The Big Idea: Mary Baader Kaley
Real life experiences from authors’ lives often inform their fiction. In the case of Mary Baader Kaley, her life experience, and the life experience of someone she loves, lives at the heart of her novel Burrowed. What is that experience? Read on to discover.
MARY BAADER KALEY:
My husband and I belong to an exclusive club we never meant to join. We are the parents of a special-needs child who will be fully dependent on us for the rest of our lives, because our youngest of three children was born with a brain malformation. Based on the parts of the brain involved, doctors surmised something impacted his development around my eighth week of pregnancy when I was very sick and hospitalized. Looking at him, you can’t see the malformation, but you can’t miss his secondary diagnosis: autism.
He’s fifteen now.
The seed of what would become Burrowed began to take root when he was three—after he began to sleep more than a couple of hours at a time and the fog of sleep deprivation began to lift. I wondered what it would look like if everyone had some sort of disability, and an entire world grew from there. Some people in this world must live underground because they’re too sickly and weak to be exposed to the general population. Everyone else is healthy enough to live above ground but suffer from debilitating conditions of their minds. I wanted to explore how people with various disabilities are treated. Is it possible to see a person for his or her strengths rather than isolate them for their defining difference?
And to bring this back to the real world, another question arises—how can non-disabled people make a difference for someone with a disability? The answer couldn’t be simpler. We can have that person’s back.
After our son was born, neurologists were keenly interested in his malformation—not to treat it but rather to diagnose exactly what type of congenital disorder it might be. A Dandy Walker variant? A strange presentation of Chiari IV? Different doctors had different opinions. Frankly, it didn’t matter.
We were sent to geneticists. The specialist summarized all the different panels of DNA analysis they could run, the costs of each, and the types of mutations that could be found. I stopped her, asking, “Will knowing any of these mutations help my son?” I didn’t mean to be rude, but my child had been prodded and poked so many times already. She replied it wouldn’t help him. From that point on, we made sure any further testing or medical appointments for our son would have one goal in mind: to help him with his actual medical issues or his development in reaching his full potential. Period.
We had bigger questions, like would he ever walk? Talk? Ride a bike? Dress himself? Well, yes, he eventually did these things on his own timetable—he can walk, skip, and run. He can ride a bike with training wheels, and he can dress himself (albeit in dial-up internet speed). And after a lot of help from wonderful teachers and therapists, he can speak. No one would mistake him for an effective communicator, but he can get his point across when he wants something (usually his iPad or a snack). And he can recite every word of his favorite shows by memory, in the voices of each character. In truth, he makes us laugh every day.
Social boundaries will always be an issue though. One day when he was about six, we were standing in line at a fast-food counter and the person in front of us just received his tray of food, turned around to find a seat, and my son grabbed a few French fries from this man’s tray faster than I could react. No sooner were the fries in my son’s mouth when he reached for more, and I had to hold onto each of his wrists to stop him. The man’s eyes opened wide with a what-just-happened expression. I apologized profusely, stammering something about autism.
Thankfully, the man was understanding, nodded, asked me not to apologize, and walked off joking, “I shouldn’t have these fries anyway.” Honestly, I fought tears—not from embarrassment but from the fact that this man was so cool about everything. Not everyone was. Other people threw us side-glances as if I couldn’t control my own child. Yet the guy with a few less French fries than he paid for? He had our back.
Hands down, my biggest fear for my son relates to the distant future when both my husband and I are gone—who will have his back then? We’ve made plans for him, drawn up legal documents, etc., but no one can guarantee these things will work out. It’s hopefully a long way off, but this fear is an icy whisper that sneaks up on me every so often.
Even now, though, there are times we’re not with our son to fend for him. He goes to school, he goes out with sitters or with other family members. What happens if he snatches someone’s food and the person isn’t as cool as that guy with the fries? What if someone doesn’t like the behaviors he exhibits as an autistic person? He’s got zero ability to spout off a clever retort or defend himself against the blandest of bullies. In short, if someone wanted to hurt him, they could. And make no mistake: my son absolutely knows when he’s being teased or bullied.
Every flavor of disability exists in this world—and for the most part just like anyone else, these people chug along within their daily routines with their families and friends who look out for them. Sometimes though, they could use a little help. Small kindnesses. Maybe a few fries.
I have to trust that other people will be there for my son when I’m not around—from his underpaid teachers, school aides, and therapists—who we adore. And still, there are unnamed others, people I won’t meet but he will come across who, like French fry guy, decide to have my son’s back.
From the deepest depths of my soul, I thank each and every one of them.