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Kathleen Hannah Bond

My son's complex suffering

MY 9-YEAR-OLD son has (circle one or more, depending on training and/or point of view):

pediatric bipolar illness.

depression.

nonverbal learning disability.

language-based learning disability.

Asperger's syndrome.

ADHD.

loss and adoption issues for which he has no language.

parent who is not consistent enough.

Psychiatrists, psychologists, pediatricians, social workers, and teachers have all weighed in on his diagnoses. When he was 6 months old, even a baby sitter offered her opinion: "There's something not right about him," she muttered.

Since the age of 6, my son has been on three different atypical antipsychotics, along with other medications. He is in a substantially separate classroom at school, and not long ago was hospitalized in a pediatric psychiatric unit for three weeks. He had done fairly well for a time, and I convinced myself the problems were a phase, but it came crashing down. As one of his teachers says, "He gets this look in his eyes, and I know he can't cope." I know it, too.

My son is suffering, and I, as his mother, seem unable to make it better. He rages, and if you think this is a generic kid tantrum, you have another thought coming. At other times, he completely shuts down. Transitions are hell, and he is often glued to me. Trying to wake him in the morning is a Herculean task. Early mornings are so stressful that we are often both exhausted by 9 a.m.

Yet he can be the kindest child, with a smile that could light the planet. He is physically beautiful, so graceful, and lives in the world in a way that is deeply different than many humans. Some have called him gifted.

I am convinced that because he feels pain so deeply, he identifies deeply with the pain of others. At age 5, when we were reading a children's book about God, he said, "I don't think God is a man or a woman, because God is too big for that." His words took my breath away. That is a concept some adults never get to, never mind a 5-year-old.

Just as God is far too complex an idea to limit to one category, I ask that question about my son. His mood swings and behaviors seem to fit within the pediatric bipolar spectrum, but is it possible to assign these children a sole diagnosis of bipolar? Does such a condition even exist in children? I have no idea. His psychiatrist believes deeply that it does, but the current debate -- perhaps "war" is more accurate -- over pediatric bipolar and the use of psychiatric drugs in children fills me with uncertainty, guilt, and fear.

Uncertainty because personality and behavior rarely fit neatly into one box. "Pediatric bipolar" feels like an umbrella term that is trying to claim as its own very complex and challenging children. What is more, each discipline has its own viewpoint; diagnosis depends on who you ask. Trying to pigeonhole him is like the ultimate Wheel of Fortune; where a person starts to spin the wheel affects where the pointer stops.

Guilt and fear because I do not know if these drugs are safe. Am I poisoning my child? What are the long-term side effects?

These feelings are fueled by the death of 4-year-old Rebecca Riley from a clonidine overdose, a drug my son is on. If that is not enough of a guilt trip, parents have been told to "understand" our children more. Understanding is good, but I have spent many sleepless nights trying to understand. If that were the key, I would have figured him out a long time ago.

All I know is that his moods and behaviors have to be treated, regardless of the name someone gives to them. The rage, aggression, irritability, anxiety, and sadness overwhelm him and put him and others at risk. I can only begin to imagine how frightened he is, and I am desperate to help.

Yes, I would love to find another way to find some peace in the storm, but unless you live in my house or have walked in my shoes, please do not second-guess my decision to have my son on psychiatric drugs. It is all my family can do to get through the day without this criticism.

Clearly, there is no consensus on what children like my son need to thrive, or even survive. However, in all the noise, I can still celebrate my child in his incredible complexity and remind myself that I am trying to do the best for him. It is just an awful feeling not to know what the best is.

Kathleen Hannah Bond is a hospice chaplain.

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