First let me say that I have received hundreds of emails since “Born Schizophrenic” aired last week on Discovery Health as part of “Psych Week.” Several emails refer to me or my family in the third person, probably because the writer assumes that given the media contacts at the bottom of my website page that I have somebody vetting my email. I don’t. It all comes straight to me. I read every single email I get, but due to time constraints I can only respond to those who write to me sharing their own experiences with a child or other mentally ill family member. So if you sent me an email sharing your own experience, or the similarities between your child and Jani, or asking me for help, I promise I will respond. It may take me several weeks, but I will respond. I also have to respond to emails in order of importance. One of the things that has surprised me the most is that I now get emails from people, both parents of mentally ill children and mentally ill individuals themselves, who are in crisis. I am not a trained psychologist or therapist, but I can’t ignore such emails. Today, for example, I got an email from a teenage girl who told me that she has been diagnosed with depression but that she also hears voices. She told me that the only reason she was even emailing me was because she was too stoned at that time to censor herself. Of course, I immediately wrote back from my Blackberry, despite Jani pulling on my shirt, wanting me to pay attention to Wednesday the Rat, telling this girl to tell her doctor the truth about what she is experiencing and, failing that, to take herself to the nearest ER and tell them. Will she reply? I doubt it. I have gotten emails like this before and I never get a response back. My point is that if you email me asking for help, I am going to try and help you. Despite the media attention Jani has gotten, we have no more resources than anybody else out there dealing with mental illness. Even after the LA Times, Oprah, 20/20, and now Discovery Health, nothing has really changed for us, except that Jani occasionally gets recognized in public by complete strangers. But we didn’t do this to get help. By the time our story became public, we already knew there was no help out there. We haven’t told our story publicly to gain help or find a solution. We did it to get the word out, to bring attention to a problem that exists, a problem that is much larger than one child or one family.
Fame only matters if you do something with it.
With each media appearance, what we have gained is not money or help or cures or answers. What we have gained is other families and other mentally ill children. With each new round of public attention, we find more families out there who are going through the same thing we are. And rather than simply commiserating, I have attempted to gather them together, both to provide support to each other but also as a political force. With each television or print appearance, it has become more and more clear that Jani is not unique or an aberration. Rather, she is the tip of an iceberg of families and children suffering in silence. Jani is the 10% of the iceberg you can see above the water. I want to turn the iceberg over and show the world the other 90%. Because the more of us there are, the less we can be ignored. Now, when you go into your next IEP, you know there are (based on the current membership in our online support group) nearly one hundred other families behind you. When you get yet another visit from CPS, you know there are a hundred other families who have gotten those same visits. And when everyone is telling you to send your child away, you will know that there are one hundred families who have faced that same choice.
I say this so you will know that they can’t bully you anymore. They can’t make you feel like a bad parent. They can’t pressure you. They can’t deny you what you need for your child or children. Slowly, the failures of the child mental health system in America is being revealed publicly. Slowly, the façade, the lie, that your child is unique is being destroyed. Slowly, we are forcing society to understand that our children are not “bad kids.” Slowly we are forcing them to understand our children have a disease. And slowly we are forcing them to see that our children, no matter how disturbed or violent, have worth. Slowly, we are forcing the world to see our children inside their behavior.
We gave up on getting “help” from the mental health system long before our story ever became public. We accepted that there was no help out there, that no one was going to save us.
So we decided to do it ourselves. We decided to find every family like ours and put them together, creating a new system, a working system, that would rise up through the cracks of the broken mental health system.
The Jani Foundation is underway. We already have a Board, an executive director, division directors, and a mission statement: The mission of the Jani Foundation is to provide services to families and their children who suffer from mental illness and autism through a network of parents, volunteers, and staff to provide in-home assistance, educational and therapeutical programs, and respite care that assists families in staying together as a family unit in a safe and supportive environment. Now we are working on specific goals. Soon a website will be up. Soon we will incorporate and file for non-profit status. Soon we will begin recruiting. If you want to help, I welcome you, but know what you are getting into. Jani’s intern program ended because of safety risks to the interns (which was also the same reason Wraparound wouldn’t help us). Well, if you can’t stand the heat, get out of the kitchen. If you aren’t willing to put your personal safety on the line to help mentally ill children and adolescents, you are in the wrong field. This is a war and you are enlisting to fight against childhood mental illnesses. If you are not willing to put yourself in harm’s way to help these children, then don’t go into this field.
America, I refuse to accept your mental health system for children. So Susan and I are building our own, with our own network of psychiatrists, psychologists, therapists, and staff.
And part of that means trying to help people in crisis who email me, even if have no concrete way of helping right now. By God I am going to try.
I got many emails asking me if things are “better” now. They weren’t sure when the Discovery Health special was shot, so they were hoping that things might have improved. The special was shot in February and March of this year, so it is very recent. I understand the question. It is a natural human desire to hope that difficult stories end well. We all hope for better. I don’t begrudge anyone who asks me that.
The answer is “It depends on how you define ‘better.’” Jani is no more functional than she was when the special was shot. In some ways she is less functional. She is becoming less and less functional in school, even though she only goes an hour a day and it is after all the other kids have gone. She refuses to do any work at all, no matter what the reward is. That one hour used to be a break for me but now I have to go with her every day or she won’t go at all. She is less stable with Bodhi. Thank God we have the two apartments. Family dinners at Bodhi’s apartment were always challenging, but now they are almost impossible. The ONLY reason we are functioning at all and are able to keep Jani with us and out of residential is because we have two apartments, one for each child. I don’t know if Jani’s deterioration is because of the loss of most of her interns or if it is just the disease continuing its assault upon her life. She is still listening to us, but only barely. Jani is only calm at night when she is tucked into her bed in her apartment and whichever parent is with her that night is reading to her. That is the only time “they” let her go. Every other moment is a constant fight against whatever she is seeing or hearing.
But she is better in one regard: she has started to ask for her medication when she feels she needs it. She is still telling us when the rats, cats, or numbers are around. We just have to listen.
Today, we were all at Bodhi’s swim lesson. Before Bodhi goes into the pool with his instructor, he has to get a shower. He is terrified of showers. The moment I turned it on, he grabbed onto me with surprising force. He clung to me so tightly. He was crying, he was scared, and he refused to let go. It took everything I had to pry him loose enough to get his body into the shower. Once free, he was screaming his head off, his hands grasping for me, determined to get back to me. And once he was back, his hands closed around my neck in a vice grip, so tightly that he could not have been pulled free without probably breaking his arms.
And it felt wonderful.
He was holding onto me for life itself, and I loved it. I loved the force of his grip. I loved the pressure of his head against mine. It felt like he was literally trying to crawl into me if he could. I have never had another human body that close to me. It was a naked need, with nothing to conceal it. But it was a need I could meet simply by holding him back.
And then it hit me why it felt so wonderful.
Because I never had that with Jani.
Jani has never hung onto me as if her life depended on it. She has never clutched at me, desperate for me to save her from the outside world. She has never found comfort in my arms.
Never even when she was going into the hospital.
Never even when she was a baby.
Don’t get me wrong. This doesn’t mean Jani doesn’t need me. Quite the opposite. Her need for me is far stronger than Bodhi’s physical grip. Her need is a black hole that I cannot fill, no matter how hard I try. Her need is a need I can never completely meet, though I try every minute of every day.
For me, the worst part of mental illness is not the occasional violence. It is the way it isolates those who suffer from it, building a wall around them that prevents them from grabbing onto those that love them like Bodhi grabbed onto me today. They desperately want to reach out, they desperately want to be held, but they can’t articulate it. Instead, their behavior is their cry for help. And unlike Bodhi’s wail of fear, this cry often falls on deaf ears.
Very few people on earth can understand that a punch to the face can be a cry for help as keen as a baby’s wail for its mother.
If Jani could ever grab onto me like Bodhi did today, if she could grab onto anyone like that, then I would know that the power of her illness had been broken. As long as she cannot, as long as she cannot, when in fear, reach for those she knows love her, then I know the illness is still alive and well and still building that wall around her.
Being a parent to a mentally ill child means spending your life taking down each new brick the illness puts up. And the illness can build the wall faster than you can take it down. But you have to keep trying. And it takes everything you have, but you have to keep trying, keep trying to see your child’s face and who they really are, ripping down bricks, desperately trying to keep your child in view, desperately trying to keep the wall from swallowing them up.