Virtually all humans will face a situation in their lives in which their needs will be deferred. Newborn babies, sick loved ones, military duty, financial pressures, work or school deadlines, and thousands of other things that I’ve probably never heard of can require us to go without.
Without what? Anything. Sleep, food, relaxation, time alone, time with loved ones (folks in the military especially suffer from this one), the opportunity to express our feelings, and anything else that we need and rely on, as human beings, to maintain our physical, emotional, and spiritual well-being.
A whole lot of the time, we do this willingly, even joyfully. When my babies were newborns, I was happy (at least in the early weeks) to be subject to my babies’ needs, to sleep in small bites and eat when I could. Hormones probably helped with that.
Short term crises are manageable. Sappy as it sounds, love gets us through. When Abbie was a year old and had pneumonia, when Jacob broke his arm and needed surgery, when Brian did his internship in California and I was alone, taking care of kids and home, for two months, I set aside my own needs for a short time and just got through.
When the issue is a mentally ill child, the crisis continues on…and on…and on. And it’s compounded (hugely) by the fact that there’s still enormous stigma and injustice surrounding mental illness. The treatment that parents of children with leukemia or congenital heart defects receive from medical professionals is vastly different from the treatment that parents of children with mental illness receive.
I want to be clear: there are many, many healthcare professionals working themselves to the bone on behalf of our children. These are devoted, knowledgeable people who really, truly give a shit about our kids and our families. I am weak at the knees with gratitude that Carter is now under the care of three of them. But they are a drop in the bucket compared with the need that exists. They swim upstream. I know that one of Carter’s psychiatrist’s major frustrations are the long waiting lists. Often, by the time she meets a new patient, she or he is much more acutely ill than when the appointment was initially made, often as long as 6 months previously. In the meantime, that child has often been inappropriately medicated by unqualified physicians. And for every excellent mental healthcare provider out there, there seem to be at least 6 who don’t care, don’t know, or both.
And sometimes we get tangled up with people (healthcare professionals, family members, friends, strangers) who refuse to believe, who think that all problems of mind are traceable to bad behavior, and in the case of children, that bad behavior must belong to the parents. This, I really must tell you, is exhausting. Brian and I are the first to admit that we have contributed to Carter’s illness. We have character flaws and weaknesses. (Can you see how wild it is, to be lauded by one group of people for being practically perfect (God must have thought very highly of you to give you such a special child!), and vilified by another? I’m neither a saint nor a demon, I can assure you!) Even the media gets in on it; next time you see a sensationalist news story about parents “drugging” their children, imagine what that feels like for us! Better yet, read this book.*
In the very worst circumstances I’m usually able to do that. When Carter tried to jump out of the car on the freeway and when he told me he was going to kill himself, though every cell in my body was begging to scream, throw up, react, I firmly, calmly told him, “I will never let you hurt yourself,” and went about the business of making him safe.
And of course, unless this is the first time you’ve ever read NPS, you know that I don’t always stay firm and calm. Sometimes I throw a coffee cup, or scream and yell, or lock myself in the bedroom. And that makes things worse. Carter’s reactions to virtually everything are huge, way out of proportion. Just a little while ago, as I was writing, Carter bumped his upper lip against a tray table he was moving. A proportional reaction might have been to thump the table down and cry a bit. “Proportional” isn’t really in Carter’s repertoire; he threw the tray table, picked it up and threw it again, screamed, kicked the door, and cussed for awhile before he came to me for hugs and first aid. This time I stayed calm (being in the middle of writing about it doesn’t hurt; mindfulness is key) and his mini-rage passed in less than 15 minutes. When I react emotionally, I escalate the situation, and Carter and I are like a snowball, rolling and gathering more anger as we go.
It does strange things to a person, to live with this level of stress and this much deferment of one’s own needs, for a very long time. My memory has deteriorated at a rate that can’t possibly be explained by aging. I’m 38 years old; I don’t expect to have the memory of a 25 year old, but I feel like I have big holes in my brain! I’m way too sensitive, too easily startled, can’t sleep constantly overwhelmed (no matter what’s going on), and a host of other things. This, from my conversations with dozens of other parents of mentally ill children, both online and IRL, is very common.
And know this: Mental illness in children (I’m not talking here about mild cases of ADHD and other relatively easily treatable conditions), while not common, is not rare. There are families like mine in every community. Acutely ill children are turned away from psychiatric hospitals every day in the US. Can you imagine, if a child acutely ill with leukemia or some other physical illness, was turned away from the hospital? One phone call and six news vans would be at the hospital in minutes, exposing the hospital for its heartless practices. The medical system does not expect anyone to handle serious illnesses at home, alone, unless the illness is a mental illness.
My child is not disposable.
Consider participating in a NAMI Walks event near you. We’ll be walking in the event here in Albuquerque to help raise money and awareness.
*Seriously, read the book. Ms. Warner has a lovely, relaxed writing style, and in spite of the heavy subject matter, We’ve Got Issues is a pleasure to read. Everyone who reads it will walk away with the ability to challenge public opinion about “drugged children,” childhood mental illness, and a host of other issues that are a constant source of frustration for parents of kids with mental illness. Plus, if you want a crash course in the severe limitations of our mental health system, Ms. Warner gives a good one. You’ll be able to join us in our quiet campaign to change public opinion, one person at a time.