Just Keep Fighting: Navigating the System for Kids with Menatl Illness

Kelsey Rose Brouillette 1999-2018

Just Keep Fighting: NAVIGATING THE SYSTEM FOR KIDS WITH MENTAL ILLNESS

By: Jason Huddle

I don’t typically write in the first person. But I am going to do that with this article because this one is personal. It is about a topic that cut my family to the core one night in late October, 2018. We had all been together that evening to celebrate the gender reveal of my eldest niece, Ashlyn, who was expecting her second child with her husband, Jason. The happy couple threw a special powder on the roaring campfire to reveal the sex of their coming child. The flame turned blue. Everyone was thrilled. Although, there was one notable absence. Of course, this wasn’t unusual. Kelsey, Ashlyn’s sister, had been struggling with mental illness the past few years. She would have good days and bad days. Lately the bad had outnumbered the good and being in social situations seemed to exacerbate that fact. Little did we know, while we were enjoying each other’s company, celebrating this new life coming into our family, Kelsey was sitting on the side of a road near Harrisburg, contemplating leaving this world.

At 5am the next morning, my phone rang. It was the worst call I’ve ever received. Kelsey was gone, just three days shy of her 19th birthday.

It is a tragic story with a horrible ending. I never thought I would ever have to live through it, or watch my sister mourn the loss of her daughter. But how did we get here? People always say, “They should have gotten her help!” The truth is, Kelsey had been hospitalized twice for her condition and was under a doctor’s care. In addition, at the time of her death, Kesley was legally an adult. As such, the choice to take her medications or seek treatment was completely up to her, unless she demonstrated she was a threat to herself or others. It was only after her death, we discovered videos on the internet where she indicated her “voices” were telling her to kill herself. In person, she was telling everyone the opposite. Even though she was still in high school and living with her father, HIPPA laws prevented doctors from discussing her condition with family. In short, we were powerless help her.

When her symptoms began, Kelsey was still a minor. Unfortunately, we were novices at this. Navigating the system is not easy, especially when it comes to getting help for a child under 18. Perhaps if we had known then what we know now, the outcome may have been different. Which is what brings us to the crux of this article. I wanted to educate our readers on what to do if you are faced with your own child being in this unfortunate situation. What can be done? What help is available? How do you get it?

I sat down with a local resident of Cabarrus County, whom we’ll call “Angel.” Her daughter, “Hope,” is a diagnosed schizophrenic. Hope would tell you she heard voices as well, but they would tell her to do harm to others.

Hope’s story starts when she was very young. As far back as she can remember, she began to see hallucinations. “Her first major break was around the time she turned twelve. She was completely unable to distinguish what’s real from what’s not. Despite it going against everything that is her natural personality, she was suddenly completely obsessed with the idea of violently killing another person,” remembered Angel. “She would actually giggle while talking about it. It was a scary, traumatic time.”

Since childhood-onset schizophrenia is rare, it can be difficult to get a diagnosis, In Hope’s case, it was a little easier call for the doctors. “In our case, she remained psychotic -- broken from reality -- for so long, and had so many symptoms, that it was a clear diagnosis,” Angel recalled.

Despite the “clear diagnosis,” treatment for Hope has presented its challenges. First, there was the trials and errors associated with finding the right medication, which can take a toll on the patient, as well as their family. In Hope’s case, she has shown medication resistance, which made things exponentially more difficult. “It took a year and a half to achieve even a small measure of stability,” Angel explained. “That was a scary time, watching her flounder as med after med failed to help. She ultimately showed some response to an antipsychotic that is considered the last line of defense in people who don’t respond to any others. It’s a higher risk med, and she was just thirteen when she started taking it, but it was our last hope to bring her any stability.”

While she still has some hallucinations and experiences the cognitive and negative symptoms associated with schizophrenia, Angel says Hope is a very different person from who she was in the early days.

However, “the medications were only the first in a series of challenges,” Angel said. “Believe it or not, our barrier has sometimes been the fact that we have private insurance. It would probably surprise a lot of people to know that private insurance is not as good as Medicaid when it comes to approving treatments. In addition to parenting a teen with serious mental illness, I am on the board of a nonprofit that serves families like mine. We always know that we’re going to hit more walls with a child with private insurance, because they will not approve things as readily. Additionally, some facilities and programs are exclusively available to patients with Medicaid. Hope has not had a lot of behavioral issues, so while she’s been hospitalized a number of times, she has needed only a therapist and psychiatrist outside of those hospitalizations. If she’d needed things like in-home support, we would not have been able to get it covered.”

Hope’s case is so severe, according to her mother, that getting her admitted when she needed hospitalization was never the challenge. However, hospitalization can bring its own difficulties. Even if it’s approved by the insurance company, there is always the questions of beds being available and where. There are only a few facilities specifically for minors in North Carolina. So, it would not be uncommon, if Hope needed to be admitted, to be driving to one end of the state or the other, because that was where a bed was available.

“There are simply not enough psych beds in the state for children or adolescents,” explained Angel. “She has had to wait for as many as five days in the emergency department before a bed has opened up anywhere. Once they do find a bed, your child goes wherever that is, which could be anywhere in the state. Hope has been hospitalized outside of Charlotte four times, and each of those times, I stayed in a hotel near her so I could see her daily at visiting time. That gets to be exhausting and expensive. She once spent almost three weeks just outside Wilmington in the summer, and we paid summer beach town hotel rates, plus food costs and such, for the entire three weeks.” It is a process that requires the parent to be a constant advocate for their child and it is relentless.

Unlike Kelsey, Hope’s story goes on. While she continues to improve in comparison to when she was first diagnosed, Angel and Hope know there is no cure for schizophrenia, and she will never outgrow it. Unless there are huge breakthroughs in treatment, she will not get better. “Our number one priority is keeping Hope safe,” Angel stated. While she had exhibited homicidal tendencies initially, Angel said she is more likely to hurt herself than others, now. “She has attempted suicide once, has come very close before stopping and asking for help several other times, and has a history of serious self-harm.”

Beyond “keeping her safe,” there is the task of dealing with activities of daily living. In addition to causing things like hallucinations and delusions, schizophrenia can also result in cognitive and social issues as well. “While she does a great job of looking “normal” in social settings and relates pretty well to others, we are constantly managing and balancing her interactions, stress level, and mood,” explained Angel.

“Realistically, life will never be easy for her. It’s not just about hallucinations and delusions. Schizophrenia affects almost everything her brain does. The best way to describe it to others who aren’t as familiar with it is that it’s like dementia; in fact, the name for it used to be dementia praecox, which means premature dementia. She struggles with memory, executive function, social situations, and more. Only about 5% of people with schizophrenia hold a full-time job, and just 20% or so hold even a part-time job. She will always need some supports in place to help manage her life, and she will not be able to experience some of the things that others do, like parenthood, or full independence.”

Fortunately, Hope is also defying odds and showing how amazing she is all the time. She has held a job for the last several months, just because she decided she “wanted to be a regular teen and get a regular job.” “Her managers have raved about how great she is,” Angel said triumphantly. Hope also volunteers her time and spends time with friends. “She’s a thoughtful, loving daughter and sister.”

Hope is working hard to ensure she can live a life that’s as close to “normal” as possible, because that’s what she desires for herself, said her mother. “She is an inspiration to all who know her and, while this isn’t the road we imagined when we became parents, we couldn’t be more proud of how she’s playing the cards she was dealt.”

However, what about those parents and families as the beginning of this journey? Angel has some simple advice. “Just move forward. It can be hard and feel paralyzing, but you can do it. You may be unsure of what the threshold is for seeking help, but it is never wrong to just run concerns by your child’s doctor. You may feel some denial about what’s going on, but remember that your child is already struggling with whatever it is. Naming it isn’t going to make it worse, and ignoring it isn’t going to make it go away. Earlier treatment is always better.”

I wish I’d had this information while Kelsey was still alive and at the beginning of her illness. Yes, dealing with a child with schizophrenia, can be a grueling process. During her final morning on earth, she reportedly ranted at the top of her lungs for several hours and this was not uncommon for her. She would get in people’s faces, pull hair, call the authorities and accuse people of abuse. Once, she cut the electrical chord to the family television because a paranoid delusion that told her the CIA was using it to spy on her. One of my last conversations with her indicated the same paranoia and there was nothing I could do to convince her it wasn’t real. It was truly exhausting.

So, my advice to you is the same as Angel’s. Keep at it, no matter what. Don’t give up, no matter how tempting it may be. While Hope’s story may not be ideal, she is still with us. She is still fighting. She’s still in the game. She is demonstrating that, while there is no cure, she is overcoming her diagnosis by taking it one day at a time. Kelsey’s story? It serves as reminder of a precious life lost too soon, but also a motivator to educate others on why it’s so important to not ignore mental illness when begins to surface. And, if it does, just keep fighting. ■

Writer’s note: Sometimes, despite all your best efforts, your child’s story may end like Kelsey, rather than Hope. Even Angel knows Hope is still in real danger. This article is not an admonition of those families, but rather is directed at those who are just beginning this process, so they will know how to educate themselves and they are not alone. For more information on Hope and her story, visit www.hopeinthedarkestdays. blogspot.com/2018/.