"If only we'd known back then" Managing our son's mental health journey

In the fall of 2020, our son was diagnosed with bipolar disorder. The diagnosis was made after his first manic-psychotic episode. Bipolar psychosis occurs when a person has a severe episode of mania or depression, as well as psychotic symptoms and hallucinations. The symptoms tend to correspond to a person's mood. During a manic phase, they may believe they have special powers and engage in reckless or dangerous behavior. Over the next two years, he experienced three more episodes. As parents, it was devastating to watch our child endure this torment.

Since May is Mental Health Awareness Month, my wife and I have decided to publicly share our story in the hopes of helping other families who may have a loved one or child suffering from mental health issues.

Let me begin by saying that our country's mental healthcare system for children and young adults is severely broken and lacks the necessary resources to address this growing crisis. According to the Centers for Disease Control, the number of young people experiencing persistent sadness and hopelessness, as well as suicidal thoughts and behaviors, has increased by nearly 40% in the last decade. Furthermore, in many communities, mental health is still stigmatized, making it even more difficult to seek appropriate treatment.

As parents, we felt helpless and lost while navigating our son's diagnosis. We received conflicting opinions and a variety of treatment options because mental health is not an exact science. For people who like to try to “solve” everything, this was one of the most difficult periods of our lives.?There were many nights when my wife and I broke down because we were so overwhelmed with trying to get our son the right help and not knowing where to turn. The process of understanding what was happening was iterative. We learned more with each episode by speaking with families facing similar challenges and engaging with a variety of mental health professionals. Looking back, we wish we had known what we now know.

Through this journey, we learned five key lessons:

1. There is no "silver bullet." Be prepared for the journey.

As parents, we are accustomed to taking our children to the doctor and receiving straightforward answers: "she has the flu, or her arm is broken." This is not the case when it comes to mental health. We expected the doctor to prescribe some medication, and everything would be fine. Unfortunately, it does not work that way. Diagnoses may be incorrect, and behaviors may diminish or progress over time.

We were unprepared for the journey that bipolar disorder would take us on. We thought each manic-psychotic episode would be the last. We had a trying time accepting that our son would have to manage his mental health for the rest of his life. We wish someone had told us that right away.

2. Don't minimize or ignore the warning signs.

To be honest, there were signs our son was in trouble and on the verge of a crisis. His demeanor shifted dramatically, and he became more reclusive. We dismissed it as "just a phase" or "being a typical adolescent." We took him to see his therapist and psychiatrist, but they both downplayed his symptoms. While his behavior changed a few days before his mania, we had no idea that it was escalating or what would come. When he started to experience mania, my wife and I literally did not know who he was or what was happening. It was an out-of-body experience – for all of us.

Looking back, we should have sought professional assistance as soon as we noticed changes in his behavior. We should have also pushed his mental health providers to take matters more seriously or switched providers. His psychiatrist assumed our son was "tripping out and probably high,” when he was actually in the early stages of mania. We could have taken precautions to avoid some of the trauma he endured. We simply didn't know. Bottom line: We would have pushed harder for an earlier diagnosis and the right team to support him.

3. Seek the right assistance and do your research.

As previously stated, mental health is not an exact science. We relied solely on what our son’s therapist and psychiatrist told us. In retrospect, they were incorrect. We learned more about bipolar disorder with each episode and were better prepared to advocate for his treatment. We became more vulnerable and open to talking to other parents with similar experiences. We found better doctors and programs to support our son and gained more hope a better path forward.

Putting together the right team is essential. Do not be afraid to change doctors or therapists and talk with other parents who have been through this. Their support and knowledge are critical. I also wish we had used the resources provided by my employer and insurance earlier. They were extremely helpful throughout the process.

We want to thank the amazing and compassionate staff at New York Presbyterian Hospital, NYP-Westchester Behavior Health Center, and WestBridge. They saved our son's life, and we will be eternally grateful.

4. Be prepared to experience a wide range of emotions.

As an executive, I’ve had to deal with some serious issues throughout my career. Nothing compares to what we faced with our son. We had to manage our own thoughts and emotions in addition to what he was going through. And believe me, there was a wide range of emotions:

• Despair: Nothing is more debilitating than witnessing your child's suffering and being powerless to intervene. We wondered, "Why our son?"
• Guilt: As parents, we held ourselves responsible for our son's condition. Where did we make a mistake? How did we screw up?
• Embarrassment: It's difficult to admit, but we experienced shame and embarrassment. We've all got friends who have three kids in Ivy League schools and seem to have it all together. We had to navigate a range of difficult questions, such as, "How do we tell our family what's going on? What are we going to tell the school or college? Should I inform anyone at work? What will people think of us as parents?”
• Hopelessness: We began to wonder if our son could ever lead a normal, productive life. What effect would this have on his future?
• Depression: During his manic episodes, we would often have to spend days or hours tracking him down and, in some cases, calling 911 for help. It was devasting and exhausting. We were numb. We didn't realize it at the time, but we were both suffering from major depression.
• Frustration: Because our son is a young adult, we could not dictate his treatment. He had to make those decisions. As many of you are aware, young adults appear to know everything, and parents are illiterate. We had to sit back and watch as our son made mistakes and learned the hard way.

We had no idea that all our feelings were normal and part of the process of learning to live with a child with mental health diagnoses. We wished someone had told us that these feelings are normal and that we shouldn't "beat ourselves up." I also believe we should have sought professional assistance rather than struggling through this alone.

5. Create a new definition of progress.

We used to believe that progress was linear. Things are fine today, and they will improve tomorrow. This is not always the case when it comes to mental health. To advance, sometimes you take two steps forward and one step back. We frequently set ourselves up for huge emotional letdowns by declaring victory far too soon. We'd have a few good days and think everything was fine, only to have a major setback. This was a meandering journey for us and our son. Along the way, there were peaks and valleys.

We now know that our son can lead a full and productive life. He must do his part by taking his medication as directed, getting enough sleep, abstaining from drugs, leading a healthy lifestyle, and participating in therapy. We also understand that life can be unpredictable.

The good news is that we now know what to do and how to get back on track. So, for us, progress is "today is a great day because our son is healthy and safe," and we pray for the same tomorrow and the strength to deal with whatever comes our way. I wish someone had told us this when we first started our journey.

I'm happy to report that our son is back in New York for his senior year of college and doing well. We are so proud of him after going through so much in the last two years. His tenacity continues to inspire us and our entire family.

Learning to help our son was a painful, iterative process for us. We hope that our story will assist others in better navigating their journeys. There is much to be optimistic about. Mental health treatment and pharmaceuticals continue to advance, providing more options and hope for mental health diagnoses.

During Mental Health Awareness Month, and every month, I, along with my wife, encourage everyone to advocate for better care and resources for all children, young adults, and families who are going through their own mental health journeys.