May 12, 2011, by Prudence Baird
As if being a mother wasn’t difficult enough; Prudence illustrates what its like to be a mother of an autistic child, navigating familial relations, good intentions and bureaucratic ignorance
The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.
Casey’s eyes dart from the lit laundry room to the clothes in my arms; then to the crack of light under his brother’s bedroom door.
This could go any direction, including ones I cannot imagine, so I float a storyline: “I’m going downstairs with these clean clothes; time to go back to bed.”
“Mom? Who are you talking to?” comes from behind my oldest son’s door.
I dart a warning glance at Casey, whose free-floating anxiety wicks towards the sound of his brother’s voice. He erupts, “Shut-up! I’m trying to sleep!”
“You shut-up. You’re the one who’s yelling,” comes big brother’s voice.
“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.
“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”
Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.
“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”
But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed creaks.
I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.
My heart constricts—again. “This is autism,” I whisper. “Please. Punishing isn’t the answer.” No response. Then, “I know what I’m talking about.”
And, finally, I really do.
Autism can be a labyrinth of unspeakable horrors, where one comes face-to-face with the worst possible traits of humanity—indifference, cruelty, greed, discrimination, hopelessness and resignation. Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt. Institutions designed to help don’t. Safety nets fail, their frail ropes of good intentions frayed by bureaucratic apathy and over-extended, un-kept promises. Men often leave, unable to fix or to sustain that which sprung unexpectedly from their own loins. Mothers give all or give nothing; either way they are reviled by those outside the dark bubble which the family calls home but feels like anything but.
Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.
So it was for Kristen LaBrie, 38, a single, unemployed mother of a non-verbal, severely autistic and cognitively delayed son, Jeremy, who suffered from a relapse of non-Hodgkin’s lymphoma when he was seven. The mother and her son, who had survived an earlier bout of cancer therapy, made it together through four of the five phases of the second go-round of chemo before Kristen stopped administering the medicine because she felt it was making Jeremy sicker.
In Kansas City last month, Kristen was paraded through the halls of justice in handcuffs (“let that be a warning to all you bad mommies out there”), after being sentenced eight to ten years for attempted murder of her son Jeremy. The prosecution painted Kristen as an embittered woman who let her son die to get back at the world, and especially Jeremy’s father who left the destitute mother and son to fend for themselves when Jeremy was three.
In court documents, Kristen’s crime was failure to give her son life-saving medicine that an oncologist claims could have given Jeremy as much as a 90 percent chance to survive at least another five years. The thinking is that if Kristen had been a good mommy, she would have followed a complex two-year protocol that included hospital stays, regular visits to a hospital clinic to receive chemotherapy and at-home administration of several cancer medications. Never mind that the medical protocol did not include systematic support for Kristen, her son’s only caregiver for most of his life, and herself suffering from clinical depression.
Jurors justified their harsh verdict—guilty of attempted murder, guilty of child endangerment; guilty of assault and battery; guilty, guilty—by citing the devotion of motherhood in lofty tones. Editorial writers and pundits weighed in with headlines such as “Life Unfair, but Mother Dead Wrong”. Anyone with a toe in the vast sea of commerce that world of autism has become proffered themselves to the media as autism experts, hoping to use the tragedy of Kristen and Jeremy to sell their books, programs or gain market share points with a population that increases annually by more than 40,000 souls in the United States alone.
Our son Casey is one of the lucky ones, born into a comparatively stable family that is able to get him the services and enrichment he needs to thrive and grow. Sure, our Thanksgivings feel more like Picasso’s Guernica than Norman Rockwell’s Freedom from Need, but, as I put away the laundry that started the confrontation in the darkened hallway, I wonder how many children with autism will be born as Jeremy was, to unsteady circumstances and single mothers struggling to survive?
Tonight, as the mercury hovers above 50 degrees; outside the open windows the peeper frogs celebrate spring in vernal pools, their high-pitched squeals sing in new beginnings.
Tomorrow, Casey will process his midnight meltdown; he will be full of remorse, doling out hugs and asking forgiveness. He will see the world with new eyes and help those who support him have some measure of satisfaction that they had something to do with his turnaround.
But for other mothers and fathers, there are no reconciliations—only more suffering lies ahead. Who among us would willingly exchange places with them?
Autism by itself is a burden almost impossible to bear. Autism, poverty and a lingering, prolonged cancer treatment that causes both emotional and physical pain make for an exercise in despair so profound that our legal system cannot address this tragedy. Kristen should go free; her life so far has been punishment enough.