Teresa Elliot, “Deliverence”
Grist For the Mill For the Turning of Backs: When Family Defects from the Defective
Read part 1 here.
By Adriana Gamondes
Bearers of the Unbearable Bear
If bystanders or the professionals who originally diagnosed our once catastrophically disabled children would now have trouble believing how they’ve progressed, that’s not our problem. It’s a problem of institutional theory of cause. If you believe that autism is genetic, lifelong and static or a matter of Freudian phallic substitution, then our kids are miracles and my husband and I are living gods.
That’s right. We’re deities. We cause autism with our minds. We can also make it disappear through divine intervention. Bow down before us, ye mortals.
But if you believe autism is a form of chemical brain injury— an acquired, man-made, industrial-age affliction which can occasionally improves due to non-psychotropic, integrated medical interventions— then we’re just damned lucky.
Lucky relative to the many individuals whose injuries are far too severe to recover or whose families can’t afford it. Lucky relative to the horrendously high death toll among the afflicted. Lucky relative to being at war.
My husband and I manage the combat pretty well most of the time. You don’t curl up and give way to despair while a battle is still raging. Instead we “despair of” certain circumstances or conduct in a sort of “What hath God wrought in man?” kind of way. There’s no time for sadness. We have children to save and blessings to count. One blessing is our kids’ significant recoveries. It’s good news. But our good news comes with bad news about how our once non-verbal, once seriously ill, once severely disabled children were injured to begin with. We’re the bearers of more bad news regarding the risks our children still face. To our despair, we’re getting shot for it regular intervals.
What adds to the despair is that sometimes misguided attacks come from those within our own clan, from those who believe they mean well, who might dote over typical kids, cry over lost puppies in the pound or the plight of landmine victims half a world away. Some may even occasionally be generous with material resources, but never with time. Not the time it takes to read the books and studies that explain, nor the time it takes to get to know the children at the center of so much unwanted drama.
But we don’t hate the people who’ve caused these dramas or who’ve ridden roughshod over our children’s tragedies in the past. What we hate is the drama and the tragedy. I also hate going into details because I hate the details. I hate having to put anything related in clever terms to make it digestible or readable.
If I had to give one reason why my husband and I haven’t been able to bring ourselves to see or speak to the individuals who most recently maligned us or their enablers, it’s because the mere act of having to defend ourselves also requires dredging up memories of the worst periods of the children’s lives that seem to come with a soundtrack of screaming souls in purgatory. It’s as grim as watching the sun rise on three hours sleep for four years and made worse by having to go through it under the gaze of people who refuse to understand.
And now the same onlookers are having a problem because the kids play a hand of poker to decide who has to wash the dishes, and because they’re expressive and empathic and charming in ways that defy previous diagnoses.
But our children aren’t out of the woods yet. That’s probably another core reason we can’t face the snipers at the moment. If certain individuals judged and blamed in the face of past struggles, if they’ve already said or done terrible things in periods of grief and difficulty, what could we expect from them if, God forbid, any of the disasters that are statistically so common in autism befell our children in the future?
For the moment, the twins’ symptoms have become hazy and are wrapped in a lot of typical child behavior, but still surface enough to make them hard to be around for those who look to children to amuse them and provide them with reflections of family pride and golden projections of hope and unfettered potential. In some senses, the children’s risks are just beginning as they hit the teen stage. There are no guarantees of unfettered anything.
Is that perhaps the real crux? As outrageous as the charges against us were, the latest gossip firing squad wasn’t completely surprising since a few members of the extended family had given every indication that being forced to listen to explanations of our children’s past plights or present challenges was felt as a kind of assault on their consciences and an affront—simply too dark and upsetting to discuss. But with those dark, upsetting elements removed from the story, nothing about our lives or the children’s lives would make sense and this would naturally lead to further painful misinterpretations.
Imagine being shown a film clip of a man running around with his clothes in shreds, screaming, flailing and repeatedly flinging himself to the ground, and being left to assume you’re viewing someone undergoing a psychotic break… because a massive, rampaging bear had been edited out of every frame through the magic of CGI.
I recall one encounter we had with two extended family hecklers about five years ago. We were trying to explain why we’d been forced to homeschool shortly after the twins reported abuse at the hands of school staff. Of course the reason we were explaining so energetically is because we could sense our choices were not viewed as acceptable. In hindsight, the whole scene was black comedy.
At first we attempted to describe what happened in euphemized terms because the subject was still raw and hard to talk about. But the response we got was stone cold stares. We thought the listeners must not have understood, so we added a few details— our children coming home from school with welts and bruises, our son’s seizure after being physically dragged and shoved down the school corridor into a closet for annoying an aide, the school’s pointless strip search of our 8 year old daughter to preemptively find out of it she was “wired for sound” (not uncommon, unfortunately), the trips to ER.
But all the elaborations drew were more cold stares. We couldn’t believe it. The responses didn’t make sense. We explained a little more, began repeating ourselves. But still— cold stares. So out came the full color crime photos!
I think we stopped ourselves before reenacting the tragedy with interpretive dance. The verdict? That we should have the twins in school, that they wouldn’t have any remaining behaviors if they were in school.
Because… no bear. See how that works?
At the end of the day, you begin to realize the bear is the problem. The bear is the bad news, the unendurable truth that cannot be and so must be edited out, made to go away because then what kind of world would we all be living in?
But the bear is something else as well. The minds of the bear-blind play yet another interesting trick: confusing the bad thing with the individual to whom the bad thing happened. With the surgical removal of the evil force that caused the suffering and complexity, the victims become the monsters, the things that can’t be faced and which do not fit.
Obviously this applies to the whole scenario of vaccine injury, but not only to that. The bear is every impasse, every struggle, every rejection, every disaster and all the harsh things that pile up in the lives of families impacted by autism—all the things others don’t want to know but must be known to understand choices and actions.
My husband had since written long letters, made face-to-face appeals, explained until he was hoarse. Yes, bear. See the bear. Here’s the bear. Get it? Bear.
He thought it was settled, but the denialist tumor grew back. Our recovery efforts were crazy, the children never had autism, they’d be fine if they were in school.
Travelling Trauma Clowns
I’m sure homeschoolers of typical kids can relate to facing stubborn incomprehension as well, but the constant crisis of autism adds a layer of crazy circus music to the whole thing. It also doesn’t create the best frame of mind to grasp the chilling nature of selective empathy: when those people who dote over typical children, cry over lost doggies in the pound or the plight of landmine victims half a world away can go icy when faced with the dark, upsetting reality of your disabled children’s lives. Of the bystander response, you think this can’t be right, this isn’t like them, they just don’t get it, maybe one more clarification will make them see…
We are the traveling trauma clowns, wandering the wilderness, swallowing flaming swords, reciting our bitter litanies in clever terms and turning cartwheels for alms of understanding. Fuckyoulujah.
The worst part of these intermittent controversy storms was not that the critics were making up their own explanations to fill their gaps of comprehension—explanations that seemed to be cobbled together from old-timey Betelheimisms and random snatches of media drivel. The worst part was not even that they were spreading this garbage behind our backs in a way that actively destroyed yet more relationships.
Regarding the last blowout when we were accused of “overprotection,” it wasn’t what was said that enraged my husband as much as the context. The context is that a blood relative had been asked by a family friend why she was spending so little time with our children when they were living only a short distance from her. The criticism of our parenting was given as an explanation for why she didn’t.
It makes perfect sense, doesn’t it? Grave concern over the potential social isolation of children is best expressed by avoiding the children in question.
When a criticism doesn’t make sense and is repeated and repeated in the face of all evidence to the contrary, you might start to guess that it’s not a critique at all. It’s a rationale.
Because whatever was said behind our backs, or just within earshot, or to our faces, or expressed in eye rolls, glares, or abrupt subject changes— whether it was early criticism over our delusions that we’d ever recover the kids or later criticism that we’d ever believed they were severely disabled— the content was merely secondary to the fact that certain people really weren’t showing up for our kids.
Worse still, the rationales to avoid our children were spreading like an STD. In a letter to one of the critics, my husband wrote “While you’re ripping us to shreds, notice how your listeners’ eyes glow with relief since many were already looking for excuses to avoid our ‘defective’ children.”
Others in the family have sometimes shown awkwardness around our children or were even avoidant. They seemed mostly frightened of saying or doing the wrong thing but did not add the unpardonable insult of trying to rationalize it. And so we left certain doors open. In general, I think we tend to be pretty forgiving types.
For example, more than a decade ago in an effort to support a friend of the clan who, after dropping in and out of school for ages, finally got her nursing license, everyone at a Christmas get-together lined up to get a flu shot from her. My husband and I were only beginning to suspect that our twins—then toddlers—might have had reactions to previous vaccinations, so we refused on behalf of the kids and hesitated to roll up our own sleeves. But this nurse repeated the industry tagline that we should at least get the shots ourselves to protect our children from the flu, which the TV was insisting “killed more people than car accidents.”
We fell for the lie and took the shots. The fallout was like the murder medley from The Godfather. It went on and on and on. Aside from ending up in ER with a severe respiratory infection and miscarrying a pregnancy I didn’t know I was carrying less than two weeks later, both my father and I developed Guillain-Barre. I was lucky my case was only “moderate.” My father developed full paralysis and died. My husband fared a little better: a lifelong animal lover with no allergies to speak of, he developed a serious allergy to dander. Since our twins were still nursing, I have no idea whether the vaccine I received that day after Christmas contributed to their expedited descent into autism over the next few months.
After realizing the connection between some of these events, the newly licensed nurse quit nursing, the family stopped vaccinating their kids and became staunch vaccine safety advocates. So we forgave. I never mentioned the miscarriage or our suspicions that second hand vaccine exposure might have been our twins’ final straw. I reasoned that industry wasn’t spending billions in PR and buying complicity from medical training institutions for nothing. We’d all once fallen for the bull at some point and I couldn’t imagine how hellish it would be for someone in the medical profession to realize they’d left a trail of bodies in their wake.
But our forbearance ended several years later when, immediately following the twins’ school crisis and a few weeks before Christmas, this couple tried to aggressively exact payment from us in order for their typical son to keep playing with our kids. We were led to believe the family was dropping their son off at the house every day out of empathy for our children’s trauma and loneliness. Needless to say, that playmate disappeared from the twins’ lives abruptly when we failed to pay up. The twins cried for months, begging us to pay the ransom.
We heard later that addiction was involved and that this family had shaken down their own relatives in the same way for years. But our children were too young to understand things like criminal psychology or the tormented collapse of the American middle class and mourned all the same. The moral to the story is that grave concern over the social isolation of the disabled and lonely has multiple uses, including extortion. Consequently we unforgave.
The Untellable Story
We all talk about forgiveness a lot. We all struggle with it—the question of when we’ll be forgiven as the bearers of bad news and when our children will be forgiven as living triggers for bad conscience and for having been statistics. So let me add another crime to the rap sheets: let me be forgiven for writing this.
As for forgiving clan misconduct, I greatly respect certain friends who’ve chosen to tolerate awful in-laws for the sake of spouses’ peace of mind and because they’re somehow able to shield their disabled children from any related negativity. But not everyone can pull this off. With our more recent holiday drama, after the wave of despair for the sorry state of humanity had passed, my husband said that, just as environmentally injured children can no longer tolerate one more molecule of toxic exposure, many of their parents can’t take another ounce of betrayal.
Every betrayal and negative incident adds yet more complexity and darkness to the untellable story of the autism epidemic and vaccine injury, one that already makes people’s ears bleed as it is. Worse still, the untellable story becomes a personal life story if an affected child recovers enough to perceive and recount it.
The untellable story of autism is already laced with enough anguish. It’s harder still to live down shocks that continue to repeat themselves. The more fraught the story gets, the more betrayal and abandonment vignettes, traumas and bad memories are added to it, the greater the need to tell it but all the fewer able to listen, increasing the specter of solitude for individuals with autism.
We didn’t sweat blood trying to get our children to talk only to have them eternally silenced. We can only try to make the story they have to tell more uplifting, assemble more hopeful chapters and a warmer cast of characters so that when we say “This is a friend,” or “This is family,” it’s fused with that intuitive but unmistakable sense of being wanted, heard, understood, accepted for all they are and have endured. Our children may struggle with certain challenges all their lives but they’d be ahead of the game and safer if they simply have that part clear. Many perfectly typical people don’t have healthy social radars.
There’s a saying from the Daozang: “If you want the universe to fill your rice bowl, clean it out.” How sad to have to do that but we’ve wondered how perilous it would be not to. Before committing suicide, the late comedian and actor Robin Williams said “I used to think the worst thing in life is to end up alone. It’s not. The worst thing is to end up with people who make you feel alone.”
Even if the majority of people around us express support for our efforts to heal our children—and we’ve been mostly lucky in that sense as well— a single betrayal can make it hard not to doubt the warmth of those who make the effort. Each nasty remark or gesture made us wonder when those remaining would begin to buckle because each defection leaves fewer supporters holding the two ton bag of our bad news. It’s made us quicker to withdraw if we sense our children are not welcome. It also makes us weigh the potential heartbreak of our children if we allow them to form attachments to people who are giving signals they’re about to sabotage and bail.
Is it any wonder that so many autism families talk about forming surrogate tribes? One price of being alienated by family is being forced to form new allegiances which can be risky, though it’s often enriching. One friend pledged to step in and be the kids’ weird aunt who accidentally bakes dog hair into the cookies and knits hideous sweaters. No way could we turn that down.
As time passes and the kids begin asking “Whatever happened to…?”, we won’t lie. If our children’s life story is to become genuinely uplifting, first it has to be true. Hopefully by then our attempts to fill in the empty spaces and instill in our children a grasp of human nature, human frailty, courage, cowardice, etc. will have taken hold and they’ll be able to view with empathy the failings of those who didn’t have enough to go around. We may lace it with humor to make it easier to process, but one way or another, they’ll get the full story. It’s theirs, after all.
Adriana Gamondes is a contributing editor to Age of Autism and one of the blog’s social media administrators.