My eight-year-old daughter kicks my thigh, then my stomach. “I hate you. I HATE YOU!” she screams. She has a death-grip on my arm, pulls it harder than you’d think a child could and leans in to bite.
Three hours later, we recover in the bath, fully clothed, the loose sleeves and skirt of my date-night dress floating around us. She balances her Lego figurines on the black material, making them cartwheel and pirouette in blocky grace across my body. They yell at each other and kiss afterward. They live entire lives. They laugh and embrace, then throw each other off the edge into the deep water.
I hold my daughter close, and an hour later we are pruny. She is too tired to stand without help. I peel off our heavy, wet clothes and slide us into matching T-shirts from my drawer.
“We’re twins,” she whispers, and I carry her to bed.
Autism is simply a part of my son and daughter, a different way of thinking and experiencing the world. They struggle, uncomfortable in this loudness, but they are also able to find joy and success.
I tuck her in and turn out the light. I watch her legs draw up, frog-style, and I remember — how could I forget — that she broke two of my ribs with those strong legs the month before she was born.
“I’ve never heard of anything like this,” the doctor said.
Her rage against this world’s unfairness had already established itself in utero. As had her confusing, post-violence affection. Somersaults that strained my skin and an elbow or foot, hard to say, moving up and down my belly. I’d poke the lump with my finger as it moved, and the little girl inside would poke back. I’m here.
In the culture of special needs parenting, certain types of disabilities push parents toward the edges. Those of us with mentally ill children inch away from bright lights and parent support groups. Words stick in our mouths. We clear our throats, nodding as other parents discuss hard things. If their children cannot read, cannot walk, cannot hear — then at least they have not thrown an iPad through the screen of the television. Pulled a knife out of the drawer and held it towards someone who loves them. Attempted to pull off their own ears as they weep.
There is a moment of shock that occurs when you share something like that, quickly hidden. Their child would never do that. Their child is not like that.
We need other parents, though, more than we need honest conversations about why our children are in the hospital or what type of waiting rooms we sit in every week. At least the language is the same, and there is comfort in that: Doctors and diagnoses, appointments and medications. These other parents have also lost sleep, Googling for hours, seeing therapists themselves to find solid ground on which to stand.
But to go to work, to grocery shop, to grill the hamburgers for dinner? That requires compartmentalising, something I am notoriously bad at. It requires a series of locks and keys. The part of us that is too tired to cry is in the closet by the bottom of the basement stairs. The part that thinks “Not again. I cannot go through this again,” is in the lockbox in the pantry with the medicines. The part that blames our genetic history, that wishes we had known how these things get passed along — that might have chosen differently — is too shameful to acknowledge, much less share. What kind of mother would think such thoughts?
“I thought I was in the clear here,” I text a friend the next morning. “Mood disorder number three.” But what I want to text is, “Once, when I was 13, I held a pillow to my face and scream-cried for four hours. I rocked myself and whispered I just want someone to love me over and over. Except people did love me. But what is reality, except what we see with our own eyes?”
I want to text: “My middle daughter is me.”
Instead I text: “Sheesh I bake them kooky, don’t I?” Happy face emoji. Wink wink. Skull and crossbones.
She texts back a heart. She is at church, but can we meet up later? She loves me and wants me to know how special my children are. There is a plan, bigger than us, and we are loved. She means this. She has three children with many hard diagnoses, and there is a plan for them, too. I sometimes bring my family over to her house to soak in the pool of her belief for the afternoon. As an agnostic sceptic, I resent and envy her faith. As a desperate, crumbling mother, I will take any holy water or snake oil offered. Anything that will bring smiles, relaxed spines, an afternoon where my children feel at home in their own skin.
After years of trying everything, it’s my only reprieve from science experiments and wet blankets wrapped around burning children.
My daughter now joins her siblings in the medical realm. Her brother and sister both have diagnoses of autism and mood disorders, and every success comes at a cost. The relief I feel about my son’s medications, for example, is tempered by deep fears regarding his long-term prognosis. I worry about terrible side effects and how little we know about mood disorders in children. I research liver failure in the dark next to my sleeping husband. Reflux. Irritable Bowel. Jaundice. The long-term impact of sleep deprivation on brain function.
“Why are you still awake?” my husband mumbles, shielding his eyes from the light of my phone. I search Facebook support groups to find other parents whose children are worse off. My goals are always temporary: Savour this, try not to flinch, notice the sun shining today.
I am an education and disability advocate, and I regularly work with parents to find perspective and create a new, better community of informed families. I help them look closely at their children, reassigning adjectives and strategising for school battles. We find and unwrap gifts we need their teachers and doctors to see.
But it is impossible for me to view my children’s mood disorders as gifts. I can’t reframe it for myself, the way I can for other parents. The way I’ve learnt to do with autism. Autism is simply a part of my son and daughter, a different way of thinking and experiencing the world. They struggle, uncomfortable in this loudness, but they are also able to find joy and success. They play and build and create and love. They are children. I can’t imagine my children not autistic. My son not stimming next to me, his fingers flapping in excitement, his weight shifting from side to side. My youngest daughter singing songs to herself, a musical monologue as she processes her day.
Mental illness, on the other hand, only hurts. When depression or anxiety take hold, when my son’s mania overwhelms the house — there is no perspective to shift, no gratitude for which to dig deep. I constantly imagine my children not sad, not scared, not wanting endlessly.
“We have to tease out your daughter’s symptoms,” the psychologist tells me. “Is this biochemical or is it her home environment?”
Another way I have failed her, exposed her. All those months she kicked me, was she, in fact, begging me not to bring her into this house? When she punches her forehead now, mimicking her older brother, am I supposed to hold her hands tightly and tell her to stop, to be the typical child she supposedly is?
Sometimes I want to yell at these doctors and therapists. Your medical books don’t tell the whole story. Sometimes we kick in utero. Sometimes we come out screaming. We learn to create art to soothe ourselves, to copy our brother’s uncomfortable coping strategies, to punch back when we feel trapped. We are just getting by, like you.
Instead, I say: “She’s OK, you know? Even when she’s not. We’re a family.”
I say: “I’m going to love her and love her and love her. Let’s talk about meds in six months.”
And within this whirlwind of attachment, anxiety and guilt, there is my daughter. She leans in, wraps her arms around me and whispers, “I love you, too.”
I say: “We’re going home.”
“Yes, please,” my daughter says. “I want to go home.”
— Washington Post
Hannah Grieco is a writer and advocate in Arlington, Virginia.