The Cosmic Measuring Stick of Love

Since I appeared on The Ricki Lake Show: Inside Childhood Mental Illness last Wednesday I have heard from dozens of parents. Most say some variation of “Thank you for sharing your story. It makes me feel less alone.” Some are pleas for help finding appropriate services (How painful, not to have an answer, but I am just a mom with a blog, not an agency.), and quite a few say something like, “I know I shouldn’t feel this way, but……” followed by an outpouring of fear, anger, rage, hate, despondency, terror, helplessness, hopelessness, and regret.

I have tried to answer every one, but I got a little lost somewhere among Facebook, Twitter, blog comments, and email, not to mention the comments on the show’s website, FB page, and Twitter feeds, but I’m answering all the people who write, think, and say, “I shouldn’t feel this way!” with the following commandment:

Give yourself a break.

There is no way that any of us should or should not feel. We get enough judgmental crap from family, friends, and that guy in line at the post office. We don’t need to do it to ourselves. Let’s start with some truth: having a child with a serious illness sucks. It sucks giant, hairy, unwashed monkey ass. Yes, there are blessings. Yes, some of the consequences are lovely.

Whatever.

We will see the blessings and the loveliness when we are good and ready and not one instant sooner. Do you know to whom we owe a sunshiny, rosy view of things?

Not one person, anywhere, ever.

Here’s the thing: the first step to learning to live with all those painful feelings is to stop condemning ourselves for having them.

Feelings are not like actions. Our actions are up for debate. If I punch someone in the nose, or drop my drawers in the middle of a restaurant, or drive my car too fast, or starve my kids, people (perhaps represented by law enforcement) have every right to say hey, cut it out! That’s not OK. We don’t accept your behavior.

Feelings, though, belong to the feeler, and they are never good or bad, right or wrong. Some of them are wonderful to experience and some of them are like being ground to bits, but they are morally neutral.

When Carter was a baby, I was consumed with guilt over the fact that I had enjoyed my other babies so much more. I believed that I loved my other children more than I loved Carter. Dozens of people have written to me in the past few days expressing similar anguish over loving other children more than their ill children, or not loving their ill children as much as they believe they should. We wring our hands and ask over and over, “Do I love him/her enough? How can I love one more than the other? Am I not supposed to love my child unconditionally? I must love this one as much/enough/more! I must! I am a failure as a parent and a human!”

Could someone please show me the cosmic measuring stick of love?

There is no love measurement. Remember where we started: having a child with a serious illness sucks. Here’s another truth: having a child with a serious illness that causes that child to act mean/vicious/violent/cruel/aggressive, or prevents us from taking care of our own basic needs (sleep, cleanliness, food, exercise, socialization) sucks ultra-triple-super-extreme.

Another truth: when someone is being mean/vicious/violent/cruel/aggressive to one or more of our children, we will have a protective reaction, even if the person being mean/vicious/violent/cruel/aggressive is another of our own children. That makes those feelings of love and kindness really difficult, if not temporarily impossible.

When we are restraining children who hiss and spit and bite like angry cats, and our hearts are thundering like trains and we ball up our fists and press them tight so we do not punch and we clench our teeth so that we do not bite, that is love. It doesn’t feel like love. It feels like raging helplessness. Nevertheless, that’s love (with teeth), and it’s the same love we feel when we enjoy ice cream sundaes with smiling children who tell adorably bad jokes.

Love is only sometimes about warm, happy feelings. Every parent learns this lesson eventually (by puberty at the latest), but we must learn it earlier, faster, deeper, and more violently.

Another truth: humans have emotional limits. If you’ve ever watched someone near the end of a long race hit the wall, you know the human body can come to the end of its endurance. What most people don’t know is that we can hit an emotional wall, too. None of us has a bottomless well of compassion, empathy, and kindness to share. Not even parents. Not even the mothers of special needs children, who, in spite of popular myths about saintliness, great strength, and an abundance of patience, are utterly ordinary.

It is a misery to have conflicted feelings about our own children, to be plagued with regret for birthing or adopting them, guilt for our shortcomings in parenting them, and fear for the ways they will continue to change our and our other children’s lives.

Self-flagellation is not the cure for that misery. I promise you, with all the confidence of 19+ years of parenting and more practice in brutal remorse than anyone I know, that there is no problem so great that self-flagellation cannot make it worse.

The outrageous and surprising irony is that, once I gave up on trying to see the bright side and looking for the silver lining and other assorted nonsense and admitted to myself that having a kid with serious mental illness sucks, and I hate it, and I would trade it in red-hot instant? That’s when I started to come to some kind of tentative peace with the whole mess.

And it’s a mess. Oh, yes, no mistake, we are not on some alternate-but-just-as-lovely-in-its-own-way life path over here.

Do you know who needs me to see Carter’s illness and the fallout it has created in our lives as an alternate-but-just-as-lovely-in-its-own-way life path? A whole lot of people who don’t matter; people who don’t get it; but the fact is, I can love Carter wholly and completely and also feel bitterly angry at what his illness has brought into my life and my family.

The more fully I accept that anger, the more often I feel the love.

What happened to Carter is flat lousy. I don’t help myself or anyone else when I pretend otherwise. I say again:

Give yourself a break.

What you feel is what you feel. It’s all OK.

All that said, sometimes our feelings get the best of us and we do things that are destructive and hurt us, our children, or others. If you need help or support, please ask. (All these resources are in the US.)

If you have hurt or are afraid you may hurt your children, contact the Childhelp National Child Abuse Hotline at 800-4-A-CHILD.

If you are concerned about your own or a loved one’s alcohol or drug use, call the National Council on Alcoholism and Drug Dependence at 800-622-2255.

If you are suicidal or feel like you might hurt yourself, call the National Suicide Prevention Lifeline at 800-273-8255.

If you feel that your health and safety, or that of your child (or anyone else), is in danger, or that you or your child (or anyone else) may hurt someone, call 911 or go to the nearest emergency room.

If you want to talk to other parents who are raising children who have special needs and you’re on Facebook, send a join request here.

Value Options and the Denial of Care: Continuing the Conversation About Mental Health Care

ValueOptions® would like you to believe that they really, really care about getting mental health care to everyone who needs it. I cry foul.

On December 20, 2012, I wrote a post called A Little Girl in Danger: This Is America’s Health Care Crisis, in which I told you all about my friend Kirsten and her daughter, Pickles.

If you missed that post, allow me to sum up: Pickles is seriously mentally ill. She has multiple diagnoses, but the primary one is early-onset schizoaffective disorder, which has all the thought issues of schizophrenia combined with all the mood problems of bipolar in one developing brain. It is exactly as devastating as it sounds, but Pickles’s insurance company decided, unilaterally and against medical advice, that Pickles would be discharged with virtually no notice and with no aftercare provisions in place.

Except that it wasn’t exactly the insurance company that made that decision. It was ValueOptions®, a company that insurance companies and states contract to manage their mental and behavioral health care services. From ValueOptions® website:

ValueOptions is a health improvement company that serves more than 32 million individuals. On behalf of employers, health plans and government agencies, we manage innovative programs and solutions that directly address the challenges our health care system faces today. A national leader in the fields of mental and emotional wellbeing, recovery and resilience, employee assistance, and wellness, ValueOptions helps people make the difficult life changes needed to be healthier and more productive. With offices nationwide and a network of more than 130,000 provider locations, ValueOptions helps people take important steps in the right direction.

I don’t know what part of that statement includes removing an extremely ill child from necessary inpatient care when her safety is at stake. After I wrote my post, Kirsten’s and my mutual friend Chrisa Hickey of The Mindstorm started linking that post on ValueOptions® Facebook page several times every week in an attempt to provoke a response. Finally, after a month, she got a message from Tom Warburton, Vice President of Corporate Communications at ValueOptions®. You can read the entire letter and Chrisa’s response in Chrisa’s blog post Value Options Is Neither—An Open Letter to Tom Warburton, Vice President of Corporate Communications, Value Options, Inc.

The letter reads like nothing so much as a pat on the head. Warburton says, “I believe your persistence comes from a place of compassion for a story you read online… [and] now more than ever we should link arms to help move the agenda forward for mental illness,” as if this is an issue of an over-caring little woman with an over-identification problem. I snorted coffee when I read that because even if we didn’t all know each other (and indeed, depend on one another for the support that keeps us alive, parenting, and advocating day after day), nothing about this is even remotely Kumbaya for any of us. We are not in this for the glitter rainbows and little pink teddy bears, or whatever the hell Warburton is thinking. We are in this because our children’s lives depend on it.

There is no hyperbole in that statement. Our children’s lives are at risk because of their illnesses and we are not going to go away and cross our fingers and hope for the best. We don’t just fight for our own children and the children we know and love, but also for the children whose parents can’t fight; for the taxpayers whose money is wasted on programs that don’t work; and for the millions of people who continue to suffer and die with untreated or under-treated mental illness. We would love to “link arms” with companies like ValueOptions®, but a real conversation that leads to real change requires all of us to come to the table with our motives and values exposed. I strongly suspect that the motives and values of ValueOptions® have far more to do with balance sheets than with the lives of the 32 million Americans whose mental health care is “managed” by them.

Warburton also asks, “Are you sure that you have all the facts in the case you reference?”, which I can answer with an unequivocal yes. What I wrote in A Little Girl in Danger was not hearsay; Kirsten played voicemails from ValueOptions® employees for me, and I have been present during many of her calls with them. The question is not whether we have all the facts, but on which facts ValueOptions® is basing its decisions. In one phone call, a ValueOptions® representative said twice, “It’s just time for Pickles to go home,” and once, “We really feel like it’s time for her to go home.”

No, wait, let’s hit that one again: “We really feel like it’s time for her to go home.

Feel like??? Did someone draw a card? Read some tea leaves? Have a dream? “Feeling like” a given course of action is the right one is not medical judgment, especially when that feeling comes from people who have never met or treated Pickles.

ValueOptions®  is a private company, so their financial information is not easy to find*, but we do know a few things: the average salary of their employees is $83,000 per year. Here is a list of salaries for some of their mid-level employees, which seem pretty healthy to me for a company whose representative said, “We believe it is our job to make sure that we manage resources in the most effective manner for those that need. And as I am sure you are aware, funding for mental health treatment is dramatically underserved in both the private and public sector, so resources are scarce indeed. Our goal is to advocate for more spending – public or private – when it comes to mental health and substance abuse treatment.” It’s awfully disingenuous for a company to cry poor when their employee compensation is so generous. And remember, those are mid-level employees. Their executive leadership probably earn many times more than their average employees.

So to Warburton I say yes, absolutely. We need dramatically increased funding for mental health care in the US. On that point we agree. My concern, though, is that funding be used to treat patients, not provide ever-nicer lives to the executives of companies like ValueOptions®. Records obtained under the Freedom of Information Act indicate that in Illinois,ValueOptions® has been steadily and dramatically decreasing the number of children it approves for residential treatment, in spite of increasing need. Keep an eye on Chrisa’s blog for more information about that.

We have two urgent issues to deal with: first, we’re talking here about people. People with serious mental illness might be weird and scary. Some of them will never have conventionally productive or successful lives, but that does not make them disposable. They are beloved children, grandchildren, nieces, nephews, siblings, parents, spouses, and friends, full of gifts, talents, love, and the innate value of every human. They deserve every opportunity to reach their potential, and dammit, we as their parents deserve to witness them experiencing joy and the satisfactions of success.

The other issue is the money. Our taxes (and much of ValueOptions® revenue is from taxes) are funding an outrageously top-heavy system. When I visit Pickles at her residential treatment center, I am dismayed at the cafeteria where we visit. It needs a good scrubbing, a fresh coat of paint, and new tables, but the money for cosmetic (they aren’t really cosmetic; an ugly environment is not conducive to emotional well-being) fixes is not often available. The low-level staff is constantly changing because they are overworked, underpaid, and poorly trained, a situation that is brutally difficult for the children and adolescents in their care. In facilities all over the nation, there are staff who are dedicated and caring. They want to do wonderful things for and with children who need treatment, but they do not have the resources to make that happen.

And, of course, many children who need that level of care (and other levels, from acute inpatient to day treatment to intensive therapy that encompasses many hours each week) simply don’t get it because someone in an office somewhere really feels like that child doesn’t need it.

This is no way to run a health care system. This is no way to care for the weak, the vulnerable, and the sick. I invite ValueOptions® to come to the table for a real conversation about real problems and real solutions. Tom Warburton, we see your Kumbaya linking of arms and we raise you one deeply troubled little girl in urgent need of continued services.

 

*A huge thank you to Alena Chandler for her research help.

Pick Your Poison

Cursing and sword swinging in the wee hours. That doesn’t seem entirely normal.

It’s 3:11 am and there are some people sleeping in this house, but Carter and I are not among them. I was dozing in and out, trying mightily to find my way into unconsciousness when Carter woke and started one of his sing-song chants:

Butt fucker butt fucker ass fart fuck
Butt fart ass fucker fart my ass
Ass fucker fart fucker stupid ass

There is more, but I’m sure you get the idea. It is all accompanied by the swinging of a plastic retractable light saber.

Charming, yes? I swear, my kid could make a seasoned Naval seaman blush. The fact that he doesn’t know what fucking actually IS, is small comfort in these moments, which in all honesty are mostly disturbing because they are interrupting my sleep. The cursing? I won’t say I like it, or that I don’t notice it, but it is what it is and I got tired of dishing out the consequences every time he spilled one of his foul songs, so we’re sticking with making sure he doesn’t call names and we make clear that racist/sexist/etc. hate language never makes itself comfortable in our home. Thankfully he hasn’t heard those words yet so for now, we’re safe. First person to teach my kid a racial epithet gets it right between the eyes.

No, instead of trying to force him to stop (a losing proposition during the day, when I’m rested; a doomed exercise in escalating frustration in the middle of the night), I tell him that if he needs to continue he has to go to the garage.

“But there are cockroaches out there, Mommy! I can’t go out there with the cockroaches!”

“I sprayed the garage weeks ago, maybe even more than a month. The cockroaches are long gone.”

“So you want me to go out there with the poison?”

“That poison can’t hurt you, but it it’s a problem there’s always the option of laying quietly in your bed until you fall asleep.”

“I guess I’ll die of cockroach poison, then.”

And he took his plastic light saber and went to the garage, where from my office nearby I can hear him sing-songing his blue way through his elaborate Ninja sword routine, which is actually quite graceful and balletic.

Soon, he’ll come in and try to go back to sleep. I will go to sleep. The light saber will definitely go to sleep. And to think, we still have 2 1/2 hours until we have to get out of bed!

Sigh.

In the Forests of the Night

I am tired. Tired in the extreme. Tired enough to be a little concerned about driving.

Not half as tired as Carter, though.

Spring is flat lousy for some people with bipolar. No one really knows why; longer days, more sun, or some other reason (and don’t most of us feel a lift of mood and an increase of energy this time of year?), but for many people with mood disorders, Carter included, mania comes into the house and makes itself at home in the spring.

Spring also causes a decrease in the levels of mood stabilizing medicine in Carter’s blood. Lithium is a salt, and as the weather gets warmer, he drinks more water and sweats more, thus moving lithium through his body faster and allowing his blood levels to drop below their optimum therapeutic level.

Hence, suffering.

Carter is miserable with his inability to sleep (he’s averaging 6 hours a night for the past two weeks, with a few nights as short as 2-3 hours).

We’re miserable with his inability to stop talking and spinning.

No, seriously, he talks. Constantly. Without ceasing, literally. If he runs out of actual things to say, he does nonsense rifs composed mostly of curse words and slang scatological terms. In the bathtub, he sing-songs endlessly I’m gonna poop your ass! I’m gonna fart your butt! Poopy butt! Poopy butt! I know you have a poopy butt! Which is actually kind of funny for a few minutes, until it makes me beg Brian to saw my ears off with a rusty table knife.

And what does that even mean, poop your ass? I should probably know, since he says it at least 70 times a day.

Worse is that he’s terrified to go to school because he knows he’s barely holding himself together. Except that’s not exactly true; he hasn’t been violent, or even especially destructive, but he feels out of control and his anxiety is through the roof, so he’s afraid he will hurt a classmate or (much worse in his mind), say something to hurt his favorite teacher’s feelings.

I remember all too well the horrors of 3 years ago, and I know that, while Carter’s illness is active right now and it’s nothing anyone would call fun, it’s also a far cry from the worst we’ve endured. Carter barely remembers the worst of that time (thank God for slippery memories and the ways they sometimes protect us) and doesn’t enjoy the perspective that I do.

Although if I’m being honest, I will admit that at 3 am, perspective is bullshit.

Sleep is one of the purest, simplest pleasures in life, not to mention essential for happy, healthy daytime functioning. He deserves to enjoy more of it. I’ll be calling his psychiatrist tomorrow. If you pray, feel free to say a few words in favor of his doctor having an inspired idea that will get Carter sleeping again!

Toothpick Wielding Demons

I put a condiment cup full of pills in front of Carter this morning, as I do every morning.

As he does most mornings, Carter shouted at me, “I don’t have any water! You know I only take my pills with water!”

And as always, I pointed to the water glass sitting next to the cup of pills, and as always he groused and complained because I didn’t tell him about the water, or there wasn’t any ice in it, or it wasn’t in his favorite cup, or don’t you know I can’t take my medicine before I put on my shoes?

We go around like this over and over all day: when I turn on the car (if I start the engine too soon he is afraid; if I start it too late, he is impatient); whether or not the “right” socks are clean; what time he arrived at school (8:28 is too late; 8:25 is too early); whether or not we have the yogurt flavor he desires. He punishes me for perceived slights (mostly these involve not moving fast enough, as in, why didn’t I know what he wanted before he asked for it?), small infractions, and things over which I have no control (the weather, traffic). Most of all, he is driven to blind red rage over the word no. On and on it goes, every moment containing possible cause for fury.

I see the pain and condemnation in the eyes of Carter’s siblings: why don’t you try harder? Why don’t you do more to keep him calm? Why don’t you punish him for speaking to you that way?

The non-reaction that bothers our other kids is not something that Brian and I chose in a careful conversation the way we chose, say, Carter’s school. We didn’t formulate a plan.

We just got tired, so we redrew the line at which we would respond. And we redrew the line again. And again. And again. These days, the issue is not the frightening rages of two years ago. He isn’t a danger to himself or anyone else, not in a physical way. There is no emergency, except in Carter’s mind. Where the illness used to be a shotgun blast into the center of our family, now it’s like an army of toothpick-wielding demons, stabbing us repeatedly. Better, to be sure, but not anyone’s dream of a happy family life.

Here’s the sad fact: there are limits to how much we can do to manage Carter’s symptoms.

In a contest between responding to every nasty word and minor tantrum, or learning to let most of it slip by us, we chose to let most of it go. In the midst of an endless stream of punishable behaviors, the sound of our own voices — Carter, that’s unacceptable; go to your room. Carter, I expect you to treat me with respect; go to time out. Carter, you may not speak to your brother that way; you can’t use the computer for the rest of the day. — was nothing so much as more noise. His noise, our noise, so much noise, and none of it accomplishing anything.

So many features of Carter’s illness come together to make discipline, if not impossible, at least profoundly difficult. His extreme impulsivity makes the span of time between urge and action minuscule. His cognitive issues mean that learning something new (like responding calmly to perceived injustices) takes an astronomical amount of repetition to solidify. Paranoia makes him believe that even the people who love him the most in the world might try to hurt him on purpose. Anxiety leaves him feeling like every problem is a crisis. If he is psychotic, delusions and hallucinations make his outbursts even more irrational.

This is a hard thing, this accepting of Carter’s behavior. I know that anxiety is at the bottom of these behaviors, but what we see on the surface is just so much nastiness and anger. It’s hard to feel sympathy for a person (even a small person) who is acting in such a hateful manner.

Like Spencer said when Carter was a baby who cried all day and much of the night, “It’s a good thing we love Carter or else we’d be banging him on the floor.”

I hate that. Not as much as I hate that my little boy is living in the emotional equivalent of a pinball machine, but I hate it nevertheless. For all of us.