Denial Ain’t Just a River . . .

Nor is grieving something that people only do at funerals. In fact, I can’t help but feel that moms and dads who don’t question their child’s diagnosis or even possibly fight it at some point would be in the minority. For me at least, denial and grief were all stepping stones on the path toward what ultimately transformed into acceptance. Looking back, those parts of the process were not necessarily examples of wasted effort—though they did consume a good amount of time and energy along the way.

After the journalist in me began raising my eyebrows at certain unorthodox aspects of C. J.’s development, I was desperate to find experts and answers that would confirm my worst fears were ludicrous. When my little guy still was not using any consistent or meaningful vocabulary by eighteen-months-old, I joked with other moms on the playground in the hopes that they would laughingly instruct me to simmer down and learn from their wisdom and vaster experience. They didn’t disappoint me and nodded approvingly when I explained that my pediatrician had authoritatively declared that boys were simply late bloomers on the verbal scene and remained that way much of their lives.

After C. J. refused to walk on grass during the spring of 2008, well-meaning friends and relatives chimed in that he was just being a cautious toddler. When he would stand motionless in the center of my mom’s backyard staring up at airplanes or listening to birds chirp, the gnawing feeling in the pit of my stomach intensified. Yet I pushed such worries into the back of my mind and told myself that he was merely being introspective or going through some oddball, little-boy pre-preschool phase.

Sure, he lined up trains and toy cars with a mania that was already consuming most of the free floor space in our two-bedroom condo. Yes, we had already left several Toddler-Time classes at the local library because C.J. couldn’t follow the most basic directions and was disruptive 75 percent of each session. Our life was becoming increasingly characterized by taxing, emotion-fueled tantrums that hit like the most random of lightning bolts.

It followed that each visit to the pediatrician during C. J.’s late toddler years was preceded with dread and anticipation—would today be the day the doctor noticed that we had missed one too many milestones? Would this be the time he recommended we call Early Intervention or arrange for a formal evaluation? Things got to the point that I insisted my husband take off work from his job as an attorney to accompany me to the most mundane of appointments. I was terrified of the inevitable—that some physician or nurse would inform me that my gravest anxieties about the “A-word” were more than the trappings of an overworked, uninformed, and easily rattled maternal brain.

Luckily for me, getting unexpectedly pregnant with my second son in the summer of 2008 was a convenient excuse to further banish such paranoia to the back of my brain. Between stressing out over the newest bumpkin and attending to the needs of my first, who was preparing to enter preschool, everyone’s kind pats on the back and bored eye rolls (“Katie, he is NOT autistic—can you please just let this go already?”) succeeded in granting me a stay of diagnostic execution. Yet, after months of Early Intervention evaluation and therapy to treat what progressed from C. J.’s speech delays to his admitted sensory issues to the overall struggles that I ultimately had to admit shaped nearly every aspect of all our lives, I was done.

One day, I worked up the courage to ask our occupational therapist if she thought he was on the spectrum. When she carefully replied that he demonstrated certain characteristics that coincided with that diagnosis, I began the process of acceptance—and grieving. For someone who doesn’t have an autistic child, this may seem like an inappropriate and even unnatural response. Realistically, my husband and I hadn’t been told that our son was going to spend the next year undergoing chemotherapy. He wasn’t dying, dead, or even physically unwell. But we had lost something all the same.

When C. J. was born and as he developed on a relatively normal path throughout infancy, we dreamed of how successful and adored he would grow up to be. As with most parents of any child, we honed in on strengths and achievements that we hoped would shape a bright future. He was strong and agile; it went without saying that he would ultimately grace some collegiate football field. Even as a baby, C. J. appeared focused on tiny visual details; we took this to mean that he possessed the sharpness and skill that had won my husband a degree in mechanical engineering and a lawyer’s license.

And, of course, our sweetheart was lovable and beloved. C. J. was and continues to be charming when it suits him. Blonde-haired, blue-eyed, and an incorrigible flirt, he prompted everyone around him—from pediatricians to other parents—to reassure our worst fears when we began to notice strange quirks and inexplicable learning deficits. They emphasized that he was far too social to have anything seriously wrong with him. But there was something undeniably awry, and that became more apparent as C. J. passed into toddlerhood and beyond.

When he was finally diagnosed with autism, we therefore grieved for the images of the future that we had so carefully sketched for our little boy. It wasn’t that we gave up on C. J. or the notion that he was someone great who will one day accomplish great things. But we were suddenly forced to abandon the idea that the path would be easy or even average.

Uncertainties crept into our hearts that painted new pictures of C. J.’s life to come. I found myself in anguish over visions of him being teased for his painfully delayed speech in grade school. Just as significantly, I dreaded the thought of what would happen to him when my husband and I were gone and he was thrust into the independence of adulthood.

And so I grieved for my loss of guarantees and promises of a happy ending. There continue to be many moments when I struggle with this sadness. Yet I also take joy in the realization that my family has started a healing process, as well. We are recuperating from the stress that it takes to live in a constant state of denial, and we are recovering from the sting of losing the person we thought we knew. At the same time, we are finding new fulfillment in rediscovering who C. J. is and what amazing possibilities lie ahead of him.


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