96: Just Joey

96: Just Joey

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Just Joey

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.

~Henry David Thoreau

As Joey climbs into the driver’s seat, buckles up, then backs the car onto the street, I am reminded of him as a little boy, fifty years ago, “driving” through our house and cruising the neighborhood, using the lid from my pasta kettle as a steering wheel. He was oblivious to other children, his sisters or the kids from next door playing hide-and-seek in the leaves or riding tricycles on the patio.

It was troubling to see him so absorbed in his own world, to the exclusion of anything else, but it was not out of the ordinary, not for Joey. It was just more of the perplexing behavior we had been aware of from the time he was eight months old, when I began to fear that he might be “different,” maybe even “slow,” certainly not developing as joyfully and remarkably as his sisters were or as predictably as Dr. Spock had taught us.

Despite my questions, throughout Joey’s first four years our pediatricians routinely dismissed my concerns about him. “Stop comparing him to his sisters. . . . Boys do not develop as fast as girls do. . . . You’re asking for trouble when there is none, Mother.” At nine months, Joey could only occasionally turn over, could not sit without pillow props, did not attempt crawling. He stayed on his tummy in one spot on the floor where I put him, scratching intently on the carpet for long periods of time or just laughing at his hands. He did not grasp anything offered to him, never put anything in his mouth, not a thumb, not a Cheerio. My husband accepted whatever the doctors told me. “Just wait. He’ll learn what he needs to do when he is ready.”

I wanted to think they were right, and there were times when I almost did. Shortly before Joey’s first birthday, he sat without props and made his first attempt to crawl. He eventually mastered a crawl, although a peculiar one, using only one knee and dragging the other. He made very good time. He discovered the joy of watching our front-loading laundry machine, incentive enough for him to pull himself to his feet to watch an entire cycle, screaming when it ended. I was as thrilled with his first tantrums as I was with his getting himself to a standing position. He had rarely cried before then, or expressed himself so effectively.

Eight months later, Joey was walking, holding onto furniture or someone’s hand. His big sisters were thoroughly delighted when, with one on each side holding a hand, they could walk together. One of my favorite snapshots is of our first three children at ages three and a half, two and a half and one and a half, walking in the park holding hands.

Joey was twenty-six months old when he let go of my hand to take off by himself, walking as if determined to make up for lost time. In other ways as well, he was making up for lost time: learning to use a spoon, practicing a few words, making his “beaver face” on command from the girls, who responded with giggles as he knew and cared that they would. He started climbing onto the couch to look out the window; dropping toys in the toilet to see what would happen; writing on the walls with crayons while announcing “I scrivvling.” He sprinkled baby powder throughout the house. He emptied the bookcases. He was no longer my placid little boy.

Joey was four when a new pediatrician joined the other doctors, who already knew us well. The new doctor recommended a comprehensive evaluation at a nearby university, to include observation and testing by a team of pediatric specialists. He insisted that my husband, Joe, attend at least the conference at the end of the three-month, once-weekly evaluation.

Joe did not feel as strongly as I did the need for the evaluation. He had not yet acknowledged that Joey’s erratic development was a concern. Not only that, he would no longer be able to rely on my support in his own endeavors. Joe was a college teacher, dedicated to his profession and to independent research and writing. I had, initially, enjoyed being a part of that by typing correspondence and manuscripts and proofreading galleys, beginning even before we were married. But my enthusiasm for his work was dwindling, as was any confidence in myself as a mother. Worse yet, I had quietly begun to resent Joe’s priorities, even though I realized their importance.

When Joe and I went to the clinic for the long-awaited evaluation conference, I thought I was somewhat prepared for whatever we might hear. I knew that Joe was not at all prepared to learn that Joey, his only son, was considered “retarded, unlikely to attend public school.” (We did not know that only then, in 1963, the federal government had begun to write laws mandating free and appropriate public school education for children with disabilities.) We were stunned, hearing that Joey had intellectual limitations as well as visual-perceptual and neurological impairments that accounted for his coordination problems, difficulty chewing, and his unusual gait.

It was too much for us to grasp all at the same time. We were silent the entire trip home, except for one comment from Joe. “Joey will never want my books,” he said. “The only legacy I can leave my son will have no meaning for him.” The resentment I had been harboring toward Joe dissipated. My broken heart was for him, for myself, for all of us, on a day I will never forget.

Joe did not live long enough to know that Joey would be okay. He died unexpectedly at age fifty-two following a massive heart attack, when the kids were eighteen, seventeen, sixteen and thirteen. He did not know that by the time Joey left middle school, he was no longer classified as mentally retarded but as learning disabled. Currently the diagnosis is “Asperger syndrome, severe nonverbal learning disability, average verbal intelligence, significant deficit in performance.”

Many years ago Joe saw his little boy driving an imaginary car, but he did not live long enough to see Joey as a young man driving his own car, purchased with money saved from his hotel housekeeping job. He saw Joey as a two-year-old taking his first walk, but did not see him walk across the stage at his high school graduation. He did not know that Joey took his place escorting each of the girls down the aisle on their wedding days. He did not see him walk to the podium in the hotel ballroom to accept a Lifetime Achievement award from his employer.

Joe would be gratified to know that, despite continuing hurdles, Joey is okay — working (more than twenty-five years without interruption), living quasi-independently in his own place, sharing in family events, enjoying a few close friends and his beloved cat. He thrives on church activities, involvement in historic train groups, filming videos, listening to bluegrass and classical music. He is an avid reader of non-fiction: transportation history, inspirational books, electronics catalogs, and cross-continent train schedules, which he has memorized.

Joey stops by weekly to take the trash out for me, and sometimes to eat pasta. He phones promptly at seven every morning with a cheery wake-up call, to make sure I am okay. At eighty, I am finally okay, knowing almost for certain that Joey is okay.

~Luisa R. Fortunato

More stories from our partners