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My Son’s Brain Isn’t “Normal”

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Confession: even though I’m a writer whose livelihood depends on my knowledge and manipulation of words, I don’t know what every word means. I consider myself to have a somewhat extensive vocabulary most days (and a passable vocabulary on nights after a few glasses of wine). But recently, I found out I don’t know the meaning of one simple word.

Normal.

I’m no stranger to abnormality. From a young age, I’ve associated everything with colors. Days of the week, letters, numbers – all come with their own distinct hues. As a kid, I did this with rooms in my house, activities. When I got older, I realized I did this with people, too. Gut feelings. Emotions. At times, associations gave me little clues to help deduce what someone’s tone implied, what they might be thinking. Other times, the color didn’t really say anything at all. It was just this thing my mind did.

It wasn’t until I was in college that I found out not every mind works this way, and that what mine does is actually a specific type of a neurological phenomenon called synesthesia – a condition in which stimulation of a certain sense triggers experiences in a totally different, unconnected sense.

After the birth of my son this past January, my husband and I were told that he had suffered a grade four brain bleed in utero. The challenges he might face were dire, and life as we knew it had changed, all with those six words, “Your son’s brain is not normal.”

Since my son’s diagnosis, I’ve used my own abnormal brain to give lots of thought as to what the meaning of that vague, elusive word might be. It’s kept me awake some nights. If science doesn’t even entirely understand how brains work, how can we say someone’s “quirky” way isn’t ideal?  The Merriam-Webster Dictionary gives the short definitions of “normal” as “usual or ordinary; not strange” and “mentally and physically healthy.” Its broader definition, however, also includes the one society typically assigns to the word normal: “conforming to a type, standard, or regular pattern.”

Ah. The pattern. It’s something my husband and I joke about a lot, since we live a life about as different from the pattern as it could possibly be. But I know how bad it is to be on the outside of an in-joke, so let me bring you in on this one:

In the pattern, you’re one of only two kids. As a baby, you’re raised by-the-book, surrounded by a slew of expensive, saw-you-coming household baby products (pink for girls, blue for boys). At age 3, you check into preschool, do all your homework through grade school at the expense of play time, and make straight A’s. In high school you might rebel a little bit, but you stay out of juvie because you know your parents might ship you to military school if you don’t rein it in. You date, but either abstain or make sure not to let any little accidents happen. You go to college with the help of your parents and/or student loans, get a degree, and toward the end of your collegiate years or just after, you get married to a member of the opposite sex whose skin color matches yours. From there you can expect an easy ride through life as you effortlessly land a job and coast through to retirement, and those Montessori fools can just stay the hell off your lawn. You can even have up to two kids of your own if you want to, and perhaps a golden retriever.

Although times are surely changing, our society has a long history of portraying this pattern not only as the norm, but as the only acceptable option. By painting anything that strays from it as wrong, “normal” becomes “right,” and “not normal” becomes “wrong” — instead of just “different.”

But there are plenty of examples where the norm isn’t necessarily right, and treating it that way can actually be harmful. After all, every person is unique, just like our teachers told us even as we sat in identical wooden desks wearing similar clothing or uniforms in schools carefully structured from their curriculums to their lunch times, from types of tests to lengths of recess. Unique, like my baby son.

In him, I see something rare and special, not something wrong. Someone intriguing, not flawed. I see something I don’t understand and haven’t experienced, but that I want to know more about.  What I feel about his brain isn’t fear or pity, but awareness and curiosity. I see and sense something new I can learn from him. Something maybe everyone can.

Those are the same things it seems most people see and feel when talking or reading about synesthetes like me. They want to know more. Want to understand this quirk that isn’t a flaw, this variation that isn’t damage. And they’re drawn to it because synesthesia is safe and new. Maybe even kind of cool. Not to mention, people who have it can assimilate seamlessly into the pattern.

But another wealth of other people out there also have rare, exciting differences. Differences that, at first glance, don’t fit so neatly into society’s perception of the way everyone should be. But they don’t have to be regarded as scary, taboo, or shameful. After all, so little is known about how some of those “cool” differences manifest neurologically that, for all we know, they too could be the results of some kind of damaged or re-routed connections in the brain.

I’ll admit, even I catch myself thinking that way sometimes. I have a book coming out next year, and one of the characters is a child who could be seen as a prodigy. I love her because her intense preoccupation with numbers makes her exceptional. But her impressive depth of numerical knowledge could just as easily be interpreted as the behavior of an autistic savant – the kind that stems from a type of brain damage or damaged brain connections.

The cool kind of different displayed by a prodigy is undeniably appealing, but the “damaged” kind of different can be incredible and fascinating, too. And maybe, just maybe, when we take a close enough look at the line between cool different and damaged different, it’ll blur so much we won’t be able to find the difference between the two anymore.

colorblindcoverColby’s latest book, Colorblind, is available now from Penguin. Learn more at her website http://www.colbymarshall.com.  

Article Posted 2 years Ago

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