I tell Joel that I’m late and ask him if I should go get a test. I watch as the meaning of what I just said moves across his eyes, darkening them. He tells me to wait a few days. He says he’s not ready to hear the answer.
“Okay,” I say. “But I don’t want to wait too long.”
“Just give me a few days,” he says. “Can you please just give me that?”
“Yes, alright,” I say. Max bites my nipple and the sudden pain shocks me.
And so we wait. I try not to notice how joyous Joel seems around our eleven-month-old, as witnessing such bliss makes me want to break in two. How can you have that, how can you know that, but not want this?
I remember how we eagerly and impatiently set to making Max—why is this any different? And yet it is. I can still remember telling my older two that we were trying to give them a baby brother or sister, to create a life that would join all of us together: mother, stepfather and kids. I remember peeing on a stick days before my period was due. One stick, two, then three. I just couldn’t believe our good luck. But this time? This time I’m afraid to leave the bathroom, afraid to show my husband the evidence of my failing.
* * *
I’m not prepared to face the late afternoon heat. I walk reluctantly away from the cold splendor of my office and try to ignore how thick the air feels as my lungs fill. I turn my cell phone on and check for voice-mail. You have one message. As I put the phone closer to me, my doctor’s voice fills my ear. The blood screening results have come back, he says. There’s a possible problem. I need to call back as soon as possible, to schedule more testing. Whether he says anything else, I don’t know. I can’t know. My brain has frozen on “possible problem”, and nothing more can get through. I keep walking towards my car, the phone stuck to my ear. Once I open the door, I perch on my seat and quickly begin calling my doctor’s number. Busy. Oblivious to the traffic of people around me, oblivious to the oppressive heat that’s pushing me down into my seat, I hit redial. Again. And again. The quicker I do it, the faster my heart races. Possible problem.
Eventually someone answers. I’d forgotten that someone could answer. The nurse is friendly, professional. I try and say who I am, but a sob bursts out of me like a sudden belch. I try again, but can’t get beyond my first name. The nurse’s voice is calm, soothing. It does nothing to still the earthquake that has begun inside of me. I’m told that yes, the results show that I’m at an increased risk for Down syndrome, but that the actual statistical risk remains low. She gently suggests I come in to speak to the doctor tomorrow. As if time will ever move forward again.
* * *
We sit hand in hand in a small room, surrounded by three other couples. All our eyes are on a TV screen, watching an earnest expert explain the risks of various chromosomal abnormalities. As the two-dimensional specialist drones on, I gently let my hand slip from my husband’s grasp. I can’t be touched right now. Not by my husband, not by the actor’s words, not by my baby’s kick. I feel connected to no one, to nothing. I sit there, but not there, waiting for my name to be called.
Two hours later the amniocentesis is done and we are back in the car driving home. Only then, when away from that place, do I allow my hands to settle across my abdomen, claiming what is mine once more. My husband starts talking about the minutiae of everyday life, but my focus is firmly back where it belongs. I will allow no one and nothing to loosen this bond ever again.
* * *
Eventually we get the news we were waiting for. The baby, a boy, is chromosomally fine. When Joel hears this information, he cries, having connected with his future son when he wasn’t even looking. When I hear this information, I feel dazed. I’ve become so fiercely attached to my baby that knowing he will be normal is irrelevant to me. Everything is irrelevant except that he continue to grow and thrive within my belly. I turn away from my husband and place Max’s hands across my stomach. It’s time he met his brother.
* * *
Sam’s birth is a scheduled caesarian section and is straight-forward. After I hear his APGAR score (a perfect 10), I finally let out my breath. I know that we are lucky, that we are blessed. For some unknown reason, our house has been passed over. For some unknown reason, we are allowed to have one final perfect baby. With my tubes firmly tied, we know not to tempt fate again.
* * *
Fast-forward six months, then twelve months, then eighteen. Here Sam sits on my lap, turning the pages as I read a book to him. Watch him run to get another. Listen to him ask four-word questions and wait for the answers. Listen to him laugh at a simple joke his older sister Meghan told. See him have a tickle fight with his oldest brother Daniel and somehow understand how to play. Listen to him sing with his father during his nightly lullaby, their voices blending so sweetly that it makes me want to weep. How lucky we are, how blessed. And yet. And yet, something is wrong. Something that we try desperately to ignore exists. But not with Sam, no. As I turn my gaze to my preschooler as he carefully arranges pieces of toy food in a neat, precise line on the floor, I realize that something is wrong with our beloved planned baby, with Max.
* * *
Max is in the midst of another meltdown and we’re both losing. As a veteran mother, I’ve seen my share of tantrums before, but never anything like this. No, nothing like this. Max wails as if in unbearable emotional pain, locked in a battle that he can’t escape from. Could this really be about trying to choose between two colors of chewable vitamins? And why would that be so catastrophic for a child? And yet, as he screams and sobs in front of me, his little fingers fluttering against his sides, I know that it is.
And another. Meltdown triggers are everywhere, like land mines, ready to explode if inadvertently stepped on. And I seem to be stepping on them all of the time. I start to dread driving my two little ones home from daycare because if I don’t identify each store or park that we pass correctly, I will trigger another meltdown. Say ice cream store instead of ice cream shop? Trigger. Say park instead of big park? Trigger. Say fire house instead of fire station? Trigger.
We all begin tiptoeing around the house, afraid that if we even look at Max incorrectly, we will set him off. Meghan makes sure not to sit on Max’s side of the sofa in the mornings, for fear that he will lash out at her. Daniel tries to avoid eye contact with him when he comes home from school out of worry that his little brother will begin screaming at him for no apparent reason. Only Sam remains oblivious to the maelstrom that is developing around him, and such oblivion can’t last. I’m aware that when it comes to trying to help my child learn to cope, kowtowing won’t help, can’t help, but I don’t know what else to do. Despite being a clinical psychologist, despite ostensibly being trained to help people, when it comes to my three-year-old, I don’t know what the hell to do.
* * *
And then the nightmares come. Mine, not his. I start to dread sleep because I know that when unconscious I risk being plunged back into the hell that was Max’s birth. While sleeping I again relive being unable to push my son’s eight pound, eleven ounce sunny-side-up self out of me. I again relive the sudden quiet in the delivery room and the look of concern on the OB’s face as his repeated use of forceps keep failing to pull my baby out (why isn’t it working yet?). I again relive the fourth-degree tearing that occurred (like paper ripping) as my body did what it could to get him out. Even worse, night after night I experience the fear that gripped my heart with a frozen, suffocating squeeze—that somehow, in some way, I failed my baby boy.
* * *
Despite realizing that something is wrong, despite knowing, it’s not until we receive Max’s three-year-old developmental screener from his preschool that we get kick-started into action. We read that in terms of fine motor skills, gross motor skills, and social/emotional skills, Max is flagging far behind his peers. For me, such information is like a sucker punch. It’s one thing to have noticed such problems as a parent, it’s quite another to have caring, professional people outside of our family realm also notice. Notice, and express concern.
We speak to Max’s family physician and receive a referral to a pediatrician. When the referral wait proves too lengthy, I take it upon myself to short-circuit the whole damn process and make an appointment to meet with a child psychologist. At least she’ll speak my language. It isn’t until after our initial meeting with her that I realize just how much responsibility I have been carrying on my shoulders to figure out what is going on and to try and make it better.
* * *
For a few weeks, everything revolves around Max’s assessment. Evenings are spent sitting at the kitchen table, completing detailed questionnaires about our beloved child. My husband and I have become a mini-UN, a world organization of two, each item before us needing to be discussed, debated, and labored over. Does Max “almost always” or “always” dislike a change in his routine? Does Max “sometimes” or “occasionally” do imaginative play? So much rides on our responses, Max depends on us to be accurate. Here’s our chance to finally do something, to finally help. What will it mean if we get it wrong?
* * *
And then comes the waiting. Weeks and weeks loom in front of us until the feedback appointment with the psychologist. Weeks and weeks of not knowing whether Max is merely a quirky kid, or is a quirky kid with a diagnosis. My husband seems to handle this uncertainty with aplomb, relating to our son in the same easy, effortless way he has always done. In contrast, I find myself increasingly ill at ease, suddenly worried that I may not truly know my child. On more than one occasion Joel pulls me aside, letting me know that I am acting a bit “too” with Max. Too enthusiastic, too complimentary (“Great job sitting up straight, Max!”, “Wow, you sure played with that toy car well, honey!”), too artificial. I attempt to rein my nervous energy back in a bit, but find it almost impossible to do. I need to know!
* * *
In the midst of the wait, I’m temporarily distracted by our summer trip to a cottage. We’re going with my father-in-law to a little town on Lake Huron, a place imbued with happy memories for me, as I spent repeated vacations there when my eldest two children were small. Soon after arriving in Southampton, the knot in my stomach loosens and something is released. I know this place, I know it. I find myself relax more as I watch Max’s initial reaction to exploring the cottage, to building sandcastles at the beach, to walking in the waves. He’s thrilled, just like any child would be.
And yet. On the second day he gets triggered when asked to choose an ice cream flavor, any flavor at all, honey. As we wait in line I notice his fingers start to flutter against his sides, like an engine getting revved up. Shit. The tone of my voice becomes overly gentle and calm, as if trying to coax a wild animal back into its cage, rather than talk to my three-year-old child. Regardless of my words, regardless of what his father crouches down to whisper in his ear, Max explodes. And though I try to ignore it, I can’t help but notice the reactions of other vacationers as Max screams hysterically at being offered a chocolate cone, then becomes even more hysterical when his grandfather suggests swapping ice creams with him. I can’t help but notice how easily his toddler brother picks his own flavor, then licks at it with no complaint. Through the other vacationers’ eyes, I am reminded that such a meltdown is not typical, not expected, not normal. What is wrong with my child?
* * *
A week before our feedback session with the psychologist we go to Waterloo with Max to meet with the consulting pediatrician, ostensibly to rule out any medical concerns. The pediatrician is an intelligent, inquisitive woman with kind eyes. Quickly bored by the appointment, Max turns his focus onto my hair, running his fingers through it in his gentle, familiar way and rubbing his face against my head. A Max-hug. After making notes at her computer while Joel and I yammer on about our concerns for forty-five minutes, the doctor takes her hands off the keyboard and turns to us.
“It’s clear to me that Max is in the autism spectrum,” she says. “Based on what you’ve told me, he seems to be in the moderate range.”
“The moderate range?” I blurt. “But how is that possible? He’s incredibly verbal, he’s curious, and he’s affectionate!” I pause for a moment, feeling Max’s hands on my head. “See? Look at how affectionate he is now, holding onto my hair!”
“Does he look at you when he touches your hair?” she asks.
I think for a moment, realizing the answer quickly, but not wanting to say it. “No.”
“This might be hard to hear, but I think what he is doing is more for self-stimulation then being affectionate.”
“Oh,” I say. Not a Max-hug, after all. Suddenly the room becomes flat, the air thin. Everything is two-dimensional. Without meaning to, I move away abruptly from my child’s gentle fingers. Stop it, already!
For the rest of the appointment, I’m not there, not really. While I know words are being said about waiting lists and private therapies, about play sessions and gross motor skills, I’m not listening. My thoughts are caught in a web of hair, imprisoned by the thick strands of loss.
* * *
After the appointment with the pediatrician, Joel and I jump face-first into denial. Where else is there for us to go? We both loudly agree that the doctor had no right to give us any sort of diagnosis, without spending any time one-on-one with Max. How preposterous! Besides, we only went to the appointment to rule out possible medical concerns. The psychologist is the professional whose opinion will matter, whose formulation will carry weight. After all, her report will be based upon hours spent with Max doing testing, observing, and interpreting detailed questionnaires! No, we will not allow the pediatrician’s words to absorb through our skin, into our hearts. After all, hope can always be found in what remains unsaid. We will wait another week until the true professional involved says her piece.
* * *
Except that I soon discover I can’t. I can’t wait. My heart has already begun grieving and won’t listen to reason. With the pediatrician’s quick words and kind eyes, the ground has shifted under my feet. Or rather, I’ve suddenly discovered that there is no ground, that there never has been. I’m like a Saturday morning cartoon character that was only able to walk blithely on air until she looked down and saw the truth. At the pediatrician’s office I made the mistake of looking, and since then I haven’t been able to stop falling.
* * *
We sit beside one another in a bright, cheerful room, filled with color and toys. The psychologist sits across from us, her gaze direct and her voice clear. She patiently goes through every result leading up to the actual diagnosis in detail, taking the time to answer each of my husband’s questions, seemingly aware that he is not yet fluent in psychologist patois. I start to crack my knuckles and then bite down on my lip, forcing myself not to shout at my husband to please stop asking so many damn questions! I bite down harder and taste blood. Doesn’t Joel realize that the psychologist holds the whole world in her hands?
The cut, when it happens, goes deep. It turns out that the pediatrician was right. It turns out that my gut was right. It turns out that every single patronizing stranger that ever looked pityingly at me while Max had yet another meltdown at the playground was right. My son, my sweet, beloved baby, has autism. Specifically, he has autism in the mild to moderate range in terms of severity, with the qualifier that he is often high functioning and is also quite bright, end stop. As if anything will ever start again.
* * *
I don’t remember actually leaving the psychologist’s office, with its bright, cheerful colors and its atmosphere of optimism. What I do remember is standing on a street corner soon after with my bewildered husband, who had merely suggested that we take a walk to clear the air, and had not expected his wife to begin sobbing into the front of his jacket as cars rushed by. What I do remember are those tears and the feeling of utter, bottomless despair and helplessness that accompanied them.
* * *
And yet. And yet it is Max who thanks me for making a most delicious, wonderful dinner, Mommy, words that may just be a distant echo from ones he’s heard before, but that always have the power to touch me, nonetheless. It is Max who doesn’t feel the need to hold back when excited, each limb vibrating with pure joy. It is Max who can recite an entire story to me, impressing me with his limitless memory. And it is Max who makes the point of giving me comfort when it’s most unexpected, leaning his head against my chest in his quiet Max-like way so that it briefly, oh so briefly, presses against my shirt, a gesture that I know is one of pure affection and that is such a privilege to experience.
* * *
I dream again of Max’s birth, but this time my memory continues rolling past the fear and the worry, to a few hours later, when all the hospital personnel had tiptoed out of the room and our new family of three lay sleeping. Suddenly in the dark, Max called out, a blind, animal cry. Joel lurched off of his makeshift bed to get our new son, to bring our baby to me. I held his tiny body against my chest, warm and boneless, and rocked him until he stilled, his breath slow and deep. My baby, my sweet, sweet baby, mine.
* * *
From his bed he now calls out, a blind, animal cry. I toss off my blankets and feel my way in the dark to his room. I pick him up, thirty-five pounds of locked elbows and knees, shaking muscles, and unfocused eyes. I take my untamed child and do what I’ve always done, the only thing I know to do. I rock him until his muscles loosen, until his stiff body leans into me, until he holds a handful of my hair in his grasp. I keep rocking until he stills, until he is warm and boneless once more. I keep rocking until his breath becomes slow and deep, in perfect rhythm with my own. My baby, my sweet, sweet baby, mine.
Alicia Hendley is a writer of memoir, poetry, and fiction, as well as a clinical psychologist. Her novel “A Subtle Thing” was published in 2010 and depicts a young woman’s experiences with depression. Her poem “Mediation” was in a recent issue of Room magazine. Her piece “Hungry” was a long-list finalist for the Exile/Gloria Vanderbilt 2010 Short Fiction Award. Alicia is also a mother of four children, including a wonderful little boy who just so happens to have Autism. She recently finished writing a memoir about her experiences (currently unpublished). She also is a blogger (http://aliciahendley.blogspot.com/).
Amazingly captured–were you watching over my shoulder?
So powerful. I love this line, “My thoughts are caught in a web of hair, imprisoned by the thick strands of loss.” Throughout the essay, you capture so well the complexity of parenting a child with special needs. The overwhelming love and grief and pride and worry and . . . it’s all there. Beautiful. Thank you.
What a wonderful piece of writing. I love how you played with structure.