Through poetry and prose, Matthew Cooperman ’86 and his wife, Aby Kaupang, write about life with a child living with autism
How many stories do each of us have to tell? Are they what we expected?
We came at it pretty traditionally: Two writers became lovers, got married, and became parents. We had a beautiful daughter. Yet, by the time she was barely 4 years old, we were teetering between placing her in hospice or subjecting her to the repeated trauma of hospitalization, testing, and therapies.
We were living in a circle of treatments. This is a story about disability: the diagnosis, the acceptance, the learning to live in a new reality.
Maya was an easy baby — quiet, serene, unfussy, nursed well. But by 6 months old, she lagged behind normative milestones. How far behind can a child be by 6 months, we wondered? The gap widened. She couldn’t sit, wouldn’t eat, her muscle tone was low. She didn’t make eye contact. Toys were of no interest. We took her to a doctor, and he said, “I suspect autism.” We took her to a fancier doctor, a specialist, and she said, “Yes, your daughter has autism.” She said she was sorry.
So began the strange journey of diagnosis, which stretches time and warps understanding, and doesn’t do much for treatment. This is the paradox of autism: so spectral are its manifestations, so idiosyncratic. We learned that no autistic child is like any other one, and our little girl is her own little world. How to understand a world?
The Diagnostic and Statistical Manual of Mental Disorders code for autism is 299.00. Children with autism tend to struggle with social interaction, communication, behavioral regulation, and various sensory sensitivities. Maya met, and still meets, all those descriptions. Additionally, she rarely sleeps, does not speak, and struggles with gastrointestinal and digestive functioning. She has a g-tube because she refuses to eat. And so Maya is not just 299.00, but 299.00, NOS (not otherwise specified). Love for our daughter and care for her quality of life led us to investigate causes and cures. And it spurred us to write a book, NOS (disorder, not otherwise specified):
What is there to say of this child? She lived, lives through this. So did we. You want to know more about her. So do we. The girl began and then so did our book, a mirror for sorrow or anger or fear. The book is a messenger, out in front. It canvases the halls of many hospitals. Again and again at the ER soothing her body. The daughter didn’t eat, didn’t sleep, didn’t laugh, didn’t poop, didn’t walk anymore. We went for a long visit. Doctors said autism, Valium, Abilify, sensory processing, seizures, inactive GI. They said tape a venting bag to her shoulder. We went again when they said she was crazy, a crazy summer when our little girl lived with other unspecifiable children. We met others there and parents of others who cared for/were eaten by the unseen and unseemliness of it all. We were told it all in notes and looks and [medical records] notations: “fear of a dog she doesn’t have,” “a dog she needs for her night terrors,” “attachment disorders,” and “negligent mothers.” We have heard it all. “Clearly the parents are rude.”
Rage and catastrophe, diagnoses and advocacy, our story embodies both the human condition of mortality — sooner or later, all bodies decline — and the nebulous peril autism brings to parenting and language. Our story follows our medically frail child into the labyrinth of care:
when
she is in treatment and we are waiting she is in a procedure and we are waiting
she is being diagnosed drugged poked drawn wired scanned dressed and un-
dressed
we wait
when we are not with the daughter
we visit the offices of payment and records
we walk walk again
Hospital architecture, and especially pediatric hospital architecture, employs palliative design — murals, soothing colors, interactive art, soft lighting — but what of the structure of care? There is sometimes disaster with difficult and multiple diagnoses. There are sometimes failures of communication that accompany long-term treatment of disability.
There is a lost gnosis in our little girl, there is a lost gnosis
in your little boy. The pronominal drift of allegiance pulls
at the cell strings. Arias of dissonance. Wires are seized
in a symbol of something gone wrong. Language unkempt,
everywhere pages are kept.
Questions arise
for/ on/ to/ of/
and we will see these things through to the finish.
What can be finished in any human thing?
Beyond documenting harrowing hospital experiences, we share our experiences from the point of view of parents of a child with multiple disabilities, and the familial traumas that become a family’s “living with disability” legacy. This, itself, has been a profound deepening of identity. For if identity has everything to do with agency, the acquiring of one through the formation of the other, and vice versa, then what to do with a subject who has no agency?
Our daughter sometimes identifies with her peers, but more often than not, she lives in an otherly structured world. She is, as such, a resistant figure, which becomes us in the shared prism of parents-of-special-needs children. Children like Maya forever change their parents. We take on this new reality, this new identity; we shape it, mask it, deny it, reveal it variously. We experience rage, guilt, defiance, despair, but also humor, sudden joy, absurdity, empathy. This has a way of both opening and closing doors, conversations. We write about para-disability: those who are adjunct to, attendant upon, in the wake of. We write for that silent population.
they that were in the children’s hospital they that on the pavilion parented they that refined their faces in the sieve of seizure
in the daylight met the carded men the parking arm the vertical blades of the guillotine elevator
doctors rose as did their entourage
We have escaped the trauma of those early years. Maya is now 13 and, while she still struggles with the challenges that autism presents, she’s variously thriving. We celebrate the life that is ours, however tumultuous.
— Matthew Cooperman ’86 and Aby Kaupang wrote this piece based on their 2018 book, NOS (disorder, not otherwise specified) (Futurepoem Books, 2018), which is excerpted throughout. Cooperman is an English professor at Colorado State University. Kaupang is a writer and occupational therapist.