Carter 2013

I got very tired of telling people that I do know the difference between a child with an active imagination and one who has come untethered from reality.


I stopped the car at the bottom of a long freeway exit ramp, waiting for the left turn arrow. Carter loves that intersection, home of a small coterie of prairie dogs, and he watched the hill on our left, hoping to see the critters poke their noses out of their holes.

This day, though, it was not prairie dogs that grabbed our attention but a young man, his face and hands dark from sun and dirt, his jacket and pants soiled in a way that can only come from living rough. The man was involved in a discussion, gesticulating and shouting, occasionally laughing, his conversation partner invisible to us.

Carter, eight-and-a-half years old at the time, was twisting his hair with his right hand. He watched the man for a moment, then said, “I think he’s talking to his little guys.” Little guys is what Carter calls all of his visual hallucinations, in spite of the fact that many of them aren’t little at all. The first ones, though, were quite small, an army of tiny, terrifying warriors who populated the stairs in our house. The name little guys stuck, even when some of the hallucinations were gorillas in the bushes of our backyard or amorphous beings he called darkness balls that hid under furniture but could fill whole rooms or cover the sky.

“Yes, I think he’s probably talking to little guys,” I said. I didn’t tell him that, when I see a person like this, a person who is in the grip of florid psychosis, I engage in an internal battle, trying hard not to view that person’s life as my son’s inevitable future. I give them fresh socks, lip balm, and gift cards to fast food restaurants. I write furious letters to lawmakers, begging them to protect these sick, vulnerable people, to provide funding for the programs that would restore their dignity. I pray and pray and pray that I will find ways keep my son safe and healthy; that he will stay alive; that he will sleep each night of his life in a bed; that the bed never be a cot in a prison cell; that wherever he goes and whatever mental illness may do to him, he knows he is beloved.

“He doesn’t have the right kind of medicine to make the little guys go away,” Carter said. Frowning, he whispered, “I feel sad about that.”

I feel sad about that too.

Carter was seven when his therapist told me that Carter was experiencing some delusions and maybe some hallucinations, too, though he’d been unable to asses the depth and breadth of his psychosis. I was aghast because, devastating as Carter’s mental illness had already revealed itself to be, psychosis seemed a horror beyond anything we’d imagined so far.

Psychosis is a disorder of thought, a profound disturbance in one’s perception and understanding of reality characterized by two primary experiences. Hallucinations may involve any of the senses and cause a person to feel, see, or hear things that aren’t real. Delusions are strong beliefs that aren’t true and that most people of the same culture would deem irrational.

My husband and I had a tortuous process in the first months after we knew our young son was psychotic. First, we discovered we had been disciplining Carter for things he did in the throes of delusions, things he believed were protecting his family. For months, we had been beside ourselves with frustration because Carter wouldn’t stop spitting on the stairs. He didn’t spit anywhere else, but every time he went up or down the stairs, he spit several times. As it turned out, one of his delusions was that he had super spit, and he spit on the stairs to protect us from the vicious warriors who hung out there and threatened to hurt us with the weapons they carried.

Are you sure he doesn’t just have a vivid imagination?

Did a doctor tell you that or is it just what it seems like to you?

I got very tired of telling people that I do know the difference between a child with an active imagination and one who has come untethered from reality. I got tired, too, of explaining to people that there is no part of me that wished for my child to be so ill that he couldn’t play in the backyard because there were gorillas in the bushes and darkness balls covering the sky. Mostly, I was weary defending myself, as if I had driven my little boy to a drunken doc-in-the-box for the biggest diagnoses he could think of instead of taking him to a university-affiliated, board-certified pediatric psychiatrist.

It’s been a little over five years since Carter’s therapist made the word psychosis a regular part of our family’s vocabulary, and in general we’ve been fortunate. If we can keep Carter sleeping all night, every night, and if we don’t let his anxiety spiral out of control, and if we identify manic episodes in their earliest stages and manage them, Carter rarely experiences hallucinations. His delusions break through more readily but so far, there’s been nothing dangerous, nothing that requires hospitalization.

There are so many ifs, though. I imagine that man at the freeway off-ramp has some people who love him, living with their own terrible ifs and, much worse, a host of if-onlys. I can only put my head down, do the best I know how to do for my son today, and pray we continue to be fortunate.




My 12-year-old son, his pediatric psychiatrist, my husband, and I recently embarked upon a project known in mental health circles as a med change. Every person with mental illness, and every caregiver of same, shudders at that two-word phrase. A med change is always undertaken with hopes of some kind of improvement (in my son Carter’s case, we hoped for decreased side-effects), but med change usually makes things worse before it makes things better.

The psychiatrist, Dr. S., and I decided we would accomplish the med change via a process called cross titration, meaning we would slowly introduce a new antipsychotic medicine as we gradually decreased the old one, in hopes we could avoid a reappearance of the monstrous and terrifying symptoms the old drug has kept (mostly) in abeyance for three years.

Carter was a grudging participant in the whole process. He remains traumatized by the years when his mental illness was acutely symptomatic. Moreover, he tends to impart talismanic power to his medicine, overestimating their role in his stability and underestimating his own hard work in learning and applying skills that help him cope with his challenges. Unfortunately, the particular side effect we were trying to alleviate is a serious one, and just like a parent who must buckle a screaming baby into the car seat he hates, we adults were forced to take the long view and make a change Carter resisted.

Just like the phrase med change sends a shudder up the spine of every person who has, or loves someone who has, mental illness, we also carry the terrible knowledge of the dreadful inadequacy of our mental health care system, of the knife blade we are always teetering upon. My son’s pediatric psychiatrist is brilliant and kind. She strikes exactly the right balance between respecting the gravity of my son’s illness, and also respecting the dangers of the medications she prescribes to control that illness. Together, we seek to give him the minimum effective number and dose of medicines.

With that goal in mind, when Carter and I arrived for an appointment with Dr. S. two weeks ago, we decided to continue reducing the old medicine, and keep the new medicine at the starting dose. He had tolerated the change quite well up to that point, and his dose of the old medicine had dwindled to almost nothing, so we decided to find out if the small dose of the new medicine would be enough. After all, if it didn’t work, we could always call Dr. S. and make a quick adjustment.

Enter a confluence of five potentially disastrous factors, namely Carter’s sudden and rising instability; the holidays and difficulty contacting Dr. S; the practice of medicine by checklist and cover-your-ass reactivity; my pervasive naïveté about the value of sharing all available information; and one stranger.

It went like so: I called Dr. S. She, under the time constraints of her large caseload and the imminent holidays, had one of the physician’s assistants in the university clinic where Carter sees her for appointments, triage her phone calls. When the PA called me, she said, “The notes from the receptionist say you want to increase one of Carter’s medications. Why is that?”

And I, lulled into false confidence in this stranger because she was acting as emissary to our beloved Dr. S., told her everything, including what Carter had told me a few days before about wishing he would die, but being too afraid of pain and blood to do anything to cause his own death.

Does that sound like a crisis that requires immediate action on the part of a team of highly skilled medical professionals? Does it seem reckless and appalling that, instead of rushing my child into the arms of doctors and nurses, I sat with Carter for an hour, listening to him yell and cry, then helped him into the shower for a hot soak before I gave him his medicine and sat with him until he fell asleep? Probably. Except that a visit to the ER for a psychiatric emergency is not like going to the ER for other medical problems.

I have seen things in psychiatric ERs that should curl anyone’s toes, both when I took my own child for evaluation and when I have accompanied friends whose children were in crisis. I went with my friend, whose child was diagnosed with schizoaffective disorder by leading pediatric psychiatrists and psychologists at a prestigious medical center after extensive evaluation and who was at the time acutely psychotic, to the ER, only to hear the nurse (who had spent ten minutes with her child) tell her that all her daughter’s problems were due to lack of discipline. I saw another friend walk out of the ER, defeated, after the staff told her to give her son a double dose of Benadryl to make him sleep. He had, that afternoon, tried to choke his baby brother in his crib while my friend brushed her teeth. My husband and I took Carter to the ER after he spent 9 hours helplessly cycling between paranoid rage and suicidal depression from which we could not calm him. When we finally saw a doctor, he scolded us for waiting as long as we had to see the outpatient psychiatrist, when in fact we were in month 3 of the 4 month wait that every new patient endured from the moment of first contact with the outpatient clinic until the time of the first appointment. We were sent home with instructions to give Benadryl for sleep and to keep our appointment at the outpatient clinic 4 weeks hence.

Don’t misunderstand. There are times when the ER is the only appropriate place to go, and there are times when the ER is helpful and even life saving, but based on our experiences, it is a solution of last resort.

So it was that when I spoke to the PA and informed her of the things my son had said about wishing to be dead, and she told me that I must take him to the ER immediately, I balked. I was horrified at the idea of subjecting my scared and fragile son to the staff of the ER, who are sometimes very kind but often brusque and even cruel. I am also cognizant of the criteria for psychiatric admission. Here in New Mexico, where psychiatric beds are extremely scarce, no one gets a bed who is not obviously and gravely ill, and sometimes even then people are sent home.

When I resisted the idea of taking my son to the ER, the PA informed me that she was a mandated reporter, meaning that a report to the child protection division of the Department of Health and Human Services would be in order if I did not “take my son’s health seriously” (her words) and act immediately.

I hung up the phone and tried to decide which would be more traumatic for my son: a visit to the ER, or a visit from CPS, which could result in a forced visit to the ER? Either way, we would be wasting resources, taking time away from some other child whose parents could not keep him or her safe at home. Either way, my son would not be hospitalized. Either way, my son would have to hear me lay out a list of symptoms, behaviors, and plans for protection that he is loathe to explore with strangers. Either way, we would lose.

My husband and I decided to stay loose and wait for a call from Dr. S. I paced the house, phone in hand, and silently raged at a system of care that is so callous. I am my son’s mother, except not quite. When I decide that my son is safe at home, any medical professional with whom I speak may decide that I am wrong and invite an official investigation of my capacity as a parent. When I decide that my son is not safe at home, the system of psychiatric care in my community may decide that whether he’s safe or not, I must keep him home and hope for the best.

Dr. S. called me back, and she, the doctor who knows my son, who knows my family, who knows how many locks we have in our house and how willing I am to stay up all night and supervise Carter if that is what’s necessary to keep him safe, called in the needed medicines to our pharmacy. She made clear that the decision to go to the ER or not lay with me and my husband, and that there would be a doctor on call at the clinic while she was on vacation. She could have called me back much sooner if there was not a dangerous shortage of psychiatric care providers and her caseload was more reasonable. We could avoid so much heartache if we took mental health care as seriously as we do cardiac and orthopedic and almost every other kind of care.

And imagine, if you will, the families out there, thousands of them, who have no Dr. S. Imagine standing on the knife edge with no one to catch you on either side. Imagine.


Photo by Scott Boruchov

The Richest Person in the World

The Richest Person in the World

By Adrienne Jones

Jones_BMMom! I have an idea for Valentine’s Day. Let’s get candy coins. You know, those chocolate ones? Then I’ll give them to everyone because I have so many people to love and that makes me the richest person in the whole world. Get it? I’ll give them candy money because I’m so rich!


Mom? Is that a good idea?

Mom! Why are you crying?!?

I’m about the least sentimental person this side of Spock, but those words from my 11-year-old son’s mouth hit me right in my middle. I’m the richest person in the world because I have so many people to love from any child would be wonderful. From this particular little boy, it is miraculous.

Carter was born the very unhappiest baby who grew into the very unhappiest toddler and the very most anxious preschooler. By the time he started school, he had a list of diagnoses as long as his arm, none of which seemed precisely right, and although some of those diagnoses were very big, adult, and scary, they didn’t quite capture the long crisis our lives had become. A few months before Carter turned 7, I had begun to lose hope that he would ever experience any happiness more meaningful than the momentary excitement of a new toy.

What we know now but didn’t then was that Carter suffered a prenatal hypoxic brain injury that impacted his brain from stem to stern. He has a sleep disorder so severe that, when unmedicated, he sleeps every other night, only succumbing to slumber when his body is finally powerless against overwhelming exhaustion. He has hypotonia (low muscle tone) and is weaker on the right side of his body than his left.

In spite of all that, the most arresting reality of life for Carter and all of us who love him was, he was miserable. He suffered seizure-like rages during which he begged me to kill him or have him arrested. He tried to throw himself out of the car on the freeway. I restrained him when he tried to hurt himself and dragged him off of other children when he tried to kill them. My husband and I slept in shifts so we could supervise our wakeful, terrified son. Carter lived like a dervish: never playing, never sitting, rarely smiling. He was a blur of disorganized, frenetic activity, terrified of everything and enjoying nothing.

These days, Carter gives me full permission to tell the stories of those years in any way I like, but he rarely discusses it himself. He can’t bear to think about it. By that fall, he had developed psychotic symptoms, we had removed him from public school because the staff wouldn’t stop punishing him for crying all day, and finally, we got an appointment with a pediatric psychiatrist.

That pediatric psychiatrist was Dr. S, and we had a good many more chaotic months and terrifying experiences ahead of us, but it was a turning point nevertheless. She was not the first professional to listen to us and take Carter’s problems seriously (though there were plenty who scoffed and dismissed me as an over-anxious mother), but she was the first one who took us seriously who was also qualified to help. It took months to find a drug combination that helped Carter sleep and eased his psychosis and rages, but knowing Dr. S was there, working with us, caring about Carter, and available by phone gave me hope.

Then came D, a new therapist, a young guy who looked at my son and saw not a diagnostic puzzle to be solved or a series of symptoms to be squelched, but a child with whom he could develop a relationship. Carter, always a cautious soul who loves his inner circle completely but is very careful about who he allows into that circle, trusted D in a matter of weeks. D was the one to break the news to me that Carter was delusional and hallucinating, and he was the person who stayed on the phone with me for an hour while I cried over this information. Through the fall and winter of 2009 and into the early months of 2010, he answered my questions, lent me books, and lit up with genuine happiness when he greeted Carter. He assured me over and over that, should we need to hospitalize Carter, he would spend time with him every day, and while we never did have to admit our little boy, the knowledge that D would be next to us if that happened was immensely reassuring.

As we began the slow, uncertain journey to stability (an improvement we were never quite confident about until Carter’s illness had been receding for over a year), we were gradually adding new people to our lives. First came a small support group for parents of children with serious mental illness (never underestimate the power of the presence of people who understand your experience). Next, a new school for Carter, a tiny community of children with special needs and their dedicated teachers where my son feels safe and confident enough to learn, and where he has developed his first genuine friendships. Finally, a new faith community, where most people don’t really understand but everyone is willing to listen. Soon, we’ll embark on a brand new adventure when Carter becomes a Special Olympics athlete.

Perhaps all of that sounds a little flippant, like an old fairy tale where everything was dark and scary and suddenly the sun came out and surprise! Everything is wonderful again! In fact, the road to the relative stability we enjoy has been bumpy and profoundly difficult. Our lives are, and will remain, more challenging than they would have been had Carter’s brain not been injured. In spite of all that, Carter really is the richest person in the world because he has so many people to love.

Well, maybe he’s the second richest person in the world and I’m the richest, because I get to be his mom. I got to help him buy chocolate coins and make Valentine’s cards for all the people he loves and who love him in return, and for the mom of the boy who was once filled with little except fear and rage, well…

I think I have something in my eye.

Adrienne Jones lives in Albuquerque with her husband and children, and in the early hours of the morning, just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style [nopointsforstyle.com].