started with a question at the pediatrician’s office. At my son’s 18-month check-up,
the doctor asked the usual battery of questions: “Does he run? Climb? Say more than five words?”
Then came the question that would start the terrible rolling of the ball: first, the seemingly endless testing; then, attendance at a developmental preschool; and finally, a diagnosis of a disorder on the autism spectrum.
"Does he say 'Mama' and mean it?"
The question stabbed, even in its innocuousness, and would trouble me for nights to come. The truth was, I wasn't sure. Did he say "Mama" at all? I realized in the office the answer was "no," and as I stood there, I suddenly realized he hadn't called for me from his crib or in the house when he wanted me. Ever.
Maybe I didn’t talk to him enough, I thought. My father had terminal cancer; I'd been absorbed in his illness and would continue to be until the end. So if my son didn't say "Mama," it had to be my fault. I was the Mama, after all. Even if my intentions were good and necessary – to be there for my father – I had to admit: I was distracted. Besides, I understood what my son wanted, even if his request for food came as a guttural noise from his throat.
“No,” I said. “I think the answer is no.”
The pediatrician said to call the county. Have him tested. By then I’d grown accustomed to doing what doctors told me to do. If my father’s many complications required yet another trip to the emergency room, we took him, even if we knew the trip would result in further agony.
Besides, the pediatrician said, the service was free. I had nothing to lose.
In came the testers, women with clipboards who asked my son to bottle-feed a doll. He could not mime the feeding, and when asked, "What is this?" he could not answer, "bottle," "ba-ba" or any approximation. The testers eyed each other. “Qualified speech delay,” they said. “Four times a week.”
Four times a week? My father was dying, though how near he was to the end, no one would say. Every day my family and I worried about my father's deterioration and level of pain. Now I was supposed to keep track of the number of words my son said? And if his vocabulary didn’t grow, what would that mean for him? Did I really want to know? In fact, I was already preoccupied with words, just not the kind that toddlers utter. Words like metastasis. Palliative care. End-of-life stages. My son’s words included: Ball. Cookie. Hot. Bye-bye.
I called my father every day.
“How is your pain?” I would ask, but he would deflect the question.
“He’ll say ‘Mama,’ honey, and once he does, he’ll say it so much that you’ll get tired of hearing it.”
I laughed then, sure he was right. As sick as he was, my father could always make me laugh.
county sent us the “Speech Nazis,” my nickname for the early intervention
therapists. Since they came to my home four times a week at 45-minute sessions,
kept my then 20-month-old son strapped into a booster seat, and essentially
ruled my calendar for more than a year, I felt justified. There was Prada, with
her belt and matching sunglasses, and Q-Tip, whose white hair puffed up from
her head in an odd cloud. Prada was all high cheekbones and slicked ponytail.
Q-Tip wore Crocs and pilled sweaters.
Prada was pretty; Q-Tip, not so much. My son liked Prada; Q-Tip, not so much.
They came armed with supplies: puzzles, pegboards, bubbles. A Diego doll who rode an elephant; Dora and Boots and their schoolhouse. And questions.
Do you see that he doesn't point to objects in books?
Do you see that he can’t identify his body parts?
Do you see that he doesn’t engage in imaginative play?
On the drive to visit my father, I would recite what felt like an endless series called "Things My Son Cannot Do." On the way home I would catalog the ever-growing list of “Things My Father Can No Longer Do.” At night I Googled these lists and came up with “Signs of Impending Death” for my father and “Autistic Characteristics” for my son.
Now it was my turn to ask the questions.
"Why can he touch his head when I ask him to," I asked Prada, "but he misses the mark when I ask him where his nose is? Why does he say things from television but not answer to his name?”
Q-Tip watched my son lining up his toys, noted his penchant for lying on the floor and watching the wheels of his ride-on train as he moved it back and forth. I asked: “Do you think he’s on the spectrum?” The question that had started all of this now had morphed into, “Is he or isn’t he?”
His eye contact was good, she said. But he was very self-directed.
To my father’s doctors I asked, “How much time are we talking about?” They would sigh and say things like, “Difficult to say,” or “No one has a crystal ball.”
the Speech Nazis continued to come, four times a week, and sat my son in the
chair and got out their puzzles, their Diegos and Doras and schoolhouses, and
counted his words.
Then my father died, and much of what they did from that point on I saw and heard from the blurry cocoon of grief. I signed their time sheets and waited upstairs four times a week as they did their best with my son strapped in that booster seat, because I was not a Speech Nazi. I was a mother. And a daughter.
On the day of Q-Tip’s last visit when my son aged out of the early intervention system, he yelled out her name before slamming the door, as if he too felt the relief. He looked up at me and said something – something that made me want to reach for the phone to call my father, until I remembered. I no longer recall what my son said exactly, but I do know it included the word “Mama,” and that he meant it.
As my son approaches his 5th birthday, I now realize nobody wants to say the words that no mother wants to hear – “Your son is on the autism spectrum” – just as no doctor wants to tell a daughter, “Your father has only a matter of days.” At the time, I just wanted to be relieved of not knowing. I’d expected both my son’s and my father’s issues to come to an end.
My son now attends an integrated kindergarten classroom at a public school, where he receives the help of gifted therapists, not unlike Q-Tip and Prada, whose job it is to raise the bar for children like my son. His list of words is now far too long to number, and when he calls for me, I have to laugh when I think back to the days when I waited to hear that one word, Mama. My father was right. He says it hundreds of times a day, only I am careful to never tire of hearing it.
Laurie Foos is the author of the forthcoming novel, The Blue Girl, and of five previous novels, including Before Elvis There Was Nothing and Ex Utero.She lives on Long Island with her husband and their two children.