Tears and Triumph – Mostly Tears, Though

I went to Carter’s end-of-the-school-year awards luncheon last week and it put me in a thoughtful mood. This year has been one for the record books. I expect we’ll look back on it as the period during which we lost our emotional virginity. Interestingly, while Carter is probably more obviously unwell than he was last year this time, Brian and I are more OK now than we were then. We are adjusting to our new normal, which is not to say that it’s getting any easier, just that we go down with Carter less often.

During February and March of 2009, after about 18 months of moderate stability with a stimulant and sleep meds, Carter began to fall apart. This is a fairly typical pattern among kids with mood disorders: an initial diagnosis of ADHD leads to a prescription for stimulant meds which leads to a significant worsening of manic symptoms.

We were stunned by what was happening to Carter and had no idea what to do. Off meds, he almost never slept, was so hyper and impulsive we were constantly concerned for his safety, and was acutely anxious all the time. On stimulants, he was a snarling, angry beast, kicking and hitting other children, hurting himself, cussing a blue streak. What the hell were we supposed to do?

By late spring, the developmental pediatrician, Dr. H., who had been taking care of Carter told us it was time to transfer his care to a pediatric psychiatrist. That certainly seemed reasonable to us, so we made an appointment with Dr. S., who could see us in early August.

Here is where I share with you an important lesson: when transferring the care of a chronically ill child from one provider to another, do not allow the first provider to delete your child from her or his patient list until the day of your first appointment with the new provider. For two months, Carter was not Dr. H.’s patient anymore, but he wasn’t Dr. S.’s patient yet. Through June and into July, we tried to hobble along and do the best we could, but by late July Carter was acutely ill, and it was like nothing we had ever seen before. Dr. H. couldn’t do anything. Dr. S. couldn’t do anything. We hadn’t yet found our support group, so we had no one whom we could ask what to try or where to go.

It was terrible, but I was trying like hell to hang onto my job as director of a child care facility. What a mess. Carter spent much of his time in his class there struggling to get away from the other kids. Often, I had to leave work early, and several times Carter attacked other children. I was terrified that he would really hurt someone, but at the same time I didn’t think it would happen. Never, ever underestimate the power of denial. I still wanted to believe that Carter had unusually severe ADHD with anxiety. The words “mentally ill,” “bipolar,” and “emotionally disturbed” seemed like huge overreactions to me and I was neither ready nor willing to consider them.

The other kids, though? They knew. They could see that Carter was different and they played on that. When I saw kids taunting my boy, it took all of my self-will to respond appropriately because my body would be screaming at me to grab any child who bothered my little boy and body slam him repeatedly. These were children I adored, but those moments were unbearably painful. It’s amazing, the reaction my body has to a threat against my child. And not even just my child. My reaction is bigger for Carter than for the other kids; he’s more fragile, needs more of my protection, and I seem to know that in my DNA.

And then came The Day. I don’t remember how the day started, but by 9 am one of Carter’s classmates came running down the hall to my office to get me. We ran back and I found Carter’s teacher struggling (God love her, she worked SO hard all summer.) to pull him off another boy, E., around whose neck Carter’s hands were wrapped. It was bad. E. was choking and gasping and though there were no bruises, his neck was red for over an hour.

The next decision I made is puzzling to me, but again, never underestimate the power of denial. I helped Carter calm down while the teacher helped E., and then, instead of taking Carter home, I left him in his class and went on working.

What I know now about that summer is this: while I knew that Carter wasn’t OK, while I knew that he needed more help than he was getting, all those years of doctors and others denying my concerns had done their work on me. I was of two minds and those two minds were battling for supremacy. That summer, the part of me that believed all my concerns were huge overreactions dictated many of my actions. Even as I was restraining Carter to protect him from hurting himself or dodging his comments about the methods he would employ one day to end his own life, the voices of a hundred naysayers were loud in my mind.

I wasn’t back in my office but 20 minutes before I was running back down the hall to Carter’s classroom. The Carter I found there was like a panicked wild animal. He wasn’t hurting anyone, and I don’t know if he was trying to hurt himself, but he was entirely out of control. He was screaming terrible things, throwing everything he could get his hands on, and slamming his body against the furniture and walls.

I saw him in that state and the only thought I had was that I had to get him away from the other children right away. I scooped him up and ran out of the daycare wing and into the church from which the daycare rents its space. I dragged him, literally kicking (I had huge bruises on my shins for weeks afterwards.) and screaming, into a small room that had an old, broken down couch in it.

He and I were in that room for the next three hours. I took this picture that day (Look how thin he was!). He raged on, and on, and on. He begged me to kill him; he grabbed my phone and tried to call the police to come and arrest him. He cycled among anger, desperate depression, and terror. I restrained him, then rocked him, then blocked the door to keep him from running away, then restrained him some more. I wept with him.

Brian and I were texting back and forth (We couldn’t talk; Carter was far too loud.), trying to decide what to do, and we just didn’t know.

Eventually, as Carter began to get tired and hungry, he was calm enough that I thought I could get him back through the daycare (I would have sneaked right out the back if I hadn’t needed to get my keys from my office.) without traumatizing anyone. I held onto him and we walked down the hall while he cried, “You have to kill me when we get home, Mommy! I need you to get me arrested! I have to die. I’m the worst stupid kid ever and you have to kill me!” Those words had a physical effect on me, like I was being thumped hard on the chest with a dictionary.

The tears were rolling down my face and into the top of my shirt and there was a similarly tear-streaked teacher’s face in the door of every classroom.

Brian met us at home and I have never in my life been happier to see anyone. I love that man for 10,000 reasons and probably more and I know I would love him no matter what kind of life we were living. When life is a long crisis, though, having a partner is everything. He came out to the driveway as we pulled in and in that moment, the situation changed from me trying to control a wildly out-of-control situation, to Brian and I working together to protect our baby from a monster.

For the next few hours, Brian and I played tag-team, alternately taking care of Carter and making phone calls. We gave him several warm baths, massaged him, and put on Little House on the Prairie, but we also had to restrain him. We listened to his raging, suicidal rants, and dispensed medicine. By 3 pm, we had given him the maximum safe dose of clonidine, an amount that, if you took it right now, would knock you unconscious within 20 minutes. Carter, just over 40 pounds at the time, was not at all sleepy, though the medicine did seem to take the edge off of his agitation.

Finally, after hours on the phone (Someone, somewhere (I don’t remember who) advised us to call the 911 and summon the police and an ambulance. WTF? The police? For a 42 pound 7 year old who had been begging me all day to have him arrested? This is our healthcare system?), we went to the emergency room at the children’s psychiatric center associated with the University of New Mexico Health Sciences Center.

This of course turned out to be the wrong place.

Not only was it the wrong place, but it was also the place where we discovered exactly how freaked out I was, because when the person (nurse? receptionist? social worker?) told us we had to go elsewhere, I lost my shit. Like, yelling at people and acting like I was the candidate for the Nut Hut, lost my shit.

Some kind soul took it upon herself to scold me for said loss of shit. We titled that moment, “The Time When Adrienne Came Closest in Her Adult Life to Bitch Slapping Someone.” My Crisis Poltergeist (Who, obviously, was in just a wee bit over her head that day.) helped me to turn away from her before I administered any kind of slap at all.

Ultimately, we found the right place, and ultimately, there wasn’t much they could do for us. You know how the US healthcare system has all kinds of major issues and only serves about half the people well? The mental health care system functions about 10% as well as the rest of the healthcare system. And the pediatric mental health care system? About 10% as well as that.

So we took our boy home and we slept in shifts. I took a leave of absence from work and expected to return when school started, but Carter was far too brittle for school. I had started No Points for Style right before The Day, but I didn’t post regularly until after I quit my job and started home schooling Carter.

It took us many, many months to get him to the relative stability he (and we) enjoys today, where there is almost always something disturbing happening but we only occasionally fear for his life. (He didn’t have any psychotic symptoms until mid-fall, but compared with those suicidal rages, psychosis isn’t so terrible.) I’m shocked that it’s been just one year, and I’m deeply grateful that my memories of last summer are distant and hazy, as if they are 20 years older than they are.

I’m a different person now than I was last summer. In some ways, those differences break my heart, but there’s no gentle way for this particular cherry to get popped. I know some ugly things now, some of them about mental illness, some about the educational and medical systems that purportedly help people like Carter (and what those inadequate systems say about us as a culture), and many of them about myself.

Some of the differences, though, are pretty great. When I read the things I wrote last summer and fall, I see how very scared I was: scared of people’s opinions, of judgment, of being scolded by educators, doctors, social workers, my family, and dozens of other people. Today? I have learned that there is no room for me to be timid. Only this illness scares me.

I’ve learned a quantity of information in the past year that would rival most PhD programs – information about drugs, the companies that make them, and the government agencies that regulate (in theory) both. I’ve learned about drug research, shady practices, and a system that serves the almighty dollar always and people only occasionally. I’ve learned that here, on the ground, there are some professionals who are tireless in their quest to help children like Carter.

I’ve learned about insurance – a great deal about insurance. I’ve learned about the brain and the ways that brains can be ill, and what those ways can tell me about Carter’s future. I’ve learned to look doctors in the eye and tell them that they are wrong, without a quaver in my voice or tears threatening to spill from my eyes. I’ve learned to push hard without alienating the people whose help we need. I’ve learned to handle most things at home, on my own. I’ve learned where my limits are, and to recognize when Brian is approaching his.

Most of all, I have learned that when there is joy to jump in with both feet. We never know when it’s coming or when it will leave, but when it’s here? It’s really, really here and we all shoot out flames of happiness.

Of this past year I can only say that I’m glad its over. We are not naïve, will never enjoy naïveté again, but we are hopeful.

I always thought virginity was overrated, anyway.