“Bless your heart, you‘re burdened,” is usually the comment from strangers to me after my twelve-year-old son, Joseph, has a meltdown. In the past, I almost fell over myself in my haste to offer an embarrassed apology and scoot away from what seemed like a throng of people as quickly as possible.
Now an older and wiser me, with teeth gritted, smiles and offers an explanation for Joseph’s actions–he has autism, and something in his surroundings has over-stimulated him, thus the meltdown. Like an infomercial host, I explain ASD–what it is, symptoms, and how things in our environment might affect someone with autism. Sometimes, that’s followed by a sad look from the other person, and they mutter, “My, my…you didn’t ask for that, did you?”
In those circumstances, I bite my lip to keep sarcastic, almost hysterical laughter at bay. The stranger meant well. She was offering compassion, something often lacking in our society. But no, I didn’t ask for my child, my heart, to have a neurological disorder.
Having a child on the autism spectrum is comparable to a roller-coaster ride. There are the up moments. Like when your child says for the first time “Mama, I love you,” and you’ve waited seven years to hear it because he’s been almost completely non-verbal. Or countless hours of teaching and tears (because there doesn‘t seem to be comprehension), trying to get him to kick versus dribble the soccer ball into the net. But at the state Special Olympic games he kicks it in on the very first try.
Then there are the times when you’re at a restaurant, and your child is having a screaming, kicking fit because the waiter cut the burger in half, and Junior never eats his burger cut in half (kids on the spectrum like routine). Every eye (it seems) is focused on your family, and you wish you could crawl into that darn sandwich and hide from the world.
But, this has been a journey of learning for me. I have discovered how to look past physical appearances and abilities and see people’s determination and beauty within. Though I’m a perpetual work in progress, I have been a scholar of lowering the walls, practicing empathy, moving past emotional scars, and loving with my whole heart.
And Joseph has become my biggest teacher. He has taught me to appreciate the smaller things in life: the majesty of the sun setting on the hills; the magic in a bird’s song; delicious aromas of the earth as it awakens in the mornings. Nothing is to be taken for granted, especially the sweet, sing-song chant of a child’s conversation.
One Saturday, Joseph walked into the living room and watched as I danced to “Uptown Funk.” Wordlessly, he stepped in front of me and began stomping in time to the music–an accomplishment for someone on the Autism spectrum. Tears clouded my vision. I was grateful when the song ended because I have all the grace of an ostrich on ice and I wasn’t prepared to spend Saturday morning in the emergency room.
Joseph chewed his finger as he studied me. “La vita e bella, Mama?” he questioned, reading the front of my shirt.
“Yes Joseph, La vita e bella. It means ‘Life is beautiful.’”
And it is, even when it’s a roller coaster ride of emotions.
Debbie Roppolo is an award-winning humor writer, the author of the award-winning children’s activity/cookbook Amelia Frump…is Cooking Up a Peanut Butter Storm, the creator of Amelia Frump and her Peanut Butter Loving, Overactive Imagination, and He’s My Brother. Her parenting humor book, The Toilet is Overflowing and the Dog is Wearing My Underwear (working title) will be released by DWB Publishing later this year. Roppolo lives in the Texas Hill Country with her husband and is the parent to two active boys, a couple of equally hyper dogs, and a senile older cat.
I was a month into my final internship for a Master’s of Social Work, barely seven weeks pregnant with our second child, and in the midst of a move to a new home. My daughter was attending a co-operative preschool that required parents to volunteer in the classroom. It was after such a volunteer day that my daughter’s preschool teacher approached me.
Ms. Avie was a gentle and soft-spoken, with hair like steel wool pinned back by two barrettes on the side of her head. She was heading out the door in her beige raincoat with burgundy tote bag in hand. I was cleaning up from the day’s activities.
“Lucy has been very sensitive lately,” she said, pausing by the door to look at me. I stopped sweeping.
“She’s a sensitive kid,” I said, then resumed my task of sweeping up stray bits of goldfish crackers, glitter, and dried play-dough into a pile.
“There have been lots of tears,” Avie paused. “She asks for you a lot. I think she misses you.”
How could she miss me? I was right there, volunteering at her preschool. I wasn’t even working full time. I read her bedtime stories every night.
The classroom debris on the floor began to blur, but I stared at it anyway. I couldn’t look at Ms. Avie. I couldn’t let her see me cry.
“I’m trying my best.”
“I know,” Ms. Avie said and then left the room to go home.
I had a difficult childhood, punctuated by memories of a drunk father and desperate mother all while submerged in a foreign culture. By the time I was ten years old, we had lived in Panama, Guatemala, Costa Rica, Puerto Rico, Virginia, Arizona, Texas, and Minnesota. My parents were never violent or physically neglectful; in fact, they were as loving as they could be. But, they were so wrapped up in their own drama that they were rarely emotionally present for their children in the way I wanted to be for my own.
I’ve spent every Thursday morning in therapy since my daughter was born, learning how to be an emotionally responsive parent. I’ve learned how to recognize when my child is scared or angry and how to respond to it. What’s more, I’ve learned how to recognize when I’m scared or angry and how to respond to myself. These emotions were like outmoded cellphones to me. I knew everyone had them, but I didn’t know what to do with them. Stuff them away and ignore them? Save them up for one particular day?
In my family, we denied such emotions existed just as we denied the severity of my dad’s alcoholism. It has taken a lot of hard work to identify these negative emotions and to break the familial cycle of alcoholism and emotional numbness for the sake of my sensitive little girl.
But there are days when I feel like I’ve deliberately walked right back into my family’s insanity, days when all of my self-reflection and improvement disappear. Never was this more apparent to me than on that chilly October day in Ms. Avie’s classroom.
I had been so preoccupied that I hadn’t noticed Lucy missed me. Of course she was hurting right now. Everything was changing in her young life. An upcoming move, mom away all day at her new internship, and a baby on the way. Why hadn’t I thought of how hard this would be on her? And on me?
Despite having just bought our first house and having a new life growing in my belly, nothing seemed right in our lives. Our dinner all week had been boxed macaroni and cheese because it was the only thing Lucy and my queasy, pregnant tummy could agree on. I had missed a birthday party for a good friend because I forgot about it and went to bed early that night instead. I was distracted during the few hours a day I did spend with my daughter, finishing up a paper for class while she was plopped in front of PBS Kids, or checking my smart phone for e-mails from professors while we ate dinner together. I couldn’t focus on her the way I wanted to and certainly not the way I had been taught to in therapy. I had to finish graduate school.
I was already six years into a program that should have taken two years to complete—two years if you don’t have a baby, move three times, and transfer your degree to a new university halfway across the country. I was one of the oldest students in my class, a haggard thirty-year-old intern amongst a sea of young, thin, idealistic coeds. And now I was pregnant with a second child. If I didn’t finish this program now, I knew I would never finish it.
So every morning we went through our routine. We woke up, ate breakfast, dressed, drove to preschool, had an elaborate drop off ritual which included no less than ten kisses, and then I headed to my internship where I sat alone in a windowless office and proofread hundreds of pages of educational advocacy handbooks. And every evening we would do the routine in reverse—leave internship, pick up preschooler, drive home, eat dinner, go to bed. After my daughter was asleep I would go to class, read assignments, or write papers.
Our routine repeated in this way – day after day – for nine months. Was I happy? No. But I was finishing my degree. Were we eating healthy meals? No, we were eating easy meals. Was I making up for lost time on the weekends? No, I was writing papers, doing group projects and leaving her in the hands of her very capable father. Did Lucy embrace that her mom needed to do something for herself and therefore gain a new sense of independent maturity? No.
I had to accept that I couldn’t respond to Lucy’s every hurt. But that didn’t make me emotionally unavailable or numb. All the work I had done to avoid becoming my parents wasn’t undone, because even in the midst of the last stretch of my marathon of graduate school, I could still see her hurt. I couldn’t fix it or make it better. I didn’t minimize it or tell her to get over it. I simply acknowledged it. “Yes, it sucks to have a mom who was once one hundred percent focused you, but now has to focus on other things too. I can’t imagine how hard that transition would be.” I let Lucy own her feelings of grief and loss, even if I didn’t understand them. Because, honestly, I didn’t understand them. My mom was never one hundred percent focused on me. And now, as a mother myself, I can understand why. How could she be focused exclusively on my sister and me with so many other more basic needs unmet in her life?
On a recent visit to see my aunt in Minnesota, she pulled out a box of old letters my mom had sent while my family was living in Mexico. One particular letter caught my eye. It had been written on my sister’s and my first day of school in Mexico City. I was seven. My sister was five. My only memory of that day was arriving at school the only children not in the school’s gray jumper uniform with a white peter pan collar. We had no idea where we were supposed to go or who our teachers were. We stood frozen in the bus loop and cried until an adult helped us. I thought my mom had abandoned us that day.
In the letter to my aunt, I found a different story. My mom described how she tried to board the bus and ride with us to school to help us buy a uniform and get to class, but the school bus driver told her that wasn’t allowed. In my mom’s limited Spanish, she couldn’t explain to him why she needed to go with us. At that point, we didn’t have a car, and it wouldn’t have mattered if we did, because my mom didn’t have a Mexican license. My sister and I had to get to school, and the bus was the only way. After sending us off, my mom returned to our small apartment and cried. She too saw our hurt.
At night with Lucy, the pinnacle of our daily routine was a reflection and prayer together. I lay on the carpeted floor next to her toddler bed and listened to her tell me of the good things and the bad things that had happened in her day. The “bad things” were usually a little sing-song chorus that went like this, “Ophelia and Holden and You”—a complete list of people she felt had slighted her in life. Ophelia was “bad” because she refused to give up purple as her favorite color, and according to Lucy, no two kids could have the same favorite color. Holden was “bad” for hitting Lucy on the head with a plastic shovel over a year ago. I figured if those were the worst things that had ever happened to Lucy, I could stand next to them and feel unashamed. I knew I wouldn’t be in the “bad” category forever. After our prayers I would hug her, kiss her and reassure her that I loved her deeply.
I bought my cap and gown on the same day that I bought the new baby’s car seat. At thirty-eight weeks pregnant, I walked across the stage and accepted my Masters of Social Work diploma. Glued to my mortarboard was the “I Love Lucy” logo from the 1950s T.V. show and a sign that said, “Baby on Board.” I had made it. And for the first time in a long time, I felt another feeling I was unaccustomed to—joy.
K.T. Sancken has worked as an education reporter for the Fluvanna Review, and her work has been featured in Charlottesville Family Magazine as well as GreatMomentsInParenting.com.
I am ashamed to admit that my technology Achilles’ heel has become the television remote control. I’d rather rent a DVD and play it on a portable than try to figure out how to navigate around the TiVo and cable settings. There are usually three remotes jockeying for position on my sofa. At last count there were eleven in the fake wooden book on my coffee table where I hide batteries and other small objects that I’m too lazy to put away, like candy wrappers.
Despite the challenge, every once in a while, in between work and housework, I like to plunk down on the sofa and channel surf. Just in case there’s some breaking news about, say, a giant python snake found in a residential toilet in Broward County. I grab the only remote I know how to use. I punch the ON button. Four underscore marks appear on the screen.
Beneath the underscore marks it reads, “Enter Password.”
“What the heck?” I say aloud.
My dog Slugger’s ears jump to attention as if I’ve shouted the word ‘cat.’ I think: Wishful doggie thinking. I can relate. I’d like a little excitement in my life, too. I take a chance and punch in four digits. It’s the same code my husband uses for all the passwords in the house and bank accounts.
Asterisk, asterisk, asterisk, asterisk.
Hmmm. No dice. I try again. And again.
Something about this activity seems familiar. I shout, “Jason!”
My son Jason is to the Koenig family as Newman was to Jerry Seinfeld. He is the Road Runner to my Coyote. When something wily is afoot, Jason is usually the person behind it.
We’ve had a bad summer. Both teenage boys refused to participate in organized activities. The punishments for not contributing to household chores have been doled out like free giveaways at a basketball game. So far this summer Jason has lost his computer, his Xbox, and the sheets on his bed. I checked with a professional to ask how far we could go before the Department of Health and Human Services could get involved.
Jason swaggers into the room. “Can I help you with something?” The ends of his lips turn up like a Cheshire cat.
Suddenly, the dimples in this cheeks don’t look so cute anymore.
I thrust the remote toward him. “Unlock the remote. Do it now.”
He raises a brow. “And what do I get in return?”
I am tempted to say, “You get to live.”
Instead, I firmly recite the policy that’s served me and thousands of other parents so well over the years. “I don’t negotiate with teenagers. However, if you input the password, I will be happy to arrange a mutually beneficial date and time when we can have a dialog that might help us reach a common consensus about how long you can live in my house.”
His shoulders relax a bit. His head cocks to one side. I figure he’s trying to parse all the language.
“And by the way, I have the keys to your car.”
This he understands. The bluff works, and we’re back to my regularly scheduled program.
Parenting tools should include a set of scales. On the one hand, you’ve got to give props to the clever child for being resourceful. On the other hand, you wonder if they’re going to grow up to be an executive who embezzles money from pension funds.
But no matter how much you want to watch Desperate Housewives on Sunday night, no matter how desperate a housewife you’ve become, you can’t cave to their demands.
If all else fails, take a lesson from Looney Tunes. Did Wile E. Coyote stop trying to catch the Road Runner? No. Did the Road Runner succeed in outsmarting him at every turn? Sure. But the Coyote never used that as a reason to give up. And neither should we.
Tina Koenig’s short story “Teens Take Flight” was included in The Ultimate Mom (HCI Books, 2009). She’s covered the book beat for Miami Art Zine, writing reviews and features. Her essays and short stories have appeared in Literary Mama as well as other journals and publications. She is the author of the Middle Grade mystery, “A Case of Considerable Consequence,” published this year.
It was a blue sock, sized six to twelve months, and it had a faux mary jane stitched onto the foot. Adorable, but not irreplaceable. My daughter, then a ruddy eight-month-old gumming the shoulder strap on her stroller, kicked it off somewhere on Lakeshore Avenue in Oakland. We’d been browsing, killing the long hours in the afternoon after her nap and before the return of her father from work. An older woman pointed out its absence, perhaps hinting that I ought to have kept my child better shod in the chilly March weather.
I can find it, I thought. We haven’t been in that many stores. It’s just lying under a t-shirt display; I’ll peek in the last few shops, grab it, and be on my way. Besides, where do I have to be?
But it wasn’t in the last shop, or the one before, or the one before that. It wasn’t in the street, it wasn’t on the sidewalk, it wasn’t helpfully laid on top of a newspaper rack or the lid of a recycling bin–it was nowhere. I even asked a few people if they had seen it, aware of the fact that only a crazy person would go to this much trouble over a stupid sock, but no one had. I went home in defeat, my baby’s one foot a little colder and me, angry about the sock and angry at my anger about the sock.
Why did I care? It wasn’t the sock–the mary jane socks had actually come in a 3-pack, and I had two other complete pairs at home. Blue’s not even my favorite color. The sock was more of a message, a spitball from the universe, landing on my forehead and reminding me that, even though parents are supposed to anticipate and control everything, sometimes you can’t do a damn thing about anything.
The first thing a woman will hear when she gets pregnant is, “It’s not about you anymore.” This statement is always accompanied by an elbow poke and a wink, as though your selfish ways are stuff of legend and, like a junkie kicking the bad stuff, you’ll have to rehabilitate yourself in order to learn how to be caring and selfless and decent. Aside from the judgmentalness and overt sexism that this statement exudes (I’ve never in my life heard anyone say this to an expectant father), it is a flat out lie. Motherhood pins a woman under a microscope like no other endeavor, save perhaps appearing on the cover of the Sports Illustrated Swimsuit Edition. Once the egg is fertilized, it is solely about you: what you eat, how much you gain, are you stressed, are you exercising enough. And when the baby comes out the focus is even sharper: did you dress her warmly, are you reading to her enough, have you been giving her tummy time, are your breasts producing enough milk–the demands are endless and so must be your patience. Patience, not always for your child, but for the friends, relatives, and complete strangers that question you, assuming by default, that you are an imbecile.
As a mother you’re tasked with not only keeping your child alive (no small feat when they learn how funny it is to see you scream and run when they dash toward a busy street), but making her flourish in the Aristotelian sense of the word–imbuing her with virtues so she can grow up to have a meaningful life and not waste her time scouring Gap Kids for a lost sock. This much pressure can make you crazy. Why else would apartment-dwelling parents, sleeping ten feet from their newborn, install a video monitor in their child’s crib? Because what if–that’s why. (“What if” may be one of the most harmful concepts ever to entered the popular conscious, but that’s a topic for another day.) The pressure can also make you power drunk, giving you a false belief that not only must you control the universe, but that you can.
SIDS, Sudden Infant Death Syndrome, is a terror that stalks all new parents. The idea that you could walk into your child’s room and find them unresponsive is the cruelest vision that replays in your head throughout your child’s infancy. Doctors have made monumental strides over the last thirty years in their recommendations to parents about how to guard against SIDS, and correspondingly, a baby safety industry has grown to sell parents items that may assist them in following doctors’ orders. But, beneficial and well-intentioned as these products may seem, the ugly side of them is that there’s an implicit message that if parents don’t buy them, they’re risking their child’s life. So parents buy them. I did, as did my friends. A girlfriend told me about a nursery thermometer she was given that would beep if the room’s ambient temperature fell outside a prescribed band. She came to fear the dreaded beep (and it would beep, apparently, at least once a day), signalling that her baby could die because she had failed to adequately heat or cool the room.
Given the amount of products you can buy, and the amount of research you can do, and the data that you can collect (did you know there’s a Fitbit for babies? You thought analyzing the color of your baby’s stool was fun? Now you can get a live feed of your child’s heart rate when you’re in the shower!) parents are given a false sense of control, that they can stave off tragedy or even mild discomfort with another amazing product.
And when you are lulled into the belief that you can control the world, you begin to see your occasional failings through a much harsher lens, outliers that should have been prevented, Six Sigma-like, in your managed environment. Suddenly a missing sock stands in for all the ways in which you have failed and will fail. The sock is your lapsed attention while you pay for groceries and your daughter sneaks out the open door and into the parking lot; it is the cup of hot coffee you thoughtlessly left on the kitchen counter when the phone rang and scalds your child’s hand as they tip it over. The sock is everything because your child is everything and you know how fragile and fleeting the whole arrangement is. This is why you remember all the missing socks and still feel that somehow you’d be a better mother if only you’d seen them fall.
Elizabeth Gonzalez James is a stay-at-home mother of two in Oakland. Before she was a full-time diaper changer, she was a waitress, a pollster, an opera singer, and a fundraiser. Her writing has previously appeared in The Bold Italic.