I wrote this letter and met and shared it with a local State Legislator who is now helping our local NAMI in receiving funding for an extremely important program our local NAMI is putting together. I now want to share it with you.
Recently, there was another school shooting by a fourteen year old boy whose life had not yet begun to develop fully. It seems that this young man was suffering, and for reasons unknown, he couldn’t handle the pain he was enduring so he lashed out in the most horrific way imaginable: he walked into his school, and he methodically murdered or critically injured five beautiful souls whose lives were just beginning to unfold and then, he killed himself.
It’s a tale we hear described all too often in our fractured society. Young people who haven’t yet begun to live – feeling such insurmountable pain and suffering, not having the skills or ability to process through their emotions, feeling as though life is nothing more than an endless series of inescapable humiliations and let downs, they proceed to do the unthinkable. They take the lives of innocent, unsuspecting souls whose only crime was showing up to school that day. It’s heartbreaking, and it could be preventable; if we looked at mental health in a different light.
For eight long years I have watched as my own child has been plagued by intrusive thoughts, struggles to adapt socially, battles to suppress unwanted rage, is haunted by visions of monsters, clings to the idea that an inanimate object is his best friend, and verbalizes his desire that he had never been born while wishing to have the courage to kill himself one day. My son understands that he’s different and doesn’t want to continue to deteriorate over the upcoming years.
Including my son, there are five million children in the U.S alone who are suffering from a debilitating mental illness. These illnesses include severe disorders such as schizophrenia, bipolar, and chronic depression. These maladies impact children so severely that they are unable to function in a social setting such as a classroom environment. They have difficulty making and maintaining friendships, and in cases like my sons, some children have aggressive behaviors that spiral so out of control that it leads to violent outbursts and destruction of property.
Families across the socioeconomic scale increasingly have nowhere to turn for help. As I stated in a blog post I had written about an experience we had with law enforcement, there is an absence of adequate mental health care services in this country: there is a shortage of psychiatrists or other healthcare professionals capable of prescribing mental health medications, and almost non-existent hospital care and or beds for those facing a psychiatric crisis. Because of that, our juvenile halls and prisons have become the new “American Institution” for those suffering from mental illness.
Imagine living with a child or being an individual who is prone to fits of rage that includes violent threats, destruction of property, physical violence, menacing behavior, and verbal abuse. Know that most of these behaviors stem from processing or language disorders, pervasive developmental disorders, bipolar, schizoid-effective disorder, and schizophrenia. I want to make clear that not all people who suffer from these maladies are violent, in fact, a person with a neurological malady is more likely to be a victim of violence then they are to commit a violent act. When these types of aggressive behaviors are involved the person needs intensive therapies and possibly inpatient treatment. The families managing these behaviors need respite, and an opportunity for self-care.
I can’t begin to impress upon you the unbelievable stress of living in a perpetually hostile environment in which you’re working non-stop to manage the behaviors of an explosive child who struggles to verbally express their emotions in an appropriate manner. These kids end up relentlessly lashing out and wreaking havoc in the home and sometimes at school. I don’t think it’s possible to convey the magnitude of trauma it inflicts emotionally on the caregiver. I personally spend at least four hours a day being screamed at, insulted, and called vile and racist names by my own child. I am punched, kicked, slapped, forced to go to bed when my child goes to bed because his extreme fears and anxiety prevent him from being able to handle being alone. If I don’t go to bed when he demands, then he has an explosive meltdown and threatens my life and towers over me menacingly until I comply. My partner is forced to stand on the sidelines powerless to intervene because the moment he says something, everything escalates to epic proportions and our home becomes a war zone, in fact, it is a war zone and we are in a constant battle for my child’s life and our own safety and sanity.
No one should have to live this way. No one! But what choice are we given? Where are we supposed to turn? Are we supposed to call law enforcement and have them come traumatize our child further? Are we supposed to allow law enforcement to take our child to juvenile hall where for some reason this country feels compelled to treat people having a mental health crisis – in our prisons and in juvenile halls? Or perhaps we can call law enforcement while he’s having an explosive meltdown so they can overreact, escalate the situation because they’re ill-equipped to manage a mental health crisis and then have some quick on the trigger sheriff use deadly force on a child whose crime was to have been born with mental illness and autism? I mean really, what are we as parents and caregivers supposed to do?
The shortage or complete lack of mental health care in this country should be the crime. The treatment of those facing a mental health crisis and those caring from them – is nothing less than inhumane. How can we as a country have the audacity to insinuate that somehow we live by a higher set of moral standards then the rest of the world when we treat our most medically disadvantaged citizens with such utter disregard and allow the mentally ill to languish on our streets and in our prisons? The stigma we inflict upon those with a mental illness is just as palpable as seen here in this short quote. Gullekson (in Fink & Tasman, 1992) writes about her brother’s schizophrenia: “For me stigma means fear, resulting in a lack of confidence. Stigma is loss, resulting in unresolved mourning issues. Stigma is not having access to resources… Stigma is being invisible or being reviled, resulting in conflict. Stigma is lowered family esteem and intense shame, resulting in decreased self-worth. Stigma is secrecy… Stigma is anger, resulting in distance. Most importantly, stigma is hopelessness, resulting in helplessness.”
We have stripped state after state of much needed funding for mental health treatment. Instead of fixing the core issue of mental health hospitals, and ensuring those institutions had a civilized and humane environment where a person facing a mental health crisis could receive treatment – we shut them down and threw the sick out onto the streets with nowhere to turn for services and no resources to afford essential medications or treatments for quality of life. If that isn’t enough, we force parents to be caregivers of explosive children who jeopardize the safety of themselves and everyone in the home and in many states, like Washington, there is no recourse and no respite care for these families. Honestly, we rarely if ever receive a break from the monotony of hostility and then people are appalled and in shock when a mother tries to kill herself and her violent autistic child when she can’t find help.
I’d love to see someone who is advocating for less funding towards mental health care and hospitals, or someone who is a mental illness denier live the way we live for two weeks. Then I’d like them to look me in the face and tell me that we don’t need funding for mental health care services, that we don’t need to provide proper training for first responders, that we don’t need to provide hospital beds for those in crisis, and respite care for caregivers. The majority of people in this country couldn’t handle one day of what we as caregivers to mentally ill children face every day.
For eight long years, I have advocated for my son and tried to navigate through this convoluted joke of a mental health care system that we have here in America and somehow we just end up back at the starting line never seeming to make significant progress. For me, there are just too many lives at stake to not take action.
What people fail to realize is, that if we don’t fix these vital issues regarding mental health, and fix them now, all these children who are suffering from neurological maladies without proper supports, treatments, and coping skills – are going to be adults soon. We already have 43.7 million adults currently in the U.S suffering from a debilitating neurological malady so what are we going to do about it? What is it going to take to do the right thing? How many lives have to be lost? How many people do you need to see piling up on our streets? How much more money has to be put into prisons to house people who should be receiving humane treatment in hospitals? I mean, seriously!? What is it going to take to make people act on this national crisis?
There are some in our society who continue to falsely believe that mental illnesses are made up maladies that people use as a way of absolving themselves from taking responsibility for their actions. The fact is, neurological maladies are a real medical condition that affects the brain and disrupts a person’s thought pattern, emotions, and ability to regulate mood leaving individuals with a diminished capacity to handle the everyday stressors of life. In some cases, people require hospitalization, and or intensive wrap around services provided by local mental health care coordinators, or a combination or both.
I am asking that you please set aside your false perceptions of mental illness (if they exist for you), and insist that we provide quality mental health care service, and respite care for caregivers. There is much work to be done and I’m told that “it will take years to affect even the smallest of changes because of all the roadblocks mental health care advocates face.” I can assure you that our family, does not have years. We are in crisis right now along with millions of other families and individuals across this country and we are desperate for help.
I know that there are multiple mental health advocacy organizations in this country like NAMI, Mental Health America, Bring Change to Mind, and Catholic Charities that work tirelessly to affect change and I know many of these organizations have brilliant ideas on how to restructure and build up our mental health care system across the country. I know that NAMI is currently working to train first responders, schools, and any other organization who are open to it on mental illness and how to effectively respond to an individual in crisis. And they are providing this crucial service for free at this time but funding is needed to reach every individual who could utilize this indispensable training.
There are so many ways in which we can turn this epidemic around but it’s going to take a collaborative effort on the parts of multiple organizations, community members, and state representatives. It’s time to stop sweeping these issues under the rug and take comprehensive action.
I recognize in today’s culture of mass media, rigid thinking, a lack of compassion, and unwarranted criticism that puts those in the public eye under constant scrutiny it’s exceedingly difficult to take a stand for what’s right, for what one believes in. But one of the reasons this country was considered to be great in the first place and why other nations respected us as a leader and a trail blazer was because its citizens from all walks of life were not afraid to fight for equality, human rights, freedom of speech, and for those less fortunate to be treated with dignity and humanity. They are the morals in which this country was founded on.
Individuals with severe mental health challenges and those who care for them during times of crisis need a champion. We need someone to take up this vital issue which is plaguing the entire nation. If we are to ever improve the lives of people with mental health maladies and the people who care for them, action, not talk, is essential.