“It has taken a pandemic to lift the veil on that which has been hidden in plain sight for decades. The problems will not be solved with more of the same. Meaningful systemic reform will require a radical transformation of business as usual, a commitment to financing, and robust standards of accountability.” — Carol Dickey
I am a terrible parent.
That’s what everyone says, right? So it must be true.
Kids like mine just need to be disciplined. Kids like mine need less screens. More healthy food. More structured time. Less structured time.
Who knows what it is exactly, but I haven’t given it to them so their mental health issues are all my fault.
I know you can hear the sarcasm. No, I don’t really believe all of that noise on the internet from people who may not have raised any kids let alone my kind of kids.
But part of me does. Oh, big time. A part of me does believe that I am a terrible parent.
It doesn’t matter how many books I’ve read, how hard I work, how many details of their complicated schedules I remember, how many diets I try, how many doctors I take them to, how many medications I give them, how many school meetings I have.
How can you feel like a good parent when your children suffer so much?
I don’t write much about my children’s psychiatric disabilities, even though they impact our lives as much as my one son’s physical disabilities. There is so much stigma — both in society and in my own brain.
In writing about this, I feel like I have to first establish that childhood mental health disorders are actually real. There are biological and environmental causes that parents have no control over, just like with disabilities you can see. Just because a disorder’s cause is invisibly hidden away inside someone’s skull, doesn’t mean it’s not real. And while, yes, many childhood disorders can be improved with proper training and education — including of parents — some take serious medications to resolve, or simply may never resolve.
Estimates put the annual occurrence of serious emotional disturbance — a diagnosable mental, behavioral or emotional disorder that significantly limits a child’s life — at between 13 and 20 percent of American children.
According to Mental Health America’s 2021 report, I live in the worst state in the nation for prevalence of mental health disorders. More than 1 in 6 Oregon kids reported experiencing a major depressive episode during the time the data was collected, 2017-18.
Mental Health America goes on to report that their online screening tool has identified dramatically increasing rates of anxiety and depression during the course of the pandemic, especially among those ages 11-17.
These are concerns just as valid as physical disabilities. Suicide is the second-leading cause of death among Americans ages 10-24 — and growing — with males much more likely to die than females. (Check signs and symptoms here.)
For a long time, I bought the narrative that something was wrong with me as a parent. But the more I learned and the deeper I got into the world of pediatric mental health systems, the more I realized how widespread — yet unjust and inaccurate — it was to blame the parent.
Just a few days ago, a petition popped up on Change.org calling for “radical system reform” of Oregon’s youth mental health systems. It already has more than 200 signatures, including one of my sons, who, after reading it over my shoulder, demanded to be able to sign it.
Carol Dickey, the petition’s author, posted it on behalf of families like hers. Over the course of the last few months, as an employee of the Oregon Family Support Network, Dickey has conducted listening sessions with dozens of families who all had distressingly similar stories.
“System induced distress or ‘trauma’ is a part of every family’s experience. This is the theme to which parents spoke most frequently and with the greatest passion,” she wrote in her report to Governor Kate Brown’s System of Care Advisory Council. “…There is a compassion gap in which parents are excluded, set apart from meaningful interaction or participation in their children’s care.”
Dickey’s petition follows on the heels of distress signals from the state’s youth mental health service providers. The Oregonian’s Hillary Borrud reported last month that Oregon’s system is strained to the point of collapse, just at a time when it is needed most.
In an interview with Medical Motherhood this week, Dickey echoed many of the experts quoted in Borrud’s article, saying that this is a long-standing systemic failure brought to a head by COVID-19 restrictions.
“The current crisis has just brought everything to the surface, and more people know about it,” Dickey said. “More people are suffering because of it.”
The cumulative effect is that services are only provided after the family has reached a serious crisis. These days, there are so many families like that, even crisis care is being rationed.
“Families feel as though they are often — at the service level — overlooked, unheard, unseen, sometimes overpowered,” Dickey said, adding: “There isn’t an entity in the state that would not describe itself as ‘trauma-informed,’ and yet the overwhelming feeling of families in the system is that they’re not being seen, they’re not being heard and, frankly, (they’re being) injured by the system.”
Mental Health America points to schools as the most likely source of a solution to the youth mental health crisis.
In our experience, schools were quite the opposite of a solution.
By the end of kindergarten, a private behavioral specialist who had agreed to help us pro bono wrote me an email saying that for the first time in his 30-year career he was quitting a case because the school staff refused to listen.
“I feel like I'm wasting my time,” he wrote in April 2016. “The first problem is that the school district is following general, not special, education laws and regulations. They are not treating parents as equal partners. Decisions are made without your input. I suggest that you contact the attorney I mentioned before for assistance.”
I thanked him for his help and never sent his letter outlining the district’s problems to administrators. I didn’t want to be adversarial. I thought I could work it out. And… maybe, it was actually my fault.
It would take almost a year before I accepted that I was not a terrible parent. I did actually know what I was doing as a mother and deserved to be an equal partner. I finally got an attorney and, eventually, gave up and left that district when it was clear they were only interested in perpetuating my son’s downward spiral.
The irony is that it took the pandemic for me to truly see the impact of the system. Once I, as the parent, had more control and agency over my twin’s daily lives and services, we were finally able to reduce the enormous daily stressors and process some of their issues, especially around school work.
Don’t get me wrong. We are still a work in progress. And I would leap at the chance to partner with an effective and functional system.
But mostly I worry that my solution — to opt out of the system — has come at its own cost, and it’s one that not everyone is able to pay.
Medical Motherhood’s news briefs
• From The New York Times’ Opinion section: “What We See in the Shameful Trends on U.S. Maternal Health”
Compared with its peers’, the United States’ trajectory in maternal health has been shameful. Solving this worsening problem requires looking not just at the quality of care a woman receives but the entire environment around her — from her access to health care to the availability of food in her community.
• From University of Utah Health: “COVID-19 Vaccine in 5- to 11-year-old children: What you need to know"
How comfortable should I be with sending a disabled child back to school after vaccination?
If your child’s disability is one that should not affect the vaccine’s ability to work, such as a neuromuscular condition that does not affect the immune system, then it is fine to send them back to school right away. If the disability does affect the immune system, such as if your child is undergoing a cancer treatment or has recently had an organ transplant, the vaccine may not work as well because they may not be able to build up a robust immune response. In that case, it’s best to talk to your pediatrician.
• From ABC News via KESQ: “4 years after rescue, some Turpin children still ‘living in squalor’ despite donations, pledges of support”
The Turpins' dire circumstances are a symptom of failed social programs, critics say, and emblematic of incessant structural deficiencies in the human-welfare systems in one of the largest counties in the country, famous for the resort community of Palm Springs and the Coachella Valley Music and Arts Festival.
"That is unimaginable to me -- that we could have the very worst case of child abuse that I've ever seen," (Riverside County district attorney Mike) Hestrin said, "and then that we would then not be able to get it together to give them basic needs."
Medical Motherhood is a weekly newsletter dedicated to the experience of raising disabled children.
Replies to this email go directly to me, Shasta Kearns Moore.