My Kids Does That, Too

My Kids Does That, Too

 By Laurie Foos

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My son was standing at the window looking out at the cars when I knew. He was four years old and talking to himself, repeating bits of dialogue from television and things he’d heard during the day, a practice I’d learned much later is called “scripting.” I sat next to him by the window as he leaned against the glass. Together we watched the cars whizzing by on the busy road in front of our house.

“See that blue one? Look at the red one,” I said, and he kept looking out at the cars, not at me, and said, “See that blue one? Look at the red one.”

I tried to get him to look at me, but he wouldn’t, even when I said his name. Zachariah.

“The world is a confusing place for you, buddy, isn’t it?” I said, and for a moment it was just the two of us looking out at the cars and saying nothing.

That morning the speech teacher at his developmental preschool had called, a call I realized much later she must have rehearsed many times before picking up the phone. I no longer remember her name, but I know she was young and pretty, as most of my son’s favorite therapists were, and as soon as I heard her voice on the other end, I knew why she was calling.

“I wanted to touch base with you about Zachariah,” she said. She paused, as if waiting for me to cut in, and when I didn’t, she said, “I’m seeing some of the things we talked about, some of those things I mentioned back in January.”

I won’t make you say it, I thought, even though, since everything had begun, the Early Intervention, the hours each week with my son strapped in a booster seat while therapists tried to coax him to say new words, to make eye contact, to feed bottles to baby dolls and send Diego riding an elephant, that all along, I’d been trying to make someone say it. Your son is on the Autism spectrum. I’d spent so many late nights doing Google searches, trying to figure out why all the therapists who traipsed into my home four times a week kept stressing his inability to point at objects in books or call me by name. What were they getting at? I’d wanted to know. What were they all looking for? Why did they keep saying I shouldn’t worry, that it was just a speech delay?

By then, though, I’d done enough Internet searches for “Signs of Autism” to know that my son had nearly all of them.

“I understand,” I said to the speech teacher that day on the phone, “because I’m seeing them, too.”

The actual diagnosis happened rather uneventfully in the basement of the office of a developmental pediatrician. The nurse practitioner tried to get him to do the things all the other therapists had been trying to do: to build a tower of blocks; to comb the dolly’s hair; to point at the duck and the sheep in the book; to answer the questions, “Can you show me the cat?” and “Zachariah, what’s this?”

My son spent much of the time at the window looking at the lawn mower outside. Periodically the nurse practitioner directed him back to the blocks and the doll, but inevitably he’d get up to check on the mower blaring outside.

“He’s worried,” I said. “He’s worried about the lawn mower. It’s very loud.”

I sat on an orange chair in the corner of the office and counted the minutes until the test was over. I wanted the noise outside to stop, for my son to do just one of the things he’d been asked to do, to get us out of that office where I could sit somewhere by myself for a very long time.

Finally the nurse practitioner wrote the letters, “PDD-NOS” — Pervasive Developmental Disorder Not Otherwise Specified, a disorder on the Autism spectrum — in block letters, touched my arm and said, “But mild, though. Mild.”

When I got home that day, I sat in the bathroom on the edge of the tub. My father had died a year and a half earlier after a seven-year battle with colon cancer, and I realized sitting on the edge of that tub how many times I’d sat there worrying about someone I loved: my father, my bereaved mother, my son. I remember I thought that day of writing e-mails to friends about that day at the office, about the testing, about what had been confirmed about my son — this was before the wildfire of texting — but I didn’t know what I’d say, or what they would say in return. What was there, after all, to say?

Eventually I told people that my son had been diagnosed, many of whom told me stories about other children who had needed extra help in school at one time or another or who had recovered from some type of developmental delay.

“Look at Einstein,” one friend said. “He didn’t talk at all until he was four or five.”

“Maybe he’s just tuning you out,” another friend said. “My kid does that all the time.”

Every mother I knew had a story of a child who had triumphed. Did I watch the kid on 48 Hours who had been on that special diet and who no longer had Autism, or had I seen the kid on Youtube who suddenly spoke full sentences at six-and-a-half after being utterly mute? And what about those non-verbal kids who couldn’t speak at all but could type those lines filled with  striking images and turns of phrase?

“He’s only four,” they’d say, and I’d agree and try to feel reassured, as I knew they wanted me to, but what I really wanted to say, even to my own mother still in grief and feeling protective of her only grandson was, “I know you mean well, but you just don’t understand.”

Not long after the diagnosis, my husband and I attended a fundraiser at the developmental preschool where our son now received ABA therapy in addition to the speech and occupational therapy, and other therapies that are offered to children like my son. During the break from bidding on baskets of gift certificates to benefit the school, we drifted into the cafeteria where they were serving coffee and donuts and taking membership for the Special Ed PTA. At my typical daughter’s preschool — my kids are sixteen months apart — the moms often walked by each other in the hallways and gave each other those half-smiles at drop off but said little else, and to be fair, I hadn’t made much of an effort with those moms, either.

“Hi,” I said to the woman behind the table who stood over the paperwork. “I’m Laurie, and my son is four, and I just found out that he is on the spectrum…”

Before I could even finish the sentence, this woman I’d seen many mornings at drop off with two boys, one on each arm, a haphazard ponytail and bags under her eyes, reached across the table and took my hand.

“Don’t feel alone,” she said. “Listen to me. You don’t have to feel alone.”

I almost stopped her and said, “Oh, it’s okay. Really, I’m okay,” mentally going through the list of women I had in my life who had listened to me talk about my son. But instead I let her hold my hand. All this time of feeling so self-aware, I had never realized how deeply alone I had felt.

I don’t know what happened to that woman, as our sons ended up in different districts after aging out of the developmental preschool. I never did have the chance to thank her for her kindness that day. Now my son is nine years old and in a self-contained class, a small class made up of children like my son, children with cognitive and social delays that set them distinctly below grade level and unable to be fully integrated into typical classroom settings. He speaks constantly and has made great strides, reads and writes and is distinctly more interested in other children and in the world around him, though he struggles with change and with the kinds of social and cognitive issues that my friend with “typical” children don’t experience. With the advent of Facebook and other social media outlets, support groups, and the like, I have found a way to remind myself when I need to that there are other moms out there like me, other moms with nine-year-old boys who eat the sleeves of their sweatshirts, who can’t understand why babies don’t speak, who scream and cry when the bus has a substitute driver, or when it rains, or when something is moved in their bedrooms.

Sometimes at night when I lay my head  on my pillow, there are worries that course through my head, worries about what life will be like for my son when he’s no longer nine, when it’s time for girlfriends and college and jobs. When those moments happen, I think about that woman at the preschool and wonder what her worries are, and I think about all the other mothers like me with children who struggle. I’ve had many other moments since then, with mothers on park benches, in dressing rooms, and in line for the ladies room. We recognize each other; it’s as if we know our own kind. My son may hold his hand over his ears at the sharp sound of the hand dryer, and another boy may flap his hands or walk on tiptoe. We may talk about a fear of haircuts or an endless need to open and close doors. On the days when there are meltdowns or when my son eats the wash cloth or lies down on the floor during homework time, I’ll go into the bathroom before I get into bed, sit on the tub, and think of these other women and the things we say to each other, those snippets of conversation, a phrase here or there, and know that somewhere, one of these women is saying, “My kid does that, too.”

 
Laurie Foos is the author of Ex Utero, Portrait of the Walrus By a Young Artist, Twinship, Bingo Under the Crucifix, Before Elvis There Was Nothing, The Giant Baby, and a new novel, The Blue Girl, published this July.

Photo: Getty Images

That Impossible R: On Speech Delays and Self-Confidence

That Impossible R: On Speech Delays and Self-Confidence

By Jennifer Berney

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This wasn’t the first time that someone had trouble understanding my son. Other grown-ups, charmed by his pronunciation, often chuckled and mimicked key phrases.

 

My son was four years old when he first expressed embarrassment about the way he talked. It happened one morning, as he played blocks on the floor with a friend and I sat in the background, reading. My son was narrating as he played, telling her that this giant tower was just part of what would become a “really cool world.” It was clear to me exactly what he was saying, but his friend just kept asking “What?” over and over, because all she could hear was “weally cool wowld.”

“I can’t understand you!” she said, giggling.

My son got up and sat next to me. He leaned in. I translated. “He’s making a really cool world,” I said.

“Oh,” she said, unfazed.

“Are you okay?” I whispered my son who was now resting his head in my lap.  

“I think—” he said, “I think it’s just that my voice is a little funny.”

This wasn’t the first time that someone had trouble understanding my son. Other grown-ups, charmed by his pronunciation, often chuckled and mimicked key phrases. My son might explain to an adult friend that he had dreamed about a red-eyed creature who chased him through the forest. “Is that right?” the friend might respond. “A wed-eyed kweecha, huh?” My son would look confused for a moment and then resume his monologue.  

“Oh honey,” I said now, drawing him as near as I could. “Your voice isn’t funny. You just have a hard time with the letter R. Lots of kids do.”

Some minutes later, he returned to his blocks. He built now in silence, no longer speaking of his really cool world.

Over a year later, our family doctor asked if we’d consider bringing him to a speech therapist. She acknowledged what I already knew: that most kids with a delayed R acquire it naturally before the age of seven. “But,” she went on, “you might consider whether it would help his confidence to address it before he starts kindergarten.”

I thought about how lately any time someone asked his name he would lean into me and whisper, “You say it.” At first I assumed he was simply being shy. “You can tell them!” I’d say. “Hah-lan,” he’d tell them, and inevitably the person would give him a puzzled look. “Hollin?” they’d say, looking to me for guidance. “Harlan,” I’d correct.

We met with the speech therapist the following week. She was a gentle woman, gangly and tall with long hair, who played card games with my son and sent him away with stickers. Under her guidance, he became an expert at distinguishing Rs from Ws. He could hear the difference between weed and reed, between walk and rock, no problem. But this didn’t mean that he could pronounce his Rs. Instead he paused at R words; he gave them his full attention and came out with a sound that wasn’t quite W, but was still quite far from a recognizable R.

After six months of speech therapy, his therapist wanted to talk to me about his progress. She had recently tried recording my son so that he could hear his pronunciation. He’d been enthusiastic initially, but when he heard his recorded voice, his face grew red and his eyes welled up. He insisted that the recording machine was broken, that it made him sound weird. “Wee-ahd.”

“We can keep trying,” she offered, “But he might just need a break.” As we left her office that day, I felt relief at letting go of this one thing—a small thing really, a single letter of the alphabet. I was hopeful that after a few months my son might find R on his own.

He didn’t. He started kindergarten and made new friends, and built elaborate structures out of Legos, and learned to read, and basically did all of the things that you would want a happy, healthy kindergartener to do, only he still didn’t like to say his own name, and if you asked him who his teacher was, he didn’t want to say “Mrs. Brown.”

At the end of the school year, my son’s class put on a recital and in the days leading up to the event, my son confided that he was nervous. “What are you nervous about?” I asked him. “What are you going to do?”

“It’s a suh-pwise,” he told me.

When the evening of the recital arrived, the gym was packed with at least sixty parents and siblings and neighbors and relatives. At the last moment, I remembered to stuff my pocket with tissues. My son stood on the front riser, dressed in his brand-new Minion t-shirt and freshly laundered shorts, his version of a fancy outfit. The whole class sang The More We Get Together, and then Mrs. Brown handed the microphone to the girl sitting at the edge of the front row. She spoke with absolute confidence: “My name is Hailey and my favorite thing about kindergarten is reading corner.” She handed the mic to the boy on her left. It wasn’t until he began to speak, that it hit me: my son was next in line. In just moments, he would take the mic and have to introduce himself to a crowd of near-strangers. My heart sped. My face flushed. My son took the mic, looked out at the crowd, and gathered his breath. I swear, he took forever to speak, but once he started he didn’t pause. “My name is Hah-lan,” he said. “And my favowite thing about kindahgahten is computahs.”

The audience clapped politely just as they had for the two proceeding children. No one else knew that my son was likely terrified, that they had just witnessed an act of significant courage. But I knew. I sat there with my tissues, snotty and teary and beaming, grateful in a strange way for that impossible letter R for teaching my son that it’s okay to say your own name, to claim what you love even if you can’t say the words perfectly.

Jennifer Berney is a Brain, Child contributing blogger. Her essays have also appeared in The New York Times Motherlode, the Brevity blog, and Mutha. She is currently working on a memoir that chronicles her years-long quest to conceive a child. You can connect with her on Twitter, or on her personal blog, Goodnight Already.

Pulling on Words

Pulling on Words

By Tricia Mirchandani

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A mother’s life becomes all-consumed by her son’s speech delay

 

“Uh… Uh… Uh… Up! Boo! 1…. 2…. 3… G-G-G-Gooooo! Weeee!”

This is our slide mantra. I say these words every time he goes uh-uh-up and d-d-down. I chant them on the first round and the twenty-first round. I repeat them when we’re alone in the park and when others stand by, witness to how ridiculous I sound. Every journey up these steps and down that slide happens to the tune of my narration. We have a swing mantra too and another for the bigger slide. One for opening doors and one for taking off shoes.

We have these mantras because that is what the speech delay books and websites and speech therapists have told us to do. Repeat words five times. Narrate. Enunciate. Give him a turn to speak but give him the words he needs. Don’t talk too much but say what he might say if he could. Use the same words always. Routine is important. Repetition is key.

Just like those early days of parenthood when I read every book, subscribed to every newsletter, bookmarked every website with an ounce of information about the sleeping and eating patterns of newborns and infants, I submerged myself in data, research, and the words of the experts. I highlighted, tabbed, and made notes in the margins of articles. And, just like in those early days, I’d come away so dizzy and overwhelmed that I could barely form a word myself. I’d close the book and take tentative steps, scared to make a wrong move or say the wrong thing. I’d question every activity, lest my actions today prevent us from ever unlocking that box where he keeps his voice.

Still, for three months, I read and researched and gathered. I sat us in daily focused work time, like school for my not-quite two-year-old. We’d blow bubbles or play with his train, things he enjoyed because the books advised that speech happens through play, but we both knew the truth. This was work, barely disguised as fun. By the time an hour had passed, we’d be exhausted. My muscles ached as if I’d been physically pulling on the words that are rooted so deep within him. He couldn’t sit a minute longer, wanted a view of the world that did not include my face. So we’d go to the park and I’d intend to let him play, just let him be, give us both some time to rest. But then he’d run to the slide and the book said routine is important; repetition is key. So I’d stand by. “Uh… uh… uh…. Up!”

My life became solely about coaxing words. All else fell away as I lived for his first sound, his first string of babbles, his first thought.

But the world kept spinning, as it does. Summer cooled into Fall. School began. As I kept my gazed focused on his lips, watching expectantly each time they parted, his legs learned to climb up and down steps and propel a tricycle. As I stared into a tunnel, waiting for his voice to echo against the walls, his sister became a Kindergartener and entered new phases of reading and writing and friendships. But I didn’t see any of it. I didn’t see life; I saw only him and his reluctant little mouth whose sweet smiles melted my heart as his silence broke it.

Such is the way of motherhood. The way we worry is all consuming. We see the things that may hurt our children, that make life harder for them, and we can’t rest until they have been fixed. We believe that if we devote every ounce of our being to them and this thing that is wrong, that we can fix it. A mother’s love can conquer all.

We don’t like to admit that our motherhood has limits.

At the end of a long day, I collapsed on the couch and stared at the ceiling. We’d spent the day celebrating our daughter’s five years on this earth. We’d made the day about her. There’d been no focused speech time. No pulling on words, begging whatever it is inside my son to release. We’d just lived our life, the life where birthdays happen and must be celebrated. The life where you only turn five once and where kids run around our backyard, searching for treasure and chasing each other and rolling in the grass. The life where a little boy can hang with his sister’s friends, keeping up just fine with the big kids and their games, the number of words he cannot say completely irrelevant. At the end of that day, I stared at the ceiling, dreaming that if I could just stay perfectly still, I could delay my return to the all-consuming worry. Stay just a bit longer in the celebration, in life.

I was staring at the ceiling so I didn’t see when he opened his mouth to let free a stream of babbles, perfectly inflected. He wandered around emitting a series of ba-ba-bas, hand motions to match, as if it was his turn in an animated conversation about the day and the party and the kids. I wasn’t pulling but he was giving willingly and freely, sounds and tones and the answers to months of prayer.

And I know this does not mean things are fixed. These babbles alone won’t smooth his path. I know; I’ve done the research. But instinct stopped back in for a visit that night and suggested that maybe, just maybe, we might try living more and pulling less. Maybe if we just live our life, this life is where we’ll find his voice.

Tricia Mirchandani is a mother of two, a freelance writer and the blogger behind Raising Humans. Her words have appeared on the Huffington Post, Scary Mommy, Mamalode, and in Pregnancy and Newborn magazine. Connect with her on Facebook and Twitter.

Hearing Henry

Hearing Henry

By Krysty Krywko

Art Hearing HenryCan you say juice? Juice. How about please? Please. There I am on all fours, my face inches from my 20-month-old son’s – pleading with him to at least try to repeat a word I might recognize.

I miss not being able to talk to my son. While he babbles and giggles all day – there are very few sounds I understand. To his credit, he has mastered a system of pointing and pleading that allows him to get what he wants: his juice cup, his favorite toy train.

My firstborn, Molly, started talking early. I felt I had an edge with her, an inside track on how to understand her mood and her temperament. With Henry, I am missing that final piece of the puzzle that will help me put him all together.

I do not know my son. Not in the way that a mother should know her child. I know his smell. I know the shape of his body as it presses into mine. But I do not know him – his being, his essence, all that stuff that is inside his head. He floats around the fringes of our family life – separate, yet together. I want him to join the conversation whether it is around the dinner table and we are talking about all the different ways you can eat a strawberry, or while we run errands and count the number of taxis we see.

Despite my years of teaching experience (12) and my degrees (a Master’s in Curriculum and Teaching; a Doctorate in International Education Development) my son’s lack of speech is unexplored territory for me. I don’t know the developmental markers for speech at his age, but I do know my son should be further along than he is. It seems to me there should be an attempt on his part to do more – to put words into fragments, fragments into sentences, sentences into conversations. I have great faith that the development of my children will simply unfold as it is meant to, a rambling list of “firsts” – first steps, first teeth, first words. Isn’t there supposed to be a master plan for all this?

I sit in a café. Latte and notebook spread out before me. Beside me sits a mother with her young son. I’m not sure how old the child is; he looks about the same age as Henry. The two of them are engaged, using words. They have a conversation, or at least as much of a conversation as can be expected between a mother and a young child. The overheard chatter bounces around the chambers of my heart. When Henry and I go out; there is silence. Maybe some gesturing and sounds on his part, the very few words he has cobbled together; mommy, up, goodbye. This is what I hang onto.

It is what I hang onto when my mother says I should take Henry to the doctor because something is not right with him, with the way he interacts. It is what I hang onto when my father tells me he is worried, that Henry, rather than moving forward, seems to have regressed in the past few months.

Henry’s pediatrician, on the other hand, is not worried, and it is her white-robed efficiency that I also hang onto. When at the end of his two-year-old visit she asks if I have any concerns, I say:

“I do. I think Henry should be talking more than he is.”

“Did he pass the newborn hearing screen?” she asks.

“Yes,”

“Does he go vroom-vroom when he plays with his trucks?”

“Yes,” I reply uncertainly. I am not sure where she is going with this.

“He’s fine. You need to remember he’s a second child, he’s a boy – he’ll start speaking when he’s ready. Boys are often delayed. There’s no need to start worrying until he’s closer to three.”

I know now there is no medical basis to the pediatrician’s reassurances. Instead, her white-robed efficiency masked a combination of hocus-pocus and old wives tales. There is no mention of further testing, no scheduling of follow up appointments. Just go home and wait and all will be well.

And I play along because I am out of worry at this point. The past two years have been a mess of doctor appointments and consultations as we waited for the hole in Henry’s heart to close; and when it didn’t close we waited to see if the pressure between his heart and his lungs could be regulated; and when it couldn’t be regulated we made plans for our two-year-old son to be put on the heart-lung machine while the doctors cracked open his rib cage and fixed his faulty valve.

Henry comes running to me, hot on the tracks of Molly, who is four and half. She carries her newly colored picture of a farmhouse, complete with animals.

“Mommy, Mommy! Look what I drew, Mommy. How do you like my picture of a farm? See here are the babies and here are the mommies.”

“It’s great, honey. I love the way you drew the baby pig, he looks so happy next to his mommy.”

Henry holds up his picture. Syllables tumble out of his mouth. He is excited to share his artwork. I have no idea what he is trying to tell me though. I feel like we are both getting ripped off. I’m not sure what I am looking at other than a jumble of colors. The generic platitudes that tumble out of my mouth sound empty and hollow – the kind of chatter you engage in with a stranger in the elevator, mindlessly commenting on the weather.

Henry is two months shy of his third birthday, when his preschool teacher suggests we take him for a hearing test. Someone has finally stood up and named the obvious: that my son needs help, we need help.

Henry and I sit in the backseat of a taxi on the way to the audiologist. A fire truck blares up behind us. Henry doesn’t even flinch. I know my son can’t hear even before he is diagnosed with moderate to severe bilateral hearing loss. All the pretending, all the excuses slip away.

What I don’t know in the backseat of that taxi is that Henry will be fitted with hearing aids. That in a few short months he will start intensive speech therapy at a special school. That he will come home tired and overwhelmed from listening to all the new sounds. What I don’t know in the backseat of that taxi is that Henry will begin to talk. That he will be able to say he loves me and that Cheerios are his favorite breakfast cereal. At this moment I only know all that we have lost; I do not yet know all that we have to gain.

Author’s Note: Four years have passed since we first started this journey into Henry’s hearing loss. When we first inserted his hearing aids, miniature grey receivers with batteries, we weren’t sure what to expect. Henry turns seven this April and is a confident and inquisitive first grader. He has a wicked sense of humor and the hearing aids that I once thought would define him are only a small part of who he is.

About the Author: Krystyann Krywko is a writer and education researcher who specializes in hearing loss and the impact it has on children and families. Both she and her young son were diagnosed with hearing loss one year  apart. She is the author of the e-book, “What to Do When Your Child is Diagnosed with Late Onset Hearing Loss: A Parent’s  Perspective,” available on Kindle. She also authors the blog, “After the Diagnosis: Helping Families with Hearing Loss.” She can be contacted through her website www.lateonsethearingloss.org.