For all of his struggles, and in spite of the amount of suffering that exists in his day-to-day life, Carter is among the very most fortunate of the seriously mentally ill children in the US. His prognosis is vastly improved for exactly one reason: money. My family has made an enormous investment in Carter, enabling me to stay at home so that Carter is with me during all his non-school hours, and paying for his tuition to the tiny private school where he finally feels safe enough to learn.
Those two things are, along with an excellent psychiatrist and a wonderful therapist, the things that stand between Carter and the nightmarish experiences of 2009 and early 2010. The relative stability we have enjoyed since then would not be possible without that money. I don’t know any kids whose illness is of the depth and severity of Carter’s who have stayed out of the hospital as long as he has.
This relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive adulthood, because his brain is now wiring around things like feeling capable at school; going to the grocery store and having pleasant interactions with strangers; and the myriad small successes of daily life, like helping around the house and taking good care of our family dogs. There are a thousand things that a typically-developing child of his age does that he cannot, but in 2009, there were months in a row when he couldn’t go to any store and I ran all the errands in the evenings after Brian came home from work. He couldn’t be around other children without my attentive supervision, lest someone get hurt. Our dogs spent most of their days in our sunroom for their safety. Many days, I didn’t even feel safe to take him in the car by myself and Brian had to take time off of work to ride along to appointments.
Because of my family’s investment, Carter has a chance to become literate. He may be able to hold a job someday. His odds of incarceration, long-term institutionalization, and homelessness are decreased.
Put more simply: Carter will probably be cheaper as an adult because of this investment on the front end of his life. He might not cost much more than the price of a monthly Social Security payment and Medicaid for his outpatient psychiatric care. There are no guarantees, and he may very well cost a mountain of money in the form of a prison cell or a hospital bed or the constant bookings into county jail that define the lives of thousands of people who are mentally ill, but his chance for a good life is improved. Vastly.
You know who doesn’t have all the advantages that Carter enjoys? Virtually every child in the US with serious mental illness.
Let’s start with education, with the caveat that most of the people we worked with when Carter was still in public school were knocking themselves out to provide him with what he needed to be successful. The system, though, threw up roadblocks until it was almost slapstick. High-level special education is expensive, and schools do not want to provide a level of special education that is even one tiny increment higher than what is absolutely necessary. Further, the law does not require schools to help children reach their full potential. Education law is mostly written in mushy language that leaves a great deal up to the people filling in the boxes on the forms, but the keywords are appropriate and adequate, not best or even good.
The result of all this was that Carter’s school provided more services in tiny increments, then waited for Carter to fail before adding more services. Around and around we went, with Carter required to fail. And fail. And fail. We knew what he needed. He could not function in a regular education classroom, but there was no way to leapfrog to an appropriate setting. Laws that were originally intended to keep schools from locking students with disabilities in dismal classrooms where all their talent and potential was ignored (a noble cause, to be sure), like least restrictive environment requirements gave the school the out they needed to resist providing an environment in which he could learn. The results were nearly catastrophic.
Carter screamed all the way to school, every single day, and when we arrived there, a teacher or an aide had to pry him off of me and I walked away while he shrieked for me, which would all be horrible enough, except that the terror was with him constantly. Most days, he cried and screamed during all the hours he was at school, spending good chunks of his day in the nurse’s office. If he was lucky, he would throw up, which was the only thing that inspired anyone at the school to call me. Otherwise, they would let him cry, insisting occasionally (as I heard from the hall one day) that he “Stop it right this minute! There is nothing wrong with you!”, determined to force him to deal with being at school. I would pick him up from school and within an hour, he was down with a migraine. By dinner, he would be finished with the blinding pain and the vomiting in time to start crying about his fear of school the next day. He couldn’t sleep at night because of his anxiety, and when I woke him in the morning he cried nonstop, with occasional breaks to vomit.
I recorded this audio in September, 2009 by hanging my phone from a camera strap to the back of my seat, in front of Carter. I would have edited it down to the high points for you, but I really can’t bear to work with it. You can barely hear me murmuring in the background because the phone was behind me, and the audio gets choppy a few times because Carter kicked the phone. I feel horribly guilty listening to this recording, knowing that I forced Carter to endure this level of suffering for nearly three weeks. Everyone at the school was insisting that I bring him; that he be on time; that he stay until the final bell; that he learn to handle being away from me during the day. Every instinct was screeching no no stop don’t do it but I couldn’t listen to myself.
Truth be told, there’s a secret that many of us whose kids have mental, emotional, and social problems keep: so many people tell us, in ways subtle and blatant, that our kids are just fine if only we would stop making such a fuss, that we believe it a tiny bit. Some part of me thought, in spite of all the evidence to the contrary, that Carter could be forced to be OK, that I was babying him, that he just had to learn to suck it up. This is the emotional equivalent of teaching a child to swim by dropping him into the heart of the ocean, mid-hurricane, but the notion is so prevalent, I couldn’t shut it out. I wasn’t confident enough to protect him.
At the end of the recording, you can hear Carter begin to calm down. That’s because I made a decision, as I drove, that I would take him home, and I never tried to take him back to that school again. I had no plan; we had nothing else in place, and no idea if there even was any other option for us. I just knew he couldn’t do it, so I quit my job, bought a book about homeschooling, and prayed for a solution.
All that fall and winter, I drove Carter to therapy and psychiatry appointments and played learning games with him in hopes that he wouldn’t forget too much of what little he had learned in school. My husband, Brian, missed work often after Carter tried to throw himself out the door while we were going 65 miles an hour in the inside lane of I-40 and I was afraid to drive alone with him. We slept in shifts when Carter was so severely insomniac that he slept only on alternate nights. We kept him out of the hospital by the skin of our teeth by turning door locks around so that we could lock ourselves in a stripped-down “safe” room with him and learning to do restraints. We were bruised, beaten, bitten, and battered. We tried one medicine after another (after another after anotherafteranotherafteranother) and slowly, traumatically, came to terms with the fact that Carter didn’t have just an anxiety disorder, or an unusually bad case of ADHD, or some other well-known childhood emotional malady, but something bigger.
Imagine, if you will, what might have happened had I been unable to quit my job? If I had been a single parent? If there were other issues in our family (addiction, for instance) that made Brian and I unable to care for Carter in such an intensive way? The cost of enabling me to stay home with him is small compared to the costs associated with the hospitalization that he would have required if my job had been essential to our economic survival, but if not for my family, I could not have quit.
The only thing parents of kids with mental illness rely on more than the education system is the health care system. Those of us whose kids are seriously ill can’t keep our kids alive without it, and even if we do manage to see to their survival, their quality of life is abysmal unless they receive appropriate medication and therapies. This is exactly the same for us as it is for parents whose kids have leukemia, congenital heart defects, or diabetes. The difference is, no one tells a parent whose child is in a medical crisis, “Sorry; there are no beds in the state. Take her home and give her Benadryl.”
I wish I was making that up, but I’ve heard that story from dozens of families, most recently last week. Mental illness can be fatal. People with mental illness may die or be permanently injured or maimed by their disease. But somehow, when the presenting complaint is in the brain instead of the liver or heart, we as a culture have decided that it’s OK to turn people away.
Private companies don’t have much incentive to maintain facilities for mentally ill patients. Inpatient psychiatric beds aren’t nearly as profitable as medical and surgical beds, and psychiatric patients usually don’t require the kinds of tests that bring in the big bucks for hospitals. When I was in the hospital for pancreatitis last summer, I had three CAT scans and 2 MRIs over the course of 5 days. A psychiatric patient in the same bed wouldn’t have generated nearly as much money for the hospital.
When hospitals send children away, parents are forced to absorb that deficit of care with their own efforts, doing things that no parent should have to do. I have restrained Carter as many as 3-4 hours per day while he begged me to kill him, to call the police to come kill him, or to take him to a tall building so he could throw himself off. This, in any group of parents whose children have mental illness, is a totally ordinary story. We do what we have to do because there is no one else to do it. No one asks parents of children with cancer to infuse chemotherapy at home. If there were no beds available in the entire state for a child in heart failure and the hospital sent that child home with instructions to administer Benadryl and go to bed, TV crews and outraged senators would be all over the situation in no time at all, yet it happens every day to families facing diseases of the brain and there is barely a ripple in the public consciousness.
Unless, of course, there is a mass shooting, at which point people everywhere start to ask, “Why didn’t someone do something? Why didn’t his mother/father/friends/teachers call for help? How could they just let this happen?”, and those of us deep in the mental health trenches laugh bitterly because you don’t know. You don’t understand. Maybe this or that shooter’s mother/father/friends/teachers begged and pleaded for help. Maybe someone sent them home from the hospital because there were no beds. Family members of people with mental illness ask for help, and our loved ones are placed on waiting lists. We try to prove that our children really are on the brink of killing themselves or someone else, because only under those criteria is anyone ever hospitalized in a psychiatric unit.
You know, if there are beds.
Mental illnesses are not static. They are progressive, and the longer a person with mental illness goes without adequate treatment, the sicker he or she becomes. Every time we are sent home to deal with things in the best way we can, we lose a little more of our children. They slip a little further from themselves, a little further from their potential, a little further from the families who love them. Just like a child with diabetes will get a little bit sicker and suffer a little more organ damage with every day her blood sugar is not adequately managed, a child with mental illness gets sicker without treatment, but no one would expect a diabetic child and her family to go home and wait months to see an endocrinologist. Here in New Mexico, the average wait for a pediatric psychiatrist is 4-6 months, if you live in Albuquerque. Children in rural areas wait much longer. In the US today, there are approximately 7,500 psychiatrists who treat children and adolescents, while the need is for a number closer to 20,000.
Where are the news vans and senators now?
The right is trumpeting again about an “entitlement crisis,” insisting that we must stop wasteful spending on social programs. Here’s the problem with that: just because you cut a program doesn’t mean you’ve erased the problem the program was created to ease. We can cut right down to the bare bones, and we’ll still have to pay someone to drive the dead wagons.
If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization. The largest provider of mental health care services in the world is the US correctional system, and many people with serious mental illness only receive treatment for their conditions when they are incarcerated. People who could live successful lives with appropriate supports instead become homeless, end their lives, or use illicit drugs to endure the relentless and unbearable symptoms of their illnesses between stints in jail.
Almost no family has all the resources necessary to meet the needs of a person with serious mental illness so we have to do it together, with social programs. We’re are paying, and we’re paying big, but we’re spending our money on the wrong end. My insurance company resists paying for treatment that Carter needs now, but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids like Carter require, but we sure as hell want cops to keep homeless people from hanging around the entrances to our favorite restaurants.
Almost all of us invest time and money into toothbrushes and regular dental care because we know that it’s cheaper and nicer than having rotten teeth falling out of our heads. We pay the people at Jiffy Lube to change our oil every 3,000 miles because we know it’s far less expensive than letting the engine seize. We hang smoke detectors in hour homes because we don’t want to be burned to death in the night. We have the good sense to recognize that some prevention in the beginning, even if it’s inconvenient and expensive, is almost always easier and cheaper than dealing with the disaster that will come later if we don’t.
Classrooms are cheaper than cops, trials, and prison cells. A hospital bed for a month at the beginning of a psychiatric crisis makes lots more sense than a jail cell for a year after a full psychotic break. This argument about whether or not to pay is nonsense; we are already paying, but we’re throwing our money down an immoral and inhumane suck hole. If the notions of morality and humanity don’t mean much to you, consider this: the return on our investment could be infinitely better.
We can do better than to toss some people aside like so much disposable waste. We can be better than we are now.