My son, Max, is 11 years old and has always marched to the beat of his own drum. His journey began with a mysterious health crisis at just two weeks old, which left us grappling with uncertainty. As a toddler, he was described as “a firecracker,” and while he excelled at communication during calm moments, emotional triggers sent him into what we later recognized as meltdowns.
By age six, Max was diagnosed with autism spectrum disorder and later faced additional challenges, including mood disorders, anxiety, and dysgraphia. Despite our best efforts—medications, an amazing private school, various therapies, and even being waitlisted for a part-time residential program—everything culminated in a crisis one October afternoon in 2017.
I received a tearful call from my husband, Mark. “Max has lost it at school. They can’t manage him. We need to take him to the ER.”
When I arrived, I was met with a chaotic scene: four staff members struggling to keep him from running into traffic. It had been a challenging week. With his IEP renewal looming and his typical struggles, the tension in our home had escalated. Earlier disciplinary actions had proven ineffective; those familiar with children like Max understand that traditional punishments often miss the mark.
We were fortunate to have previously collaborated with Linda, the school’s director, who advocates for children’s mental health. We had faced moments where we nearly called the police on Max, but this was the first time he had such an episode at school.
Max experienced what is known as a psychotic break. In that state, he was unreachable. Reasoning was futile. Punishment wouldn’t work.
Max fits the criteria for autism perfectly. From an early age, he has had an obsession with trains, spotting them from afar before he learned to say “Dad.” He grapples with social cues, struggles with hierarchy, and seeks control over situations, sometimes to extreme lengths. His intelligence is remarkable, but he faces significant hurdles with executive functioning and understanding others’ perspectives. Although he appears socially charming, it’s often a tactic to steer people toward his desires. Once a meltdown begins, it can spiral regardless of what he might achieve.
Yet Max is a brilliant soul. He adores animals and is fascinated by how things work. He fiercely defends kids who are picked on. His primary connection with others might begin with trains, but he genuinely tries to engage. Unfortunately, as his meltdowns grow in intensity and duration, so does his self-loathing. He has expressed thoughts of self-harm and worries that he is less loved than his sister.
We’ve delved into countless books to comprehend his world, but none have resonated as profoundly as those by Dr. Ross Greene. I firmly believe Max wants to succeed; he simply lacks the necessary skills.
What Waiting Means
For children like Max, the only option is to endure the wait in the ER. His recent experience with police, as we transported him to the hospital for fear of his safety, was daunting. I’m grateful for the support from the officers who handled the situation with care. Once the psychiatrist on-site agreed that Max required inpatient care, she provided a list of hospitals from Raleigh to Wilmington. However, with limited beds available, we were told, “this process will take time.”
We checked him in on a Friday, a day when little happens in hospitals. Now, we find ourselves over 200 hours into this wait—a full week.
This waiting period has included:
- Multiple room transfers
- Countless nurses
- Numerous other children in similar distress
- Panic attacks and meltdowns
- Restraints
- Medication doses
- Multiple calls to facilities and representatives for assistance
As the days dragged on, it took Max four days to reach his breaking point, which I considered a testament to his resilience. My husband and I had left the hospital, exhausted, only to learn that Max had been restrained—information the staff had failed to communicate. We promptly filed a grievance, and they are “looking into it.”
The World Health Organization has recognized the escalating mental health issues among children, and the trend shows no signs of reversing. Each time Max is relocated, he must recalibrate, draining his energy further. While I understand that ER nurses are not trained for such situations, we need more compassionate caregivers. One nurse, Jim, stood out, recognizing the unique anxiety Max faced during his time in the high-security area of the hospital.
When I visited Max, he was in tears—something he rarely does. This was a child who usually kept his emotions in check, now openly sobbing, his eyes raw.
Then came his first panic attack. As someone familiar with anxiety, I was caught off guard. His body seized, and he struggled to breathe. Thankfully, the nurses were attentive, calming him eventually with medication. However, his environment—a hot, windowless room—was far from conducive to recovery.
Another panic episode occurred later that night, and when I sought help from the new nurse, she rolled her eyes at the mere mention of “panic attack.” How can anyone dismiss the struggles of a child who arrived at the ER expressing thoughts of self-harm?
The stark reality is that solutions to the mental health crisis are not easily found within the medical framework, which is unprepared for acute psychiatric patients. A significant number of children with mental health disorders find themselves in ERs due to a lack of available services.
What a Psychiatric Bed Means
Max needs thorough evaluation and care. Our family is fortunate to afford private schooling and access resources in our area, yet finding appropriate inpatient help remains a daunting task. The unfortunate reality is that we had to wait until things escalated to this level.
Psychiatric beds are not profitable; they aren’t appealing for facilities that often prioritize lucrative procedures. The few private institutions available do not always have the best reputations. The ER is merely a holding area, where Max is not trusted with basic items like forks or a chance to step outside.
The judgmental gazes directed at him are disheartening. At just 11, Max appears older than his years, but he is still just a child—one who has endured verbal abuse and neglect.
As a parent, this is Max’s first deep dive into the mental health system. He has lived in a protective bubble until now, and I wish I could convey the importance of this wait. He is desperate for help, struggling against the confines of his own mind.
The lack of empathy I’ve witnessed has been shocking. Today, I took a break from the hospital, and when Max called, he was elated to have been moved from the high-security room. The sunlight streaming in might provide him with a glimmer of hope. However, I continue to emphasize to everyone: he is not in a position to thrive. He requires kindness, space, and understanding.
This crisis is not limited to our state. Although we have resources here, the situation is grim for many families. I’ve met countless others—children facing severe challenges, with some hardly receiving visits from their parents. For them, the ER becomes a revolving door.
The lack of outpatient services is a primary factor driving children with mental health issues to the ER, often because proper care is unavailable or not covered by insurance.
200 Hours
I find myself fixating on the number 200. What could one accomplish in that time? How long could anyone endure the confines of a hospital smock, the monotony of hospital food, and the incessant probing from staff?
How much longer must we wait for him?
“I just want to go home,” he said, his voice filled with a longing that echoed through my heart.
In summary, the ongoing battle for adequate mental health care for children like Max highlights a systemic failure within our healthcare system. The journey is fraught with challenges, but as parents, we continue to advocate for our children’s needs, hoping for a brighter future.