Little Monster
Schuyler will tell you that she has a little monster in her head.
When we told her that there was something in her brain that makes it difficult for her to speak and makes it harder for her to learn things and which gives her seizures, she decided it was a little monster. She calls it Polly, because that’s what she heard when we told her it was called polymicrogyria. Schuyler will tell you many things about her monster. Perhaps the most important thing she will share with you, and I’ll quote her directly now from something she said not five minutes ago, is this:
“I hate my little monster. But I like me!”
Schuyler grew up with the metaphor of her broken brain having a monster living inside it. It was more than a convenient literary device. It was a way to cope with the sudden news that our little girl had a significantly malformed brain, one that was likely to throw challenges both large and small into her path for the rest of her life. When parents first learn their child has a disability, particularly one that threatens their life, there are a number of paths they can choose, everything from acceptance to abandonment. For us, taking up the fight against a monster “with rubber swords if necessary,” as I said in my book, is a lot easier to conceptualize than trying to make peace with the fact that one part of our beloved little girl was hurting her. How do you fight a little girl’s brain? And yet when it treats her so malignantly, how do you not?
Schuyler absorbed the metaphor of the monster at an early age, I suspect. This troubles some parents of kids who, for whatever reason, have difficulty with metaphors. For some reason, Schuyler has always embraced them. For so many years, she existed mostly in an internal world that only she knew, and even though AAC helped build bridges to the world for her when she was about five, I think the use of metaphor has always provided a way to make sense of things around her. Something inside her brain is obstructing her progress through the world. Perhaps she, like her father, deals better with it if it’s something separate, something that can be resisted. Schuyler hates her monster, but she likes herself.
Schuyler hates her little monster, but she loves the big ones in the world, or at least the world of movies and books. And while she appreciates them all, it’s the ones who are misunderstood that reach her the most viscerally. Her favorite movie is 2005’s King Kong, but the last act still pisses her off every time. Same for the end of the Godzilla remake, when he’s tangled in the wires of the Brooklyn Bridge, his heartbeat fading to nothing. She has no problem with bad monsters getting their comeuppance; War of the Worlds ends exactly the way it should, as far as she’s concerned. (Except how is the son still alive? Seriously! But I digress.) But the good monsters should be free to live their monastery lives without the military shooting rockets at them.
I think Schuyler has mixed feelings about her own little monster. She shows no interest in embracing neurodiversity; she understands that Polly has fangs, and she dreams of being like every other monsterless little girl she sees. She’s beginning to understand a greater, more complicated truth, that everyone has little monsters of their own. Most of them are even less visible than hers.
To hate Schuyler’s little monster is not to hate Schuyler. It’s to take up a war that she herself wants to wage. The older she gets, the more complicated her realationship becomes with that monster. She could have named it Brainzilla or Satan or Little Green Nasty, but she didn’t. She named it Polly, a shorter and sweeter version of polymicrogyria, a word that baffles with more than its length and awkward pronunciation. I can’t help but wonder if she holds out some small hope of one day negotiating an uneasy peace with her little monster, as I do.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
Every time you write something, I learn a little more about how complex and wonderful Schuyler is.
I think you hit on a key point: Schulyer is not literal-minded like so many autistic children and adults. From what you write, it does not seem that she struggles with the same challenges with Theory of Mind. It was these very distinctions that caused you to question her original (wrong) autism diagnsis (or at least such was my take-away from reading your writing from that time.)
My point is this, it is those challenges that make the “hate disability x” so scary to autistic advocates. Folks on the spectrum (fir the most part) cannot separate. Schulyer can. She’s entitled to if it works for her. I don’t begrudge any person or group a strategy that works for them. The danger comes when we try to apply strategies across differences that may render them invalid or outright dangerous, be they cultural, neurological or physiological. The only way to avoid that is to keep talking and keep listening, and I continue to appreciate the fact that you continue to do both. I may not agree with everything you say, but I’m not going to stop having the conversation either.
I also think that Schuyler’s monster is not Schuyler. But my son’s autism IS him. If you can separate Schuyler and her monster–if SHE can separate them–then it’s easy to hate one without hating the other. But I can’t do that with my son; even though his delays are pretty mild, his delays are so pervasive (hence his PDD diagnosis) that I can’t see where they end and he begins. Which is fine with me, because I don’t hate his autism. I believe it makes him him. My job is just to help him figure out how to be the best him he can be within the constraints of the schools and other institutions in which he is asked to function…or how to change those constraints so that he can grow even more.
Your hatred of Schuyler’s monster makes perfect sense to me; it just wouldn’t work for me and my kid, in our world.
Being an adult with asperger syndrome, ADD and bi-polar disorder I know what my monsters are and that I hate them while at the same time loving myself. That, however, is my adult view of being able to separate myself from my monsters, which most autistic adults and children can’t. I don’t know why I can separate myself and my monsters when so many can’t, but I do. I think it might be not being diagnosed with any monsters until adulthood and the big one bi-polar not rearing it’s worst until my early 20’s(it appeared in a mild form when I was 15) that made me able to realize I’m not my monsters, but my monsters are just an annoying addition to me.
I’m glad Schuyler is able to see that she is not her monster. I know I personally would be scared if I couldn’t see that I am not my monsters. Sadly not everyone can do that.
I’m glad this metaphor seems to work for you all. I used to think sort of similarly–directing all my anger at my son’s struggles toward the malfunctioning parts of his brain and/or the responsible combination of development and genes. But honestly, the anger was overwhelming and unhelpful to me and our family. The more I focused on “fighting his monster”, the more time I spent angry at the unfairness of it all. For me, viewing our situation more holistically without the sharp divide between Son and Disorder has been tremendously helpful. I certainly don’t begrudge anyone whatever works for them–we’re all different after all. But for me personally, letting go of this particular metaphor was a very big step in the direction toward Peace.
My almost 5yo daughter has mild cp that has led to significant speech delays and dysphagia (difficulty swallowing). Like Schuyler, her appearance is “normal,” but being extremely small (never been on a growth chart) and unable to communicate/swallow, has it’s challenges when she is with her peers. My daughter has finally come to the understanding that her “swallow’s broke.” This challenge, along with her speech, are very easy to separate from who she is as a person. I completely love the metaphor you use and that Schuyler has named her monster!! I just may have to help my daughter find a name for the monster that lives in her brain!!!