~a social worker’s struggle to keep her professional and personal worlds from colliding~
Don’t hit that bike, don’t hit that bike, I repeated to myself. Learning to drive at sixteen, I tried vigilantly to avoid obstacles in the road. But my caution had no bounds; I would over-focus on that bike, and the car would veer directly toward where I least wanted it to go.
Fifteen years later, the road ahead looked straight and clear. I was happily married, eager to have children, and immersed in my work as a clinical social worker at a non-public school for special education. The students there were so impaired, so unpredictable that they could not be contained in any kind of special program available in the public schools. This school served children ranging from four years old to twenty-one, from learning disabled to emotionally disturbed to profoundly autistic, from socially avoidant to conduct disordered to bi-polar. Each day held new crises, altercations, interventions, and explosions of conflicting tempers, pathologies, and pharmacologies: A five-year-old boy with autism charging down the hall, screaming with his hands over his ears, running from something no one else can perceive; a frantic parent calling with the news that her eleven-year-old daughter has been hospitalized for cutting herself; a non-verbal twenty-year-old hurtling his body against the walls of a small office, trying to vent an inexpressible rage.
These children fascinated me. I was challenged by their challenges and open to their possibility. Nothing intrigued me more than finding a bridge to a remote child. I loved to look for patterns in their behaviors or obsessions and then try to anticipate and interpret their reactions. My greatest triumphs came in devising new ways to reach and teach these compelling children.
Steeped in this brew of disability, I passed my days providing therapy, defusing daily crises, and debriefing combatants. Several times each year I was called upon to train fellow staff members in safe crisis-prevention and intervention. And when all was quiet, I studied case files: brick-thick stacks of evaluations by psychologists, psychiatrists, neurologists, educators, physical therapists, occupational therapists, social workers, and many, many more. Together the documents painted colorful, albeit one-dimensional pictures of each child, from pre-natal development right through present-day functioning. I read them all with professional interest, took relevant notes, and filed them away.
And then I became pregnant. Right away my friends expressed worries for me: “Aren’t you scared, working at a place like that when you’re pregnant? What if one of those crazy kids tries to hurt you?” But physical safety was low on my list of worries. I had never been hurt on the job, and felt pretty confident with my personal safety training.
Something else entirely had begun to frighten me about working where I did while pregnant. Each day I came face-to-face with the myriad things that can go awry in the miraculous process that creates a human being. All around me I saw disabled, fragile, troubled kids whose futures hung like shadowy question marks above their heads. As the weeks passed, I realized I did not feel “other” from them or their families; I did not believe that disability could never happen to my child. In my world, disability was the norm; nearly all the children in my life at that time were severely impaired. Why wouldn’t it happen to my child?
I continued reading evaluations, but from a new, deeply personal perspective. Now I focused on the factors that professionals and especially parents posit as explanations for “what went wrong.” Every evaluation suggested another cause for the child’s dysfunction, dating back even before birth: “Pregnancy was notable for mother’s use of cocaine in the second month.” “Delivery was notable for use of vacuum extraction.” “Labor was notable for use of Pitocin/Demerol/epidural.” “Pregnancy was notable for premature delivery at thirty-four weeks… for mother’s use of decongestants during the second trimester… for mother bleeding in the first trimester… for mother’s use of cigarettes/alcohol/caffeine… for use of forceps during delivery… for volatile relationship between biological parents throughout pregnancy… for mother slipping on the ice in seventh month… for absence of pre-natal care… for mother’s exposure to Chicken Pox / Fifth’s Disease / Listeria / Salmonella / mercury / lead dust / second-hand smoke / dry-cleaning chemicals / household cleansers / exhaust fumes / asbestos / carbon monoxide / pesticides,” on and on.
Each evaluation offered me a new worry, so I resolved to shield myself and my child against any prenatally “notable” force. I saw how these children suffered; I saw how their parents suffered. I was bombarded with it each and every day. I would ensure that disability would not happen to my child. I believed my first maternal obligation would be to protect my child from all potential agents of harm. And I believed it was within my power to do so.
I focused on avoidance, on circumventing every imaginable hazard: Don’t hit that bike, don’t hit that bike. I was vigilant. I ate carefully and organically, drank only bottled water, kept a distance from colds and illnesses, breathed only fresh or filtered air, and exercised regularly and mindfully. I ingested no pain-reliever or antibiotic; allowed myself no alcohol, no caffeine, no soft cheese, no cold cuts, no tuna. I accepted no novocaine when I had two teeth filled. And I powered through my 28-hour labor with no drugs. Through it all, I felt virtuous and vital and clear of purpose. My eye was on the prize: I would steer clear of each and every risk factor and manage the outcome of my pregnancy.
Finally, after nine months of fastidious safekeeping, our beautiful son arrived. The instant of his birth was dazzling. That first glimpse of his head capped in silky baby hair. The climactic pronouncement: “It’s a boy!” His triumphant inaugural cry. The utter relief of release. Tears of joy and wonder on my husband’s face. The sudden surge from unprecedented pain to incomparable elation. The rush of pride and awe at having produced a new life, a whole person. A primitive recognition of accomplishment: “I did it!” The pristine exquisiteness of a just-born baby. The thrill of finally meeting him, seeing him, having him. A breathtaking realization: “I’m a mother!” All packed into a fraction of a single electric instant. And in the midst of it all, right within that very instant of astonishing exhilaration, I saw it on the doctor’s face: Something was wrong.
Never before or since have I fallen so hard, so suddenly, or so far. Here was the unthinkable possibility that everything was less than perfect. In that moment, there’s perfect and then there’s everything else. Nothing short of perfect will do. And so, despite all that led to this moment, I was blindsided by the crash.
In retrospect, the shock was more about the look on the doctor’s face, than about what was actually said. The doctor told us that our brand-new son had a small vascular problem that could require several surgeries to correct. He said it was “likely due to some flaw in fetal development, possibly in the second trimester.” He said, “Perhaps you had a virus.” Excuse me? No, I did not have a virus.
And just like that, my moment of brilliant sunrise clouded over, and now my radar was on. My husband remembers me asking him, that very first night: “If that went wrong, what else might be wrong?”
The answer to that question unfolded over the next several years. As our son grew, I diligently checked off developmental milestones as they were achieved: Eye contact? Check. Sleeping through the night? Check. Rolling over? Check. Using two-word phrases? Check. Wait a minute—what happened to eye contact?
While he was good-tempered and docile, our infant son was often found frowning in his baby stroller when people peeked in, tiny furrows embedded between his little brows.
“He’s contemplating the universe,” I explained lightly, secretly wishing for gurgles and giggles.
While the other two-year-olds in the playgroup were splashing gleefully through the sprinkler, mine was examining the sound a pebble makes when knocked off one step onto another. “He marches to the beat of his own drum!” my parents boasted.
Having memorized local roads and highways, my son would go to pieces if we took an alternate route to a familiar place. “He’ll keep us on our toes,” my husband would acknowledge, turning the car around.
But by the time our son was three, we had some real concerns. He didn’t know how to play with other kids. He grew anxious or frustrated whenever anything was new or challenging to him. We needed to keep life routinized and predictable for him; he couldn’t bear anything unexpected. He clung to us for security, consistency, and understanding, and seemed to recognize that separating from us would place him in a world that was incomprehensible and unmanageable to him—so he wouldn’t separate. He couldn’t count objects, couldn’t make eye contact, and often dissolved into unpredictable, high-intensity meltdowns. We were overwhelmed and exhausted. And what exactly was going on remained frustratingly elusive.
Over the years, our road together has been a bumpy one. Our son rebounded easily from three vascular surgeries that seem to have scarred us in some ways more than they did him. He has benefited from a wide variety of therapies for a wider variety of issues. At school, he has been well-placed in a special education program where he works diligently. We shore him up with reliable routines, healthy food, social prompts, and upbeat reassurances and send him on his way each morning, holding our breath until he returns home worn down by the demands of the day.
Today our son is a bright, feisty twelve-year-old. He is articulate and funny, affectionate and handsome. He loves to play, imagine, ask questions. He has an innate ability to memorize dates and historical events that confounds adults and astounds peers. His heart is kind and his spirit is gentle. Our son is as loving and loved as he is difficult and draining. He can be impulsive, provocative, hyperactive, rigid, and obsessive. Transitions must be scripted for him, until they become as predictable as the movies he watches and quotes over and over again. On bad days, if a tiny toy hat from a tiny toy figure goes missing, the whole day may be ruined for the entire family. He can be unstoppable as a steamroller, barreling through conversations, laying flat the feelings of others—especially his little sister. He cannot sustain focus and eye contact is still fleeting. He tends to play by himself because he doesn’t understand how to join with peers. He has had periods of incapacitating anxiety. His many phases and features reflect the multi-faceted hues of the autism spectrum, with undertones of attention deficit and hyperactivity. He bears heavily the Special Ed Badge of Membership: a brick-thick stack of evaluations, as weighty as our worries.
Sometimes, in my lower moments or his lower moments, I look at my son and wonder how we got here. One day I feel disbelief: How could this have happened, when I worked so hard to prevent it? Another day I feel bitter: My friend drank soda with aspartame every day during her pregnancies and her kids are just fine. Another day I feel blameless: I know I did everything I could to prevent this, so it must have been “meant to be.” Many days, like most mothers of children with special needs, I find ways to blame myself for my son’s difficulties. In my case I consider whether I was too anxious, too uptight, too worried during my pregnancy—if I had relaxed more, hadn’t been so vigilant, maybe he would have been okay. Had I learned nothing behind the wheel of the car, fifteen years earlier, focusing too hard on what I most wanted to avoid?
People have said to me that the universe gives us only what we can handle and that my son was meant for me. They say my son is lucky to have a mother who knows so much about children with special needs, who has (nearly) endless patience, who recognizes what help he needs and where to find that help. And that may be true. But I know another truth: My son has taught me lessons of humility and humanity that I would never have learned without him.
During my pregnancy, I fixed my gaze on that bicyclist by the side of the road: Don’t hit that bike, don’t hit that bike. Somehow or other, despite or because of my best efforts, I veered straight toward it. I hit that bicyclist head-on, and we are both bruised and battered and tangled inextricably together. So we sit, he and I, by the side of the road, and watch other cars and bicycles glide easily, carelessly past us. And we hold each other and love each other and feel so deeply thankful that our worlds collided.