Easy to Love, but Hard to Raise is a collection of essays from the parents of children with “invisible” but very real disabilities. As these parents share their stories, a sense of empathy and support emerges until the reader comes away feeling that they, too, are not alone. There are other people who have done those good and bad things they never thought they would do in the process of raising their children. They’ve expressed doubt and screamed out in frustration. These parents have been judged by those who don’t understand because they have never faced the challenges of loving a child and yet feeling the need to apologize for them everywhere they go.
In addition to the 32 parents who have written about their experiences, 25 experts give insight into topics ranging from ADHD to homeschooling to a child’s social IQ in each chapter’s question and answer sections. This book is an excellent resource for parents who take comfort in the very real accounts of others who have been “in the trenches.” Those who pick it up take their places in a support network for parents of children with invisible special needs.
Below is an essay titled “Dominoes” excerpted from Easy to Love, but Hard to Raise. It was written by one of the book’s editors, Adrienne Ehlert Bashista.
“Butthole dickhead asshole poopy head.” My eight-year-old son turns over the dominoes. “Asshole son-of-a-bitch my butt is a big buttcrack. I’M DONE!” he yells. “COME PLAY!”
“Just a minute,” I say. “I need to finish up dinner.”
“NO, YOU SON-OF-A-BITCH!”
I don’t say anything. I wait a beat.
“Sorry. Sorry, Mommy. You’re not a son-of-a-bitch.”
No, I’m not. I think to myself. Your grandma’s not a bitch, and I’m not her son, anyway. I’m her daughter. And what’s the definition of a son-of-a-bitch anyway? I mean, besides the literal? Asking him to wait 10 minutes before playing dominoes does not make me a son-of-a-bitch. I just think this I don’t say anything. I try to focus on chopping the carrots, and only the carrots. I’ve learned that the best reaction is no reaction. Expression, flinching, telling him to stop-all only encourage the child on the best of days. And on the worst of days he needs no encouragement at all.
Today is one of the worst of days.
My son, Little J, is not your average bear. He has a variety of diagnoses, none of which describe him exactly, but together paint a portrait of what we’ve been dealing with for the seven years since we adopted him from Russia at 15 months. According to various doctors and specialists, he has ADHD (attention deficit HYPERACTIVITY disorder–caps mine), ODD (oppositional defiant disorder), SID (sensory integration disorder), PDD (pervasive developmental disorder, which is on the autism spectrum but which our doctor says in my son’s case does not apply. Not very helpful, but whatever.), borderline intelligence (but only due to the aforementioned ADHD, SID, and PDD; otherwise they think he’s actually highly intelligent), and some kind of mood disorder, NOS (NOS meaning not otherwise specified. Translation: the doctors don’t really know). All of this due to probable fetal alcohol exposure, malnutrition, institutionalization, and possibly genetics.
That’s how he looks on paper, but in real life I use different words to describe him. Words like: wide open. Out there. Loud. Sweet. Loving. Angry. Happy. Sad. Irritated. Irritating. Funny. Too clever by half. A pain in the butt. Big trouble. Into everything. Affectionate. Gorgeous. My heart. A serious challenge.
He can spend hours creating a race car out of an appliance box but minutes destroying it in anger. He wants a kiss on the lips at bedtime. He has the worst potty mouth I’ve ever heard and the best giggle, though I don’t hear it very often. Until he was seven he destroyed every birthday gift he received by the end of the day. He loves glitter, two-hour baths, and eggs over easy. Some days he screams all day long. Some days he makes me so angry that I shake. Some days I want to get in my car and drive away. He has the most beautiful green eyes you’ll ever see. He’s tough. He doesn’t feel pain the same as you and me.
He tells me he just wants to be a normal kid.
Over the years we’ve tried a number of different techniques to try to help Little J move past the behavioral age of two, which is where he seemed to sit for six straight years. Our natural parenting instincts, the ones that worked so well for our older son, didn’t work as well with Little J. Expecting the kid to be good, then giving some kind of consequence when he wasn’t didn’t have much of an impact on him, no matter how big, small, wonderful, or horrible. When a child is overcome by impulsivity to the degree that Little J is, cause and effect has little impact. Neither do rewards, sticker charts, natural outcomes, sympathy, empathy, physical punishments, time in, time out, appeals to logic, or bribery. It took us five years to figure out the best thing for him and us: calm parents, reasonable (i.e. lowered expectations, and appropriate medication.
The day of the dominoes was missing one of these elements. The most important one. The meds.
Little J was without his stimulant medication because his doctors, his dad, and I felt his dose of stimulants was too high. We’d increased it because of problems in school: he was unable to sit and listen and concentrate and he was bothering the other students. Essentially, we’d doubled it. Instead of giving it to him when he woke up and hoping it’d last the school day, his dad and I now took turns getting up at 5:30, waking him enough to swallow the pills, and then hoping he’d go back to sleep. At school they gave him a second dose just before lunch. The increase in medicine put his daily dosage at 50% more than the maximum dosage for anyone, including adults three times his size.
Increasing his medication allowed him to sit still and do his worksheets to a greater extent, but it hadn’t taken care of all his issues in school, and in the five weeks since we’d increased the dose he’d quit eating any meals except breakfast, lost five pounds, become more and more irritable, and vomited several times. Oh, and had taken to waking up at 2:00 a.m. and watching infomercials with the sound turned down so we wouldn’t catch him doing it.
We liked that he was having an easier time in school. But the rest of the stuff we couldn’t live with.
The doctor had given us a schedule to try to wean him off his medication; lower it bit by bit so after a couple of weeks he’d be medicine free. Then she’d see him again and we’d come up with a new plan of action. Sounds great, except that once we got down low enough all bets were off. He simply had no self-control. Bad things happen on the meds. But good things happen, too. Our constant worry since he was first diagnosed at four has been: what is working? What isn’t? What’s stopped working? Why? What else is there?
I finish chopping carrots. In 15 minutes dinner will be ready. Little J has spread the dominoes out on our dining room table and is jumping from chair to chair, waiting for me to play. His dad, Mark, is in the living room watching television. It’s literally the one free hour he’s had all week. Little J has been forbidden from watching with his father because he already used up all his screen time for the day playing some kind of futuristic car-racing-shooting-bad-guys game on the computer. It’s the end of a holiday weekend. He’s hungry. He’s tired. He’s angry because of the television restriction. He’s had to wait 10 whole minutes for me to play with him. And he’s medication free.
I sit down and collect my tiles. The objective of the game is to get rid of all one’s dominoes by matching them to the domino in the center. Little J lays down a non-matching domino.
“You need to match the number, honey.”
“I’M NOT PLAYING THAT WAY!”
“But those are the rules of the game,” I say. I know arguing with him in this state is pointless, but I also had really hoped to play the game, not just toss dominoes in a pile.
“THE RULES ARE ASSHOLES.”
I sigh. I wait. A beat goes by.
“I’m sorry. I’m sorry. How do I play?”
I explain the rules for the fifth time in three days. Click clack click clack click clack go the dominoes on the glass table top as I’m talking. CLICK CLACK CLICK CLACK. He sees me getting distracted, irritated. CLICK CLACK CLICK CLACK.
“Stop. Please stop.”
“I’m not playing this way!” One by one, he throws dominoes- at me, at his brother Jacob, who is reading at the end of the table, and out the door into the hallway.
I hope I still look calm, although I can feel a familiar ache in my jaw where I’m clenching my teeth.
“Pick those up. We’ll put it away. I can’t play with you if you do that.”
He throws himself on the floor and screams.
“I JUST WANT TO PLAY! WHY DOESN’T ANYONE WANT TO PLAY WITH ME?”
I start to put the dominoes back in the container and he pops up off the floor like a jack-in-the-box and sweeps his hand across the table, knocking the remaining black and white tiles onto the floor.
I grab him, pull him into the kitchen, and sit him in a chair.
He doesn’t. He gets off the chair and lies down, bangs his head on the hardwood floor, and weeps.
I finish picking up.
“BUTTHEAD!” he yells. “I HATE YOU.”
I place the dominoes in their wooden box, one by one, slide the top on and place it on a shelf. Simple, neat, contained.
The buzzer on the stove goes off. Dinner. Little J turns over onto his back and waves his arms and legs back and forth.
“I’m a snow angel,” he says to my husband, who has just walked into the kitchen.
“Get up off the floor and quick acting so crazy.”
“I AM NOT ACTING CRAZY! YOU ARE A SON-OF-A-BITCH!”
A beat. A very long beat in which I consider my options.
I switch off the stove and grab Little J, lifting him off the floor and standing him upright in a single motion. I can be calm Zen mommy as long as I’m the only one involved but never, ever, go after my man.
I pull him so his face is inches from mine.
“Stop the snotty mouth with Daddy! Stop it! Stop it! Stop it!” Spit flies from my mouth onto his face. I’m shaking. Little J is screaming. “Stop it!”
“Mommy, where’s the jelly?” Jacob, unfazed by a scene he’s seen too many times to count, stands next to the refrigerator, door wide open.
“Where’s the jelly?” I ask. “Where’s the jelly? Find the damn jelly yourself!”
“Oooooh, Mommy said ‘damn’,” says Little J, completely recovered. I look at his tearstained face, decorated with the smug expression of a child who knows better than his parent. My hand still tightly grips his arm.
“Don’t swear, Mommy,” he says. “Swearing is bad.”
I let go of his arm and laugh. A real, honest, from-the-gut laugh. Because yes, swearing is bad, and in this one, small comment–a comment that could be interpreted by some as the utmost in mouthiness, in disrespect–Little J has demonstrated to us where he’s coming from: a place where the rules are the rules but where nothing he, nor I, nor his dad, nor his brother can do to make him follow them. At least not when unmedicated. At least not today.
Reprinted from the book Easy to Love, but Hard to Read, edited by Kay Marner and Adrienne Ehlert Bashista. “Dominoes” copyright © 2012 by Adrienne Ehlert Bashista. Published by DRT Press.