Catching Up with Carter J

When I don’t write much about Carter for awhile, I’ll get notes from people asking how he is and what’s up with him. I told Carter about that yesterday and he asked, “So those people are kind of like my fans?”

“Yes, I guess they are,” I said, and that made him shoot out flames of happiness just like when he’s getting ready to spend the day with his grandma and grandpa or he’s accomplished something very difficult at school.

Then he gave me a long list of things he wants to tell you. There was at least ten minutes of material about Ninjago (that’s a commercial for Lego in TV form) and I’m going to make an executive decision and just distill that to this: Carter really, really likes Ninjago. The rest, though, is stuff that might interest those of us who are not pre-pubescent kids.

Carter went back to school a few weeks ago with almost none of the angst and drama that usually accompanies this transition. I was in Chicago for the first two days of school and we expected that that would drive his anxiety levels to a very high level, but he did great. For the first time ever, he walked into school on the first day with a few hugs and kisses from his dad, and no tears. He was all puffed up when I got home from my trip, telling me how he was scared but he could totally handle it and it was a good thing because some of the new kids were scared and Ms D and Ms B needed his help comforting them.

For a guy who has spent so much of his life in agony because he was crippled by anxiety and convinced he couldn’t handle things, this was a huge deal. He hasn’t had nearly enough opportunities to be proud of himself, so to see him feeling like big stuff was a real treat. Brian and I were shooting out our own flames of happiness to see him feeling so good.

The school he goes to is tiny and isn’t really divided by grade. The elementary kids are split into upper and lower grades, but movement between the two rooms (and some of the older kids move back and forth to the middle school room, too) is fluid. Carter spends the morning in the upper elementary with Ms B doing math, reading, and writing. In the afternoons, the two groups get together to do project-based work in social studies, science, and art. Once a day, he goes to work with Ms C for 30 minutes of one-on-one reading instruction.

He wanted me to be sure to tell you about his teachers, who he loves and adores. He’s been with Ms D (the lower elementary teacher) for four years now, and he and she have a special connection. It’s true love between them. Ms B is new this year, and Carter says he likes her almost as much as Ms D, which is pretty impressive since if Carter lists his favorite people in the world (something he does obsessively), Ms D gets a place the list more reliably than several members of his own family.

If your 11 year old child wears a top hat to school and doesn’t come in tears, you know that’s an extraordinary school.

This smooth transition back to school is a happy surprise after months of surprising stability. Spring is typically the time of year when Carter comes apart (pretty common among people with mood disorders) but last spring was the smoothest we’ve had in many years, which led to a better summer. Early fall is usually when we’re beginning to get back to baseline. Last year, we were more knowledgeable than ever about what Carter would need, so we increased his lithium early (When he drinks more water and sweats more as the weather heats up, his lithium blood level drops, requiring a higher dose.) and treated sleep issues aggressively. For the first time, we got the manic episode right at the front end, before it spiraled out of control.

Now that the weather is cooling off, he’s starting to be a little shaky (a sign that his lithium levels are a little high) so soon we’ll reduce his dose, but this makes us a little more optimistic.  After several nightmare springs in a row, we have hope now that if we could get the jump on mania once, we may be able to do it again.

There is only one symptom I can think of that is not dramatically improved. We haven’t seen one of those terrifying, seizure-like rages in a couple of years. His anxiety has not improved as much (and he has been struggling with anxiety-induced hives for a few weeks) but it is noticeably better. He’s had no more than the very occasional, minor breakthrough psychosis and he’s even sleeping well. Only his frequent episodes of irritability have resisted all our attempts at treatment, but with so many other successes, we have renewed hope.

The insurance continues to refuse him any occupational or physical therapy, and as a result he gets a little more knock-kneed and sway-backed every year (this is a result of his hypotonia, and the extra weight that his anti-psychotic medication brings with it doesn’t help). We won’t stop pressing them to provide these services, but I’m not optimistic.

Carter was napping during church and I was trying to get a picture of the hives on his hand. I don’t know if you can see those, but isn’t he cute???

At school, he likes math the best. He wants the books we read to him to have lots of action and danger, and it’s best if there are monsters. He’s glad you are curious about him and he hopes you’re having a very good day. Finally, he says that, if your kids have trouble with feelings like he does, he would like you to tell them that Carter says if you use your skills, take your medicine, and ask for help when you need it, maybe you’ll feel better and he hopes nobody has to go to the hospital today. 

Our kids with mental/emotional/social/behavioral issues may have lots of big problems, but they also have big hearts full of compassion. It isn’t always easy to be Carter’s mom, but it’s always easy to love him.

Too Vast a Project

Parenting a child with serious mental illness is easier if you can mostly ignore the future.

It was my ability to cast my mind out—out to the experiences of others and out in time—that made me. My childhood imagination was vivid but it was never populated by monsters and fairies or dreams of myself as an astronaut or ballerina. I was haunted by the real and the really possible: the devastation of a Central American earthquake; the starving Cambodian children on the evening news; fear that my sister would be killed by the leukemia with which our next door neighbor was sick; fear of my parents dying in a car crash on their way home from dinner when my sister and I were home with a babysitter.

I wasn’t inventive, but I was profoundly receptive. Oh, how I wept for those children in Cambodia, chasing and eating bugs to survive, left alone without parents to look after them. I imagined that South American earthquake, saw families asleep in their beds as their homes came down on top of them, and hoped that they were dead before they felt any pain or fear. Growing up as I did in the later years of the Cold War, and in Albuquerque (and hence at a location that would be among the first annihilated should there ever be a nuclear war), I prayed often that no one would feel compelled to push the Big Red Button. I pictured two matching buttons, one under the letters USA and one under the letters USSR, and covered them with bulletproof glass and locked them tight so they would never be accidentally pressed.

I am me because I was born porous. A million possible futures presented themselves to me, each more plausible than the last. When my aunt took her life, I knew that anyone I knew (and even I) could do the same at any time. That knowledge hung there, as real as breakfast and school and the changing of the seasons and the tattered copy of The Little House on Plum Creek on my nightstand and killing fields and famine and devastating natural disasters that killed tens of thousands.

Obsessed with the future and all the anxiety-producing potential it held, I became possessed of a superstitious notion that, if I showed the universe that I was concerned enough about a possibility, the universe would protect me from it. While I was pregnant with Jacob, I couldn’t stop thinking about how I would handle it if he was bullied in middle school. Granted, I have a history that makes me ultra-sensitive to such things, but he was still a fetus at the time.

I made some half-hearted attempts to live in the present. Who doesn’t want to live more peacefully? But the casting about that my mind does is so much a part of me, it seemed all but impossible to bring it home, to live among the people I love and the time I have been given, and so I continued to indulge in my fears and fantasies of the future. As much discomfort as was caused by my tendency to share the pain of people I don’t know and in times I cannot touch, it was also a source of inner adventure. I was loathe to let it go.

And then there was Carter. As we slogged through his first five years, Carter gathering acronymic diagnoses like a snowball rolling downhill, the future grew dark, and then darker, and finally unbearably sinister. I had worried about my children since before my eldest was born: would they be unhappy? Struggle with depression? Get addicted to drugs? Have unhappy relationships?

But this, with Carter, was something different. I began to see his face on every muttering homeless person I saw. The possibilities for his future brought me to my knees: life on the streets, drug addiction, prison, catatonia, a death like that of Kelly Thomas, an act like the one committed by Jared Loughner, and most of all, suicide.

And then, suddenly, the self-help advice about living in the present (If you have one foot in the past and one foot in the future, what are you doing to the present? Pissing on it.) as some lofty self-actualization goal was bullshit.

I didn’t need to learn to live in the present to make my life nicer. I needed to learn to live in the present to survive.

The fear still overwhelms me sometimes, but I have become adept at putting my blinders back on my face so that I see exactly what is in front of me. Assess the present situation (Is he anxious? Raging? Manic? Delusional? Too disassociated to leave the house? If he’s calm, is it a fragile calm or is it robust enough that we might make it through a fun activity?) and act accordingly. On any given night, I may sleep, and I may not. I roll with it because there is no other way. Fighting against what is will only bring heartache.

To understate the point in a most dramatic way: rolling with it is not in my nature.

Jorene used to tell me, “Don’t do battle with God. God doesn’t fight fair and God always wins.” True enough. Also true: mental illness doesn’t fight fair, and you never know when you’ll be able to beat it and when it will beat you. There is very little information out there about the prognosis for kids like Carter, and what there is, is not nice. Add to that the fact that Carter has other issues beyond his social/emotional/behavioral ones and, well… I can’t think of any good reasons to think about it.

The future still exists. I imagine Jacob working hard as a skilled craftsperson, happily creating beautiful things and enjoying his work. I envision Abbie arguing a case in front of a jury, firm and impassioned and brilliant, and driving home satisfied with a job well done. I see Spencer creating huge murals, fully immersed in his art and stepping back and finding that other people love his work almost as much as he does. I see them with lives filled with relationships and love. I also fear the other possibilities, that they will somehow settle for less than they are capable, for lives that will not burn hot and bright.

The future exists, too, in my dreams for myself as a writer and all I hope to do in the next thirty years and in the hopes Brian and I have of changing some of the laws and institutions that hurt children with mental illness.

But with Carter, I wear my blinders. Even when I prepare for his future by studying our options for when he turns 14 (the age at which a child can refuse all medications and treatment in New Mexico), and 18 (when he will have all the legal rights and responsibilities of an adult whether he is prepared for that or not), I am learning in the abstract. Puberty hangs 3-5 years in front of us and I refuse to look.

I’ve been criticized for what others view as negativity. Dream big! they say, as if that dreaming would make the dreams real. While I am far from giving up hope for a happy, fulfilling life for Carter, it is not easy to dream when almost all the evidence in front of me speaks to continued struggle.

He is very sick right now (though not the sickest he has ever been) and I am thrust again into the reality of this awful thing, this unforgiving, relentless, loathsome illness that came to us like a lightning strike, this thing that impacts almost every minute of every day of his life.

I keep my mind right here in my skull. My heart wants to bleed for the people living on the streets, most of them tormented by voices and visions and brutal delusions so much like the ones that make Carter suspicious of the water I give him and my reassurances that there are no bugs in his hair, and I won’t allow it. My heart can’t bleed for them without putting Carter’s face on the fronts of their heads. I feel that tug and I turn away, not because I am callused but because I’m not.

My mind lights on a thought—will he ever learn to read, perhaps, or will medicine and delusions rob him of his already limited cognitive ability—and I instantly yank it back. I help him sleep and reassure him when he can’t. I try to help him get out of the car without pounding all four door locks 12 times apiece. I count to ten when I’m angry and usually succeed in not screaming at him. I feed him breakfast and I feed him pills. I restrain him when necessary and tell him sternly that I will not let him hurt himself, ever. I help his brother and sister live with their brother’s constant symptoms and try to find ways to meet their needs in spite of Carter’s intense demands. Whenever possible, I put some joy into Carter’s day because he has so much less of it than the rest of us do.

And I keep my mind right here, right now.

The Future
Rainer Maria Rilke

The future: time’s excuse
to frighten us; too vast
a project, too large a morsel
for the heart’s mouth.

Future, who won’t wait for you?
Everyone is going there.
It suffices you to deepen
the absence that we are.

Pediatric Mental Illness on Parade

My friend Olive and her little girl came to visit us. (Her name is not really Olive, but her anonymous-for-the-web name for her daughter is Pickles, so I’m going with a whole relish-tray theme.)

This was kind of a big deal for me because I’ve always sworn I would never meet any of my online friends in real life. No way. I enjoy my online life and I was afraid that, if I met my virtual friends, we might hate each other. It seemed too risky.

But I’m also kind of a sucker, and Olive pretty much twisted my arm (not really), so here she came, Pickles in tow.

Pickles is a little younger than Carter, but they have a great deal in common. They both love dogs and they both have psychosis, for instance. They both enjoy cartoons and both can go from happy to raging (or terrified, or despondent) without warning.

Just two little kids but more, which is why Olive and I met each other online in the first place. In spite of what the media says, the community of parents whose children have serious mental illness is really quite small.

But the kids did great, for the most part. Carter was fascinated by Pickles’s medicine and eager to compare it to his own. It was all so new to him, this opportunity to be around another child whose experience of the world was similar to his. Every time he was alone with me, he talked as fast as he could, dissecting Pickles, telling me all the ways they are similar and all the ways they are different. He’s a surprisingly introspective person when he’s not screaming at people to stop looking at him.

The third day Olive and Pickles were here, I had to pick up Brian from work and everyone wanted to come along with me, so Carter and Pickles piled into the back seat and Spencer rode shotgun. Halfway to our destination, I heard Pickles say, “I don’t want to talk about that!” She was looking out the side window, away from Carter.

Carter launched into a long, impassioned explanation about how he didn’t mean to upset her, but if she would just listen he could make her understand because what he’s saying is very important and if she would just uncover her ears and listen to him he could make it all OK!

As he does. You know how some people see a problem and immediately start throwing money at it? Carter thinks that there is no problem too large to be solved if you just drown it in words.

Pickles refused to uncover her ears or turn and look at Carter, so he redoubled his efforts, increased his volume, and tried to pull one of Pickles’s hands away from her ear. “But I was just trying to tell you…”

She clamped her hands back over her ears, turned to face Carter with her face screwed up tight with fury and said, “I have to take some space and this is my only way to take some space. You have to let me take some space!”

Carter, his own face now growing stormy, responded, “I am not in your bubble!”

And they went, lobbing therapy-speak back and forth across the back seat at each other, trying to find the magic words learned from some doctor or counselor or behavior management specialist that would solve the problem. “You should use your skills to calm down!” “I already used my skills! You use your skills!” “I can’t because you won’t let me take some space!” “I would let you take some space if you would use your skills!”

Finally, Pickles turned back to the window, hands clamped tight over her ears, humming loudly. I could see Carter in the rearview mirror and I could see that he was approaching nuclear meltdown. Face bright red, jaw clenched, he hissed “I am so angry right now!”

Meanwhile, I was in the front seat doing my best drone imitation, speaking in a near monotone, “Everyone is OK. Let’s all take a deep breath. Carter, you look out your window. Pickles, you look the other way, out your own window.”

They weren’t listening to me, which is not surprising since neither of them was listening to anything except the pounding of their own anger.

Finally, we arrived at Brian’s office, and Spencer got in the backseat between Pickles and Carter. “You look out that window,” he said to Pickles, “and you look out that one,” he said to Carter.

And they did.

And all was quiet on the way home.

If you hear me refer to that dark-haired 14-year-old boy who lives in my house as Saint Spencer, you’ll never wonder why.

 

The Lead In My Bones

I am tired.

Weary.

I feel like my bones are filled with lead.

Do you remember when you were in college and the end of the semester was a wild rush and you studied worked wrote studied more took exams and then, after the last class, you went home and collapsed for a month? All that pressure kept your running running running and then all in a moment, it was gone, like air out of a balloon and you landed, deflated.

Carter has been on a steady upward trajectory for a couple of months, but just in the past two weeks, I’ve begun to settle into it a little bit. I’ve realized that we really are in a new place, have found stability that could last awhile.

(Should the universe see fit to allow that and for which we will be endlessly and enormously grateful please don’t smite I am not testing I do not expect this I know I am not powerful I will be happy to beg if necessary thank you for your kind consideration of my plea for continued quiet for my little boy.)

There is some part of me that is almost frantic to get as much normal living in as I can while I have the chance, to catch up and rebuild and recover what we can of the last twenty months. I want to renew my marriage, clean the house, spend time with Jacob and Abbie, deal with the horrendous yards (Oh, my God, the weeds are taking over the world!), finish my book proposal, get some more exercise, shrink my to-be-read stack of books……

While I’m at it, I’ll probably fly to the moon under my own power. Because that’s about as reasonable as the rest of the list.

In some ways, crises are easier than ordinary life. When there is an emergency in front of me, I don’t stand around trying to decide what to do; I deal with the emergency. Ordinary life, though, requires me to do more than manage the most pressing thing. I have to decide.

People? There is a great deal to be done. We’ve neglected so much while Carter has been acutely ill, I don’t know where to begin.

Sigh. And I’ll be honest (but I don’t wanna!); having a kid with a disability that makes our lives utterly chaotic has some benefits. Those benefits are excuses and I’m almost unbearably ashamed to admit that I’ve come to rely on them. Sometimes I can’t cook dinner; sometimes we can’t make it to church; sometimes maintaining house and yard is more than we can manage.

But also? I hate to cook. I love our church, but I want to sleep in on Sunday mornings (Plus, when you get out of the habit of doing something like that? It’s really hard to get back to it.). And house and yard work? Bleh.

What IF:* I lived my life and gave myself permission to take time to heal? What if I took all the pressure off and just……rested? What if I stopped listening to all the shoulds that are banging so noisily in my head? What if I gave myself a break?

What if I had a little faith in myself?

*Thanks, Mara!

“The time has come,” the woman said, “to talk of bloggy things…”

Two birds with one stone here, folks. First, you’ll know how I decide what to share with you, my lovely readers, because apparently? Some people care (and care deeply!). Second, I’ll have a link I can email to said people when they express their concern about Carter’s lack of privacy. I’ve written on this topic in vague terms here and here, but it seems I need to be a bit more explicit.

For the record, just because you call it concern doesn’t make it so. Concern and criticism are different; please take some time to learn what that difference is. I have gotten some of each and really, there’s no comparison. The people who write to me with genuine concerns make me think, and deeply, about the choices I’m making and why. I have learned a great deal from reading and responding to those messages. The people who criticize me? You just make me want to punch you in the knees.

And how productive is that, really? I’m pissed off; you have busted knees; and no one is listening to you because you? Are a jerk.

Aaand now that I’ve gotten that off my chest, let’s move on to the matter at hand.

Every writer of creative nonfiction, whether for a blog or a book, a magazine, journal, or the family’s annual Christmas newsletter, has to make some big decisions. How much should I reveal of myself? Of my family? My children, spouse, parents, friends, siblings, co-workers, pharmacist, hair dresser, and the woman behind me in the line at the grocery?

How much? And what?

I would really like to think that readers would give me the benefit of the doubt (Most do, of course, but there are always those few who need to tell me all the ways I am wrong.) and assume that, while I may make decisions that are different than the ones you would make, I love my family and am making my choices carefully.

First? Let’s address the issue of my naïveté because that one, being completely and unequivocally wrong, is easiest. I know damn well where I am and what the internet is. I don’t share all that I do because I think nothing bad can ever come of that; I share all that I do because I believe (strongly) that it’s worth the risk. I have been victimized on the web several times, most recently about four years ago when a large cloth diaper company had its gallery stolen by a fetish site. Among the stolen pictures were more than a dozen of Carter. I know where I am; I did not just fall off this particular turnip truck. The people who tell me horror stories and call me foolish, ignorant, naïve, or (in one memorable case) a “hug [sic] fucking idiot” are wasting time and key strokes.

Can’t you feel the love? The genuine, heartfelt concern?

Sorry; sarcasm is my default state.

Anyway, back to it. To those who have accused me of exploiting my child for financial gain, I thank you. If you believe that I will, someday, make money off of this? You must think very highly of me. I do hope, someday (soon? please?) to make money from this habit of using letters and words to make stories. First thing I’ll do when the buckets of cash (snort!) come rolling in? Double Carter’s occupational therapy sessions.

I am all exploitative like that.

Let’s do my favorite one next because it’s amusing, and it’s the one I’ve probably gotten most often. A direct quote from one email, “Why do you share everything about his life? Doesn’t he deserve some privacy?”

I’m a wee bit perplexed. When did I say that I share everything here?  I do not. Perhaps it seems that way to people who are raising neurotypical children; some of things I’ve written here are dramatic, frightening, even shocking. It may seem like I’ve let the blog into every darkest corner of Carter’s illness, but there is more. Some of it is worse; some of it is simply private, and I have my reasons for holding back the things that I hold back. Sometimes the reason is that Carter said, “Don’t post that!”

My bright dream is this: someday, when Carter is an adult, he and I will write a book together. We’ll tell the whole story of his childhood, his illness, all the darkest symptoms and all the shining joys, but there are things I will not share without his adult consent.

This last one is sometimes very sensitive for many, many reasons, perhaps most easily understood by people in the special needs parenting community. We are constantly walking a fine line between the optimism that keeps us moving forward, and a realistic assessment of the possibilities.

That line? So fine that it’s sharp. I cut myself on the damn thing all the time.

People want to know if I’m not hobbling Carter, making his problems known and thereby causing him future problems when he wants to go to college, get a job, find a romantic partner, etc. I’m going to tell you something now that makes most people recoil in horror because it makes me seem like a pessimist: the likelihood that Carter will grow up and live independently is small. The likelihood that he will grow up and go to college, have a career, or have a stable relationship are much smaller.

In no way does this meant that we have given up on him. We are doing everything we can to help Carter gain the skills he needs to have a happy, productive life. I don’t really care what that means; whether he lives independently, in a group home, or with us, I’m all good. Suicide, life in prison, or losing him to the streets are the things I’m interested in helping him avoid.

In some sense, it seems to me that the work of public advocacy naturally falls more to parents of children who are seriously ill. If Carter was mildly ill and had fewer other disabilities, maybe I would choose differently. If he had a better chance of overcoming his many challenges and living an independent life, perhaps I would be more concerned about outing him before-the-fact.

Kids surprise their parents every day. If, someday, this blog is a stumbling block for Carter? I will be overwhelmed with joy and I’ll do whatever it takes to fix that problem for him.

I read quite a few anonymous blogs by parents of children with mental illness and I respect that choice. But I also know that it’s very unlikely I would ever be asked this question if what ailed Carter was cancer or epilepsy. Carter has no more to be ashamed of than any child with an illness of body instead of an illness of mind (and it isn’t like those two things are different, but I’ll leave that for another day). If he suffers from stigma, shouldn’t we blame the stigma (and the society that props it up in a million ways small and large) instead of his mom and her blog?

After the very best parenting that his dad and I can offer him, what Carter needs most from me is that I do my part to change the world. More health care services, better education, less stigma, more understanding…that’s what Carter needs.

I am only one voice, true, but I am one of thousands of people who are prepared to make noise until we die or things change, whichever comes first.

They are TOO talking about blogging!