The White Noise of Disability

It’s my birthday. What do I want, you ask? A little peace and quiet.

That’s all. I want the fighting to stop, and the doors to stop slamming, and the dogs to stop barking, and the hollering for “can you bring me up a whatever” to just cease for a blasted minute, because kids are loud, and ours are louder. They are a next-level kind of loud.

The loud of special needs and mental illness that never stop because they are always there with a background sound, interrupting everything in big and little ways.


Sometimes, our family’s collection of diagnosis—the ASD, ADHD, DMD, OCD, BPD—the so much of it all eventually becomes a type of daily white noise. It is so familiar, so pervasive, so “normal” that we forget that the diagnoses motivate the boys’ actions, choices, and feelings. We very nearly forget that their anxiety, fear, emotional lability, tantrums, obsessions, repetitions—they come from a clinical place. Ours are the illnesses invisible to the naked eye, the ones that camouflage our children among neurotypical children, until one of them opens their mouth, and out tumbles something about so-and-so “having the most rushing yards as a rookie after he was drafted by the Steelers in the second round with Coach so-and-so that went to whatever university in Anytown, Arizona, where the biggest hamburger weighs three pounds.’”

Or you’ve bought your sixth jug of milk in as many days because it’s all your oldest boy will drink.

Then you think, “Oh yeah. This again.”

And then at other times, you’ve gone and gotten your feelings hurt because you had been used to the noise, and forgotten where it came from.

Take the boys’ Autism and its array of symptoms.

Both boys with ASD not only take the world without ulterior motivations, they lack the understanding of sarcasm, an ability to understand things in context, and most painfully—a lack of empathy.

The boys are sympathetic, yes. A friend in the hospital? An injured animal? There are prayers, and cards, and cuddles all around. But understanding how that friend feels? No. Our boys can feel sorry for their friend, but they cannot feel sorry with their friend.

So tonight, as I was ear-deep in every kind of work, Noah very nonchalantly reminded me yet again that the white noise is there, bringing unwelcome static to our lives.

“Mom? I never really liked this house.”

“This house” is the first we’ve owned in nearly 10 years. That’s another blog post. (Actually, just buy the book.)

I was so convinced this was a prank (he had, after all, just played catch with an actual drinking glass in the kitchen while emptying the dishwasher an hour before I went all Ride of Valkyries on him from the other room), that I grinned and said, “Ha! Right, Noah.”

“No, Mom. I don’t think it’s homey. It’s old, and it’s creepy, and I don’t know why it looks the way it does, or why the people who lived here did what they did. I’m probably just talking myself into a corner here,” (note: oh, you’re DEFINITELY talking yourself into a corner, because the last I’d heard, 13 year olds couldn’t make mortgage payments), “but I really don’t like it at all.”

I was crushed.

Noah had begged, lobbied, and worked his siblings over for the room he wanted—and subsequently got. A room decorated with all the things he wanted, and big enough for a desk and all his books and sports equipment. It faces the woods. It faces the pool. And the rest of it? Decorated by his mother and grandparents while his father was hoisting things like basketball hoops and generators on his actual back like a human flatbed to get us all into the house in enough time to have it sort-of-settled before the kids started at their new school in the fall. The kids—every one of them—said they loved it. Jesse, our little Diogenes who sees everything with fresh and accurate eyes said, “Well, we all agree on this one. And we don’t ever all agree on something, so this is it.” He was right. But now, according to Noah, it was creepy.

For verbal kids with ASD? Think = talk.

Maybe he felt it was creepy at that point. Maybe he’d seen something on tv that had set him off. But at the time, I didn’t take any of this into consideration because the white noise was loud and my own brokenness—my own anxieties about this house, and getting it settled, and whether we did it all right—well, it surged up and into my face where it planted itself into something like a frown. I was crestfallen.

Until I remembered how loud it was in the room. So, I pulled Noah back to me as he was about to sprint back upstairs, (almost shouting, “hold up, kid, there’s an avalanche of hurt we’ve got to address,” but nah, because I’m awesome at parenting).

“Noah, one of the things we love about your mind is that it’s so unique. But one of the things you struggle with is empathy – “

“What do you mean?”

“You are very good at sympathy. You have a merciful spirit and can always feel bad for someone who’s suffering. But sometimes? Well, you have trouble putting yourself in someone’s shoes.”

“WHAT DO YOU MEAN?” He was rocking with anxiety.

“When you told me you didn’t like the house, that it was creepy. How do you think that made me feel?”

Here, Noah put his elbow at on the counter and his chin in his upturned hand, thinking. He picked at the counter.

“Ok. Let me more specific. You know how mommy and daddy looked for a really long time for the perfect house? I mean, months and months, right? And remember how we tried to get in a house that would put you at the very best school? And you know how you guys really wanted to be in a neighborhood with other kids, and –”

“OH!” he darted upright. “Mom! I am SO sorry!”

And here I wrapped Noah up in my arms and laughed a big belly laugh because I saw it. I saw the control dial for the white noise. I cupped his face and kissed his still-soft cheeks.

“Oh honey, it’s ok! I’m not hurt now, because I remembered how loud things can get around here, and I just needed a quiet minute to remember how wonderfully unique you are. And my job is to teach you how to be in the world, and learn more about who you are and how you think. You know, loud sometimes,” I said, laughing and squeezing his arms in the way he likes, “but always wonderful.”

Then we sat down for dinner and for a few minutes, enjoyed the fact that God had turned the volume down.