I’ve been taking the train into the city to my company’s alternate set of offices one day a week for the past month or so, and The hour ride each way has given me back time to leisure read. I love to read, but am usually too busy or to tired during the week to read at night. I’ve read two books in the past few weeks. The first was The Center Cannot Hold: My Journey Through Madness by Elyn Saks, a law professor’s memoir of living through the onset and treatment of schizophrenia. The second was Shut Up About Your Perfect Kid, a humorous book by Gina Gallagher and Patricia Konjoian, two sisters raising “imperfect” kids with Asperger’s and Bipolar Disorder respectively.
Ms. Saks book was terrifying, in a few ways. One, she talks about having symptoms of anxiety and “flashes” of psychosis back to the age of 8, anorexia as a young teen, and experimentation with and treatment for use of street drugs in high school, but doesn’t feel her issues really started until she was in college. Two, she describes psychiatric hospitals as either being largely places to be babysat, or sadistic torture chambers. We’ve seen our share of sub-par hospitals, to be sure, and her story spans several decades, but there’s no way anyone who truly needs the intense treatment hospitalization can provide would never consider it after her descriptions. Third, she spends the bulk of the last third of the book trying to get OFF meds, only to fall back into full-blown psychosis every single time. Sure, there’s lip service near the end about how she’s dependent on meds and how they keep her psychosis at bay, but 60+ pages about how taking meds makes her a “failure” vs 2 about how she learned she needs to stay on meds is, in my opinion, a bit irresponsible. Plus, as she points out in just one sentence in her book, she’s an anomaly in that she has a very high level of intellect and was able to not only get her bachelor’s degree, but a master’s degree at Oxford, and a law degree at Yale – really, really, really unusual for someone with the level of psychosis she describes in her book. Her book depressed me, instead of giving me hope.
Shut Up was the complete opposite. Hardly terrifying, it’s laced with humorous quips and one-liners about dealing with “the system,” the neighborhood, and schools, doctors, and other “professionals” when raising an “imperfect” child. I enjoyed the humor of it. but, frankly, without the humor of it it would be pretty useless to me. The advice the sisters share about IEP meetings, doctors, therapists, and self-care are so incredibly entry-level basic that I feel safe in saying that the parents reading their book already know all of the how-to content backwards and forwards. I would have enjoyed the book more if it was all Erma Bombeck. I could get the rest of the content on Wrightslaw, CABF, and Autism Speaks websites.
So, now I’m cranky and cynical, and that wasn’t what I hoped my recreational reading would provide. According to my August reading, Tim will only be able to have some assemblage of a normal life if he’s a super genius. There’s no new advice or resources out there for parents like me. Psychosis comorbid with some other type of learning or developmental disorder is common, but sentences us to a life of caring for a child forever, without any type of independence. Even in Gina and Patty’s book, their daughters are graduating high school at 18 and considering colleges. I don’t mean to play the, “my kid’s more of a severe headcase than yours,” card, but it makes me think there might be a market for a book entitled, “Shut Up About Your Only Partially Damaged Kid.”
I think I’m gonna switch to Danielle Steele on next week’s train ride.