Usually, I write something brand new for Hopeful Parents each month. For the past few days, though, I haven't been able to get Thursday's Oprah show out of my mind. This is the post I wrote the evening after that show.
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If you live in an age of social media, and if the most powerful woman in television does a show about something you are experiencing in your own life, you will get a nice, long look at exactly what the world thinks of you.
Which is.......shall we say.......enlightening.
Oprah featured Zach, a young boy with mental illness, and his family on her show today. I was nervous before the show because television has not historically been awesome with portrayals of families affected by mental illness. Dr. Phil did quite the hatchet job on Jen and Brad Wohlenberg in 2009 with a show that did nothing but expand the stigma and judgment of people with mental illness and their parents. I didn't have high hopes.
In general, though, Oprah did alright. She had enough humility not to question the existence of Zach's illness, nor its severity, which we parents of kids with mental illness expect as a matter of course. She let Zach and his mother, Laurie, say what they wanted to say, and I very much appreciated that Oprah spoke to Zach with respect.
Oprah was describing things he had done, most notably wielding a knife and threatening to kill his mom. I (ever desperate for something with which to reinforce my denial) said to Brian, "Wow, I'm glad Carter has never been that violent!"
Brian frowned at me and said, "Of course he has. He just tried to kill himself instead of trying to kill you."
I really hate the sound of the air leaking out of my pretty purple denial-balloon.
Oprah and Laurie talked about other things, things that loom large in the lives of my family and millions like us: shame, isolation, fear, guilt. Day-to-day life is painful and difficult, sometimes dangerous. All of that is true.
What is also true, and even more important with respect to public awareness, is lack of services. At every level, in almost every community of the United States, the mental health system is lacking.
Not lacking a little. There are no "gaps" in our system because there is barely a system at all.
That is what we want you to know. That is what we want you to remember, to write letters about, to scream from the rooftops.
We're too busy holding our kids and our families together to write as many letters as need to be written. We're too busy trying to force a profoundly broken medical system to meet the needs of our loved ones. We're too busy taking care of suicidal and/or homicidal and/or acutely psychotic kids at home because there are no hospital beds for them. We're too busy homeschooling our kids because the public schools can't or won't meet their needs. We're too busy trying to help our healthy kids have the most normal lives possible. We're too busy grieving the lives we thought we and our children would have.
Sadly, Oprah missed her opportunity to go beyond the shocking aspects of pediatric mental illness to what Zach and kids like him really need, like more pediatric psychiatrists, more hospital beds, more residential and day treatment programs, and better public school options for kids with mental health issues. We need respite care and more high-quality research with non-ambiguous funding sources.
Just like every family facing a serious chronic illness, our needs are significant. Until we decide, collectively, that it is not OK to send children with mental illness and their families home to deal with things the best they can, we're stuck cobbling things together the best we can.
Try to imagine that this situation exists for some other problem. What if the state you live in closed 90% of its neonatal intensive care units and started telling most parents of premature babies, "Gosh, sorry, we're all out of incubators. Good luck!"
We parents of kids with mental illness live with this constant sense that we are being judged or, at the very least, disbelieved. The mental health care system does nothing but reinforce this. When your child is in crisis and you call out for help and the person on the phone makes you an appointment for six months in the future, what can you think except that the whole world believes the problem is not real?
Social media tells me that that sense of being judged is accurate. Also? It can be pretty damn funny.
I spent a little time cruising the comments about the show at Oprah's site, and a little more time reading tweets about the show. I found a pretty awesome display of ridiculousness. Here is my summary of the proposed causes of pediatric mental illness:
- Demonic possession
- Poor diet
- Vaccine injury
- Heavy metal toxicity
- Multiple chemical sensitivities
- Poor discipline or lack of discipline (or as Brian and I refer to it, a serious prophylactic beatings deficiency) (I'm always left wondering: is the problem that I beat my child (abuse) or that I don't beat him enough (poor discipline)? The judgers need to make a decision.)
The most popular among these is demonic possession. Show me a blogger who writes about a child with mental illness who has never gotten an email that says, "Your child doesn't need a psychiatrist. He needs a priest!" and I'll show you a blogger who is just starting out.
In fact, the demonic possession emails and comments are amusing or, at worst, a nuisance. Ditto people who need to beat a drum about heavy metal toxicity, chemical sensitivities, and other fringe theories.
The abuse and trauma stuff, though? That shit can hurt, especially when it comes from friends, family, or medical or education professionals. Brian and I consider ourselves incredibly fortunate because Carter is the youngest of four children, and our three older children are mentally healthy, with only the most ordinary of emotional issues. We have often used Jacob, Abbie, and Spencer like badges, proof that, as imperfect as we are, we aren't totally corrupt. Still, it hurts to know that we are viewed with suspicion by so many people.
I do get it. I understand that when people watch Zach on Oprah's show, or read about Carter and other children with serious mental illness, it seems unlikely, even outrageous. How can it be possible, that a child would explode in anger over nothing? Why don't the parents don't just put a stop to it? For goodness sake, take away his privileges until he pulls his shit together!
It's easier to believe that we let ordinary behaviors of childhood get out of control. We allowed tantrums to turn into dangerous rages. We encouraged imaginary play until it became psychosis. We indulged fears until they morphed into crippling anxiety. At every stage, we refused to discipline, guide, control, or punish our children such that they learned to think, feel, and behave normally.
That is equivalent to punishing a child with cancer for growing a tumor or sending a child with muscular dystrophy to bed early because he won't stop falling down.
Incidentally, demons don't cause cancer or muscular dystrophy, either.
And finally, Oprah closed the show with a long conversation about positive and negative energy, and how Zach manages his symptoms by focusing on the positive. I'm at a bit of a loss about this. On the one hand, we work very hard with Carter on a set of skills that he can use to regulate his feelings. An extremely simplified (because of his age) form of cognitive-behavioral therapy, it's a key component of our treatment strategy.
On the other hand, I'm troubled by what I see as excessive focus on that aspect of Zach's treatment. A person who is seriously mentally ill cannot trick or talk him or herself out of that illness or its symptoms. I take issue with Oprah's extended focus on positive energy and white light, giving short shrift to the many other essential aspects of effective treatment, and the nearly insurmountable barriers to accessing that treatment.
Mental illnesses are complex and require multi-faceted treatments. Not everyone who is mentally ill can achieve a "normal" life. Extended conversations about the power of positive thinking and the like serve only to minimize the tragedy that mental illness can be, and give people who want to deny the seriousness of mental illness a little more ammunition.
From where I'm sitting, the deniers don't need any more ammunition.
Adrienne blogs about family life, depression, and pediatric mental illness at No Points for Style.