By Krysty Krywko
Can 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.
“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.