A devastating experience made me afraid to advocate for my daughter’s mental health | Mental Health Perspectives

Rat-tat-tat! Almost a year ago, I hopped off a Zoom call because someone was knocking on my door like they were from the FBI. When I opened the door, a woman introduced herself as a representative from the Washington State Department of Children, Youth, and Families. 

She told me the department received a report of child neglect regarding my daughter, and she was here to inspect my home. I was enraged and felt a gnawing pit in my stomach: why was my family targeted? 

My daughter, who is Black, was diagnosed with psychosis at age 11. Getting Maya (her middle name, used here to protect her privacy) treatment has been challenging, and her care team routinely ignored symptoms of dissociation and auditory hallucinations. We had stopped her treatment with an agency two weeks prior to the knock on my door because I felt they didn’t understand how to treat her. 

Around this time, Maya told me she was experiencing auditory hallucinations — she kept hearing sounds of bells even though there weren’t any ringing. When I reported this to her care team, I was told to take her to get checked for an ear infection. This didn’t make sense to me: She was not experiencing any ear pain or ear infection symptoms and hadn’t had an infection since she was 3 years old. I wondered if we were in the right place to get help.

The final straw was when a nurse practitioner told Maya she didn’t need to continue with the medicine prescribed by her psychiatrist — a recommendation made without consulting me first. Even Maya found the suggestion strange. I pulled her from the program that day and filed a grievance. But I believe that nurse reported me to the state at the same time.

This started a chain of events I couldn’t have imagined. After DCYF interviewed me, my daughter and others who knew us, no indication of parental neglect was found, but the experience left devastating consequences. Maya’s delusions surged because she thought I was going to jail. As a Black parent, I realized that if I advocated for my child in a way the system did not respect or understand, I could lose her. In a space where trust is important, now all I can feel is fear. 

I didn’t think racism would rear its ugly head in the most vulnerable of places. I was so very wrong.

Black folks are understandably leery of a medical system which historically hasn’t had their best interests at heart. Ruth White, a professor at the University of Southern California, said this distrust is not without merit. “Historically, African Americans have been misdiagnosed at higher rates than white patients, and Black communities have been exploited by the U.S. government and medical community for medical advancement.” 

Many people in the Black community don’t get treatment because of multiple barriers, such as poverty, lack of insurance, and the lack of Black providers who understand our complicated American experience. Cultural stigma is also at play; the trope of the “strong Black woman” or being “weak” for men hinders many of us from getting help. If Black parents deny their own existential pain, how will they honor their children’s?

The pandemic exposed how hard the behavioral crisis is hitting Black youth: 50% of all lifetime mental illness starts by age 14, and Black children are less likely to receive treatment due to the lack of early intervention. The White House has recommended early intervention as an effective strategy to tackle the crisis. 

For Black children, school may be the only avenue where their burgeoning mental illness can be identified, diagnosed and treated. School-based services could set up at-risk kids with the tools to lead fulfilling lives. Without addressing the racial disparity in care, the school-to-prison mental health care pipeline will continue.

We’re healing from the trauma caused by the DCYF investigation. Six months past the incident, I requested the case file. The report questioned whether Maya really had psychosis because she wouldn’t be seen on telehealth calls; she was afraid of the camera, which they knew. The person who filed the complaint implied that I fabricated her illness; a pertinent detail is that she entered the program with a diagnosis of psychosis from her doctor. Reading the report was gut-wrenching. The system is not built for Black people and can easily put us in places we never intended to go. 

It’s not something we can readily forget. I am now careful when speaking with potential providers. I find myself minimizing questions or demonstrating multilayered understanding of Maya’s symptoms. I’m worried that if I do ask too many questions or show I know too much, I’ll get reported. 

No mother should experience this fear. We are more than our children’s guardians — we are their protectors. Black pain and vulnerability is criminalized at every turn; there’s no place for us to simply be.

Though I am fearful, my voice is important. The system only changes when it hears from the voices it has silenced.

Brittany Miles is a Seattle-based writer and mental health advocate.