fear of not doing enough . . . . I’m just never sure if what I’m doing is good enough.”
These are just a few examples of a long line of passages conveying the same theme. Examining them now, I’m struck by the sheer hopelessness they exhibit. It’s emotionally wrenching to experience all over again, but necessary to understanding just how and why things developed as they did.
And that’s a large part of what I’m doing now: reconciling my present with the past. There’s so much I would like tell my younger self. I want her to know that she wasn’t failing her child—that she really was in over her head and doing a remarkable thing just to stay afloat. I want to say, “Holly, that pediatrician was wrong in overlooking the things you brought to her attention. She should have taken your concerns seriously, rather than suggesting you weren’t doing enough to teach him. It was a great injustice for you to have had to carry that burden.” I also wish for her to know that things would not always be so difficult, and that both she and Nathan would come into their own and communicate with the world in beautiful ways.
But it wouldn’t get better before getting much worse.
Later, another doctor in a long line of hospitals and white coats watched my expression solemnly, solemnly, as before his lips even parted he communicated with his eyes what I had been so afraid to hear. He saw the solitary tear escape down my cheek and reminded me that it was not healthy for my child to see such grief. What a fool he was! He had no idea, no clue, that I was exercising every ounce of restraint I had at that moment—that inside I was screaming. Little did he know that his words had ripped through me like heavy artillery, so that my immaterial self had shattered and collapsed inwardly and he was only seeing a shell of makeup on my face. That day, in the doctor’s office, my heart stopped. It was obliterated into microscopic pieces—rendered unrecognizable and irreparable. To this day, it only ticks by way of human intervention—by way of mechanics. It is a mechanical heart.
This is a passage from an essay I wrote in early 2006 (nearly a year after Nathan’s diagnosis with Duchenne Muscular Dystrophy), entitled Mechanical Heart. The essay won an honorable mention in the Marjorie Blankenship Melton Creative Writing Award in Nonfiction—in 2013. It had been that many years since I’d read it. Admittedly, I didn’t even read it for edits before I submitted it. It was just not something I felt I had the emotional energy to revisit. At the same time, I needed to release it into the world. (I was horrified to discover months later, when after a couple glasses of wine I worked up the courage to revisit it, that I’d submitted with a major typo!)
The time following Nathan’s diagnosis was surreal and bewildering in the most terrifying way. While it seems a diagnosis might could have provided some relief from the uncertainty (or at the very least the self-blame) of the situation, it really only intensified the nightmare: Now I had legitimate proof that something was “wrong” with my son—and inevitably with our family unit and with me, his mother. This word, “wrong,” is harmful, and at the time I was deeply entrenched in a socially-constructed concept of disability in which the word “wrong” was the prevailing association. I knew very little about Duchenne Muscular Dystrophy, but that didn’t matter. What I did know was that my son and I were now part of that strange and unfamiliar “other,” living in the land of developmental wrong-ness. My son’s diagnosis might as well have been my own (and I’d love to hear his version of our story of coexistence in this alternate dimension). That feeling of hitting the hard, cold reality of his diagnosis might best be termed as “psychologically dizzy.” Nothing appeared to be the same as it had been before, and nothing felt “real.” One night I had my sisters over for dinner and, as I was doing dishes, I realized I was dissociated—I was watching my hands work as if they weren’t my own and I couldn’t locate the feeling of being connected to them—and that put me into a panic attack. Next thing I knew I was laying on the floor in my sister’s lap, sobbing uncontrollably. I couldn’t find words—there were none—to explain what was happening. This is a description of just a few moments of what my entire life felt like at the time. Like Kafka’s insect monster, I’d morphed practically overnight into something I couldn’t recognize—with no warning and no instruction for adaptation. The world was new, but not in a bright and wondrous way. It was, instead, dark and menacing.
Possibly even worse than knowing something was physically wrong, however, was conceding the possibility of the psychologist’s rightness in his insistence of Nathan’s permanent inability to understand and/or communicate with me. It could have been one year, or two, or five, during which I walked the earth as a dazed and traumatized shroud of a human being. It was as if the wind had been knocked out of me—physically, mentally, and emotionally; to breathe would have been to cry . . . and to cry would have been to fall apart completely with no chance of recovery. And as that was my understanding of the pain—my fear of its whole-body-and-self consumption so great—I was compelled, within the confines of my then-limited coping acumen, to shove it down and carry on.
Knowing what I now know after years of therapy and both formal and informal psychological education, it’s no surprise that my suppression of emotion altered my personality completely. Concerned friends and family confronted me with their observations of the new person I’d become—someone distant and withdrawn, who seemed to have lost her trademark enthusiasm. At one point my best friend sat with me on my couch and explained that me she could no longer enjoy my company because it was as if I wasn’t there. It made her sad and she wanted to help, but she saw no way to do it so she was asking for my help. I understood her concern, and that she needed me to help her help me, but there was nothing I could do. I told her I understood. Then I told her there was nothing I could do. Then I watched her slip out of my life. It would be years before we’d reconnect, as I didn’t have it in me to care, much less try.
The pain of my reality was too much to share, anyhow. In addition to the obvious signs of withdrawal, there was a side of my experience that people couldn’t see and that I never discussed, because it was so intensely personal. This was, how detached I felt from Nathan. I was playing the solid parent but only going through the motions. Everything about life exhausted me—parenting the most. Even playing was too much. Nathan and I had a long-standing mommy/son “game” of back-and-forth sustained sound (e.g. “lalalalalala” and “hmmmmmm”). He’d sit in my lap and we’d press our cheeks together so we could feel the vibration of the sounds in our faces, and we’d go back and forth, initiating and mimicking our improvised “songs.” This very intimate exercise was our way of communicating without words, and sometimes it lasted for hours. There came a day that I couldn’t wait for our game to be over. It was just so draining that I hadn’t the energy to continue. I made an excuse to end it early, and that’s the last time I can remember us playing.
This dark period of my life is something I can only perceive of in hindsight; it reveals itself as I write. As best as I can tell now, I’d not only blocked Nathan, but also myself, from my self. There are no journal entries from this time, no recollections of deep conversations with friends. It was a time of silence—of muted feeling and expression. I was dulled down to an almost nonexistent experience of existence. Night after night I’d find myself awake, staring at the same spot on the ceiling and wondering how long I’d been awake, and I’d think to myself, “this doesn’t feel real. Life doesn’t feel real. It feels like a dream, but I know it’s not.” I wondered what was wrong with me, and feared I’d never come out of it.
To this day I wonder how my state of mind might have affected Nathan and his natural trajectory to communicative intelligence. At the time, I bought into the possibility—the supposed likelihood—that Nathan wasn’t aware of me, and that he’d never communicate with me. In my mind, my first child might never be knowable to me—me, who in relationships valued conversation above almost all else. It hurts now to know that, in spite of my best intentions, that time was mostly about “me.” It was like a matter of life and death, this question of how I would, or wouldn’t, make it in the world having lost my child in such a way. It has taken years to accept that I went through this, and that my son did too. I cringe to imagine the years he spent in awareness that his mommy was with him but somehow not with him, for as much as I believed then that he might not be aware of me, I now know him to have insight and understanding that often surpasses my own. I shudder to think of what he knows about what I didn’t know.
While my heart was broken and numb, day-to-day routine needs became an artificial life support system, “motivating” me to get up, to function, to move forward. Life had to go on and decisions had to be made. And in spite of how deep the well of my depression was, there still lived in me an indefatigable and dedicated mother who wouldn’t—could never—give up on her son. That stubborn faith is stronger than any doubts engendered by overconfident doctors and grave diagnoses. Although I had no tangible proof of good times ahead and the odds seemed against me, I did have a firm belief that I had looked into Nathan and seen a boy capable of much more than anyone had given him credit for. So I fought for my son. I insisted the school test him again, and provide him with more and better opportunities in the classroom. And when the school failed to reasonably accommodate my requests, I withdrew him from that school and found a better one.
Nathan entered his second year of kindergarten, in a new school, when he was nearly seven years old. Within two months he was writing his name. By the end of the year he could recite, and write each letter of, the entire alphabet. It didn’t matter to me that his peers still consistently outperformed him—he was learning! This was just the beginning of what would be a several-year streak of steady intellectual growth and academic achievement for Nathan. This cemented in my mind the belief that Nathan could continue to learn and grow, and go on to live a balanced and happy life, given proper ancillary services and the support of a competent and invested school faculty.
In spite of this upturn, I have very few memories of happiness at that time. One day I read a statistic online—that nearly ninety-five percent of all couples parenting a disabled child divorce after the diagnosis—and immediately identified with it. There was no question in my mind that my marriage was over. I was convinced—and still am—that the only reason we were together at that point was out of fear of taking care of Nathan alone.
This, even when it was clear to me that we were grieving alone. When Nathan was diagnosed, I’d expected nights of sobbing in each other’s arms. That never happened. When Nathan experienced his struggles—and then his victories—in school, I’d expected we’d merge into a love-powered unit of mutual consolation, and then celebration. But none of that happened, either. We slept on opposite ends of a king-sized bed and, by day, behaved as roommates—sometimes contemptuous and sometimes tolerant, but never loving. We agreed on the importance of having a younger sibling for Nathan, and we welcomed Ty’s birth as one might welcome a brainwashing in the face of inconsolable anguish. It was as close to “happiness” as was possible at the time, and enough so to forget about the chasm between us—between Matt and me, between Nathan and me—but only temporarily. In photos from that time I am always holding my baby, and there is always a profound sadness in my eyes.
When, in 2008, Matt and I divorced, Nathan was nine and Ty was three. It was clear to me I’d be going the entire parenting thing alone. Although I’d worried the most about this prospect, it was this very thing that empowered me. I had no one to answer to (or, to argue with) and no one to blame things on if life wasn’t what I’d hoped for. Somehow, seemingly overnight, an advocate was born.
We—Nathan, Ty, and I—moved to Charlotte in the summer of 2010. Our first four months there, living in a spare room in my younger brother’s house, were rough. When we moved from his house into our first apartment we had nothing but three suitcases of clothing, a television, a mattress, and three each of bowls, cups, plates, spoons, and forks. It was all we needed. In spite of our meager means, we were an enthusiastically unified team, and the time we spent that first couple months in our new apartment—sharing a full-sized mattress on the floor and “picnicking” on a blanket for meals—was like magic. I had a reawakening of sorts, to the dynamic bounty of love and support that was my small family. There were times I’d walk through our empty apartment and feel such a surge of gratitude that I’d burst into tears of happiness, and of disbelief. I couldn’t remember the last time I’d felt so alive. One night as the boys and I watched a movie from our makeshift bed on the floor, I found myself running my fingers through Nathan’s hair. He was cooing and leaning into it, the way a cat takes to a stroking. To my horror, I couldn’t remember the last time I’d caressed my son like that. It hurt wildly, this coming to—the recognition of my withholding from Nathan so fresh and forefront—but it was accompanied by something new. The pain was a tangible electric current running from my chest out to my limbs, and I knew I could use it for momentum.
Finally I was recovered enough from the blind-side of Nathan’s diagnosis to rebound into a kind of productive fury. Besides the forward progress of the move (which was, arguably, one of the biggest, scariest risks I’d ever taken), I’d also graduated into the anger stage of grief. And angry didn’t even begin to describe the extent of my fury. To put it bluntly, I was pissed off—pissed of and on a mission: I would counterattack the forces that had “wronged” my family. I started with the school system.
For years, Nathan’s educational accommodations had been provided for by his Individualized Education Program (IEP). Mandated by the Individuals with Disabilities Education Act of 2007 (IDEA), IEPs outline disabled students’ special needs, accommodations for meeting those needs, academic and personal goals, and parameters for the assessment and measurement of those goals. Each student with an IEP has a “team” that may consist of any number or combination of the following: educators, administrators, therapists, caseworkers, school board members, and family advocates. This team meets, at the very least, once a year to draft and/or revise the year’s IEP. However, parents may at any time request meetings to reevaluate and schools must, by law, accommodate such requests. The IEP planning process is far from perfect. For years we struggled, wondering, “is this is the best it gets?” For a long time, I believed Nathan’s biggest problem academically was his IEP—only school administrators really understand the document’s format, development process (using specialized computer programming), and vernacular. As I saw it, the reason Nathan was having such a difficult time in school was because his IEP was not “speaking” for him and his educators and administrators were not accommodating his IEP-specified needs in a beneficial way.
And I had good reason to believe this. We’d worked with a number of schools (between in-state and out-of-state moves and transitions from primary to middle to high school, Nathan attended six different schools in the years following my divorce) and experienced countless communicative setbacks in the process. There were four-hour IEP meetings in which I had to continuously interrupt and raise my voice just to be able to finish a sentence. There were impromptu meetings with all of Nathan’s teachers during which I explained exactly how we needed his homework assignments documented and during which teachers agreed on using a spreadsheet I had made, and after which—not even two days after which—every single teacher failed to use the spreadsheet. There were video recordings in which I angrily ranted about the condition of Nathan’s overstuffed and impossibly disorganized backpack while going through it for educators to see (this, of course, after more impromptu meetings discussing the impossible disorganization of his backpack). There were emails—and then longer emails—to teachers, administrators, school board members, and finally, the Superintendent about our troubles. There were phone conversations (many of them recorded) in which I pled our case in an attempt to work out something—anything—that would meet Nathan’s needs. I was, once again, feeling confused and ineffective. But this time I had my wits about me, and this time I had resources.
As a college senior in a communication program, it was time to conduct my undergrad capstone. My topic was clear: I would focus on Nathan’s problematic orientation with the public school system, and specifically with the IEP planning process, and research ways to improve his academic success within that context. This is the opening paragraph from my capstone research paper, entitled, “Grasping for Grades: An Auto Ethnographic Exploration of Student Self-Advocacy Communication Within the Individualized Education Program (IEP) Planning Construct”:
It’s time for dinner and Nathan is still doing his homework. Four hours have passed since he first nestled into his space at the dining table amidst an arrangement of his textbooks, folders, and loose paper. When I tell him to clear off his things he sighs, his cheeks red. His eyes dampen. I tell him he doesn’t have any more time to work—that I’ll message his teachers tomorrow to tell them he’d tried his hardest. It’s an autopilot speech—I give it several times a week—and Nathan knows it. I search his eyes to intuit his silent question: “Why isn’t my hardest enough?” This question, I imagine, is the reason he cries when, night after night, he is reminded that his time is up and, in spite of his best efforts, he has fallen further behind in his schoolwork.
True to the text, at the time our every night consisted of frustration over homework, bargaining over which assignments to sacrifice, and tears over possible repercussions at school. And my every day consisted of strategizing Nathan’s communicative autonomy.
The further I got into the research, the more difficulties I uncovered and the more complex my task seemed. The most obvious barrier I faced was the public school system. However, the more I wrote about it, the less focused my paper was. For reasons I couldn't understand at the time, my capstone project just wasn't gelling.
The paper was still incomplete when, at the end of my capstone semester, I submitted it with an emailed apology: “It’s not finished. . . . I’m embarrassed at having submitted less than my best work.” Although it stretched for nearly thirty pages (a major portion of that being a review of the literature), it didn’t seem to capture what I so desperately wanted to portray: the intimate experience of accompanying and empowering Nathan on his journey to self-advocacy. I’d not been able to connect with the project as I’d hoped, and I couldn’t figure out why.
It wasn’t until the next semester that things came together. A professor who'd been especially encouraging of my personal work agreed to advise me through an independent study course of my own design. I was determined to settle whatever was unsettled about the capstone project I'd not been able to complete. Under Dr. White's guidance, I explored the same topic that guided my capstone, but from a different angle. This time it was about me—about my experience of Nathan's struggles. And as I worked through this project, I realized the disconnect I'd confronted previously stemmed from the fact that all along I’d been writing a paper about Nathan, when the problems—and the answers—were within me. So, through the process of writing, and then rewriting, my research paper, I healed in a profound way.
These days I may spend hours stooped over my laptop in contemplation of all that led up to, and away from, a single sentence I’ve just written (I’ll file this experience under “autoethnography for therapy”). It’s as if I don’t even know how to really feel about my memories until I work them out on paper. So there are two Hollys to consider: The Holly who lived through the experiences, and the Holly writing about them. This Holly—the Holly who sits here, writing about pain that may now be safely viewed from a distance (although it’s always there, close enough to the surface to conjure readily)—is still in awe of what mother and son have gone through together (and sometimes apart). But this Holly has the tools to make sense—and make good—of it all. Writing this paper—and even more, sharing it—has been the key to helping me help my son, and ultimately myself.