NAMI HelpLine

November 03, 2021

By Patty DeMauro

person with jumbled thoughts

As a parent, I’ve learned that it can be unbelievably difficult to recognize that your child is suffering from an illness of any kind, least of all a mental illness. After navigating the maze that is the mental health care system, I discovered that early detection can help reduce the severity of mental illness. This only served to fuel my guilt that I had failed my son.

I’ve often wondered: How did I miss the signs?

 

When the Signs Started

My son Frank had been the “perfect” child. He was happy, fun-loving and intelligent. He was a skier, skateboarder, guitar player and one notch from Eagle Scout. Most importantly, he was the child who sat with the new kid in the lunchroom at school. There was never a doubt in my mind that a bright and happy future awaited him.

The changes were gradual. His grades began to slip, then came minor skirmishes with friends, followed by small white lies. He was spending more time alone in his room. Eventually, he refused invitations to do the things he loved. More and more frequently I’d find him staring into space.

Deep down, I knew these might be signs warning me of trouble. But when I confronted him, he would turn on a thousand-watt smile and tell me I worried too much. He assured me that he was fine and no different from any other teenager. So I dismissed it all as adolescent angst.

 

When the Signs Escalated

For parents, certain milestones in our children’s lives are etched permanently in our minds, usually triumphs and achievements. However, for me, one particularly painful memory endures: The day I received a phone call from the police telling me that my 17-year-old son had been arrested. My first thought was that surely the police had made a mistake. But Frank had been positively identified. He and another boy had broken into a classmate’s home and stolen a CD player.

When I arrived at the police station, and they brought Frank to me, I immediately noticed that his face looked different. It was as if strings were pulling on the corners of a smile that was twisted on his face. Rather than question him, I held him tightly and told him he would be fine. Shortly after, he was released to my care until his appointment to appear before a juvenile court judge.

Once before the judge, Frankie received a stern lecture. She ordered him to return the stolen property, to perform eight hours of community service a week for the next four months and to submit to weekly drug testing. Frank was respectful and apologetic. He was assigned to a maintenance crew in our town center. Every Wednesday, he went for his drug test. I allowed myself to feel a sense of hope.

 

When the Signs Turned into a Diagnosis

Then, the phone call came that would change our lives permanently. It was the judge’s office. Frankie had failed the drug test. And this hadn’t been the first time. The judge had spoken to my son and warned him of the consequences of getting high and ignoring her ruling. The judge then sentenced him to the county’s juvenile detention center for six months. He was scheduled to be transported the following day.

Frankie remained rigid in his insistence that it was such a “minuscule amount of pot!” He even laughed when I questioned his disregard for the judge’s orders. And then he just shut down. I hugged a wooden statue of my son who gruffly pulled away from me. He said something about his cell phone that I didn’t understand. More signs I was unable to decipher. I wept openly as he walked out the door flanked by a social worker and a county officer.

It was during the second month of Frankie’s incarceration that I received a certified letter from the detention center’s medical unit. He had been diagnosed with acute paranoid schizophrenia. He was severely withdrawn, hearing voices and, according to the doctor, completely out of touch with reality. They were prepared to start him on a strict regime of medication for which I had to give my consent.

My rational mind fought against my desire to shut down. It was as if I’d been looking at our lives through a different lens. Past events began to make more sense. Schizophrenia began as a fine mist that thickened over time until my son and I were enveloped in an impenetrable fog.

 

When We Pursued Answers

I sensed that if I didn’t begin to learn about this disease, my son might remain in his haze of delusion and paranoia. And so began our journey — one that has been, and will continue to be, a lifelong effort.

First, I spoke to several psychiatrists referred by our family physician. I read up on anti-psychotic medications and worried about the terrifying side-effects. Along with a psychiatrist who specialized in the treatment of schizophrenia and permission from Frankie’s doctor, I even coordinated the delivery of a more powerful drug to the detention center’s dispensary.

I called the charge nurse at the detention center daily to check on my son. She assured me my son was getting the proper care. She also told me that even though Frank was struggling with his symptoms, he always tried to smile and often whispered “thank you” to any nurses that visited. This information made me hopeful that people might look past my son’s diagnosis and see the amazing young man that I knew.

 

Finding a Path to Recovery

Many prayers and small steps later, I had the good fortune of meeting Kathryn Hunter, the then-Executive Director of NAMI Collier County. After meeting Kathryn, I was no longer alone in my search for answers. She stressed the need for embracing every available resource (of which there were many).

She suggested my husband and I attend the NAMI Parents Group, a peer-led group that shared the challenges and successes of those facing similar experiences. Most importantly, she introduced us to the Florida Assertive Community Treatment team (FACT), which became an anchor throughout my son’s journey to recovery.

FACT, an interdisciplinary approach, offered 24-hour, seven-days-a-week care to people with severe mental illness. She advised us to make FACT our first stop upon our son’s release from the detention center. The orientation to the program gave us a refreshing sense of security, knowing that our son had a psychiatrist, caseworker, therapist and nurse who were only a phone call away.

These mentors and resources made all the difference. Frank was able to get on the path to recovery and work toward the life he deserved. Kathryn’s inspiration, and the concern of the many advocates we were privileged to meet along our journey, have kept us committed to share our experiences and spread hope to those also battling this illness.

 

Patty DeMauro, an avid supporter of NAMI Collier County, brings 30 years of experience to her retail store: Patty’s Apparel in Naples. Through her family’s personal experience, she aspires to offer a lifeline to those suffering from mental health conditions.

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