People who equate truth with fact are missing the point.

Oprah Takes On Pediatric Mental Illness

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:

  • Trauma
  • Demonic possession
  • Poor diet
  • Abuse
  • Vaccine injury
  • Allergies
  • 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.

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39 comments to Oprah Takes On Pediatric Mental Illness

  • This topic is so difficult to tackle and I’m glad that she tried.
    I think the more we all talk about our illnesses and struggles the more we can knock those barriers down. Even with our “wee” voices in the blog sphere…we have tremendous power through our words…we just need to use them
    Kimberly recently posted..Come Join Me At Postpartum Progress

  • CDG

    I sort of feel like Oprah needs to stick to what she’s good at.

    She needs to seek out all the parents with children like Zach, like Carter, bring them together, get them talking, find out what they truly need, and give it to them.

    You get top shelf health care and services! and
    You get top shelf health care and services! and
    YOU get top shelf health care and services! and
    YOU get top shelf health care and services!

    Because the thing is, it’s what she endorses that becomes successful. Her power is her opinion and what she puts her money behind. Pashminas, cars, watches, diamond earrings, authors.

    Think of the advocacy she could generate with the money spent giving away freaking televisions.

    That said, I am glad she at least treated Zach and his mom with respect.

    And I applaud your ability to read the comments and the tweets without losing your mind and blowing up a Walmart. People are scary.
    CDG recently posted..The Burberry Scarf

    • I was going to say I want you to be president, but then I thought better of that because duh, what we really need is you to be the next Oprah.

      Major bonus: you’d choose better authors. I only liked about 1/3 of the ones she chose. 😉

  • Liz

    It’s unfortunate, but we are pretty ignorant when it comes to the fragility of the brain. I never realized how easily the brain can become damaged from emotional trauma, head injury, illness, etc., until I read a couple of Dr. Daniel Amen’s books. Neither discipline nor behavior modification can change the over-active or under-active areas of the brain. The “devil made me do it” notion is also a primitive explanation that science has long since discredited.
    Liz recently posted..Five Reasons You Should Try an Asana

    • What amazes me is that there are so many people that think the brain CAN’T get broken. They don’t “believe in” mental illness, but they know that the spleen, liver, heart, and skin can be ill, right? Weird.

  • As always, you cut right to the heart of the matter. There aren’t enough services. I don’t know how much of that has to do with lack of understanding of pediatric mental illness. It’s sad kids and their families can’t get the help they need.

    I read your posts, Adrienne, and sometimes I don’t even know what to say. I can’t imagine. I truly can’t.

    We’ve been trying to get X speech therapy services. He’s qualified, but there’s a hold up with insurance. And that’s all he needs. Expressive speech help, and we’re sitting here waiting. He’s happy and healthy and fine. Sure, it’d be nice to get him the help, and it’s frustrating, but it’s not incredibly impactful upon our family, if that makes sense. I thought of you and all you go through trying to get help for Carter, a child who desperately needs the help and it breaks me heart. It shouldn’t be this hard. It just shouldn’t.

    • Thanks, Cheryl. That’s the bottom line, I think – it just shouldn’t be so hard, but Alex nailed it in her comment. It’s all about money, and procedures pay far more than other therapies.

  • […] This post was mentioned on Twitter by Adrienne Jones, Adrienne Jones. Adrienne Jones said: Alright, I know it's really late, but I finally finished writing about today's #Oprah. http://su.pr/1cF38o […]

  • paige

    I didn’t see the show, but you (as usual) are spot on. When our oldest became severely ill, we were whispered about and then people began to ask us flat out what WE had done to cause his condition. One of the most egregious offenders recently sought me out to ask for help because HER oldest was having similar symptoms to our son. She, however, had obviously done nothing to warrant her son’s hallucinations and overwhelming OCD/anxiety. Plus she didn’t want him to see a professional because the professional might not be of the same faith. Or worse…atheist.

    I asked her if she’d quiz the ER doctors treating her kid if he was bleeding out on a gurney. She got him to a psychiatrist and he’s doing much better. Thank goodness.

    My kids are brave about being open with their peers about mental illness and they challenge me to keep being open and honest with MY peers. We’ve made progress in breaking down the stereotypes, but it is heartbreaking to see how far we all have to go…

    • Paige, I love the story about asking that woman what she would do if her son was bleeding out on a gurney! People so easily confuse mental health and think it’s all about spirituality, or think that emotional/mental/behavioral problems can ONLY be caused by trauma. Which is ridiculous, and you’re right, we have a long, long way to go, but inch by inch, we’ll get there, if not in our lifetimes, then in our great-grandchildren’s lifetimes.

  • I’m always so torn by these shows now – having been put through the ringer, been edited down to a “quick fix” that lent no help whatsoever to our situation, I get frustrated when I see talk show hosts, even the almighty Oprah, try to tackle this subject. She wants to be Oprah still, and having seen her “Behind the Scenes” show now, I see that Oprah always gets her way, and she always wants to seem like she knows what she’s doing. I think that’s the hardest part of dealing with mental illness, right? We have to admit that we are pretty powerless – this thing is *huge*, especially when we are given virtually no tools against it and the systems of care are so tremendously broken that we’re basically fighting a monster with a plastic fork. Dr. Phil, Oprah, whomever, they don’t like to admit these things, so they like to come up with pithy little things like Emwaves and positive energy to sum up their story lines to make their audiences feel better, to make people feel safe. I’d like to see outrage myself – but that’s just me, deep in the trenches here, hoping that the next budget cut doesn’t wipe out the services my girls so desperately need altogether.
    Jennifer recently posted..Not Built for the Circus

    • Jennifer, I couldn’t agree more. I’ve written here again and again about that powerlessness. It’s anathema to most westerners (and people in the US, especially) to say, yes, we cannot beat this thing.

      And yes, I want outrage, too. And I want it from others, because like you, I’m way too damn busy over here, dealing with the illness to be lobbying congress. I have to keep my kid alive and that’s a full-time job.

  • CDG, you’ve hit the nail on the head! Oh, I’ve had to stop watching the Oprah who gives away the house, but doesn’t address the foundation.

    Actually I stopped when she was bragging once about never having gotten therapy moments after telling somebody to … get therapy.

    sigh.
    karen tsang recently posted..Of magical thinking

    • Yes, she’s always pushing people to get therapy when she’s never had any. What’s up with that, anyway? Very weird.

      • Oh! You mean it isn’t just me who noticed that!!! I loved her until she became weight obsessed, mostly because it was when I gave up dieting and food fussing that I lost enough weight to be healthy.

        So … I recommend therapy. For Oprah. Lots, and lots, and lots of PRIVATE therapy.
        karen tsang recently posted..The Plan B

  • I adore Oprah for her power of good…like CDG said, she wields tons of power. if she backs something or throws her brand behind someone? It gets out there. Shit, look at Obama!

    But I do wish that she would address the problem at its roots and not just “bring it to light”.

    I mean, that is a start…but now where is the follow up on getting these kids the help they need…and deserve?
    Katie recently posted..tiny reminder

    • Hah! So true! When Obama won the nomination, my dad kept saying there was no way he’d win, but I knew he was underestimating the power of the Oprah machine.

      And yeah, awareness of the illness itself is important, but it’s only a tiny first step. As much as I hate the judgment I get at every turn, I’d gladly accept it all and more in exchange for easy access to all the care that Carter needs.

  • Nicole

    Oprah did another episode that profiled a little girl with childhood schizophrenia. It aired sometime around Dec. 2009. I actually found that episode to be much more well done. It interviewed the family in their home. I’m not sure if you can track it down somehow, but it might be worth it.

    • Yes, that show was about Jani Schofield and her family. I agree; that show focused more on lack of access to quality care, probably because Michael (Jani’s dad) is a very outspoken critic of our current “system.”

  • You get top shelf health care and services!

    CDG–so very awsome!!!!

    I would LOVE to see Oprah do that.

    that is all
    AmyLynn recently posted..A letter to Legos

  • Well, I can tell you right now why no one will ever be told they are out of incubators. NICUs make money. Mental illness does not. Procedures are reimbursed better than anything by insurance, which is why every hospital wants a NICU but wants to close down their psych units. And pediatric mental illness is so under-researched and misunderstood that most doctors and hospital administrations aren’t comfortable with it. People can ignore it because, like you said, most of us are trapped in our homes with it anyway. Or people like to hear the juicy story but don’t want to do take action like fund centers. Or they like to tell us “it’s not so bad”
    Alex@LateEnough recently posted..I Love My Son- A Delightful Set Of Bad Quality Photographs

    • Sigh. Yes, I guess I knew that, about the procedures making more money and I conveniently forgot.

      One more reason we so urgently need single-payer healthcare. We can’t expect a profit-driven system to be motivated by humanitarian concerns.

      Ugh.

  • Kelly

    “What amazes me is that there are so many people that think the brain CAN’T get broken. They don’t “believe in” mental illness, but they know that the spleen, liver, heart, and skin can be ill, right?”

    Adrienne, that was such a good analogy. Though mental illness is not something in my world/life and therefore I honestly haven’t given it a ton of thought, I don’t deny it is out there and I can’t imagine what it is like for those of you facing it to go through it. But that analogy just stood out to me and I will keep it in mind if I ever am in a conversation with anyone who thinks it does not exist.

  • I can’t imagine how difficult this must be. Our kids are still so young, it’s possible that they do have mental illnesses that haven’t manifested themselves. I do know that there isn’t enough help in this country for all those who need it regardless of age. My mom has short-term memory loss. It’s not exactly dementia or Alzheimer’s, so since she doesn’t really fit in a category, there aren’t a lot of options for us. But at least we don’t have to fight the idea that it’s not real. I think it’s great that Oprah used her platform to offer insight, but that must be frustrating to see her suggestions for a solution. I can honestly say that I used to think that the parents were to blame for kids’ behaviors. But now that I have my own? There is so much that is innate, out of our control and/or beyond our understanding.
    NotJustAnotherJennifer recently posted..Guest Post at The Lazy Christian

    • Oh, so true. I was a much better parent before I had children of my own!

      I’m sorry your mom is having trouble with her memory. Do they expect it to resolve?

      • Well said! 🙂

        I don’t know. It’s definitely stress induced. My dad has health problems (he had his first heart attack when I was 14, triple bypass when I was 16, stents put in when I was in college, diagnosed with diabetes when I got married, a blood disorder when our oldest was born, etc.). My mom was laid off about 5 years ago, and she didn’t do anything but sit around the house. And worry about my dad. All. Day. Long.

        Once we had our girls, my parents started to babysit for us part-time, and I think that helps to keep her occupied, but unfortunately, it’s progressed so much that I don’t know if it can be reversed. We didn’t realize it was as serious as it is because Dad would say mom was forgetting stuff, but he forgets things, too (normal for a 70-year-old). But this past December it was evident that her situation was worse than we thought. The dr. prescribed her an anti-dementia drug in January, and it does seem to be helping a little bit.

        She had an MRI, and her brain deterioration is average for her age, so there’s hope that it will get better. I really need to do more to help her. I’ve tried to find a support group online or locally for her and for us, but haven’t had much luck. I work full-time and have a toddler and a preschooler, and I feel terrible, but I haven’t made time to do much more than that yet. My next objective is to find some group activities for her and my dad to try to participate in. Nothing that requires too much concentration like bridge or anything, but maybe there’s something available. I think just getting out and doing stuff would help her. Thanks for your concern. It’s tough with something mental. With a physical illness, you know what to do, you have a plan and resources. This is less charted territory, as you well know.
        NotJustAnotherJennifer recently posted..Wah Dahgu Siam

  • Danielle

    Wow. I’ve been trying to figure out for 8 years what we’ve been doing wrong. I have twins. One is quiet and subdued and prefers being alone. The other is loud and boisterous. They’ve had the same food, the same clothes, the same attention, the same discipline, the same homeschooling, the same e v e r y t h i n g. But the loud one- Jake- will blow like a grenade over the smallest thing. If you open a doorknob he was about to open (for example)- that will send him into a raging tantrum. I used to have to douse him in cold water and wrap him up in a towel and hold him tight until he calmed down. He would be in a blind rage to where he couldn’t focus anymore. I don’t want to “excuse” his bad behavior or dare I use the word “sin” ( I DO dare) or our bad parenting by saying there is something “physically or mentally” wrong, but at the same time……how can it all be us? We have two other children that have been raised under the same conditions. Our ped. has never really responded to the issue. I’ve always known it’s something more, but for the life of me, I can’t figure this boy out. He’s not nearly how you describe Carter, but he’s still got some serious issues. Where do you start?

    • Oh, Danielle, I’m so sorry. That’s so hard!

      I would tell your ped that you have concerns and ask for a referral to a developmental pediatrician. You might also trying to get an evaluation through Child Find, which you can access through the public school your kids would go to if they went to school.

  • I was just thinking about this. People need to see what it is like to be in a household like this first, before any sort of opinion can be formed.

    In my opinion, you have to LIVE it before you can even begin to think you know what you’re talking about.

    It’s hard enough when you’re the parent, and it’s your child…how can someone with no ties of love understand????

    xo
    Alexandra recently posted..Whose Life Is This

    • That’s such a hard thing. It’s like when you’re pregnant, and everyone thinks they can touch your belly. When there is something difficult going on at home, everyone thinks it’s OK to throw their “expert” opinions around.

  • Oh this topic just eats at me, my oldest has autism and has severe issues with managing aggression, we have spent thousands and have found little support and treatments that work. On the other hand I had four preemies after her. They had much more complicated medical issues but insurance has covered every dollar of it and there has been a “fix” or “answer” to every single problem they have had.

    I have yet to find someone who can give me an answer about what my daughter’s future will look like and I don’t think a whole bunch of good vibes are going to make it all better.
    Jessica recently posted..Why Flash Mobs Make Me Cry

  • Patricia Wood - Patty

    Please don’t take this the wrong way..I’m not making light of your problem..but I would gladly trade my hair, eyelashes, and eyebrows just to be able to express myself on paper like you do. You are truly gifted. I stumbbled across your critique of the oparah show the other day, which I found to be far more interesting that the show itself. Maybe it’s because you are speaking to a topic that i deal with every hour of every day with my 17 year old daughter and I could relate or maybe it’s because you are just talented, but either way, I am now a fan.

  • Pam @writewrds

    I like this part: “We’re too busy holding our kids and our families together to write as many letters as need to be written.”
    Or say what needs to be said. It sucks up too much energy. But I hate when people make superficial assumptions when they don’t really understand what’s going on at all.

    Thanks for all your words. Your blog is amazing.

    Sincerely, Pam

  • Thank you for writing this. We are in our early stages of trying to find a diagnosis for my daughter’s mental and behavioral issues. I know that there is something wrong, some underlying thing that cannot possibly be MY FAULT, and I am horrified to find that many people do not agree with me.

    I don’t discipline enough. I don’t set boundaries. I let her get away with her tantrums. I don’t spend enough time with her. I don’t give her what she needs.

    It’s heartbreaking to find that my own family and friends are so unsupportive because they are so quick to try to place blame and judge me for my actions without taking a closer look…

    Thank you for writing – thank you for blogging, I mean. I’m glad you are out there, and I find great comfort in your strength to get me through.
    Meaghan recently posted..How the first day went

  • Your observation about why it’s so hard to be an activist as a parent of a child with special needs is so true. I just missed a state senate hearing on autism insurance coverage because my kids were having the kind of day that requires two parents around just to keep everyone safe.

    Wonderful post.
    Sarah recently posted..Why don’t you just…

  • Rebecca G

    I have just begun reading your blog and I have to say thank you for nailing it every time.
    My daughter J, has a very rare medical illness that causes among many things, severe psych issues that are very similar (nearly identical) to your son’s. As a result, she has spent plenty of time at the Children’s medical hospital and has had a few stays at the children’s psych hospital. The stark contrast between the quality of care in two separate places that exsist to care for and treat sick kids makes me enraged and well…sick to my stomach. The real fact that in our experience psych hospitalization has never actually benefited her, and usually (because of quick med changes and not a long enough stay) she comes home in worse shape also makes me totally sick. We only have her admitted when we are literally on the verge of collapsing as a family, because we get no respite, no services, no help….despite nearly seven years or begging, pleading, and filling out applications that never get us anywhere.
    The other outrageous injustice, is that treatment has been available for her when she has physical symptoms of her illness (difficulty walking, bizarre eye movements, tremor), but as far as the psych stuff, which has the same root cause and can be treated in the same ways, we’re out of luck-have to see a shrink for that. The psych community doesn’t want to deal with us because the symptoms are caused by a medical illness (WTF is the difference anyway, isn’t a body a body, including the brain?).
    It’s a nasty, catch twenty-two where a child suffers and her family suffers right along with her, and in essence, we all become victims of her illness and the “system”.

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