Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children

by Gina Gallagher

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Author: Gina Gallagher

Publisher: Harmony

Paperback:
ISBN 10: 9780307587480
ISBN 13: 978-0307587480

AUTHORS’ DISCLAIMER:
We are not in any way experts on parenting children with disabilities. Our goal is simply to share strategies that have worked for each of us in the event it may help those in a similar situation. If you’re different from us (i.e., you are bright or of the perfect persuasion), we advise you not to try the following at home.

On a “perfection-preoccupied planet,” sisters Gina and Patty dare to speak up about the frustrations, sadness, and stigmas they face as parents of children with disabilities (one with Asperger’s syndrome, the other with bipolar disorder).

This refreshingly frank book, which will alternately make you want to tear your hair out and laugh your head off, should be required reading for parents of disabled children. Shut Up About Your Perfect Kid provides wise and funny advice about how to:

• Find a support group—either online or in your community
• Ensure that your child gets the right in-school support
• Deal with people—be they friends, family members, or strangers—who say or do insensitive things to you or your child
• Find fun, safe, and inclusive extracurricular activities for your child
• Battle your own grief and seek professional help if you need it
• Keep the rest of the family intact in moments of crisis

Review

"One of the best parts of the book is that these two moms sound like...well, two moms. And two very funny moms at that. So you’re going to laugh (a lot), and cry (a little), and you're going to hope for the best, and you’re going to pray that someone can help their kids, and best of all you’re going to know that you’re not alone. So if you were hoping for a dry, predictable reading experience, I’m quite certain you’ve selected the wrong book. Kids with social, emotional, and behavioral challenges aren’t dry and predictable, so hang on to your hat and bring along some tissues."
—Ross W. Greene, Ph.D., author of The Explosive Child and Lost at School

“Know, work with, or love a child with special needs? If so, Gina Gallagher and Patricia Konjoian’s Shut Up About Your Perfect Kid is the latest ‘must-read’ book on the subject. The sisters, whose wit and delivery could have landed them a gig on the stand-up circuit, share facts and funny stories about raising kids with disabilities while providing practical advice and identifying helpful resources. You’ll laugh, you’ll cry, you’ll learn a lot about living well with challenge. Buy a copy for yourself . . . and two or three more for your friends with perfect kids!”
—KATE McLAUGHLIN, author of Mommy I’m Still in Here: One Family’s Journey with Bipolar Disease

“With truly masterful use of humor as a coping strategy, Shut Up About Your Perfect Kid authors Gina Gallagher and Patricia Konjoian address the challenges, the heartbreak, and the touching victories of parenting children with disabilities today. The book is a valuable and insightful resource for any family member or friend of a child with special needs. It conveys a wealth of practical information with a warmth and compassion that helps parents realize they are not alone.”
—DEIRDRE E. LOGAN, PhD, psychologist, Children’s Hospital Boston, and assistant professor of psychology, Harvard Medical School

“Anyone who has ever laughed while raising a child will love this book! Gina and Patricia really find the humor in special needs parenting—and they validate us all.” —SUSAN SENATOR, author of Making Peace with Autism and The Autism Mom’s Survival Guide

“Shut Up About Your Perfect Kid is the perfect antidote to a society obsessed with perfection. It was written by two sisters who both have children with unique challenges. Gina Gallagher and Patricia Konjoian have created an honest, humorous, and touching book that will make you laugh and cry, but most of all it will make you reevaluate how you look at other people in this world. Their journey is similar to that of many parents who have been filled with conflicting feelings about their children. But at the end of the day, instead of seeing their children’s differences, they see their determination and spirit. It’s that determination and spirit that has changed their lives in every way. It’s also what they would like the rest of the world to embrace. This book is a breath of fresh air to parents of kids with all sorts of abilities.”
—TRACY ANGLADA, executive director of BPChildren and author of Intense Minds: Through the Eyes of Young People with Bipolar Disorder

“This survival guide is a must-read for families of children with emerging and existing mental health conditions. Not only does this book provide highly practical advice, but it infuses that advice with real-life stories of families who have faced unthinkable challenges and come out on top. It offers hope to every family who has faced the dark side of stigma and the struggle of securing effective services and supports for their child. Families who read this book will truly understand that they are not alone. The road can be long and hard, but this book reminds us that on our journey, humor provides a powerful role in the struggle. Ordinary families will find themselves reading and rereading this guide as they come to appreciate the beauty of their unique and special child.”
—DARCY GRUTTADARO, director of the NAMI National Child and Adolescent Action Center

“Thank you, Gina and Patty, for reminding the world that our most cherished human qualities, courage and resilience among them, can never be captured by a test score or grade on a report card. Your book, your message, and your ‘Movement of Imperfection’ could not have arrived at a better time. Thanks to you, countless numbers of people, children and adults alike, will come to see their differences in a hopeful new light.”
—MARK KATZ, PhD, clinical and consulting psychologist, San Diego, California, and author of On Playing a Poor Hand Well

About the Author

GINA GALLAGHER is a highly imperfect mother and an award-winning copywriter. She lives in Marlborough, Massachusetts, with her husband, two daughters, and countless carpenter ants.

PATRICIA KONJOIAN is a freelance videographer who lives in Andover, Massachusetts, with her husband and three children. She has been on a diet since 1978.

CHAPTER 1

Snowflakes and Disney World

Out of the World of Parent Fantasy Comes the Scary Reality

When does it happen? That precise moment when you realize that despite your best-laid plans, you've completely and utterly lost control of your life? It's a question we often pose to each other, though in a more direct and simple way.

"Hey Pat, when did our lives take that left turn into Crazyville?"

"Oh that's easy, Gene; when we had kids."

It's not like we made plans to go there, or ever, in our wildest dreams, imagined our lives would head in that direction. Like a lot of prospective parents, we had plans--dreams and expectations for our future children's lives. We wanted them to enjoy the same happy, relatively normal childhoods we had. For us, being challenged meant finding a way not to upset our loving, generous, and sometimes forceful Italian grandmother.

"Gina, come here and finish your drink."

"But Nana, I don't like highballs. And besides, I'm only six."

Yes, easy, carefree childhoods. That was the plan, until that painful moment when we realized our children's lives--and the lives of our entire family--would never be "normal."

Gina's "Chilling" Dose of Reality

Some things just aren't funny.

The snowflake essay Gina uncovered in her then ten-year-old-daughter Katie's backpack sure wasn't. Gina had always thought of snowflakes as light and airy. But the one in this essay? It was dark and heavy.

As she read it, Gina instantly felt the weight of the dark words before her:

If I were a snowflake falling, I would be sneaky and clever, too, and when I fall I would strike. . . . After I am going to my school, it is time for revenge. As I'm walking down, I ran into the principal and knocked her over. Oh no, I ran over the principal. Oh well, I'll just leave her there. The students are working, not for long. Here I go. Fear me, ha ha ha. I charge right into the school and damage everything before my school blows up 5, 4, 3, 2, 1. Bye, school. I won't be missing it. I flow away fast. Now what should I do next now that my school is gone? World and I have a present for all, a bomb. And also one last thing: beware of me.

Oh, it's not like Gina wasn't warned about it. Earlier in the day, while she was working comfortably in her warm home office, she'd received a call from Katie's fifth-grade teacher. When the phone rang and the name of her school district flashed on the caller ID, Gina knew something was wrong. The letters may have appeared small, but to Gina, they lit up like a nuclear meltdown warning: "Danger, Will Robinson!"

Almost instantly, Gina felt a familiar burn in her stomach. "Oh no! Not again!" she cried out, startling her little dog, Max, who was napping by her feet.

Gina had no idea what the call was about this time, though she knew it wouldn't be good. They never were.

"Mrs. Gallagher, it's the school psychologist. Katie had another meltdown today."

"Mrs. Gallagher, it's the school nurse. Katie's here with another stomachache."

"Mrs. Gallagher, Katie's hand flapping has really increased. The other kids have noticed."

Over the years, the calls from the school had been relatively sparse, maybe one or two every few months. But in the first few months of Katie's fifth-grade year, Gina had received more calls than the Jerry Lewis telethon.

With a disorder that affected her ability to relate to other children, Katie was different from other kids, and the struggles of dealing with her differences were escalating along with the school calls.

Remember to breathe, Gina reminded herself as she shakily put down her cocoa cup, picked up the phone, and braced herself for the bad news that was sure to come.

"H-H-Hello?" she stuttered.

"Mrs. Gallagher, this is Katie's teacher."

"Yes, what is it? What's wrong?"

"Well, something very upsetting happened at school today."

"What was it?" Gina asked, impatiently.

"Well, for the holiday break, I asked the class to write a snowflake essay . . ."

It might have been stress or her warped sense of humor, but Gina started to giggle.

"Mrs. Gallagher, are you there?"

"Yes, it's just that I fail to see how anything upsetting can come out of a snowflake essay."

"Well, this is very serious."

"Go ahead, I'm listening," Gina responded, fighting back laughter.

"Mrs. Gallagher, in her snowflake essay, your daughter threatened to blow up the school."

"Come again?"

"You heard me. Katie wrote a snowflake essay and threatened to blow up the school."

Gina couldn't help but laugh.

"We have to take these things very seriously, Mrs. Gallagher."

"I'm sure you do, but you can't honestly think Katie would hurt anybody? She wouldn't hurt a fly. She doesn't even like eating animal crackers."

"Believe me, Mrs. Gallagher, I'm not afraid of Katie."

"You shouldn't be. I'm not sure she knows how to build a bomb. She barely has her multiplication tables down," Gina responded, tipping back in her chair and twisting the phone cord around her fingers.

"I've made the principal aware and she doesn't think we need to alert the police."

"The police? You thought about calling the police?" Gina asked, straightening up in her chair, as she pictured her sweet ten-year-old in prison stripes.

"Yes. As I said, we have to take these things seriously."

"Can I see a copy of this essay?" Gina blurted out.

"Of course. I'll send it home in Katie's backpack."

By the end of the school day, Gina was frantically pacing at the bus stop, waiting for her "Little Unabomber" to come home.

"Hi, Mom," Katie said, climbing off the bus in her usual awkward way of two feet on a step.

"Give me your backpack! I need your backpack!" Gina demanded.

"Sheesh. Here!" Katie replied, slowly shrugging it off her little shoulders.

"Hurry up! Hurry up!" Gina shouted, wiggling her anxious fingers in Katie's face.

Holding the backpack in front of her as though it were a dirty diaper, Gina raced into the house and took the backpack into her office, where she opened it, extracted the weighty essay inside, and started to read. A part of Gina had thought it was all a mistake or a joke, but when she saw her daughter's name above the dark words on the page, she was smacked with the reality of it.

Oh my God! I have no idea what's going on in my daughter's head. Is she suicidal? Does she want to hurt others?

Distraught that she could be having these thoughts about a child she'd raised, Gina immediately confronted Katie.

"Katherine, did you write this?" she asked, staring down at her daughter and using Katie's formal "you're in trouble" name.

"Yes, Mom. Are you mad? Am I in trouble? Do I have to go to the principal?" Katie asked, tears falling down her face, leaving red blotches on her sensitive cheeks.

"Katie, why did you do this? Do you know how serious this is?" Gina cried.

"Mom, I didn't mean it. I did it to be funny. The boys next to me were talking about hurting the principal and I just wanted to make them laugh."

"Why? Why would you do that?"

"I wanted to fit in, Mom. I'm different! I hate being different. All I want to do is fit in! The kids all think I'm weird! I can't take it anymore, Mom!" Katie said, bursting into full sobs.

"Oh, honey, don't say that! You're not different! You're just like everybody else," Gina said, but deep in her heart, she knew her daughter was right. And it hurt her like no other hurt she had ever experienced.

Gina hugged Katie and walked her to her room. "Honey, Mommy has some things she needs to take care of. We'll talk about this later." Then she went into her room, closed the door, and cried like a baby, silently asking God, Why did you give my daughter this disability? Why? Why does she have to suffer? And why me? I'm not strong enough for this! I can't handle this!

For the first time in her thirty-eight years of living, Gina Gallagher felt like she wanted to die. She couldn't bear the thought of being there to watch her daughter struggle for the rest of her life.

Patty's "Wild Ride" into Reality

Our mother always said, "There must be nothing worse than losing a child." Patty never understood what she meant until she had a child of her own, and thought she might lose her, though in a different way.

"Don't leave me! Come back! Mom, help me!"

"Keep walking, Michael! Don't look back!" Patty commanded her husband, tightly squeezing his hand as they walked together down the cold, sterile hallway.

She paused as Michael stopped and removed his steamed-up glasses to wipe away the tears flowing beneath them.

What are we doing here? Patty wondered to herself. This can't be happening!

She had, after all, led a happy, normal childhood. The only hospital in her childhood was General Hospital. Now here she was leaving her eleven-year-old daughter, Jennifer, all by herself in a real hospital. A mental hospital.

At that moment, Patty wasn't sure if she had lost her daughter forever. But the truth was, she had been losing Jennifer for a few years.

She actually knew something was terribly wrong when Jennifer was just eight. Patty and her family were on a dream family vacation in Disney World--"the Happiest Place on Earth."

The evening parade had just ended. Mickey, Minnie, and the gang had floated away into the sunset, leaving Patty's family and her favorite characters--our mom, dad, brother, and Gina--behind. Patty couldn't help but smile as she looked up and down the colorful streets at all the families grinning from mouse ear to mouse ear.

That is, until she was interrupted by an all-too-familiar and painful screech.

"Why do they have to leave? Why!" shouted eight-year-old Jennifer, who was sitting on the curb, hugging the Minnie Mouse on her sweatshirt and flailing her legs.

"Oh that's just great! It's even happening here!" muttered Patty, helplessly realizing that the Magic Kingdom, the place where "dreams come true," was about to turn into her personal nightmare.

It really shouldn't have surprised her. Over the past few months, Jennifer's moods had become increasingly unpredictable. She would cry for hours and become violent about the smallest things.

"Why? Why can't I wear my jelly shoes?"

"Because, Jenns, it's thirty degrees outside and snowing."

"WAAAAAHHHH! I hate you!"

She was also becoming alarmingly destructive.

"Jennifer Marie! What are you doing with my scissors and the family picture?"

"I'm cutting myself out. I don't want to be part of this family anymore."

And during that dream vacation to Disney--the one Jennifer had been excited about for months ("How many days till we go, Mom? Tell me! Tell me!")--her moods were just as unpredictable. Somehow Patty had actually thought Jenn's problems would disappear, but instead of seeing Snow White, Patty saw her daughter magically transform into Grumpy, Saddy, and Angry.

"Why do I have to go in the haunted mansion? I already have a witch for a mother."

The sadness was the hardest part. Jenn seemed to have no interest in the places the family went or the people who accompanied us.

"No, Mommy. I don't feel like riding Mr. Toad's Wild Ride with Nana!"

"How about going for a swim? Your cousins are all in the pool."

"No, thank you. I want to stay here in the hotel room."

As Patty dragged a screaming Jennifer ("I hate you! I'm going to kill myself if we leave!") through the massive crowds toward the exit to the park, she glanced over at her four-year-old son, Mikey, who was resting comfortably in his stroller. Why can't Jennifer be more like him? He's so easy! Patty thought, while Jennifer hissed, "I hate you for making me leave!" and hurled a stuffed Minnie Mouse at Patty's head.

"Jenns, honey, it's okay," said Patty's husband, Michael, bending down to pat her back. "Mickey and Minnie just have to go home now, and so do we. We'll come back. I promise."

"It's all her fault," Jennifer screeched, pointing at Patty.

"You stupid jerk, Jennifer!" shouted her "sympathetic" big sister, Jules. "Don't talk to Mom like that!"

"Jules! Please shut up!" a stressed-out Patty yelled. People in mouse ears stopped to give her looks of disgust. Oh, she knew what they were thinking--Hey, bad mother, why don't you just smack that spoiled rotten kid? Before she had Jennifer she would have thought the same thing. Now she knew not to judge. She also knew she had to get Jennifer out of there--fast. The last thing the Disney PR people needed on their happy streets was a real-life Cruella De Vil screaming at her kid.

Dragging Jennifer ahead with newfound purpose (I've got to get this bratty kid the hell out of here!), Patty tried to calm herself. She began humming her favorite Disney songs to maintain her sanity.

Both a little scared . . . Beauty and the Beast.

Twenty minutes later, when Jennifer had screamed herself into exhaustion, Patty's family exited the tram to the parking lot and walked toward their rental car. When they got to the car, an exhausted Patty climbed into the passenger seat and told her husband, "Michael, let's get the hell out of here. I can't stand to spend one more minute in the Happiest Place on Earth."

Our Neighbors in Crazyville

At the time we experienced these life-altering incidents, we thought we were alone and no one understood our struggles. Since then, we have met hundreds of parents who have experienced their own painful realizations about their children. Parents who have had to commit their children or see them locked up in prison. What's amazed us is how these people have managed not only to survive these experiences, but also to learn from them. We discovered this at our first speaking engagement when a lovely woman announced, "Yeah, my bipolar son is in jail again."

"That's terrible. We're so sorry," we said.

"I'm not. At least I know he's safe, off drugs, and getting three squares a day."

We're pretty sure her parental fantasies never involved her son in an orange jumpsuit, but somehow she's managed to focus on the positive and make the most of her time in Crazyville.

Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children

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Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children