#Yourvoicematters
submission@mentalhealthplatform.com
Editor's note: The following was written by a father who wishes to remain anonymous, realizing his son’s privacy is not his to give away. The author may be contacted at justiceforourminds@gmail.com.
John has bipolar disorder. He's twelve years old. In a way, that anonymity is symbolic of the life John, his brothers and sisters, and mom and dad live in. Even people who know families in which a child suffers from bipolar, schizophrenia, ADHD, or other mental illness, have no inkling of the fatigue, the lost childhoods, the rages, the chronic hopelessness that we and families like ours live with day after day, week after week, year after year.
How to convey what life is like with nerves constantly frayed? When your child's moan causes every muscle in your body to tighten, because that moan might grow into a growl, and that growl into a rage that might last an hour or more?
How to convey what life is like when your child holds knives to his throat or tries to jump from your car, when he destroys the things that are most precious to him, when he attacks you and his siblings, when he does everything in his power to provoke you and then sobs uncontrollably when the episode has passed?
How to convey the sweat-drenched, mind-numbing horror of tightly holding your child as he thrashes about trying to get loose, to hurt you, to hurt his brother, his sister, himself, to destroy something, anything in a futile attempt to find a release from the torture inside his head?
How to convey the feelings of a brother or sister locked inside his or her room as their brother kicks and beats at the door? How to convey the damage done to these children, too? How to convey trying to hold a family together under such circumstances? How to convey getting only a rare glimpse every now and then of how sweet and considerate your child is when his medications are temporarily adjusted?
How to convey what it must be like not to have control of your own emotions? How to convey that the hell his family goes through is just a shadow of the hell he himself faces almost every waking hour? It shouldn't be this way. John shouldn't be neglected. If John had cancer, he wouldn't be deserted. He wouldn't be forgotten. If John had muscular dystrophy, he'd have a star-studded telethon raising money for research.If John had almost any other childhood malady, he wouldn't have to rely on drugs developed for other maladies and never tested on children.
It's been only in the past dozen or so years that science has started recognizing mental illness in children. It manifests itself so dramatically differently in children than adults that it is often difficult to diagnose. And only for the past five or six years has the diagnosis spread into the psychiatric mainstream. Even now, many psychologists and psychiatrists aren't educated enough or familiar enough with it to make an accurate diagnosis.
We searched seven years for an answer to John's behaviour. We've been told to take him off milk, to put him on supplements, to spank him more, and to consider an exorcism. Finally—several psychologists, two psychiatrists, and a host of other paediatricians and medical specialists later—John was diagnosed as having bipolar syndrome, also known as manic depression. Even then, we were sceptical until reading "The Bipolar Child" by Demitri and Janice Papolos. It was as if the authors had been observing our lives through a peephole in the wall as they described the rages, the mood swings, the irritability that are symptoms of the disease.
For the past twenty-two months, we've sought the right combination of medications to bring John stability. Medications that bring with them a range of unpleasant and possibly fatal side effects such as pronounced drowsiness, dizziness, rapid weight gain, fatal rashes, and the possibility of increased suicidal tendencies, among others.
Three or four and often more medications are combined and then their levels adjusted and readjusted and other medications substituted until you strike on just the right cocktail, which might last for a couple of months before losing its effectiveness. And then the search continues.
It's little more than a guessing game as you try to hit a moving target. Unlike an adult, a child is still developing, his chemistry changing weekly, especially in adolescence. To say that the treatment of childhood mental illness is still in the dark ages wouldn't be much of an understatement, if an understatement at all.
It's not these children's fault; it's not their parents' fault. It's not a matter of discipline. It's not a matter of setting limits. You can take the world away from these children, throw any punishment at them, and it just doesn't matter. No more than children can keep cancer cells from multiplying within themselves, can they change the biology that causes their mental illness.
Since our son's diagnosis, we've tried to educate ourselves and to advocate for our child. But just as frustrating as finally having a diagnosis without a cure is trying to find the resources to help. The world of mental health support services is a hopelessly confusing hodgepodge of agencies and acronyms, made even more confusing over the past several years as the state has overhauled its system to pass responsibility for mental health care from the state to the community level.
Frustration doesn't begin to describe what it's like parenting a child with a mental illness and then trying to figure out the system and what, if any, help is available. It all takes so much energy. It takes money, too. Even with good insurance, there may be a dozen medication adjustments needed in just a couple of months, weekly psychiatric visits during crisis periods, appointments with therapists, hospitalizations, and out- of-home placement in group homes.
Our own middle-class life has sunk under the weight of it all. Should we sell our house? How destructive to the stability of our children's lives would it be if we moved from the school districts and friends they've always known? How will we ever have any hope of helping them with college? How will we ever have the time or energy to deal with any of it?
I can't quote you exact facts and figures on mental illness in America. Our family is overwhelmed just dealing with it. I know that not enough money, not enough attention, not enough concern is being shown. I know that just as I won't see an end to racial prejudice in my lifetime, I won't see an end to the stigma and neglect surrounding mental illness, either. My son shouldn't have to be ashamed of being sick. He shouldn't have to worry about being called "retard," "whacko," "nuts," "crazy," and all the other hurtful names kids, and their parents, use.
Somehow a dialogue must begin; somehow awareness must be raised. Somehow churches, civic organizations, corporations, individuals must say that this isn't right, how can we help? All our children, be they cancer or Katrina victims, deserve a childhood, deserve a future. Our children shouldn't have to be anonymous. We cannot let mental illness in either children or adults continue in its anonymity. Our humanity should not allow it.
Somehow a dialogue must begin, even if just in our small corner of the universe. But we cannot do it alone. We are tired. We are without hope. We need your help.