Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.” The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity. He was about seven years old at the time.
The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place. It was considered a routine procedure.
Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.
“We have a problem,” the doctor reported grimly. The steel rod had accidentally nicked their son’s heart. He was bleeding internally.
“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.
Stunned, my friend’s husband interrupted. “Wait. Wait. Did I hear you correctly? Did you say you think you can fix this?”
The surgeon looked him in the eye and somberly replied. “Yes. We think we can.”
I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen. It has never been so with Daniel. Autism swept “reasonable” out of our lives. Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.
I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life. I realize now that I haven’t reached that place after all.
Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years. They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.
This shouldn’t have come as the blow it did. There had been incidents, serious ones, during the last few months. In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage. He spent three days in the hospital undergoing dialysis to flush the toxin from his system. Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.
I knew about these episodes, even recognized uneasily that they were escalating. Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world. He enjoys a unique, hard-won bond with his primary caregiver. It’s been the best place Daniel has lived for years.
Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child. Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time. Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?
Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home. The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility. His care team would transfer with him, lessening the impact of the move.
Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse. Everyone except the contract department, which controls the flow of funding. They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.
“We want to keep Daniel with us,” Kristen told me. “His behaviors are difficult, and we don’t want him to end up in Southern.” She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.
I should have known these words were coming, words I told myself again and again to prepare for.
But I wasn’t prepared. I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.
I wasn’t ready to hear the word “institution” in relation to my son.
That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees. I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend. I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless. Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.
My husband understood this. When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered. He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.
“Hopefully,” she added, “it will be an Adult Family Home.”
“What does that mean?” I asked frantically when Andy hung up the phone. “What does she mean, ‘hopefully’ an Adult Family Home? As opposed to what?”
He didn’t need to answer. I already knew.
I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility. I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win. We are still only at hopefully.
And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years. Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility. The shadowy menace held in the dark of my heart had taken shape, ready and waiting.
Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong. “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.
It had beaten me. I was done.
Except we don’t get to be done when we’re parents.
To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already. Suffice it to say that things got worse before they got better. The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper. Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.” Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.
For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.
It took two agonizing months, but in the end we got what we wanted. Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal. I don’t know if that’s true, or if we were just lucky. The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house. Daniel moved to his new, secure home a few days ago. He seems comfortable there, happy.
On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there. “Things always work out for Dan Man,” he reminded me. I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance. I tell myself that I won’t be duped again.
A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen. It’s a tidy, light-filled home with a swing in the backyard. I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.
On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look! That’s where we came that first summer!” I laughed with exuberance. “Maybe, when things settle down, we can go there again…”
Hope remains resilient. Or so it seems.
My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.