The vicious cycle of our mental health crisis

Published on 23 March 2022 at 20:15

I understand that many people will have different perspectives on what I am about to discuss.  The image above shows my son's arm with the words "dam you". He was discharged from an inpatient facility and given the label "stable." He walked out in pure filth with this writing on his arms describing how he was feeling about himself. There were obvious signs of neglect on their part; I just do not understand how this appears stable to anyone for a young child. He was clearly unstable based on the appearance of his arms, filth on his face, clothing stains, the smell of the items returned home, and his mood immediately after walking out.


This was the day that Mr. I attempted suicide again within 30 minutes of picking him up. I had to sit on his lap from Milwaukee to home (5 hours through the night) because my child wanted to die and expressed his despair. He continued to try to jump out of the moving vehicle. He attempted to pound his head against the car window while screaming, "I want to die, no one will help me, medications are not helping me." The inpatient facilities from which he had just walked out refused to admit him to another location. They claimed there were not any beds available.  I was then told I could take him back to the ER and repeat the process. So this appears to be another ER waiting 5-8 hours for a bed before driving across the state with a suicidal child. There are no transportation or assistance options. This is completely up to the caregiver.  However, even after all of this waiting, we could still end up with no bed and have to drive 5 hours home. Without assistance, a family crisis can quickly escalate into a terrifying situation. This can become a 24-hour ordeal for families in crisis. 


We were simply too exhausted. The crisis has advanced far beyond crisis, and there is nothing. There is no help available; you must figure it out on your own. Many families are stuck with a safety risk for the child, caregivers, or siblings. However, forcing a family to sit for hours on end in an ER after being in crisis for days/weeks and being deprived of sleep, followed by driving the x-amount of hours across the state to return home, is also unacceptable. Consider this: if you have a family in crisis who is already feeling like they are on their last string, where do you think all these hoops will lead them?


I am not sure why Mr. I was released today, but I was told that "he was not the type of child to be in this type of facility".  The previous year, he was diagnosed with Bipolar Disorder by a mental health facility and an inpatient hospital. Unfortunately, I may never know what really happened at this facility. This is the nightmare of many parents and caregivers; we beg for help for our children, but the systems in place continue to fail them or traumatize them. 


During the crisis, Mr. I was admitted for a variety of reasons. He had aggressive, agitated, assaultive, depressed, hopeless, impaired concentration, impulsive, manic symptoms, mood swings, psychological trauma, self-harm, sleep disturbances, and suicidal thoughts. This was January 2020, when I released my first video (a shorter version of which can be found on my home page) to ask for help or be heard. I received a lot of encouragement, as well as a few shaming comments from mothers. This hurt.  I quickly realized I was not as ready for the full disclosure of our difficulties as I am now.  There was an obvious need for it, but I was afraid and allowed the cyberbullies to get to me. So, here I am hitting PUBLISH on this post that makes my son, and our family very vulnerable, we all agree, even Mr. I, that this is a subject that needs to be heard.  I strongly believe that in order for you to see the true nature of a real little boy, Mr. I, who was suffering from his condition and crying out for help, we must share our most vulnerable moments. It is time to discuss the things that make us uncomfortable.


We were in crisis from the age of eight and lived there for nearly four years. Things were tough before that, but we had no idea where our lives were taking us. Every day, I worried about my child's safety and that of my entire family. Many people are unaware of how difficult it is to diagnose children's brain disorders. This feels like you are fighting a medical world full of doctors who refuse to accept the fact that children, like adults, suffer greatly. I know I keep saying it, but so much of the world has no idea! This life quickly becomes isolated. 


If you do get a diagnosis, it is like mom and dad playing doctor at home with some very powerful medications and no medical education. How can we tell if it is truly working? If it is not, we will be back in crisis as we feel the eggshells on our feet. Because you have no idea what you are doing, our home suddenly becomes the prevention of rage and anger, as well as a quick downward spiral. The child spins out of control. Not because they want to, but because their mental health is deteriorating and medications are exacerbating their symptoms. In our case, every time we tried a new medication, our home would gradually calm down before the next roller coaster began, but we were still learning about the symptoms of Bipolar and Autism Spectrum Disorder. The two together were quite confusing. No one taught us; I took the initiative to learn about my child's symptoms. It is difficult to play doctor. This is terrifying and traumatic by itself. This is a huge amount of weight to carry. We were constantly left thinking, "Great! This one worked." Looking back, this was happening at the age of five while on stimulants.  This is where longer-term evaluations, holding insurance accountable for crises, perhaps MORE hospitals or transition facilities, overnight crisis respite care with intensive therapy for the family unit as a whole, so that children are not sent home, or families are not waiting hours/days for availability, can begin to address this challenge. Children's bodies react differently to medications, and at times my son wanted to rip his skin off. His mind was not clear. He would say things that no mother wants to hear. I was shocked by the changes in my child. He could not sit still. I began to lose my child. I was grieving. I was fearful. I was terrified that I would not win this battle. I was alone. I knew no one who understood what our family was going through. 


As for the large number of children who never figure out what is going on with them, they are left untreated and picked up by the juvenile system when they are no longer stable or able to live at home. Later, they become state property until they reach adulthood, or the guardians are bullied by the CPS to collect their child after a brief stay in treatment. What do families do when they cannot afford to treat a child with severe disorders and are concerned about their child's safety in their home with the other children? This is an ongoing fight! Statistically, the rest is downhill from there, and these children never had a chance for normalcy or calm in this world, leaving their caregivers to give up. Children grow up feeling abandoned and caregivers are left with guilt, shame, and an empty hole in their hearts because they couldn't give their children what they needed. The blame for failure.  This system is a failure. 


We had several inpatient mental health hospital stays and another failed attempt while traveling out of state (Minnesota), hoping for a different outcome. Within 5 minutes of our visit, this wonderful doctor attempted to change Mr. I's diagnosis and medications after quickly reviewing his medical records. In 5 minutes, he wanted to alter the history of his medical records! He informed me that my son has autism and that children cannot be on the autism spectrum while also having bipolar disorder.  He gave me a new prescription to change his medications and sent me on my way. This was a wake-up call for me; our mental health system is deficient not only in Wisconsin, but across the country. Advocacy is a MUST. Families with low incomes or who live in small towns are the most vulnerable. Children with severe brain disorders are mistreated and not recognized.  They are no longer lab rats, as they were before the 1960s, when we used to drop them off and abandon them from our families. They are now labeled as "bad kids," "ticking time bombs," "criminals," "school shooters," and "troublemakers," and they are unable to seek help. Does any of this sound familiar? They do for me.  Heck, if I am being honest, I admit I feared my son. I pleaded with his therapists, teachers, and doctors that something was wrong. I was a proactive mother. I informed the school, and we pulled him and began day treatment. I feared the possibilities because I didn't have a clue what was going on with my child at the time. Nobody would help, and every time we saw a new provider, everyone had new perspectives, titles, and medications to switch to. This was an extremely scary time! We felt completely alone, living in isolation. This is when families begin to shut down.  So this is why I am speaking out. This is frightening to hear and discuss, especially if this child is your own.


I understand you are tired of telling your story to family, friends, and providers, but the truth is you are not telling it to the people who need to hear it the most! You think you are alone, but you aren't. Help me organize a rally of mothers to be heard! I understand that the story has exhausted you, but mental health is not being recognized in our children because we are not discussing the fearful and deeply painful topics that must be addressed.  As a united family, we must speak our truth! 


The biggest red flag, in my opinion, is that NAMI studies published in 2020 show that 50% of all mental illnesses begin before the age of 14.  One in every six children will experience a mental health issue. Suicide is the second leading cause of death among people aged 10 to 34 years. 65 to 70 percent of children in juvenile detention are either undiagnosed or untreated for mental illnesses.   Check out the statistics yourselves in the NAMI National Alliance on Mental Illness. Can you imagine the bitterness that a child feels at this point? How are they expected to deal with this lack of treatment as adults? We have failed them repeatedly, and instead of assisting them, we cuff them and treat them as young criminals who do not receive proper treatment. We need to start asking ourselves tough questions. How can we stop failing our children's mental health?


What most people do not realize is that if children begin to feel like bad kids at a young age, they will adopt these labels for their behaviors. Instead of their behaviors being recognized as having a disorder of some form. Their internal frustrations begin with disciplinary issues, which lead them to believe they are never enough, understood, or heard. They will then begin to battle depression, in my son's case, bipolar disorder, which will worsen. This triggers a vicious cycle of suicidal and homicidal thoughts, escape, rage, anger, and aggression, among other things. Early treatment for any other illness improves outcomes, so why not with brain disorders? Why are we cuffing them instead of putting money in the right places to treat them and help their parents deal with the immediate crisis? 


Poverty-stricken families have fewer options and resources, and we lack the financial means to place our children in longer-term medication stabilization facilities. Let alone the financial means to hire attorneys to represent our children. Our juvenile detention facility provides a respite from the chaos for the less fortunate children, but yet another innocent young child is traumatized as a result. Children who fall between the cracks feel helpless. They may struggle with suicidal ideation, homicide, misery, humiliation, expressing rage, and aggression toward family members, but the list is far from complete. 


Many families try and try again, eventually giving up when they reach the point of despair. Caregivers are forced to say their final goodbyes when the court system takes their child away, no matter how hard they try.  The safety of the family and the child requires the removal of the child, or we are forced to abandon their child because they cannot afford to provide medical care. This was my fight. I refused to sign my parental rights away. I was upset that this option was even mentioned to me. I am not going to spend my son's entire life fighting to save him or his future only to abandon him.  I can not tell you how many times I was told, even by medical facilities, that another option I had was not to pick up my son from hospital. Abandonment...which would result in Child Protective Services removing my child from me for "neglect." I could not! I would not! I mean, if neglect was my preferred option, why would I fight to save my child from himself? This is totally messed up!  My struggle was not over, but I can understand why many families give up. This is not the fight we were meant to be having for our children. This is not right. THIS IS NOT RIGHT! They are children suffering from an unseen disorder.  It is an endless circle. You ask why we have so many "school shooters" or "death by suicide," and we blame guns or parents, but NO ONE PUT ENOUGH HEAT ON OUR MENTAL HEALTH SYSTEM TO CHANGE IT SO THAT CHILDREN IN CRISIS WHO NEED HELP CAN GET IT! Crisis management is broken. There is nothing immediate. There is no help; it is a minute-by-minute process of a caregiver remaining on constant alert day in and day out, with no shift breaks, fighting to save their child while walking on eggshells without the resources required.


Now that Mr. I is stable, his mind and body have had time to slow down and process, and I am no longer afraid of my son.  I never expected to see the other side of this journey.   The words "once upon a time" were among the most difficult for me to say. I feared my son's capabilities while he was emotionally and mentally unstable and there was no in-the-moment help for a crisis when we needed it most. This was a highly isolating experience. 


I cried many tears in front of our local officers, who were extremely supportive. I understand that in some places, kindness, compassion, and understanding are not commonplace. I had a terrible experience in Milwaukee with an officer who told me, "You do not want officers from this location picking up your child with a mental health condition." What a frightening thought. Mr. I gained a team with ongoing support from CCS and CLTS, Rolling Hills Equine, Northwest Journey Counseling & Guidance Clinic, Owens Equine Therapy, and Roots and Branches Counseling Therapy, to name a few, as well as the fight and survival instinct in me to keep pushing through. While our family in crisis felt there was no immediate help, I am confident in our long-term (years) programs and support. Our entire family of seven has been able to heal and grow. We are finally feeling the effects of all our hard work. It just took years of suffering in crisis to get from point A to point B.  Mr. I has now learned how to express these intense emotions and become aware of the changes in his body as his illness progresses. He has learned the coping skills required to reintegrate into this world, as he was before his life was taken away. His school has finally met his needs, and he is having an amazing year! His medication cocktail is perfect, thanks to a Psychiatric Mental Health Nurse Practitioner who understands our lives so well. We lucked out. However, all of these resources would have been beneficial before we were in crisis, when he was younger. The resources required were difficult to obtain. Our family fell through several cracks, and many people were unaware of these resources during our crisis. Even doctors did not know where to send us. My cries for help were unheard. I found help on my own.  I hope that my journey will help others find their own resources.