Millions of young people suffer from some sort of mental illness. It is believed that about 1 in 5 of the more than 50 million students in America’s public schools are suffering with one mental condition or another. That’s a problem for parents and educators alike, especially given that most don’t get treated and most school districts don’t have the resources to provide adequate mental health services for students.
Nyden’s story was written by Sarah Maraniss Vander Schaaff, who a year ago penned an extraordinary piece for The Washington Post about her own struggle with obsessive-compulsive disorder and generalized anxiety disorder and more recently a post for this blog about how obsessive-compulsive disorder affected the life of one young man and his struggles to get through school.
By Sarah Maraniss Vander Schaaff
On the first day of second grade, Tammy Nyden’s son threw a computer at his teacher.
Nyden had long observed behavior in her son that she viewed as peculiar. As a young child, he lined his cars up perfectly. If someone stepped in front of him while he was watching a movie, he’d scream and insist they start the film from the beginning. But until that day, her son had never been violent.
It was a turning point, said Nyden, a professor of philosophy at Grinnell College in Iowa, one that began her long examination of her state’s mental health services for children. Who was accountable? Who was looking at the big picture?
Her own son was growing more complicated with each diagnosis. He started second grade with one for Attention Deficit Hyperactivity Disorder, and soon Tourette syndrome and obsessive-compulsive behavior were added to the list. His OCD focused on scary or violent worries, with a fear that he would harm others. At age 10, he was diagnosed with autism. He talked about taking his own life. And when he was very mad, he said he wanted to blow up the school.
Nyden knew that most people with mental illness were not violent. The difficulty, she said, was that her son was.
Then, in December 2012, a college student in her department died by suicide. Four days later, Adam Lanza killed 28 children and adults at Sandy Hook Elementary School in Connecticut.
“The whole Newtown thing was terrifying,” she said, referring to her own son’s behavior and threats, “because we didn’t know what was really going on.”
She first turned to National Alliance on Mental Health (NAMI) affiliates in her state of Iowa for help. She was told they had no programs for children.
As for the school, she said the people on the ground were “superheroes.” But there were systemic problems. The head of special education for the district called her son’s threats of suicide “attention-seeking” behavior in a meeting for his Individual Education Program, a specialized plan for students in special ed.
Nyden understood the pressure put upon underfunded schools to take up all the problems society did not deal with. At the same time, “What are families supposed to do?” she said. “These kids need our help and they need an education.”
By February, her son’s behavior was manic. His speech made little sense. Then came the risky behavior.
It happened on the playground, after the school staff had found a beehive and warned students to stay away. He walked right into the swarm.
“They won’t sting me,” he told the staff members. “They are my friends.”
At the recommendation of a psychologist, her son was admitted to a hospital and later to a residential psychiatric hospital for children and adolescents. He spent nine months there, the maximum allowed by Medicare, before he was discharged and came home with all the same problems he had from the start, Nyden said.
But one thing did improve. For the first time, people stopped blaming her. Until then she had been told she was too strict, or not strict enough; that the behavior was a response to her divorce; and once, a physician said she seemed overly invested in her son having bipolar disorder, a condition he would not diagnose in a juvenile.
“No,” she told the doctor, “I’m invested in my child getting better.”
Soon, Nyden became keenly interested in children’s mental health reform in her state of Iowa, training to become an advocate and taking her elevator pitch to the statehouse. If she had once wondered who was organizing on behalf of kids, she now had her answer.
With others, Nyden created Parents Creating Change in Iowa, and NAMI Iowa Children’s Mental Health Committee. They formed the NAMI Iowa Casserole Club, an online support group for parents and caregivers of children and adolescents with mental health needs. If people give casseroles to those coping with a physical illness, the same compassion and support was needed for those with mental illness, the group said.
From there, Nyden picked up momentum. Renee Speh, another parent advocate, joined in, and the NAMI committee gathered 90 individuals and 40 organizations to draft a strategic plan, or a call to action, for a children’s mental health redesign.
They had persuasive facts: Youth suicide in Iowa was more prevalent than in the nation as a whole; approximately 50 percent of children with mental illness drop out of school; and 70 percent of youth in the state and local juvenile justice system had mental illness.
Speh said their strategic plan asked big questions about what Iowa was missing and what children needed. They sent their plan to the governor, legislature and director of the Department of Human Services.
They were heard. The state formed a Children’s Mental Health and Well-being Work Group and invited Nyden and Speh to join.
Jerry Foxhoven, executive director of Clinical Programs at Drake Law School, sits on the work group with Nyden.
“Tammy has played a tremendous role,” he said, “probably one of the most powerful roles at the table because she brings that perspective of family, that frustrated parent who sees all the struggles.” People have been receptive because she doesn’t just complain, he said, “She has great solutions and thinks outside the box.”
One of the biggest tasks for the work group, Speh said, has been to address the fragmented nature of services for children across the state.
“So we want to tie it together,” she said. And the group is looking at issues that are not traditionally associated with mental health, but relate to children’s well-being just as powerfully.
When a parent is unemployed, engaged in criminal activity or using drugs, Foxhoven said, “We’d be kidding ourselves if we think that doesn’t affect kids.”
The work group has been able to get modest funds to form crisis services for children and families. They are also creating learning labs in communities around the state, which help assess and improve the resources available in those regions.
President Obama recently signed H.R. 34, the 21st Century Cures Act. In his statement about the act, improving mental health came fourth on the list of issues the act will address.
NAMI summarizes the key provisions, including one listed for children and adolescents that supports grants for integrated care and telehealth programs.
On the state level, Foxhoven is hopeful that a redesign of children’s mental health is gaining traction in Iowa. “It’s kind of like a train,” he said. “Let’s start that train, get it from a dead weight stop, so it has some momentum of its own.”
Taking a philosophical view, Nyden said she believes 100 years from now people will look back and say, “I can’t believe how people treated mental health and how neglected it was.”
“As a parent it’s way too slow,” she said. “As an advocate, we’re moving in the right direction.”
As for Nyden’s son, she said that the “therapeutic classroom” she fought for has made a tremendous difference in his ability to function, thrive and even enjoy school. It has created a shift in treating his behavior — from reward and punishment to understanding the neurological cause and needs behind it. Instead of putting him in behavior classrooms and using restraint and isolation when he has rapid cycling or needs to express a tic, he can go to the therapeutic classroom, where he feels safe and a teacher trained in special ed and mental health can help him. He also made a good friend in that classroom who has similar challenges.
She knows that the issues facing her son will never disappear, but, as he has gotten older, the neurological development that comes with maturity has helped. He can calm down more quickly, and the medication and therapy are helping.
He recently told his mom about a problem he had in school. He couldn’t decide which teacher he liked best because he liked both of them. “Right now, he has a lot of positive thoughts about school,” she said.