KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Hai there, KosAbility peeps!After the recent, horrific tragedy in Sandy Hook, Americans are contemplating how to stop this seemingly unceasing stream of similar killings. As with most of life’s serious problems, in my opinion, there are no simple answers. Complicated problems require complex, multi-faceted solutions. The sick phenomenon of these types of killings must be peeled like an onion, layer by layer, and each contributing issue must be addressed in a holistic approach. Mental illness has a role in the discussion and search for answers.
As always, I hope this evening finds you in the finest physical, emotional, and mental health possible on the downslope of a very good day. RoCali is our most excellent diarist tonight, and as Kelley said, she has a "helluva story to tell". I found it riveting and so relevant to many of the current events of recent months (years?), and an excellent perspective from which to approach the "How could this have happened and what do we do about it?" discussions that are taking place all over the country.
I know that it had to be hard for RoCali to write about this, as well as live through such extended tensions and trials with tenacity and grace, so with that in mind, let's give her a virtual round of applause for sharing both the clarity of her experiences and the quality of her prose.
One question I hear often in the aftermath of these incidents is: “Why didn’t anyone intervene sooner when the shooter clearly had issues?” I am not a part of the family at issue here and so cannot tell you why that didn’t occur in this case. I do know my family’s experience with mental illness and the mental health system was not an anomaly and what we endured and encountered may give some understanding and insight with regards to this question generally.
I will disclose right now that although these events occurred years ago, the experience was so painful that the emotions are fairly raw to this day. I have never discussed the matter in any depth with anyone outside of the involved parties until today. Due to privacy concerns on this sensitive topic, I am changing the names of the individuals I will discuss here. I apologize in advance for the length of this entry. I have abbreviated the discussion as much as possible without, I hope, losing the essential elements of what transpired over those years. While I may have had some initial qualms about writing this, a Kossack I have long held in high esteem explained to me that she believed this might be helpful. I most sincerely hope that she is correct.
In 1977, I was eagerly expecting my first child. I was thrilled at the thought of becoming a mother and had high hopes and aspirations. My own childhood in a dysfunctional family had been less than idyllic and I had lofty dreams of providing my child with something better; a world of love, security, safety, laughter, and consistency. When I was five months pregnant, an event occurred that would shatter those hopes. I was assaulted and badly beaten. Later, my son’s doctors would decide that the injury to his brain that altered our lives occurred at that time. When I recovered, I filed for divorce.
A few months later, my son was born. “Jon” was significantly overdue at birth and was severely jaundiced. He remained in the hospital for a few weeks in an incubator and I was able to visit with him, but not hold him during that time. Some years later, it was suggested that an attachment disorder may have been seeded during this time.
When I finally was able to bring Jon home, he was a fidgety baby, almost as if he did not want to be held. He was resistant to eating, slept fitfully and sporadically, cried almost unceasingly and was losing weight. In time, there would be a diagnosis of failure to thrive. Sometimes, Jon would run high fevers followed by seizures on occasion. My mother mentioned more than once that “something was not right,” which did not alleviate either my growing concern or my exhaustion. The repeated trips to the doctor were just beginning.
I followed all the doctor’s suggestions and we were able to get Jon to eat, to a degree. He never ate much and remained thin, in the lower percentiles in that regard. During the first year, the incessant crying slowly eased somewhat, although he would remain vulnerable to frequent bouts of uncontrolled crying for some years to come. I was not seriously worried as yet, some babies cry more than others. There were several small things that each, taken individually, did not seem outside of the norm. That was a pattern that lasted for some time. Any single event or behavior examined by itself really didn’t seem that big of a deal. It was only as the years passed and all the events and behaviors were viewed in totality that the perspective began to change.
At age two, Jon was quite slender with a sweet smile, but without warning or cause could become tearful, even angry. He continued to sleep very little and only in small spurts, when he was too exhausted to continue. It was more like losing consciousness than sleeping and he would waken abruptly, in a manic state. His coordination was extremely poor, even for a two year old, but already it was clear that he was very intelligent. Some years later, multiple attempts were made to determine his IQ and the testers repeatedly complained they felt he was toying with them. Although they came to a different score after each test, he never scored lower than 140.
While Jon was sweet for the most part, he was easily frustrated beyond reason and could be quite destructive. He became frustrated one day and smashed a toy into my face, breaking my nose and cracking my cheek up into the orbit of my eye. He still was very resistant to eating, was constantly in motion, and disliked being held. I also recognized that any change whatsoever in routine appeared to serve as a trigger for an emotional outburst and period of acting out that could last for hours or days. My first response would have been “terrible twos,” and yet, everything was unnaturally amplified. Many of his reactions were those of a two year old, magnified by a level of ten or greater. In public, I started hearing mutters that “something’s not right with that kid” and “that’s not normal.” My unease began to grow.
When Jon was three, I married again. Sam swore he would love Jon like his own and at first he made every effort to treat him as his own child. Because of the abuse in my previous marriage, Jon never knew his biological father and I was relieved that he would have that vacancy filled. As Jon grew, however, those unsettling issues and behaviors grew larger as well. He was so bright though and that year he began participating in a preschool group. Jon was already reading children’s books and doing well with simple addition and subtraction and I believed the interaction with other children and structured play setting would be good for him. Almost immediately, the children recognized Jon as being different and his resulting emotional outbursts only worsened that divide. This was the year we took Jon off milk products, as the pediatrician felt that might have a positive effect.
Jon’s fourth year was consumed with trying various diets and ruling out allergies as his sleeping, eating, and emotional issues grew increasingly pronounced. He was diagnosed with ADHD that year. When tired, he would run in circles screaming until he collapsed, “slept” for 45 minutes or so, and then another manic episode would begin. He was still a very sweet boy the overwhelming majority of the time, but without warning he could become furious for no apparent reason and would become destructive with toys and objects. Jon’s responses to physical contact, such as hugs, became increasingly hostile. He struggled with coordination issues and remained small for his age, and very thin. Also apparent was his very high level of intelligence and his love for animals, with which he was always extremely gentle. I had found an abused black kitten dumped in the trash and Jon adored Roxie. He would spend hours holding her, stroking her. She slept on his bed every night and, at the age of 24, would die as she slept in his arms. His devotion and tenderness with animals was unparalleled and still is.
During Jon’s fifth year, my daughter Rae was born and he clearly doted on her. Jon had started kindergarten that year though and the stress on him was really showing. Being contained in a classroom with a large number of children was difficult for him and his degrading inability to control his emotions lead to frequent “melt downs,” which exacerbated his already strained relationship to his classmates. By now, most adults clearly had labeled Jon as an extremely sweet but “very difficult” child, mostly due to his emotional lability. Because of his unpredictable outbursts and the growing intensity of those episodes, he had to be handled with great care. Unfortunately, it wasn’t long before Sam’s favoritism toward Rae was obvious. She was a sweet, happy, easy-going child with none of her brother’s challenges; whereas the caution that one had to take in any dealing with Jon was becoming stressful and exhausting. Our pediatrician kindly explained that Jon needed to see a psychiatrist and fortunately, one of the most highly respected doctors in the field practiced in our area and a referral quickly was placed.
That first visit with Dr. Smith was hopeful. After an initial evaluation, he felt that Jon’s problems could be handled with some therapy and minor changes. He stressed Jon’s intelligence and said that would work to our advantage. The diagnosis was severe ADHD at that time and Dr. Smith felt one good step would be low doses of medication. Jon was going days at a stretch without sleep and that had to change. Ritalin works opposite in young hyperactive brains and actually slows the patient down. We discussed potential side effects, the required monitoring, risks and potential benefits and agreed it would be worth a try. Jon’s “differences” were causing increasing conflicts with other children and, in turn, he was becoming more withdrawn and sullen between outbursts. My sweet boy with the sunny smile had faded away and in his place was an obviously unhappy boy, thin, pale, with darkened hollows around his face and he was showing signs of a flattened affect. The first thin roots of fearful desperation had begun to plant themselves in my heart and so I agreed to the Ritalin.
Over the next few months, Jon showed some signs of improvement. He actually began sleeping a few hours each night!! He also started showing some glimmers of an appetite. The weekly therapy sessions with the psychiatrist were something he almost appeared to enjoy, at least, as much as he enjoyed anything. The only thing that seemed to create a feeling even approximating pleasure for Jon was a computer. He loved the computer and was already writing programs. Things seemed to plateau there for a time and while I was nervous that he wasn’t showing marked improvement, at least things weren’t getting worse and he was sleeping some, which was a relief.
Around his seventh birthday, Jon had a small growth spurt. As he was becoming more obviously small for his age, I was not displeased. Unfortunately, the doses of Ritalin became less effective and we began a period of increasing the dosage to keep pace with the changes of growth and yet, we couldn’t seem to get ahead of the curve and he was clearly in an emotional decline. School had become incredibly stressful for him and his isolation from the other students was taking a toll. He tried participating in sports, but with his coordination issues, he played badly. Once, I saw a teammate walk up to him and spit on him, telling him how lousy he played and how useless he was. Jon didn’t take that well.
The outbursts became more frequent, more intense and longer in duration and his behavior became increasingly unpredictable. Interactions with him started to take on the feel of handling nitro, one wrong move was all it would take. Jon became less communicative and more withdrawn between the episodes of hysterics and rage. The stress and pressure we were all feeling became almost palpable. One could somehow feel the screws slowly tightening down and the pressure building, yet there was no release valve to be found.
I cannot remember exactly when Jon’s diagnosis was expanded to include bipolar disorder. As things progressed, additions were made from time to time. Looking back, my memories start to blur a bit as the stress and intensity increased. I know it was around this time that we realized that what I had believed was likely a normal childhood imaginary friend was actually a case of hallucinating. His “turn fast friends” that had seemed so benign at first now became a cause of fear for him, as they had become threatening in nature. Sometimes, the quiet of the house would suddenly be pierced by screams of terror, as he saw them coming through the window to get him, to “take him.” In addition, he was frequently having prolonged, severe nosebleeds whenever he became stressed and almost everything made him stressed.
We rarely went anywhere at that point except to therapy sessions. Groups of people unsettled Jon tremendously and left him angry, tense, emotionally on edge for days after an encounter. Even family gatherings became too much to handle and slowly the entire family became increasingly isolated. For one thing, you could not take the chance of someone bumping into him, as any physical contact made him lose all self-control. By this time, anti-depressants had been added to the regimen and therapy sessions were increased to two times a week and then three times a week. We tired of covering and patching holes in the walls of Jon’s room, so I purchased an inflatable clown with a weighted bottom that he could punch and “bop” when he felt a need to release aggression. The clown did not survive for long and soon I threw away the shredded remnants.
Jon’s verbal skills, always limited, began to decrease. Communication with him markedly waned and his responses were primarily grunts, nods, head-shakes, and a few mumblings. Jon spent most of his time at home in his room, either reading voraciously or on the computer. My constant attempts to engage him in interaction were increasingly futile. Sam and I were in conflict over Jon. Sam felt I was too soft and I felt he did not sufficiently understand and was too controlling. Sam was always placing restrictions on Jon and taking away his favorite things, in an effort to force him into more compliant behavior. I worked days and Sam worked 24 hour shifts, often home alone with the children while I was at the office. The relationship between Sam and Jon deteriorated badly, with Sam constantly trying to maintain authoritarian control and Jon retreating further into withdrawal.
At work, I was frequently receiving calls from Jon’s school because he sustained yet another injury. During these years, I took him to the ER for stitches so often that I began taking him to different facilities because I feared someone would think I was hurting him. He was so different, the other kids were relentless in their harassment of him and he would come home either despondent or enraged almost daily. It took longer and longer to try to calm him as time went on. My attempts to engage his teachers and school staff to assist were rebuffed repeatedly.
On several occasions when Jon and Rae had been left alone for just a moment, (even I had to use the restroom from time to time,) Rae mysteriously was injured. Each time, Jon said she had fallen and she nodded in agreement with wide eyes. I began sending them each to their rooms if I had to tend to nature, keeping them separated, and Rae’s split lips and bloody noses stopped happening. Jon’s bloody noses continued, however, when he was anxious, which was often. For a while, we were all puzzled by their origin, until one day I saw him striking himself repeatedly in the face.
Over the next couple of years, the situation continued to degrade. I was engaged in a battle with the school district trying to get Jon placed in special education, which they were loath to do since academically, my bright boy was excelling. Even after he exploded and started striking some classmates for the offense of stepping on worms, the school district insisted he did not need an environment with more supervision, despite Dr. Smith’s recommendation and my pleas. Jon’s destructive rages became more frightening. When I realized he had been sneaking out at night, alarms were placed on his door and window. That was after I found him in the garage at 3:00 a.m., hacking objects with a large knife from the kitchen. All sharp objects were locked away after that.
Jon’s reaction to any physical contact became more shocking and frightening. When I tried to hug my little boy, he would react violently, flailing, striking with his fists and feet, he bit me, vomited on me, urinated on me and screamed. I had emotionally moved well beyond concern and was wandering through the wasteland of abject fear, heightened by guilt. After all, I was his mother and he was so young, the only explanation must be that I had already screwed him up royally. Dr. Smith had increased Jon’s medications and was aiding in the battle with an uncooperative school district to place Jon in a more appropriate educational setting and we had increased his weekly therapy sessions also. Dr. Smith was beginning to infer that we might have to become more aggressive if Jon did not begin to respond soon.
One day, Jon’s teacher called and she was crying. As the children were sitting, he leaped from his chair, ran to another child a few desks away, pulled him to the ground, and began choking him. She called for help and it took three adults to pull him off. For such a small boy, he became surprisingly strong when he was agitated. The teacher demanded the school remove Jon from her class and I was grateful, as I had feared an injury to someone was inevitable.
The district finally placed him in an SED class, Seriously Emotionally Disturbed. In this setting, there were two adults to each student and they would also provide the speech therapy that Jon needed. Although Jon’s outbursts did not lessen in frequency or intensity, at least they were occurring in a safer setting. When episodes were particularly bad and Jon needed to be restrained, I was informed. I never knew what the next moment would bring and I was sleeping poorly. We couldn’t really relax even for a moment, because his behavior was so volatile and unpredictable. Things stayed very tense between the school and I. Three of their staff cornered me one day and asked what I was trying to do. They said Jon really didn’t have severe problems. I was astounded and everything was taking on a surreal feeling.
Dr. Smith tried to place Jon in a special residential school for children with neurological handicaps, but after reviewing his case and performing a one-week evaluation, they refused to take him because of the severity of his condition. They said they didn’t have sufficient security to accommodate a child with his level of aggression and the risk of violence. My fear was now strongly tinged with a growing desperation. Dr. Smith felt Jon would continue to degrade and it was critical to find a placement, soon.
Jon’s list of medications continued to grow and we had added Haldol to the mix. We had become acquainted with many of the drugs of the day, including Pamelor, Thorazine, drugs for the enuresis, a long list of medications and increasingly high doses. Some medications we tried and discarded, only to try others in their place. Dr. Smith was seeing him three mornings a week but said a more controlled environment was needed quickly. We had reached the point where Jon’s medication dosages could not be raised any higher, without endangering his life. Dr. Smith believed that full hospitalization was required to prevent further degradation of Jon’s mental health. Although it broke my heart, I was so frightened for my son I immediately embraced the idea. If only it had been that easy.
Trying to find a qualified psychiatric hospital with a pediatric unit and an available bed was about as simple as locating the Holy Grail. There was only one facility in our part of the country that was even up to the task. Every other facility we looked at frankly admitted that they could not take a pediatric patient with such severe issues. The single hospital with sufficient services was about a 90 minute drive south. They had 12 beds in the pediatric unit and it was a full lock-down hospital with the peds ward fully self-contained. The children took their meals, worked with a special education teacher, slept, bathed, and had therapy all within that single unit, which was comprised of a great room, a nurse’s station, and a hallway. The hallway was lined with three bedrooms on each side (with no doors,) a bathroom, and the “quiet room,” a padded isolation room with viewing windows so the patient could be observed. The quiet room was a last resort for out of control patients engaging in dangerous self-destructive or violent behavior and was used in addition to sedation. As patients showed improvement, they could work up to privileges, like playing in the small contained yard at the rear of the unit, visiting the petting zoo on the grounds, swimming, tennis, and even hikes on an island at the rear of the property by the river. The hospital had a wonderful reputation … and a 2 ½ year waiting list for a bed.
If we could hold out for 2 ½ more years, I still had no clue how we would pay for the treatment. Mental health coverage is not generous, even on the best of plans. Further, the years of outpatient treatment and expensive medications had already whittled away pretty well at Jon’s lifetime cap. Of course, we had no other options and Dr. Smith had Jon placed on the waiting list.
We kept Jon heavily medicated, lived in fear and with alarms, and somehow managed to limp along for a few months. By then, I was becoming depressed, exhausted, isolated, concerned for my daughter’s emotional and physical health, and my marriage was crumbling. It felt like we were living in a war zone, always on alert and ready for the worst. I began to fear for my own sanity and even fleetingly wondered if death would not be preferable to this, for Jon and me. Jon was now 10 and Rae was 5.
One evening, Rae came to me while Jon was in his room, which had become his preferred place as he withdrew even further. She was afraid. He told her he would kill her if she said anything. He had done something inappropriate to her that no one was to know. As she was tearfully talking, telling me how he had touched her, I heard the alarm go off and knew his door had opened. I still don’t know where he got the knife, as we had locked up everything that could be used as a weapon. As he raced down the hall towards us, my daughter screamed. I grabbed her, pulled her inside the bedroom with me, slammed the door and locked it. I heard Jon raging, striking the door and it seemed it went on for hours, but I doubt it was more than thirty minutes. When his rage was spent, I slipped into the hall and he was lying there, not responding to my voice.
Later, I called my parents who drove through the night. They took Jon home with them because I could not risk leaving him under the same roof as his sister even one more night. When my husband got off work that morning, we drove to the hospital. Oddly I don’t remember her title or position, but we met with a kind woman, a woman of some import there, and everything spilled out. Ultimately, she told us to forget the wait list, because we obviously couldn’t wait, and said if we had Jon there the next day, she would have a bed for him. I had to admit to her, we wouldn’t be able to pay for it. He was running out of insurance benefits and the cost was $1,000 per day, just for the bed. Tests, therapy, medication… add all that up and it would be impossible.
She took pity on us. She said they had a limited charitable fund that was reserved for only the most severe and neediest cases. If we admitted him under our insurance, signed him up for Medi-Cal when we hit the insurance cap (it took less than a month to hit the lifetime cap) and, while he was there, paid them every month the $700 we were paying out-of-pocket for his medications and therapy, she would apply the remaining balance to the charitable account. I have never felt such overwhelming relief and gratitude before or since.
My son was 10 years and 7 months old when we admitted him. A large male nurse took him from us as soon as we arrived that morning. The process took eight hours and there was a parade of complicated forms discussing every potential eventuality, even electro shock therapy and padded rooms. After, we were escorted to his unit to say goodbye before we left. For the next several weeks, there would be no contact with him, not even a phone call during his initial evaluation period of six weeks. Later, I found out that before many days passed, he was placed on a suicide watch and in those first weeks, he became well-acquainted with the quiet room. To enter the unit, we pushed a buzzer. After a few moments, another large male nurse unlocked the door, we entered, and the door locked behind us. The contents of my purse were examined, as well as the contents of our pockets. We were informed of the list of restricted items that could never be brought into the unit. A male nurse brought Jon to me and, of course, I could not even hug him goodbye, nor brush his hair from away from the eyes he would not lift to meet my gaze. I told him how much I loved him, how much I would miss him, and that I would see him again as soon as I could. Moments later, we were outside the door listening to the locks slam home. It was then that the flood of tears I had held back all day let loose.
Those first weeks, Jon was taken off all medication, tests were run, his diagnosis was updated, and new medications began. Each day he received intensive individual therapy in a highly structured and secure setting, a group therapy session each afternoon, and, after a time, weekly family therapy sessions began also. Jon had bipolar disorder, with paranoid and schizoid tendencies, borderline personality disorder, acute ADD, oppositional defiance disorder, attachment disorder, and frankly, I cannot even remember the rest, although it was repeatedly said that he had some characteristics of autism, but was not autistic. The doctors concurred with Dr. Smith that Jon’s condition was severe and cautioned that it was unlikely he would ever be well enough to leave institutional care.
We were told that the injury to Jon’s fetal brain was the likely culprit as to origin of the problem. They said that sometimes in these circumstances, other areas of the brain develop to compensate, likely explaining his high intelligence. They also explained that, due to the brain injury, Jon did not process information correctly and when he was touched lightly, as in a hug, it actually caused him physical pain; however, hard physical contact, like hitting himself in the face until his nose bled, did not hurt him. They suspected some of his physical assaults on others may have been because he had been touched, felt he was being attacked and became defensive. The confusion that arose in that little boy’s mind because he processed information so contrary to others and the social divide that developed caused him extreme stress and emotional pain, taking him into depression and other mental health issues, spiraling ever deeper until he finally received the intervention and intensive therapy he needed. In addition to dealing with his emotional problems through therapy, the staff also focused on helping Jon adapt to and compensate for his neurological and processing issues.
In time, we would learn a bit about the other children in the unit, interacting with them as we began weekly visits and, of course, on holidays. Christmas in a pediatric psychiatric unit is a unique experience. The youngest child was five, the oldest was twelve. Each child there had a history of violent behavior, some even attempted murder, and almost all had a history of some type of physical or sexual abuse inflicted upon them, some of it horrific as their visible scars attested to. We were not privy to all the details, obviously, but learned enough that it affected me deeply. My passion for children’s’ advocacy was born there and has continued in the years since.
I did make sure that Rae got her own sessions with Dr. Smith while Jon was away. After all she had been through, Dr. Smith said she was very well-adjusted, mature beyond her years, and he had no concerns about her mental health, thankfully. She said that she knew Jon loved her, but he was ill and it was only the illness that tried to hurt her. She just wanted him to get well and come home. She missed her big brother.
Jon would stay in that hospital for a year and made real strides in improving his condition. When released, he went to another, lesser facility for another year, a residential school that specialized in neurological handicaps; a facility that had refused to take him two years before. There, he continued therapy and even participated in a gymnastics program for disabled kids, which helped somewhat with the coordination issues. Today, this program is no longer in existence either, although they still offer the one-week evaluation for diagnostic purposes. When he completed that year, he finally came home and returned to outpatient therapy, two years after he left.
Today, Jon is an adult. We had a period when he turned 18 and didn’t want to take his medication, but with therapy, we got through it. There were other bumps along the way, but never any days as dark as those we’d already been through. Now he works and excels in a technical field, owns a lovely home and is recently engaged to a marvelous young woman, who has two precious small children. Jon is excited at becoming a father; earnest, eager, and determined to be the best father he can be. He still struggles a bit with verbal and interpersonal communication skills and is uncomfortable with displays of emotion, but he functions well and has made enormous progress over the years. He has told me that he is grateful for that hospitalization when he was a child, that he felt truly safe and even happy there, for the first time, and he knows his life is a much better place for it.
During those dark years, I would see on the news where some disturbed person with a troubled history would suddenly kill. I harbored the terrible fear that, without proper treatment, my own son might one day do the unthinkable. I was desperate to prevent that. I begged, I pleaded, I fought the school district and my insurance company, I tried any and every tactic that occurred to me, anything to save my child and maybe even those around him. Everyone had advice, of course, like the school board member who told me he would be fine if I wasn’t a working mom and stayed home with him. Or the teachers and bus driver who said he just needed more discipline and a “butt whoopin” to be okay. (It still amazes me how many people erroneously believe that “discipline” can overcome a mental health issue.) Or even members of my family who said if I just prayed more and took him to church, it would be fine. But I was focused on a single goal, to get Jon the professional help he needed to achieve a level of mental health and a quality of life while protecting both my children.
We were a family with two working parents and great medical insurance and still couldn’t do what needed to be done to get help for our son. My husband had been in EMS for years and climbed fairly high in the fire department and I was a paralegal then, at one of the largest, most prestigious firms in the area. We made a good wage, had excellent insurance and yet, our resources were nowhere near enough to deal with what was before us. I had been attending night classes at the local law school, but that was untenable with what was happening at home, so I left. Some years later, I would return and finally earn my law degree, which was after the divorce. Each member of our family, immediate and extended, had their lives, their perspectives, altered by the events of those years. While it was Jon that had the condition and diagnosis, we each lived it and were affected by it, in countless ways.
Somehow, after all that, we managed to move forward, after crawling back from the edge of the abyss. I have never attempted to fool myself though, if we had not been so lucky as to meet with the charitable, kind woman at the hospital that day, we never would have had the resources to save Jon. His life would have been a horror and may have created a horror for someone else too. I fully expected that he would end up institutionalized, in prison, or dead. I had so much guilt already as a mother, that this happened to Jon, that I was inadequate to help him, so many things; but if he had gone untreated and the unthinkable had happened, I would have lost my mind.
I can never forget that there were only 12 beds and while we got lucky and my Jon got help, far too many sons and daughters were not that fortunate. That pediatric unit isn’t there anymore and none was built to take its place. Mental health insurance coverage is as bad or worse than it was then and is often utterly inadequate to cover the basics when treating a serious mental health condition. That hospital’s act of charity saved my son’s life, I have no doubt. Yet I cannot help but wonder how many others, then and now, are on the brink of the abyss with no one, no act of charity, to pull them back. In those days, I often said that if my son had a more conventional illness, a heart defect or diabetes; perhaps there would have been more help, but he had the absolute misfortune to incur a malady that carried great social stigma.
So, when you hear someone ask “why didn’t his mother get him help before this?” try to remember that maybe, just maybe, she tried, and there was no help to get.
Until we, as a nation, do better in addressing mental illness and providing the proper resources for screening, support, diagnosis and treatment, we are going to continue to pay a very high price for that neglect.