Image Credit: Tammy Nyden, used with permission
Tammy Nyden has spent years standing as an ambassador for her son.
According to the Washington Post, she first noticed that one of her sons had the potential to act violently in 2012, when he threw a computer at a teacher in his second grade classroom. The mom, and professor of philosophy at Grinnell College, has been working to get better support for him and other families with children with mental illness ever since—and she expects that it will be a long journey ahead.
Nyden told Independent Journal Review:
“Mental illness is something that you will always live with. Part of the hurdle, as a parent, is to get over the thinking that things will get better. In that ideology, you’ll think everything is okay, then you’re devastated when something happens. There will be good days and bad days, but it will always be a constant negotiation—and work—to get the support your child needs.”
Before the incident, her son had been diagnosed with attention deficit hyperactivity disorder (ADHD), but he had never been violent. He was a sweet baby, Nyden says, and he continues to be a kind and forgiving child. But he can act violently when his social anxiety triggers an angry response.
“Partially as a result of autism, he has a difficult time reading social situations, and this enhances his anxiety. He’ll think that kids see him as different and not nice, or he’ll misread the situation. He perceives that people are laughing at him and that sometimes causes him to lash out.”
After the incident with the computer, he was diagnosed with Tourette’s, obsessive compulsive disorder, and autism. Her son became depressed, and once even threatened to blow up his school.
Nyden knew his behavior was escalating, but she couldn’t get the support she needed. She tried reaching out to the Iowa National Alliance for Mental Illness (NAMI) — a group that predicts 1 in 5 children between the ages of 13-18 live with a mental illness — but they didn’t have a group for children.
She continued to take him to counselors and therapists, and tried to reach out to health organizations.
One day, on the playground, he found a beehive. His teachers told him to stay away, but he approached the hive anyway. He told the teachers that the bees would not sting him because they were his friends. He was subsequently hospitalized because his speech was confused and he displayed risky behavior.
From there the hospital recommended that he go to the Psychiatric Medical Institution for Children, where he stayed for five months.
Nyden has received her fair share of criticism. Even on the Washington Post article, commenters shamed her for not being a better parent and caring for her child. But she has thick skin and says other parents with children facing mental illness have, too.
“I was surprised that there weren’t more negative comments. I’ve had strangers come up and tell me that if I just spanked him, he would be a better child. I give them a Tourette’s informational card to teach them. Another mother I know carries candy bars with printed information about autism. How can you be upset when you get free chocolate?”
Nyden realized that there weren’t many support groups to help her and her family, so she created her own, the NAMI Iowa Casserole Club, and two advocacy groups, the Parents Creating Change in Iowa and NAMI Iowa Children’s Mental Health Committee. Through the groups, she’s been able to lobby in the interest of children who need support for improved mental health.
Just a few years ago, in 2014, Nyden was awarded as the ID (Iowans with Disabilities) Action Advocate of the Year for her work to support stronger mental health for children. At the time she told The Iowa City Press-Citizen:
“I’m a parent and so I kept trying to navigate, like all of the other parents who are dealing with this, the health care system, the educational system, just trying to find child care.”
According to Nyden, the education system is currently designed in a way that it doesn’t help families with disabilities. It took three years for the school district to create a therapeutic classroom for students with disabilities, which teach social skills in addition to the necessary educational material.
In those three years, Nyden went through a lot. She’s fallen in and out of debt in order to support her son’s medical needs.
“That’s something we don’t normally talk about, just how many people fall out of middle class to get access to medical services.”
But now her son has two services that he’s using that were not available before: He has a therapist who comes to their home and teaches him about social skills, and he’s going to a therapeutic classroom.
She also experienced divorce and the unexpected loss of her second husband. Last March, a friend and mental health advocate was killed by her schizophrenic son, and that loss impacted her personally.
“Her death was a trigger for the parents in our group because she had been advocating—what more could she have done? She was active in working for child mental health services. The day before she had brought him to the emergency room and they said they couldn’t keep him. I often wonder what more could’ve been done to help her.”
Now that her son is about to enter high school, she’s facing a new battle of getting the services he needs to be successful. But she believes her work is helping her son and the other parents who come after her.
“The kids are amazing and keep me going. In a way, they are my advocates.”
This month Nyden’s starting a new podcast and a website called “Mothers on the Frontline” to share her stories with other families who are going through similar situations. In her first blog post, published this week, she wrote:
“Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so [with] the systemic problems preventing kids from getting needed services.”
She encourages parents in similar situations to reach out and find support in groups; that’s where she found many ideas that have helped her own family.
Although Nyden’s glad her story is being heard, she believes there’s nothing special about her journey.
“There are many mothers out there who are working hard to give their children the best life they can achieve.”
But she hopes her story can shed light on improved support for mental health. “Moms and dads shouldn’t have to do this alone,” she said. “That’s what keeps me going.”