special needs parenting

By Steve Edwards.

Before I tell you about the snowy owl I saw on Christmas or why I got pulled over by the police twice in the last three days, let me say a little about my life and daily routine. I’m a husband, a father of a four-year-old boy with special needs, and I have (and my wife does, too, for that matter) a full-time job. I teach a 4/4 load as an assistant professor—writing and literature courses, mostly—at a university in central Massachusetts, and the entirety of my paycheck goes to paying for my son’s medicine, doctor’s bills and specialized pre-school. My wife’s paycheck goes toward the rest of our expenses—rent, heat, food, student loans. We make good money but barely scrape by. Sometimes we try to laugh it off, calling it our “posh special needs lifestyle.”

I get up at six and make coffee. My wife has an hour commute and is out the door about the time our son leaps from bed and starts asking what’s for breakfast. I make him toast and get together his meds. He has four of them—I think. I’ve done this routine so many times, I do it without thinking at all really. But I think it’s four. Drops go in his milk. Then a plunger-vile of another prescription. Then a teaspoon of another. Then a capsule I break open over applesauce or sorbet.

After breakfast I turn on the TV for him so I can pack his lunch, pack my lunch, then set out his clothes for the day and iron my own clothes (though admittedly, I have a gray sweater and a pair of brown cords that are in pretty high rotation because they don’t have to be ironed.) Once I’ve gotten us ready for the day, my next big task is getting my son to put on his jacket. For some reason, the thought of wearing his jacket sends my son into apocalyptical fits. He will rage and cry and curl up in a ball in the corner. I would just take him outside without his jacket—hell with it—but it’s Massachusetts, and winter, and this morning it was 5 degrees. Some days, after I’ve gotten the jacket on him and gotten him out to the car, I say, “Oops. I forgot something inside. I’ll be right back.” Then I rush inside and let out a string of profanities at the top of my lungs.

After that, I drive an hour to my son’s special preschool (where, thank god, he gets amazing care and support). Then it’s another hour commute to my job. And that’s pretty much the morning—frenetic and mind-numbingly dull at the same time. The rest of the day, I meet with students and try to appear like a normal human to my colleagues who probably wonder why I am wearing that sweater and those cords AGAIN. After work, I race home, clean up the breakfast dishes and prepare dinner for my wife and son who are both exhausted from their days, and cranky (as am I, most nights). An hour of after-dinner television or music and it’s bedtime for my son. You can imagine how well this goes over: he yells, screams, swats at us, cries his eyes out, and then—once he’s finally in bed—turns so angelic I hate to say goodnight because this is the only good part of the day. “Sing me a song, Daddy,” he says. “Sing me ‘Thunder Road.’”

And of course I do. You have to.

That’s a typical day for us in what has been anything but a typical year. At the end of the summer, I had a kidney stone and had to make a midnight run to the emergency room. Two days later, with no warning at all, our son’s preschool (a different one from where he goes now) said he needed a full-time aide or they wouldn’t allow him back. Spoiler alert: we didn’t think he needed a full-time developmental aide, and we couldn’t have afforded a full-time developmental aide even if we did. So they effectively booted him from preschool two days after my kidney stone and only a week before my fall semester started. After a mad scramble to find him a new school—because if we didn’t find him a new school, either my wife or I would have had to quit our jobs in order to pay for the services our son did, in fact, need—after all that, my wife got sick with pneumonia. She hacked and coughed and was practically bed-ridden for three and a half weeks in the month of October.

Then (yes, there’s more) after she had recovered, she slipped while carrying our sleeping boy from the car to the house and badly damaged her left knee. She was on crutches for a month, and, thankfully, only needed a cortisone shot and not full blown reconstructive surgery. But she was in severe pain every day, and it often woke her at night if she shifted in her sleep. And none of these challenges, of course, made it any easier for my wife or I to do our jobs, to work with our special needs child, or manage the bills that kept pouring in like so much floodwater in a basement.

So it doesn’t surprise me that, through it all, I forgot to get the sticker for my car that certifies it has been inspected by the state to meet emissions standards. In Massachusetts it’s something you have to do every year, and, as an environmentalist, I’m glad the state makes at least a cursory effort to protect our air and water. That’s why I drive a Prius—to lessen my environmental impact. But what can I say, Prius or not: I forgot to get the inspection. I didn’t have the sticker.

The first day I got pulled over was a Wednesday morning after a big snowstorm, and preschool had been delayed for two hours. This meant that instead of prepping for the class I had to teach that afternoon, I was watching Barney & Friends with my kid. I drove by the police car, it pulled out behind me and the lights came on.

The officer took my license and registration back to his cruiser and ran them through his computer, then returned and pointed out my expired state inspection sticker. I was frustrated by the delay in an already delayed day, and annoyed that that was the reason he had pulled me over (Didn’t he have something better to do?), but I thanked the officer for only giving me a warning ticket and was on my way. The encounter took about fifteen minutes, and I made mental plans to get the inspection on Saturday. Which is exactly what I explained to the officer who pulled me over this morning for the exact same reason. Only this time I was driving my son to an early 8 a.m. appointment with his speech therapist and we were on a busy stretch of road.

We were on a busy stretch of road at the busiest time of the morning commute. I passed the police car, thought about Wednesday morning’s episode, and breathed a sigh of relief when it didn’t pull out behind me. But then—off in the distance, in my rearview mirror: flashing blue lights. Surely, I thought, he can’t be rushing after me. He wouldn’t force the eight or ten cars behind me, at the height of the morning commute, to pull over just so he could hassle me for having an expired state inspections sticker on my Prius on the way to take my special needs child to speech therapy.

Wrong.

“License and registration,” the officer said as the cars on the road whooshed by and my son repeatedly asked why the police man was talking to us.

I handed the officer my license and registration, and I showed him the warning ticket I’d gotten on Wednesday. I told him that I had made arrangements to get the inspection done on Saturday.

“Just be sure you do that,” he said sternly, handing back my papers. “You’re two months expired. You’re living on borrowed time.”

“I’m going Saturday,” I said again.

“It only takes fifteen-twenty minutes,” he said.

I told him a third time that I would get it done Saturday and thanked him, and after we had started off down the road and the officer had turned, I banged the steering wheel and in frustration yelled, “FUCK!”

And in back my son said, “FUCK!”

Before we got pulled over this morning, I had been thinking that I would write something about Beauty and the necessity of Beauty for getting through hard times. I had been thinking about our trip on Christmas Day. We drove out to the coast, north of Boston—just the three of us—to gorgeous Plum Island and the Parker River National Wildlife Refuge. It was cold but clear. Fourteen degrees. Breezy. Along one of the roads by the water some cars were stopped, and some people had big-lensed cameras held up to their faces. They had spotted a snowy owl. At my wife’s suggestion, I pulled over and grabbed my binoculars and ran out to catch a glimpse of the bird.

Before getting pulled over this morning, I thought I would reflect on the incredible and almost healing beauty of that owl’s stoic countenance among the rustling beach grasses, the Atlantic gleaming like a dark blue crystal in the distance. I wanted to say: THIS. This matters. Beauty matters.

But after getting pulled over, that sweet thought was gone, replaced by adrenaline and anger and resentment.

I wanted to tell the officer that I didn’t have fifteen minutes to just buzz by and get an inspection, that we all lived on borrowed time. I wanted to tell my son not to say the F-word. I wanted to tell myself not to say the F-word in front of my son. I wanted my wife to again be the healthy, happy and wonderful woman I had married five years ago, and I wanted to again be her healthy, happy and wonderful husband, and not the sleep-deprived, stressed out, anxious, grumpy mess I had become. I wanted my son to just be better. To be healed somehow. To not yell and scream and cry all the time. To not be overcome by mysterious waves of gut pain. To not say to his mother in stern tones: “Mommy, you are NOT my friend! YOU ARE NOT!” I wanted us all to feel good for a change. I wanted that, and the only thing I could do was to keep driving and breathe deep and hope that that owl might glide back into my thoughts on silent wings.

*This article originally appeared on The Good Men Project.

Steve Edwards lives in Massachusetts with his wife and son. He is author of the memoir Breaking into the Backcountry, the story of his seven months of solitude as the caretaker of a 95-acre homestead along the Rogue National Wild and Scenic River in southern Oregon. You can find him online at steveedwardswriter.com and @The_Big_Quiet on Twitter.

Jennifer Pastiloff is a writer living on an airplane and the founder of The Manifest-Station.  She’s leading a Retreat in Costa Rica at the end of March and her annual retreat to Tuscany is in July 2014. All retreats are a combo of yoga/writing for all levels. She and bestselling author Emily Rapp will be leading another writing retreat to Vermont in October. Check out her site jenniferpastiloff.com for all retreat listings and workshops to attend one in a city near you. Next up is NYC in March followed by Dallas, Seattle and London.