As a gifted lady whom has suffered an abusive childhood and its effects to being a mother of 7 very gifted children. I will never claim to be a person who didn’t actually have significant difficulty in my experience of living. I definitely struggled for many years. I have scars and records, memories sharp and foggy of things that, in retrospect, I am lucky to have survived. I did though, and I have recovered from my diagnosis of a severe and persistent mental illness. This does not mean that I have learned to “live with my illness” or to “manage it.” This means I have recovered from the idea that the way I experience the world is an illness. None of this is to say that people do not have difficult times. Some people experience the world in ways that can be very challenging and, at times, extreme for them. This is not to say, even, that some people’s brains don’t work differently than others. In fact, no two people experience the world in the same way. I was acting out my pain from my abuse suffered as if a switch got flipped and all the feeling I had ever felt…all the rage and grief and fear…it all came out at once and I’d always end up crying, wanting to go home, even if I was home. It wasn’t until 20 years later that I learned that the way I process information affects how I feel and that not everybody’s brain works like mine. Nobody’s brain works the same way. Nobody feels the same way about things. We are all in our own little worlds, together alone. For some, the world is a loud and clumsy place, full of laughter that isn’t understood and a deep observant sadness. For others, clothes hurt and school is a nightmare. The lights buzz. The cafeteria stinks. The kids are mean and the teachers are uninspiring. For some, it is all very confusing and hard to keep up with. The frustration alone brings tears and anger. No parent wants to see their child struggle. I am the mother of children that sometimes remind me a bit of myself as a kid, kids who are bright and sensitive, who feel things deeply and who sometimes aren’t easy to comfort when they have simply had enough. I understand how it feels to not know what to do, to see that your child is struggling and to find that efforts to “make it better” seem to cause more upset. I have made appointments and I have filled out long questionnaires and have watched for signs of this and for signs of that. I have stuffed a crying child into the car seat and I have sat in the waiting room. I have tried to be the calm, perfect mother as I watched the blood be drawn, ruling out any and all diseases and syndromes for which there are actual tests. I have sat across the desk, like my own mother did, and listened to the doctor tell me all about a child who she had met approximately eight minutes prior. It wasn’t radical holistic righteousness that turned our family sharply away from pediatric behavioral interventions, it was a quote, found in the book Not Even Wrong, by Paul Collins, in which he writes about his experience as the father of a child with autism. I was reading everything I could get my hands on and some of what I read was terrifying and some was hopeful. This helped the most: “…the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” There aren’t easy answers. It is not as if the parents of neurodivergent kids can structure the perfect educational environment and can create safe social spaces that respect autonomy and diversity of communication, interests, and experience. Can they? In most cases, no. The demands of modern culture and economy depend on monolithic public schooling, often in environments that are assaulting to the senses and damaging to self-esteem. Can families find skilled and conscientious supporters to help empower their children to be confident in the worth of their differences and to find self-determined ways to navigate challenges? Can parents become, themselves, skilled and conscientious supporters of their children? Can parents of a child who is struggling turn to anyone other than a mental health professional? Yes. They can turn to their child and they can look at him or her and they can ask them, “What do you need?” Often, children don’t know how to articulate what they need. However, they will try to tell you. Sometimes, when children “act out,” they are trying to tell you. It is safe to assume that all children need love, they need security. They need trust, in both themselves and in their caregivers. As someone with lived experience in this area, it is very difficult to trust people who call the police to take you away because they don’t understand what is going on with you. What does it feel like when the people you most need to believe in the strength of your future and the sincerity of your struggle sit down and inform you that there is something imbalanced in your brain and that it means you’ll probably always struggle and that it means, also, that people may be scared of you, because they don’t understand. Do you understand? The idea of mental illness creates and sustains stigma, by informing us that people who struggle with their humanity in ways outside of the acceptable range of normality are inherently flawed, What are the costs and benefits of investing in a pathologized view of your child? What are the other options? We now know that even people who have been diagnosed with “severe, persistent mental illnesses” can and do recover. We know, also, that many people live in the world in ways that are outside the boundaries of normative function but which suit them just fine. People are beginning to realize that the “progressive” nature of many mental illnesses, the tendency for people to get worse rather than better, is very likely due to the damage caused by pharmaceutical therapies and profound psychosocial abuses. The voices of the people harmed by medical model interventions are largely disregarded by the biopsychiatric industry, as are the voices of the people who’ve recovered from difficulties that they were once told they could not recover from, that the best they could hope for was to “stabilize” and to “manage.” Parents can’t stand it when their children are unhappy. It hurts parents to see their child struggle. They want to make it better. They want it to stop. Parents will do anything to try to help. They will miss work, they will fill out forms. They will take out loans and they will even, if asked to, hold their own child down, believing that it is what must be done to help. I don’t think parents realize the exchange they are making when they buy into ideas and treatment that, over time, have the potential to erode some very basic relational/trust bonds between child and caregiver. When I was in the midst of recognizing what had gone wrong in my story, I angrily told my mother, “You believed the professionals over me! You even trusted the professionals over yourself…and they didn’t even know what they were talking about!” In my home, we don’t use the term mental illness, other than to occasionally remark that it is a shame that some people choose to see the human condition, rare and wonderful in each of us, as something that is sick. Our lives have been written in relation to the system driven constructs of mental health for too long. Who is to say, at this point, that the peg doesn’t fit because it is square. It is entirely possible that the hole was cut the wrong shape......
Posted on: Thu, 06 Jun 2013 13:43:06 +0000
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