What Many Moms of Kids with Disabilities Won't Tell You
After coming to terms with her son’s disability, one woman reveals what many moms of kids with special needs won’t tell you.
Author’s Note: This is a story about my journey as a mom, but I can’t tell it without relaying the private details of my son’s condition. That’s why in addition to writing this piece anonymously, I’ve also changed his name as well as the names of other family members in the article.
At first they sounded like a cross between a robin’s chirp and a hiccup. Short bursts of noisy air that made other kids wonder if my son—whom I’ll call Aidan—had asthma. “Can he breathe okay?” they’d ask, their foreheads creased with concern.
Aidan was 6 years old and at the end of first grade when the symptoms started. If someone had told me I would spend years monitoring those noises—silently counting how many times they happened per minute (often more than 10), I would have said they were crazy. Nor would I have believed I’d get emails from teachers informing me Aidan’s squeaks and compulsive throat clearing made it hard for other students to concentrate. Or that at their peak, those sounds would morph into chin, neck and arm jerks so dramatic that people on the street—and in stores and on playgrounds—would glance his way and whisper.
Shortly after the outbursts began, his pediatrician explained that the sounds are called tics, and they tend to go away over time. She also said if the tics are both vocal and motor, occur many times a day and last over a year, they can be classified as Tourette syndrome. TS is a lifelong condition whose signs are usually noticed in early childhood, and may improve in the late teens and the 20s. She guessed Aidan’s were a phase. I wasn’t so sure.
For the next three years, Aidan’s tics came and went, so we never got a diagnosis. Then they escalated to include stepping back and forth over sidewalk cracks and brushing his fingertips against textured surfaces like a wicker chair. (As I’d later learn, kids with TS often have other neurological challenges, including varying degrees of ADHD and obsessive-compulsive disorder.)
In the fall that he entered fifth grade, concerned emails from his teacher started almost immediately and his episodes began lasting longer. A specialist officially diagnosed him and I felt like my cherished expectations for him were instantly and cruelly revoked. He’s bright enough that I had assumed school would be his place to excel. Instead, he sometimes couldn’t even write his name because his shoulder was shaking so badly. I worried: Would he be bullied? Would he ever be able to play sports?
Aidan’s neurologist counseled a wait-and-see approach. Tics aren’t life threatening, after all, and Aidan doesn’t have coprolalia, the much-hyped but less common subset of TS where people blurt out swear words or other socially inappropriate comments. In some cases, medication can be the most effective treatment for TS, yet the neurologist wanted to be conservative and watch what happened to the tics over time.
My fears about Aidan’s daily life, however, made it impossible for me to take the long view. I coped by waking up in the middle of the night and weeping to my husband, James, that Aidan’s life was ruined. When he tried to reassure me by pointing out that our son had friends and was, except for the problems at school, happy, I just thought he was in denial. Once in a while, I’d confide my concerns about Aidan to friends, although I quickly noticed problems like mine weren’t typical book club banter. My friends were sympathetic, to be sure. But because my family’s issues were so different from normal family ups and downs, I felt alone in my troubles.
In my isolation I became jealous of families with “typical” children, silently getting angry when another mom complained about an incompetent hockey referee or a teacher who failed to place her child in the highest reading group. I’d always enjoyed hearing stories about my friends’ kids. Now they just felt like reminders that my own family was in crisis. Get a real problem, I thought.
I began trolling the Internet seeking help and meeting with any mom I knew whose child had any kind of neurological disorder. In addition to biofeedback and cognitive behavioral therapy, I signed Aidan up for acupuncture and had him work with a Chinese healer to learn Qigong, a mind-body practice geared toward improving energy flow through the body. Looking back on those days, I can see that I was searching for something—anything—to ease not Aidan’s anxiety, but mine.
At Aidan’s 11-year checkup—were we ever not at a doctor’s office?—the pediatrician was talking to him about his tics when I interrupted to show her how on top of it I was. She was checking his spine when I rattled off the treatments we were pursuing. “Hmm,” she said, pulling out her stethoscope. “Maybe that’s too much.”
And it was. That’s when I realized that for months—maybe years—I’d been seeing Aidan only as a boy with Tourette syndrome, not as the kid who loved his cat, played tennis and wrote his own hip-hop lyrics. For the first time, I understood the message I was sending him with all those treatments: You are not okay with me.
When we were in the car, I asked Aidan which therapies he wanted to continue, suggesting that we keep cognitive behavioral therapy because I could tell it was helping him feel less anxious. He agreed and said he also wanted to continue with acupuncture. That decision not only eased our budget, it also freed up my time, which was another stressor on our family life. I realized that I’d wrung myself dry trying to fix Aidan. I had a job, a husband and two other children who also needed my attention. Aidan wasn’t perfect. And neither was his mother.
Realizing I didn’t need to be 100% responsible for Aidan’s life was a shocking relief, changing my relationship not only with my son but also with my friends. I started spending more time with moms of children who had challenges, and felt safe enough with them that I could laugh about my manic pursuits of therapies and 3 a.m. Internet forages for clues to Aidan’s future. Being honest with people I trust about my son and my fumbling attempts to help him let me cast aside the facade of the perfect mom. It allowed me to be cared about simply as a person.
For three years, Aidan’s tics were controlled by medications that I would have been too scared to try if I’d listened to the Internet chatter instead of Aidan’s neurologist. Prescriptions are a big step for any family, so I’m glad we explored other options first. I am also amazed at how many moms toss around startlingly judgmental declarations about the evils of prescription drugs. In Aidan’s case, meds literally made it possible for him to start a new middle school as just another kid. Yes, he gained 15 pounds, complained of a dry mouth and had perpetually chapped lips, but experiencing less severe tics gave Aidan the confidence he needed to make new friends.
Today Aidan is in ninth grade and no longer takes medication to control his tics, though they sometimes bother him when he reads. (He’s learned to make adjustments.) Aidan’s on the debate team, plays hockey, gets good grades and, most important, has close friends, some of whom knew him during the worst of the tics. He has the high school life I’d always envisioned. The neurologist even dialed back Aidan’s diagnosis from Tourette syndrome to chronic tic disorder, although I’m convinced we were—and are—dealing with TS.
I can’t imagine I’ll ever like what this disorder means for Aidan, although I can tell that he’s a more empathetic person from having challenges. I’m also grateful for what my kid with special needs has taught me about myself. Looking back on my life before TS, I can see that I was pretty smug about my bright and sweet son, basking in the satisfaction of what I felt I’d created. These days I’m a humbler mom who doesn’t care as much as I used to about what my kids achieve. Instead, I simply want them to be happy.