n a world dominated by a medical model that often harms rather than supports people in a mental health crisis, caregivers and parents are often overlooked. At times, the medical establishment does not want to partner with parents, especially when the child is over the age of 18. While the person needing help is technically an adult, it is the mom—or dad—who knows them best.
It’s a complex road for people who are in the system as adults but still need advocates. As families work within the system presented to them, and often outside the system, they also find their own, tailored solutions. Everyone’s story is unique and different, while the desired outcomes are the same: to find a path forward, with the least harm and trauma, into a functional, full life, whatever that looks like for every individual. It is a person’s birthright to secure joy, happiness, and a capable life while riding the waves of ups and downs.
At the center of every parent’s story is a child who deserves more of all those things—a child who often is not seen as a human being, suffering and in need. Who, underneath all the labels and medications, is a multilayered, intelligent person who needs love and support just as much as anyone. There are times when the child does not have a voice—whether it be from other communication challenges, fear because of past coercion, or being overmedicated. To understand those children better, we need to start listening to their parents. This is paramount for the medical professionals in charge, whose job is to comprehend people in their care but who, too often, ignore the voices around them that have the most to say.
So let’s give them a platform. To that end, here is the first in a series of interviews with parental caregivers, both mothers and fathers, whose stories need to be told. We’re kicking it off with a mother, Elianna, who lives in Colorado with her son, Brandon, 34. His many diagnoses and misdiagnoses include autism, complex trauma, dissociative identity disorder, schizophrenia and schizoaffective disorder, and he has been prescribed multiple antipsychotics, anti-seizure medications, antidepressants, and anti-anxiety drugs over many years.
The interview below has been edited for length and clarity.
What is your child’s name and age? Tell me a little bit about his story and yours.
Brandon was born in 1989 at home in the Colorado countryside and made developmentally appropriate milestones. He excelled in various school settings. . . . In Colorado in 6th grade, he was identified in public school with learning challenges and put on a 504, which was designed to Brandon’s needs. This plan was tailored to his learning and processing differences. This was helpful for him throughout his school years through graduation.
Brandon was only officially diagnosed with autism at the age of 27, when he got a neuropsych exam. I didn’t even know about neuropsych assessments or autism until I was going to see a therapist in Colorado Springs, and she told me to get an assessment before she would work with us. Unfortunately, there was no support for autism or neurodevelopmental disorders when he was in school, even though this was supposed to occur.
He was labeled (diagnosed) with schizophrenia by a questionable therapist, when he was 18, which sent us spiraling into many medications and hospitalizations. Once he was diagnosed with schizophrenia, that cut off any possibility of help in the world of autism. Deep traumatic experiences in his early childhood of an alcoholic father coming and going left Brandon often feeling deep despair. Brandon has been diagnosed with complex trauma and dissociative disorders as well from all of his experiences.
Can you tell me a little bit about your experience with Brandon and the current medical model?
Brandon has been through numerous hospitalization stays, which have led to an increase of trauma and dissociation and confusion about diagnoses. These hospitalizations were primarily harmful, unfortunately, which made him worse off than when he arrived there. I believe that the antipsychotic medications actually induced his initial psychotic symptoms. [Doctors] often do not understand the dual diagnosis and only medicate, which leaves him incapable of communicating. Because of his lack of communication abilities, they continue to treat him like a non-human, because they don’t understand his multiple challenges. He is safer and better treated at home.
The first psychiatric hold was in Pueblo for three weeks. I asked the psychiatrist why she was keeping Brandon there. Her response was that he was psychotic. I asked what she meant. She said that he said, “The air is toxic in here.” Well, the air is very toxic in any psych ward, physically, mentally, emotionally, and spiritually. She didn’t understand, and no one seems to understand. Brandon speaks in metaphors, that’s just how he is. He was also sexually assaulted there—however, we were not informed until Brandon returned a year later. This trauma has stayed with him emotionally.
The second psych hold in the same facility was three months, and they tried to do a second three months, but his lawyer dismissed that. During that stay, I petitioned for legal guardianship, which was granted by the judge in Saguache County. The psychiatrist refused to speak with me the entire 90 days, which was in violation of court order. That time, the court ordered Clozaril, which immediately caused severe side effects including excessive drooling, and neurological damage which looked like balance issues, collapsing, and falling while trying to walk. This took years of healing with natural medicines and treatments that I paid for. And there were several other psych inpatient shorter stints.
More traumas occurred over the years. This caused a lot of harm and further dissociation.
Police brutality is one such trauma. In 2019, we were driving with a cracked windshield and were pulled over by an individual rookie highway patrol officer. This escalated quickly with other officers called onto the scene for no reason. Brandon stayed calm with guns pointed at us. However, they did assault me and took us both to jail, having not committed a crime. They put us each in isolation and refused to give Brandon his medications, which included three anti-seizure medications. This was a dangerous, life-threatening situation.
The next day, they threw us out of jail with no money and no vehicle, which is Brandon’s safe place. The police showed up and Brandon walked away. Subsequently, the police chased him down while walking down the side of the road. At one point, there were three cops on top of him all at once—and one of them slammed his head repeatedly on the pavement and punched him with his fists. I didn’t even see what the cops had done to Brandon’s head until a couple years later, when my lawyer showed me the video tapes and made me watch them over and over and over and over again, at least a dozen or more times. It was horrifying.
This may also have caused some brain damage and a traumatic brain injury (TBI). However, the doctors don’t seem to think that’s important and have refused to provide proper testing to diagnose and treat, like they would a “normal” person.
Many of Brandon’s psychiatrists over the years constantly accused me of not following through with medication regimes, because I don’t agree that they help—because Brandon does not improve or act normal when taking medications. So they conclude that I must not be providing medications. And I also feel that the antipsychotics cause more harm than good.
Being alone and in fear for my child’s life puts me in a position of being emotionally charged, and this backfires for me. I am still learning how to regulate my own nervous system so I can be there for my son, but when I’m the only one fighting for him, it can be frustrating and enraging and extremely tiresome. My focus now is to learn how to use my words wisely and non-offensively, and to figure out exactly what it is I want and I’m asking for. I’m stuck in the past of all the things that went wrong, and that keeps perpetuating itself until I decide I’m done with the past.
When have you not been heard and what did you do about it?
Multiple times I have not been heard and been told I am part of the problem instead of the solution. Every time Brandon begins to work with a doctor or is in the total care of others, he becomes worse. While I believe his medications have made him psychotic, I still give them to him because his behavior can become dangerous and life threatening. For example, last time, he started throwing things everywhere and breaking things recently before his current hospitalization.
Consistently, many of the psychiatrists do not listen to me even as the legal guardian, nor do they question me to get accurate information. Instead, they decide that I am the problem. They despise my questions and, even more, my knowledge. They are often insulting and evasive. Recently I’ve needed to obtain medical records, and [I’ve seen] the massive amount of inaccurate information, beginning with the claim that my son’s father and uncle were schizophrenic—therefore wrongly confirming a genetic basis for schizophrenia. . . . Unfortunately, this has led to my son’s decline mentally and emotionally over 16 years due to wrongful diagnosis and failure to properly treat his symptoms.
I have attempted over the years to get Brandon’s medical and mental health records modified to delineate truthful information so Brandon can be properly treated, however, they always refuse to change anything. So I just continue telling our true story to one person after another, hoping to eventually find someone who listens. I’m still working on this. Also, keeping better records is necessary and helpful.
Various people do not believe Brandon to be schizophrenic, but once he got in the medical system and labeled, it followed him—and the various medications continue to make him worse. He has been on Prolixin, Valium, Depakote and Trazodone. I took him off the Trazodone because he could not sleep and took him off the Prolixin because he was vomiting, and then realized it was the Depakote after all. The Depakote has a black box warning and causes liver failure, and while he was going through withdrawals I couldn’t find any psychiatrists, doctors or naturopaths to help.
Since Brandon was first medicated, I believe that it changed his brain and now it seems that he requires medications to stabilize. The antipsychotics cause so many issues including daily vomiting, weight gain, bad dieting, [and] no exercise, which contributes to a diabetic condition and dangerously high cholesterol levels and heart conditions. I was titrating him off a black box warning drug which causes liver failure, and he was going through intense detox symptoms. They make these drugs so that it’s really hard to titrate. This one drug is an extended release, so I couldn’t cut it and had to cease too quickly, at the end which caused severe reactions.
The psychiatrists won’t help, and neither would the naturopaths when the symptoms are this severe. However, the new supplement regime was helping him wake up finally. And just as he was almost over the hump, Brandon was walking alone without a shirt on a warm sunny day, and “they” snatched him and locked him away as if he was a criminal. Mental health and Adult Protection Services have been plotting for a while to institutionalize Brandon. Instead of providing the services that he needed while in the home, they instead focus on blaming and destroying me, projecting their failures.
Time and time again Brandon, a young man with developmental disabilities since the age of 12, has been stripped of everything familiar and safe to be put in situations of intense trauma.
They court ordered Brandon to do ECT, without my consent as legal guardian, which is an invasive and dangerous procedure and which will not make him “normal,” and they don’t seem to understand. He needs and wants to come home now. He asks me everyday for over 2 ½ months: When am I coming to get him? If this treatment helps a little, I am willing to take him for follow-up, absolutely. And if it’s not helping, then I will continue with his current medications of Valium and supplements along with alternative treatments–like diet and nutrition. I have found that carbohydrates and sugars can contribute to psychosis. I provide healthy simple foods, herbal teas, essential oils, yoga, supplements, essential oils, dance, music, art, writing—[which] cause no harm and have positive effects on Brandon’s health.
What do you want doctors and other clinicians to know about parents striving to advocate for their children?
First of all, I want doctors and clinicians to understand that we as parents, guardians, family members, and/or loved ones live with severe trauma every day because our loved ones are traumatized. I want them to stop blaming us because we care. I want them to question what they read from past reports and verify accuracy on past medications, treatment and their safety and efficacy.
I want them to understand the fear and terror we feel from being separated from our children, and not being able to provide them with the healthy choices that we provide at home. We need reassurance and evidence that our children are safe. When we ask questions it’s because we love our children. We want you to treat our children as if they were your own children. Don’t treat me like the enemy because I am going to watch my child like a hawk.
What do you do for self care so you can be the best advocate for your child?
My self care includes weekly therapy, and a DBT (dialectical behavior therapy) group which helps with my emotional regulation, acupuncture, massage therapy, gardening, making nourishing meals, taking walks in nature, collecting plants and making medicines, petting my kitties, playing music, coloring mandalas, and hot baths.
What do you want them to know generally about people in psychiatric care?
People in psychiatric care can have a wide variety of reasons for their symptoms. One size does not fit all. It has typically been a poor experience for my son and myself, and he often comes out worse than when he went in.
Because I’m so honest, I tell everything with the presumption that more information will help the doctors make well-informed decisions. However, it actually backfires. They twist what I say, which becomes a completely different story.
What do you believe is a good solution? Where does it start?
Understanding that each individual is different and complex. There is no one pill that will fix every child. It is multilayered and multidimensional, and each individual needs tailored care.
My son has good care when he is at home. He has a caregiver program, so he gets one-on-one attention several hours a day, and he has specialists to provide healing with acupuncture, massage therapy, craniosacral treatments for TBI, and herbs and supplements to support healing. At home he has these people he knows and trusts. His home, his animals, his gardens, his friends, and more are all really important to a smooth and calm flow of his life because of Brandon’s severe issues. The dissociative disorder requires very specific therapy that is not provided at any institution and can take years to work through. Yes, he is very complicated. Brandon is my only priority in life. God gave me this beautiful child, and he is my one and only primary commitment in this life, to keep him safe and to provide the best possible care and love. This is my commitment.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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