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.
I can totally relate to everything you have said. I have 2 little boys, 7 & 8 years old. My 8 year old is diagnosed ADHD, Mood disorder, ODD. My youngest is Autistic. My hands are full but you should see my heart! I will do anything it takes for them, but it is a roller coaster of emotions on good days & bad.ReplyDelete
Sometimes I think that the push by others to label the cause as "the parents" or "the whateverelseyouwanttoblame" is to somehow insultate themselves from it ever happening to THEM. Clearly, if the parents suck at parenting, well then... it can't happen to me and MY kids if I "do it right". Or if I don't vaccinate. Or we eat only organic. Or pray hard enough, or are a good enough person.ReplyDelete
WE somehow deserve it, and THEY don't.
It is a way to deny the truth... we ALL have the same risk to tragic, heartbreaking things to happen us and our kids, and there is no way to insultate ourselves from the sad, broken things in life. And those of us who know this understand how truly fragile we really all are.... and how strong we can be.
What a wonderful, thoughtful post! I wish I had seen the Oprah segment, and I also wish that she had focused more on the lack of services. Every time there's an incident like the shootings in Arizona, the spotlight shines on mental illness and the deficiencies of the mental health "system," but within a couple of weeks it's once again forgotten. Thank you for writing this.ReplyDelete
Terrific and sobering post -- you are an important advocate, obviously, and I do hope that your message is heard, that you share it with others and that we, in turn, can raise our voices as well.ReplyDelete
I am right there with you - I have three children with mental illnesses (Asperger's, Bipolar, and Anxiety Disorder).ReplyDelete
I'd like to speak to the demonic possession section of your post. I actually do believe that demonic possession is possible. However, not in the case of mental illness. They are two separate issues, completely. I knew a psychiatric nurse who worked in adult inpatient. She, also, understood the difference. She said there were only a few people with obvious demonic possession whom she had seen during her career, and it was "obviously different" in presentation.
As a Christian myself, I certainly do not agree with the stance that some churches take, "You must have done something wrong - or your ancestors or parents sinned, to make this (insert mental illness) occur. Or, "If you just pray in the right way, or hard enough, or have enough people praying for you, it will go away." My husband's friend, who has Bipolar I Disorder was told these things by a church, he went off his meds, ended up in jail and court. That was real helpful (tongue in cheek), huh?
So, please, if you're reading this and you are a Christian, please understand what mental illness really is, and please do pray for the person with mental illness, child or adult, and for their families and support systems. And, by all means, pray for the "system" to wake up!
I also was pleased with the Oprah program until the end. My daughter is now 28, so I know what can happen after it seems that cognitive therapy works. The illness in life has its ups and downs. One of the hallmarks is that something that works today doesn't always work tomorrow. Medication is usually essential to recovery. I actually felt that the mother in the program now believes that her son may be fine. I hope so for her sake. But I actually think the child is in a peaceful period, and things will get more difficult when he is a teen. Unfortunately, I've found that periods of progress and peace are followed by terrible times even as the child becomes an adult. That's why it's bipolar. Nice job on your blog.ReplyDelete
I was so moved by this article that i cried. I am a 45 year old grandmother and custodial parent of a 10 year old with BIpolar, Depression, Adhd, Reactive attachment Disorder and a Mood Disorder not otherwise specified. I missed the show due to other obligations but now wish I had been able to watch. My grandson is on round 2 of intense therapy in a hospital designed for children with mental illness there is some hope. Just not enough here as we live in a small community and resources are limited. Way to go will be keeping up with this one for sure.ReplyDelete
I cried when I read this. I have been dealing with the same things with my 15 year old son for so long now. From my experience, it doesn't get any better concerning services/support. In fact, it has progressed to my son being taken away from me. He has been on probation for 2 years, out of school for just as long. He has the most uninterested probation officer I've ever seen. The last time I saw my son, was back in December 2010. He was in court for running away from fostercare to come home. [seperation anxiety in kindergarten, also] His probation officer said in the hallway before court, "I JUST WANT HIM TO GO!' So they sent him to the other side of the state in a residential behavioral rehabilitation program. Every day, that he's away nothing is ok in my life. I've spent years, advocating for him on every level...meetings, lawyers, court...His future is at stake. He's never been away from home until all of this. I just wanted him to have some sort of education. Oregon will take your child. They wont help you in any way. They deal with mental illness in children by sending them away. I couldn't have been more involved with everything to do with my son. How sad, now his education is the least of anyone elses concern.ReplyDelete
Some parents have complaints about the show. Sensory Processing Disorder or SPD is a neurological disorder, NOT a mental illness and does not cause rages.ReplyDelete