How Systems Have Failed My Son this Mother’s Day
By Jennifer Hoff
The most difficult part of having our young, mentally-ill, adult son locked up in solitary confident in California State Prison for months at a time is not the emotional and mental pain his father, little brothers and I experience as a result of him losing, “in person” contact privileges again or other punishments he might be subjected to that are analogous with such a placement. It is not the overwhelming sadness that arises when you realize you can’t remember your child’s smell because you have not been allowed to hug him for almost a year, nor the missing of his sweet voice during a phone call. It is not the daily emotional turmoil of having horrific mental images flash by the minds eye as an incessant reminder of his dire situation. It is not even that he was allowed to suffer mentally for over three years, denied the very psychiatric medications that he was prescribed from age 12 to quell his frenetic thinking and allow him to process his interactions with the world in a safe and more humane manner.
As a mother, what is most difficult is that his situation is the predictable outcome of our abysmal system of criminalizing those who “act out” despite lacking the cognitive capacity to do otherwise. We saw this coming for over 15 years and there was absolutely nothing we could do to prevent our son from being punished for his disability and being sucked into the revolving door of the criminal justice system once he turned 18.
We sought out help for Matthew very early (age 5) as his mental health symptoms began interferring with him attending public schools. We had access to private doctors and therapists, had the resources to pay for treatment and the wherewithal to request special education services from our school district. We had the stamina to navigate, for years, a broken mental health system. A system in which no one who is “in charge” seems to be held accountable to help these sick children; nor informs you (the parents) that every provider at the case-planning meetings are hiding their ball under the table to effectively and covertly play the game of “pass the buck” shuffle. Ultimately, those “in charge” denied services for my son as long as possible to avoid costs and save the bottom line.…. For years, Matthew’s father and I paid out of pocket to send him to a clinical day program run by a team of doctors at a highly respected university. The clinical-day program was eventually exchanged for a dozen failed special educational public school placements, which again failed our son. Ultimately, we were faced with all roads leading to the need for a intensive (and expensive) locked facility; an incredibly difficult decision had to be made.
As Matthew’s needs increased, the willingness of our county agencies to provide for them diminished. Eventually, only legal action proved effective in forcing our school district and county behavioral health departments to meet their legal obligations of providing appropriate educational and psychiatric services for our disabled boy.
The worst part of this journey has been the nausea that comes with knowing my son’s experience is the norm; that this outcome is one of many predictable tragic end points for individuals like Matthew who “don’t respond” to the current protocol of medications and talk therapy. He has found his peer group in prison. The overwhelming majority of his neighbors are young men who also suffer from debilitating psychosis, paranoia and delusions, and who have lived in their awful set of circumstances from before they were even able to legally drive a car.
Most of the prisoners Matthew has met have previously been in the foster and/or juvenile “justice” cog from the young age of 10. They have been labeled as “troubled” and “delinquent”, yet denied medications or treatment or even basic therapeutic services before the preventable tragedy occurs that drove them into the criminal justice system. These young venerable young people do not stand a chance once they are “in trouble with the law” because necessary mental health interventions will be withheld and they will inevitably be funneled into youth or adult prisons… many before they even hit puberty.
If you had asked me when Matthew was younger and still at home, cycling his way through ineffective treatments, how I was doing, I would have most likely burst into tears; for navigating the pediatric side of this nightmare was an incomprehensible, demoralizing experience that each year left its marks on my psyche and spirit. The pain of watching your child be discarded like trash by the very agencies tasked with his care is not easily explained to even the closest friends. Today when folks ask me the same question my response is less emotional but rarely is it a complete answer….. for even folks who actually might know our story, or who work in the “field of mental health” find it hard to grasp the reality that our system isn’t filled with “cracks” for these young people to fall into. Rather, to everyone’s surprise and dismay, instead of cracks, there is a looming cliff that we systematically push young people off of when they age into adulthood.
Nowadays my response to the “how are you doing” question, yields a filtered mantra of “pretty good considering…” or “well I am still here…” . I make it a point to share our story with anyone and everyone who will listen; not to be a source of pain for people, but rather to leverage the pain I feel into becoming the motivation they need to jump into action and become part of the solutions.
This is our modern day human rights crisis…throwing away children into a churning system for the past 15-20 years has not only been a costly, failed, social experiment of being “tough on crime,” but more egregiously, it has stolen the futures of thousands of young folks, by answering their cries of help with a lock and key. Most “troubled youth” are not born that way…they are generally created out of years of neglect, abuse, misdiagnosis, and failed treatment; and then severely penalized when they act out with the very behaviors that textbooks outline-- the step by step progression from victim to offender. We know these facts, yet somehow the past few decades have been marked with an all out war against the treatment of childhood offenders and a refusal to allow for the degree of cognitive functioning the individual possessed to be used as a method of defense aimed at rehabilitation over incarceration.
We have criminalized behaviors psychiatrists say are “normal” for an immature, traumatized or sick brains…we know that some brains are different and lack capacity to fully function, yet our leaders have allowed generations of children to be swallowed into the pit of the criminal justice system to be forgotten.
I have hope though, and I know we are not alone. I know some families experience this same journey but with an even more tragic outcome. I am grateful for the work advocates and non-profits are doing both in the mental health reform and juvenile justice fields. These broken systems will not self-correct and it is up to impacted individuals and families to demand they change for the better.
I have perspective, our story’s tragic ending didn’t create catastrophic collateral damage to our child or to our community. For this, we know were are the lucky ones.
Last Mother’s Day when I went to see my son, he was able to visit me in person for a change. We really enjoyed each other, holding hands and hugging…being face to face, looking in the same beautiful auburn eyes that peered up at me when he was a baby swaddled in my arms. Now, despite the new homemade tattoos he had someone ink on his beautiful face, (because it seemed like a good idea “at the time”…he says, “sorry mom”) he is still my boy deserving of help.
Jennifer Hoff is a concrned mom and juvenile justice advocate.