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‘I wasn’t sleeping’: The silent crisis of the caregivers of children who struggle with mental health

August 23, 2022, 8:30 PM UTC
Closeup of mom hugging her upset daughter.
A new survey found that behavioral health struggles in children were associated with productivity loss for parents and caregivers.
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It was when her daughter was in preschool that she began to notice actual behavioral changes.

Amy, who asked to be identified only by her first name to protect her daughter’s privacy, had to eventually pull her daughter Jovie out of preschool because of her anxiety symptoms like vomiting and crying, on top of reports that she was being bullied. 

It never crossed Amy’s mind that she could have a daughter struggling with anxiety at such a young age. 

“The Jovie we knew from birth to 4 years old was gone, a shell of who she was,” Amy says, who says she feared her daughter would always be like this. “It’s heartbreaking. Her anxiety is all we dealt with.”

Jovie needed 24/7 care, something Amy never felt fully equipped to manage. She described it as “mama-bearing it,” trying to support her child at all costs even when she had no idea what was wrong. Amy couldn’t work and provide care for her daughter, which included homeschooling, searching for the right behavioral health therapist, comforting her, and managing the physical symptoms of her anxiety. Her husband worked up to 18-hour days, and on top of the COVID-19 lockdown that kept her from going into a doctor’s office to get help, she felt like she was managing her daughter’s mental health alone. 

Amy hoped to reopen an Etsy shop and sell shirts she made, but it didn’t seem feasible anymore. 

“I was making a killing and it was great. I still have a storage room full of inventory,” Amy says. “I’m not kidding; it was open for 24 hours, and I had to shut it down.”

In a new survey released this August, 78% of respondents reported spending two or more hours per week on their child’s behavioral health, with 35% spending five or more hours per week. Fourteen percent spend over eight hours. And over 20% said their child needed more care (including medical, mental health, or educational related care) than is typical for most similar-aged children.

The survey of over 350 individuals, published in the Journal of Medical Internet Research (JMIR), found that behavioral health struggles in children were associated with productivity loss for parents and caregivers. Eighty-five percent of respondents said their child’s behavioral health needs have an impact on their productivity—almost half saying it had a “large” or “definite” impact. 

Children and young adults have faced growing mental health issues with people of color and LGBTQ+ individuals at a higher risk for mental health problems, including anxiety and depression, according to Mental Health America. This became more evident with the pandemic lockdown, which pushed many kids to the brink. Parents and caregivers are feeling this deeply, says lead author on the survey Dr. David Grodberg, who also serves as the chief psychiatric officer at Brightline and faculty member at the Yale School of Medicine. 

“Even on her good days, I wasn’t sleeping, I couldn’t eat. I did not take care of myself at all to be honest,” Amy says. “I have bottled everything up so that everything’s good for the kids.” 

Parents and caregivers are not always sure what signs to look out for with their children and what kinds of interventions are most effective, says Naomi Allen, ​​CEO of Brightline, which offers mental health support to children and their caregivers. This can leave many in the dark as they try to manage the well-being of their child who is exhibiting new behaviors. 

“So often parents aren’t putting their own oxygen mask on first,” Allen says, noting that parents and caregivers of children who struggle with their mental health are also more likely to experience depression themselves. 

The mental health of caregivers must be seen as a priority as women have been disproportionately juggling the needs of their children alongside themselves. In a new study from CVS, 45% of women reported stress surrounding the mental health of loved ones, versus 36% of men. 

“The reduction of women’s participation in the workforce is tied to historically what has been a pretty terrible lack of access to pediatric mental health resources,” says Allen. 

There isn’t one answer for everybody to solve the compounded mental health crisis on top of the caregiving crisis, but some interventions may work for some, according to experts. 

Address your fears 

Many parents and caregivers feel like they have so many fears surrounding their child’s health and well-being that it becomes impossible to address and reflect on any, says Dr. Shairi Turner, a pediatrician and Crisis Text Line’s chief health officer. 

In reality, a parent may have a handful of valid fears. Take the time to think about what those are and how you might address them individually. You won’t solve your problems, but you may feel more centered in naming what you are genuinely most afraid of, Turner says. 

Model self-care

While it may sound cliché, parents and caregivers must show that they take time for themselves, even if it’s brief, to fully show up for those they care about. 

“It is what sustains us as parents,” Turner says. 

This can look like practicing breathing exercises, going on walks, finding a sliver in the day for a hobby, or calling a supporter. You can even try explaining to your child how you go about doing that, showing how different tactics are individualized, and see what that prompts in them, Turner says. 

Intervene early 

The majority of mental health issues manifest before the age of 14, Allen says, and it may help caregivers to monitor behavioral changes and intervene earlier rather than later. Many behavioral health interventions can make sense for a child’s well-being that don’t involve seeking outside help, depending on the severity of the situation, Grodberg says. 

There are resources that can help parents learn to intervene early. Brightline prioritizes counseling that includes a child and the parents, which allows parents to also improve in how they understand the mental health of their children. 

As the school year approaches, you could even say, for example, “‘I care about you, I want to hear about what is making you anxious or what you’re feeling as we’re approaching the school year,’ and leave it open for them to hear what teens are saying,” Turner says. 

Family connection matters

The JMIR survey also found that the feelings of connectivity within a family along with family resilience matter in bolstering parent and caregiver productivity. Feeling connected in your communities through rituals or events can help bolster feelings of belonging. Take time to enjoy each other’s company and check in without waiting until emergencies. 

Reward positive behavior 

Especially for young children, it can be easy for parents and caregivers to focus on stopping negative feelings or behaviors. Instead, try to reward and comment on positive habits and behaviors. Over time, those positive habits can replace the bad ones. 

“I wouldn’t call it rocket science, but it’s something that doesn’t come in the quote instruction manual when you have kids,” Grodberg says. 

Don’t be afraid to seek help for your child—and yourself 

If you’re worried about your child, trust your instincts and seek a professional. Don’t be afraid to ask questions and find someone who may help. At the crisis line where Turner works, parents can also text to ask for help and seek guidance from the center’s resources. 

“What this crisis and data tell us is that the need is so vast that there is a real demand for figuring out new ways of helping parents get care for their kids,” Grodberg says. 

Jovie is doing much better now, having gotten behavioral health help and learned coping skills. Even though she still has her “bad” days, the tables may have turned.

“She’s 7, and she copes better than I do,” Amy says.