One Woman's Greatest Fear as the Mother of a Mentally Ill Son
"Get me tape," Jonah says, deep in concentration. I offer a piece and help him fasten a rubber band. He examines the guitar ornament his mother has taken from the family's Christmas tree. Together, Jonah and I get the strings taped on correctly. "I'm giving it to my dad," he says with a child's decisiveness, wiggling off the chair.
Watching him, it's hard to imagine that Jonah is the same boy who started throwing tantrums so violent at 19 months old that his parents, Cassie and Curtis, stopped taking him with them to run errands. He once had such an explosive episode on his way to the library that he threw himself onto the concrete sidewalk and struck his head, hard. When he was 2½ and Cassie spanked him for not picking up a toy she'd repeatedly asked him to put away, he slapped her and spit in her face. Jonah was enraged and inconsolable; eventually, Cassie had to shut him in his room until the tantrum subsided. She remembers the date: December 14, 2012, the day of the Sandy Hook Elementary School massacre in Newtown, Connecticut, when 20-year-old Adam Lanza shot and killed his mother, then gunned down 20 first graders and six teachers before turning the gun on himself. Cassie felt horror as she watched the news, thinking about a violent young person hurting children. "The look Jonah gave me that day, when he slapped me—it was cold," she says. "You can see how the depression could take over."
Jonah was 10 months old when Cassie began noticing he didn't behave like other children. His tantrums felt more hysterical, more elevated and intense. Once, at the grocery store, he screamed so relentlessly—his demon scream, Cassie calls it, a high-pitched screech from the back of his throat—that a woman came over to ask him if he got beaten at home. When Cassie would try to put a ballistic Jonah in his car seat, he often scratched her neck, face and arms fiercely enough to draw blood. He threw things at her as she drove—shoes, toys, drawing pads. By the time he was 3 and growing stronger, he'd hurled a full bottle of water at his grandmother's head. Another time, in a fury after Cassie asked him to stop picking his nose, he broke away from her and darted into the street, nearly getting hit by a car.
Jonah was Cassie's first child, but she wasn't a novice; she has a master's degree in education and has worked in an elementary school. She grew up with three younger siblings and did a stint as a nanny for infant twins and their 3-year-old brother. But she'd never come across anyone like Jonah.
A therapist told Cassie she shouldn't leave him alone in his room when he exploded, even though that was the only thing that seemed to calm him. Instead, she urged Cassie to restrain her son. But trying to hold him in a tight embrace while caring for a newborn felt impossible. How could she push a stroller and lock down a 3-year-old at the same time? Plus, she'd developed thrush and blocked ducts from nursing Mia. It hurt to cling to Jonah in that way as he kicked and clawed at her face. "You can't do that forever," she says.
The summer Jonah was 4, his outbursts grew so frequent that Cassie and Curtis removed all potential projectiles from his bedroom. During his next epic tantrum, he pulled the closet doors off their tracks and tried to pull the curtain rods off the wall; he hurled the night-light. For nearly three hours, he thrashed and screamed his piercing scream. Curtis removed the curtains, the night-light. He returned the closet doors to their tracks. Then he and Cassie watched on the video baby monitor, helpless, as their son raged.
"Every time I lock the door to his room, I hate it. It's the worst feeling, but it's safer," Curtis says. He's an affable, laid-back 37-year-old with a disarming laugh. But the subject of Jonah sobers and ages him.
Cassie and Curtis rent a comfortable suburban two-story house. The living room has plush navy sofas, plush white carpet. Fabric calla lilies bloom from a vase by their bed. (Cassie likes uncluttered decor: a few pretty jars on a counter; calm, light gray walls.) Though you'd never know it, money's tight. Curtis runs a small online business while Cassie takes care of the kids. But thriftiness comes naturally to her. Her father worked at a paper mill while her mother homeschooled the four children. Cassie does most of her shopping at Goodwill.
She knew parenting would have its challenges, but she never imagined being spoken to the way Jonah speaks to her. Over time, "I hate you" or "You're not my mother" occasionally became "I want you to die" or "I want to cut your neck and watch you bleed." Later, he shifted to the subtler, if no less troubling, "You don't love me. You don't forgive me. You want me to die." Cassie is unnerved by his mood swings. Once, in the midst of screaming in the car so intensely that Cassie says she felt it in her cells, Jonah stopped to calmly ask if he could watch a show when they got home. She told him he could not, and he returned to the same terrible screaming, pausing every few minutes to ask again. "That's when I knew something was really wrong," Cassie says.
"It's not unusual for kids to misbehave," says the family's child psychologist, "but Jonah is extreme in his reactions. He says negative and violent things out of the blue. Normally there's an obvious precipitator."
Cassie and Curtis found the psychologist when Jonah was 4, after seeing a speech therapist who suspected deeper issues might be at play and urged them to find someone who could help. (The speech therapist did teach them some parenting strategies—like praising the positive and ignoring the negative—that Curtis says were useful. "When you're a parent," he says, "all you have to go on is how you were raised." For Curtis, that meant a lot of rules and spankings, and those things clearly weren't working; they had given up on the latter by the time Jonah was 2½.)
It was no small feat to identify the perfect psychologist. Though the family lives near a major city, only four child psychologists in easy driving distance worked with kids Jonah's age and also accepted the family's insurance. Some had no room in their practice. Others said no because they weren't trained to work with young children and wanted to avoid pinning a pathology on a difficult but possibly temporary phase. Still others simply didn't seem to take them seriously.
The child psychologist they finally settled on did. But two months in, the family's insurance changed, and the sessions had to stop. In the interim, the psychologist thought it might be useful for them to get a diagnosis from a psychiatrist. For this, they had to pay $1,000 out of pocket for three one-hour sessions and an assessment. It was the largest single payment they made in 2013—and it didn't exactly clarify the situation.
"He's not ADHD," Cassie says, sitting in the living room near the meticulously decorated Christmas tree. And it's true that when you watch Jonah play—coloring and crafting for long stretches of time—there appears to be nothing wrong with his focus. Yet the psychiatrist listed "subsyndromal ADHD" alongside a primary diagnosis of mood disorder with possible bipolar tendencies (due to the description of Jonah bouncing between good moods and long bouts of irritability and rage), as well as anxiety and sensory integration difficulties (from a sensitivity to light). And, the report said, he might struggle with oppositional defiant disorder, possibly a product of the mood disorder and sensory integration issues. According to Cassie, the psychiatrist also told them that Jonah might have disruptive mood dysregulation disorder, characterized by intense and frequent inappropriate outbursts, but he couldn't make a definitive diagnosis until Jonah turned 6. In other words, it was anyone's guess what was wrong with Cassie and Curtis's little boy.
The broad evaluation left them feeling flustered and frustrated. Cassie says the psychiatrist was willing to try Prozac, but she feared meddling with Jonah in that way. A natural healer had suggested supplements with trace amounts of lithium. (Lithium has been shown to have an effect on bipolar children's moods.) This worked for a while, but the effect eventually waned. They took Jonah to a second psychiatrist, who simply diagnosed him with an unspecified depressive disorder. "It was hard to trust that doctor," Cassie says. "He had one session with Jonah. And so much of what they had to go on came from me. There's so much self-reporting involved." Were Cassie and Curtis describing everything accurately?
Still, Cassie says, "it was a relief to have a diagnosis, to have someone validate that we had a real issue. But within a few weeks it felt like a big letdown when I realized that there was nothing I could really do with it. All the treatments were basically the same: cognitive-behavioral therapy, which can be difficult for a 5-year-old, or meds."
Curtis feels equally at sea. "One of the hardest things," he says, "is the reality that they just don't know. It feels like they—PhDs with 30 years of experience—are grasping at straws just like I am."
Cassie is thin, with well-coiffed, dyed blonde hair and perfectly applied makeup. She's perpetually in motion, wiping the counter or grooming the dog or fiddling with the Christmas music she's streaming from the laptop in the corner or turning on some scented lamps or folding the laundry or redoing the message on the bathroom chalkboard to "Let it snow," worrying over the prettiness of her handwriting. She talks quickly, her thoughts frequently running together. She jokes that she needs the armchairs to be situated at just the right angle relative to the couch, that it used to really bother her that the microwave and oven didn't match. (Though they're both white, the clock on one is green while the other is blue.) But she's let the microwave thing go, learned to "be flexible"—a family mantra. "I know I'm a little OCD," she tells me, laughing.
Then there's the issue of Cassie's Legos. She has a set that she's carefully organized by color and type, and to unwind she's started to make an incredibly intricate mansion, complete with tiny toilets and fruit bowls. Not surprisingly, Jonah often wants to use his mom's organized set instead of his jumbled one, and it always turns into a fight. On one of my visits, he made a gun with his Legos, aimed it at her, and pretended to shoot.
During my visit, I occasionally wondered whether Jonah's tantrums might be a 5-year-old's rebellion against a controlling mother's quest for order—a quest that sometimes involved spanking. But Mia, a strikingly chirpy, happy girl, exhibited none of the same fury, none of the same anguish. Cassie is naturally a warm, affectionate mother. She praises Jonah whenever he does something good—folds a blanket, puts away a toy, gives a hug. With Mia, she's playful—patiently eating fake cookie pie and cuddling. She keeps craft projects in a drawer. She maintains a balanced homelife, with quiet nap times and nourishing food.
Yet the world is full of people who act as if they know better than Cassie what's best for her family. One therapist urged Cassie and Curtis to read a book about parenting a difficult child, implying that they were the problem. (They read it. It didn't help.) Friends have tossed off wildly ill-informed advice—maybe Jonah was getting too much sugar or wasn't engaged in enough activities—as if Cassie and Curtis haven't lain awake night after night after night after night considering every little thing that might make a difference. Even Cassie's mother, always a supporter, has suggested that maybe they just didn't spank Jonah enough. Everyone seems to think that if they did just one thing differently, he would transform into a normal child.
Cassie feels pangs of envy when she sees Facebook pictures of kids at the zoo, kids picking out Christmas trees. She feels isolated. Recently, after an especially wild tantrum, she Googled support groups for mothers of mentally ill children, hoping to find women who would innately understand what she's going through. The first thing that came up was an essay by a mom that was full of scary prognoses—death threats, police involvement, prison. She promptly logged off.
"Look," Cassie says to me, pulling out a binder of drawings from a desk as Mia scoots by, chattering in her upbeat way, pushing a toy vacuum cleaner over the carpet. Cassie shows me all of Jonah's artwork, unusual in its intricacy—large blocks of color stitched to other blocks to form a quilt, and a tree with complicated branches. "He doesn't draw trees the same way twice, like other kids," she says, sounding proud.
There are good days—when Jonah is making art, when he's kind and polite, when he apologizes for his misdeeds. But nothing about Jonah is predictable. The problems, the behavior, morph constantly.
Cassie knows there are other mothers like her, mothers who watch wistfully while other people's children behave and thrive, who worry that their kids might grow up to do terrible things or not grow up at all. But her deepest fear isn't actually the specter of future violence; as with any mother, it's simply the possibility that, in the final analysis—despite her boundless love for her child, her willingness to do almost anything to secure his health and happiness—her efforts won't have been enough.
"I just don't want to let him down," Cassie says.
*All names and some identifying details in this story have been changed. The photos are being used for illustrative purposes only. The persons depicted are models.