Watching my 12 year old son set up Google Drive for my friend, listening to him patiently explain the various functions and options, I glimpse a memory of him as a toddler, chatting amiably with a Research Assistant at Emory University.
I no longer recall the details of how we were enrolled in this long-term study of autism, or the particulars of how they knew to call us. Did I sign something in the hospital? I don’t even remember which department was conducting the study. I remember only that, when they called, I readily agreed.
Because of my “advanced maternal age” during pregnancy—I was 35 when he was born—my spouse and I were required to attend a genetic counseling session before declining amniocentesis. That hour of my life gave me plenty of new things to worry about for the following six months. Of course, already a mother of two, I understood that to be a parent is to worry about your children forever.
Like his older sisters, my son reached developmental milestones at appropriate times. Like his older sisters, he was highly verbal, with an estimated vocabulary of more than 50 words in two languages by his first birthday. Around that time, we visited Emory to participate in Part One of the study. The initial test involved his voluntary separation from me, as one Research Assistant led him to the opposite side of the room and conducted a brief interview with him. Then he performed several problem-solving tasks for other researchers, identifying colors on a chart and imitating the language of animals after correctly reciting their names. My confident, self-possessed toddler charmed all of the adults in the room.
About a year later, we were invited for a follow-up session, which consisted of similar but more age-appropriate tasks involving numbers and letters. This time the interview with the Research Assistant was extensive—I was in a separate room watching from behind a glass wall—as he evaluated how well my son read social cues. Did he make eye contact? Speak with a varied vocabulary? Would he shake hands to say goodbye?
As we prepared to leave the building, the Research Assistant thanked me for bringing him for the second visit and reassured me: “Obviously, your son is in the control group.”
Fast forward a decade. My son, whose voice has already dropped an octave, sits with my friend in front of the computer and demonstrates the functions of Google Drive. I glimpse a possible future for him; he could be a computer scientist, an engineer, a graduate student conducting research in neuropsychology. My friend has given me this gift, this hopeful moment as I imagine him as a successful adult.
There is an inspirational story about how he came to be my friend’s I.T. guy, but it’s too long to share all the details now. The abbreviated version is this: last month, he and I attended—at her invitation—a community meeting to discuss a positive and possible future for her daughter, who has autism. The meeting was facilitated by two researchers at Georgia State University, who elicited ideas from her family and friends to help this 12 year old girl connect with the wider community. The facilitator invited neurotypical peers to suggest ways they could relate to her daughter. When the conversation turned to the topic of social media, my son realized that he could help her set up Google Drive to keep a digital scrapbook and journal of their progress. My friend often posts about her family on Facebook, but wants to create a more involved circle of friends, who are willing to go beyond simply liking or commenting on her status.
All the time he is working with my friend, her daughter is also communicating with her, using signs and vocalizations to ask for a snack, to ask if it’s her turn to watch a music video on the computer, to indicate that she’s ready to go home. At times she is occupied with a puzzle in the next room, but she returns often to the table, asking for music. Like my son, she loves music.
I wonder about teenagers and their love of music. I wonder if we all turn into our mothers, shouting at our teenagers to turn down their music.
I wonder if my friend participated with her daughter in the Emory study. I wonder if my son’s participation, in the control group, helped the researchers discover anything worthwhile that might assist those navigating parenthood of a child with autism.
I return to reconsider the researcher’s assurance to me. He certainly understood and recognized the symptoms of autism as they emerge in toddlers, as well as the scientific method that requires a control group. But I understood the practicalities of parenthood; I recognized that there is no control, only the letting go of control.
We parents—whether our children are on the autism spectrum or are neurotypical—have little control over who our children will become as adults. We give the best of ourselves to them when they are toddlers, children and teens. Then we wait. And we worry. We watch with wonder as they grow and change, as they defy our expectations.
Getting to know my son and my friend’s daughter—this visit was only the third time we met and the longest in duration—I glimpsed a positive and possible future for both of our children. I am not yet able to understand her signs or interpret her vocalizations, but I was able to interact with her using a communication device. Rather than feeling helpless about what we cannot control, I feel hopeful. If my friend can learn to use Google Drive, I can learn sign language. Even at an “advanced maternal age,” we can learn new things from our children, in order to give them the best of ourselves and guide them toward adulthood.
Here’s a sample of music that we enjoy together!