The Kt we loved

The Kt we loved
"I just might hurt you if you don't move that camera." — Kt

Monday, June 4, 2012

Keep On Truckin'

Some friends are going through much the same experience with their 17-year-old son as we went through with Katie. Their situation isn’t identical, of course—as Tolstoy wrote, “Happy families are all alike; every unhappy family is unhappy in its own way”, and the same applies to individuals.

But the fundamental problems are the same: their bright, happy, smart child goes through periods of dysphoria and rage, culminating recently in a suicide attempt. Fortunately, they found him in time and he’s OK for now, but nothing is resolved. Indeed, it rarely is in these situations, until and unless either a set of medications seems to stabilize the situation, or the individual just “grows out” of it.

The former isn’t a sure thing even when it seems to work, because the efficacy of meds can change without warning. But for some people a particular regimen can work for long periods, sometimes even permanently. (And by the way, television writers, please learn that medication isn’t magic—I almost threw something at the screen last year when a character’s problem was diagnosed as bipolar: “Now we’ll get you on medication, and you’ll be fine!” A tad bit facile.)

“Growing out” of the problem shouldn’t be taken to mean the child is doing anything deliberate, i.e., acting out to get attention. Instead, it reflects that fact that just as these disorders often start at puberty or around age 18 (as various major stages of physical brain development occur), they can also vanish, or at least lessen, as further physical maturation transpires.

When IMing with my friend today, I was finally able to articulate something that had been percolating in the back of my mind for some time: that mental health issues are in some ways far worse than physical health issues for the victim’s family.

If your kid has cancer, I wouldn’t expect you to feel any qualms about telling friends and neighbors. They’ll rally ’round and help support you to whatever extent they can.

If your child is bipolar or has severe anxiety or any other sort of mental illness, you’re likely to feel much more chary about discussing it. Not because you think you’ve done anything wrong, hopefully (although of course there’s always some latent guilt lurking in the back of your mind, even if you know intellectually that you aren’t responsible), but because you don’t know how others will react.

As I’ve written previously, Katie was blessed with a great number of friends, but she (and we) were also blessed with the friendship of a great number of other parents, many of whom “got it” without any discussion or weirdness. They welcomed her into their homes despite her “problem”, offered us support, and did all of the things that good friends do when someone they know needs help.

But this isn’t always the case. Some people just don’t get it, and that’s sad for everyone involved. A few of Katie’s supposed friends dropped her like a hot potato as soon as word got out that she was ill. I don’t feel hostility toward these kids: their experiences and/or attitudes are what they are, and they didn’t act as they did to be mean. We are all damaged people in one way or another.

All-too-common modern “helicopter parenting” confuses things, too: the parents of a child who has real problems and needs real monitoring may just appear overprotective to other parents, or—perhaps worse—no different from their actually overprotective peers. Either case makes real threats become harder to detect.

History hasn’t helped here, either. We used to put people in “nuthouses”, and even have words like “bedlam” that are derived from that practice, and “You must be crazy”, “My boss is nuts”, etc. are part of the language. There’s still a stigma associated with mental illness, and the insurance industry tried hard to preserve that: until the Mental Health Parity and Addiction Equity Act was signed in 2008, U.S. group health insurance plans were allowed to treat mental illnesses differently. Typically this meant some small number of psychiatric visits were covered per year; after that, well, sorry, you had to pay yourself—or forego treatment.

As Dennis Miller would say, “I don’t want to get off on a rant here”, but the injustice of those limitations and the fact that it took so long to rectify it is pretty sad. I know people who have all but bankrupted themselves trying to pay for mental health care for their child despite having “good” health insurance. And don’t get me started on folks who have to deal with not having any health insurance. But I digress.

Having a child with a chronic physical illness—celiac disease, diabetes, myasthenia gravis—is of course terribly hard on the rest of the family. Parents can focus too much on the sick child, to the detriment of the rest of the family; or try to treat everyone equally, usually to their own detriment—there are only so many hours in the day! But the one thing everyone in such a situation can usually agree on is the enemy: the illness.

With mental illness, the sick person can become the enemy, both to themselves and to the family. Rage and threats and physical violence are usually directed at the rest of the household, and can occur at random. If, as is often the case, the afflicted child doesn’t even admit to having an illness, things are that much more difficult: the parents are clearly the bad guys, since if the kid isn’t sick, what’s all the fuss about? This positive feedback loop just makes things worse. Non-compliance (the medical term for “not taking your meds”) is common and further muddies the waters.

The parents are often left with a dilemma: do we try to enforce restrictions (curfew/driving/etc.) that are clearly aimed at trying to protect the child from himself, knowing that doing so makes us even more the perceived root of all evil? Or relax the restrictions, lowering stress for all involved? It’s a tightrope dance that has no right answer (to mangle a metaphor).

It’s axiomatic in the mental health business that someone who is determined to kill themselves is likely to find a way to do so. What makes cyclic disorders (depression, anxiety, the entire bipolar spectrum) even more difficult is the fact that you never know from day to day what to expect. Of course there are physical illnesses like that, but with those, if things get really bad, you typically wind up at a hospital. If your child is raging and threatening, your choices are to try to deal with it, or call the police. And the latter can obviously get real ugly real quick.

One final factor that makes things harder: once the child turns 18, (s)he’s legally an adult, and you lose a lot of parental rights. For example, even if (s)he’s on your insurance, you don’t have the right to know anything about diagnosis or treatment unless the child consents. Which, of course, may not happen, since “it’s all your fault” anyway.

Again, the choices are lousy: deal with it, make ugly bargains (“If you don’t sign this paper saying we have access to your medical information, you can’t live at home”), or get the child declared incompetent. The last of these is not only time-consuming, expensive, and likely devastating to the relationship, but isn’t even a sure thing: just because someone has attempted suicide several times does not make them incompetent in the eyes of the law, especially if they’re able to make a good representation to the court (“Yes, but that’s all past me now: my meds are working and I’m fine, honest!”).

With modern communications (texting, Twitter, IM, et al.), a child who is suicidal will often say something to his or her friends (this has always been true, but it’s more real-time now). But their friends are, after all, not full adults, and are torn between worrying about their friend and wanting to be loyal. There’s no good answer to this one either: the friend who “rats out” the kid who wasn’t serious, or who had passed the crisis point without taking action, may lose a friendship; yet of course Katie’s friends who saw her the night she killed herself are wracked by guilt over what they think they might have done differently.

As my friend wrote, “The whole situation is crappy”. Indeed, it defines the term. So what’s a parent to do?

You brought this beautiful child into the world, and have spent most of your adult life trying to help them achieve and grow. You’ve told them “You can be whatever you want to be”. And now you’re finding out that nature has conspired against you, and the fact is that instead of looking ahead to them being independent and discovering a career and finding love and maybe having their own kids, you’re instead simply hoping to get through the next month, week, day, hour without a crisis, without losing this battle that you didn’t even know you were fighting until you were hip-deep in shattered visions of how you thought things would be.

Remind the child constantly that you’re there, that you love them, that you will do whatever you can to help them. If there are people outside the house (an aunt/uncle, perhaps) whom the child trusts, encourage them to reach out to the kid with unconditional offers of help, including promising to keep secrets from you (whether that promise actually applies is something they may have to decide on the fly).

You know your child better than anyone, so trust your gut: if your medical/psych professionals aren’t working, find new ones. Most folks out there with psych degrees are caring, hard-working professionals, but that doesn’t mean they’ll be right for every kid. Talk to the school guidance counselors—they’ve seen a lot more of these situations than you have, which doesn’t mean they’ll have any magic answers, but they’ll at least have some ideas and can suggest more resources.

Reach out to others. NAMI ( and and other groups offer support meetings of various types, including many for parents and relatives of folks suffering from mental illness. When you talk to other people, you’ll be surprised at the number who have been touched in some way by similar problems. Of course, they likely don’t talk about it much, because we still have this societal stigma attached. But that’s slowly changing.

All you can do in the end is keep on keepin’ on, doing your best, and adjusting as the waves threaten to swamp the boat. And know that you are not alone.