agdalena loves potatoes. Doesn’t matter what kind. Red, yellow, Idaho, Irish, boiled, baked, or mashed. French-fried is best, but she’ll eat potatoes any way you make them and any way you dress them up. Magdalena loves potatoes so much she’ll even eat them with the skins on. Not every kid can handle that. Potatoes make Magdalena smile. She loves them.
It’s good that Magdalena loves potatoes because it’s good to love something in this life, and the list of things she doesn’t love at the moment is long. She doesn’t love loud noises or broken promises. She doesn’t love waiting. Most people suffer from mild to moderate impatience, but most people don’t break down in tears and screaming when the shower takes a minute or two to warm up.
Magdalena doesn’t love rice. If she sees rice on her dinner plate, she’ll flip the dish across the room.
But the main thing Magdalena doesn’t love is laughter. For Magdalena, laughter is the worst sound in the world. She panics and shrieks. It’s worse than nails on a chalkboard. It’s like a bad dream. Laughter is the sound of Magdalena’s nightmares. This is a problem, because her older sister is sixteen—which, in case you didn’t know, is the Age of Constant Giggling. Magdalena is fourteen. Her three younger siblings are also known to laugh from time to time. It comes up and out of them suddenly, the way laughter is supposed to, during invigorating play or in involuntary response to an epic dad joke. In our house, when things are building toward laughter and Magdalena is around, someone must intervene. We do our best to co-opt or redirect laughter before it starts, because for her it is frightening. It makes her crazy. It makes her cry.
It’s not that Magdalena has no sense of humor. She can be quite funny herself when she wants to be. She does a pitch-perfect Kermit the Frog voice, for instance, but I’m always careful not to laugh when I hear it. I just smile.
“I like that, Mags,” I say. “It makes me want to laugh.” She squints her eyes in warning, as if to say, “You better not.”
This aversion to laughter is not normal—a word I use with care, because “normal” is considered unspeakable in our world. Among those who love people with disabilities and special needs, the guardians of propriety banned the word long ago, insisting instead on defining all differences of learning and behavior in relation to the “typical” world. What is normal, after all?
But the invocation of normality in this case is justified, and I must claim the privilege to use it as Magdalena’s father, that is to say, as the father of someone with Down syndrome. It’s correct to say that her reaction to laughter is not normal. Nor is it normal for parents to train teenagers not to laugh, nor for people to suppress their natural urges because someone else in the house might pitch a hysterical fit. It goes against every impulse. In our neighbors’ houses, nobody does this. When our friends visit, the way we tiptoe around laughter is viewed with uncharitable suspicion. They are right. It is abnormal.
So much of our life with Magdalena is not normal. I’m sensitive to the pain caused by the careless use of words that have aged out of acceptability. I understand why inclusive language is the order of the day. But “normal” is the right word here. I need access to it. Laughter is the sound that makes all the hard work and low pay of being a parent bearable. Laughter is the undiluted happiness of children made manifest. For parents, laughter is a brief relief from the constant motion, the many disturbances of the peace, the frequent late nights and early mornings, the ever-present feeling that you are nothing but a grumpy, lumpy old scold who doesn’t want anyone around here to have any fun.
We have to laugh. It’s our only hope.
For fourteen years, we’ve had counselors and therapists visiting us and trying to help Magdalena. We’ve done behavior charts and reward plans. We’ve tried ignoring the problem. We’ve tried talking it out and we’ve tried walking it out. In a laboratory, perhaps, we could scientifically isolate the cause of Magdalena’s issues, identify a therapeutic plan of attack, and neutralize them. Then, maybe, things could go back to the way they’re supposed to be. We could be a loose and laughing household. We could experience what typical people typically call normality.
Alas, we don’t live in a laboratory. We live in a family of seven people, each with appetites, each with moods. It’s often unruly, occasionally chaotic. We can’t always have potatoes. Sometimes we are going to have rice. People are going to laugh.
We’re not always sure that Down syndrome is the source of Magdalena’s considerable challenges, some of which you’d call personality quirks in a person who doesn’t have what she has. Magdalena has obsessions. Some of the people who come into her life become objects almost of worship. Even long after they stop visiting, she talks to them while she’s talking to herself, as she does while decompressing almost every day. These one-sided conversations, if you heard them, would strike you as repetitive. They play in loops. This is common behavior among people with Down syndrome. It’s typical.
One person who comes up regularly is a bus aide from the time before we pulled Magdalena out of school. She’d drop everything to hang out with this person, whom we haven’t seen since the bus people called the cops on Magdalena. It was the second time. Both times, Mags had been on a crying and screaming jag that wouldn’t let up. So, the bus driver and this person about whom Magdalena obsesses called the cops. They came and took Magdalena to the hospital, where the doctors determined that she wasn’t sick or injured or in need of any medical assistance. She had only been crying and couldn’t stop.
I wasn’t there so I don’t know for sure, but if I had to guess I’d say someone on the bus was laughing.
If it sounds like an unnecessary cruelty to call the police on a little girl with Down syndrome because she has auditory sensory issues that are triggered by laughter, or to suspend her from school three times because three suspensions is the only way to instigate a bureaucratic process to get her transferred to the district’s most special school, bear in mind that the people who did those things were just doing their jobs. They were following protocols. They were sorry, Mr. Hennessey, there was nothing else they could do. It wasn’t personal; it was procedural. If you wanted to be a wise guy, you might even call it normal.
The second bus episode was the end of the road for us and the public schools, so often portrayed as the normal option in a society that really can’t figure out how to handle a kid like Magdalena. We hold big grudges against everyone involved. Magdalena doesn’t. She’d love to see them all again.
Magdalena eats her meals separately from her siblings. It doesn’t seem fair to ask them not to laugh or joke with each other at the table. We want them to love their sister, or learn to love her, and it’s hard to feel affection for someone who tosses a plate full of food at you every time you laugh. The first time you could forgive. The fortieth time you might decide that Magdalena is not a nice person. It would be a reasonable conclusion.
Though Magdalena can be hard to like, she is easy enough to love. I am her father. We are her parents. Our love is not contingent. We’ll never know how much of what we observe about Magdalena should be chalked up to Down syndrome and how much is attributable to the song of her soul written by an all-knowing, all-seeing God. It can be hard to disaggregate this stuff. Like her siblings, Magdalena inherited habits and traits from her parents. Some are weird. Some are totally normal.
I love potatoes, too.
Matthew Hennessey is associate editorial-page features editor at the Wall Street Journal.