Charlie, Not Otherwise Specified (#260)

These are the specifics of Charlie’s day off from school: He was thoroughly smiley and social, as in he even got upset when left by himself. In the morning, I hung around until the last minute to drive to work; Charlie ran to the window to watch, then ran for his bike helmet and coat and raced out with Jim to ride his bike. After a proper "dad and boy" lunch at the White Rose System, they played catch in the front yard and were waiting for me on the porch (I was a little late, due to a traffic light falling down across the middle of Routes 1 & 9). Jim drove off to his office and Charlie, watching from the second-floor window, staged a mock-tantrum (yelling "Daddy, Daddy," then grinning "I didn’t mean it!"). We have a big back yard but Charlie has always preferred the front because he likes to be part of the action; today, he spent almost an hour on the lawn, saying "hiiiiiii" to the neighbor mom with the twin "bay-beees."
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Charlie was really out there to wait for his ABA therapist and got briefly upset when he went upstairs, where I found him undressed and rubbing his forehead. He must have wanted to change his clothes, I thought as I directed him to get clean ones–and then, as Charlie returned to his smiley self, Charlie didn’t want to be alone.

The ABA therapist came and that made Charlie smile even more and right through until Jim piggy-backed him up for bed. We went to the grocery store which has been renovated and Charlie’s smile disappeared only when he had to hunt around the aisles to find the sushi. He pushed the cart from parking lot to parking it in the "return carts here" stall and carried in a big bag of groceries.

From when I started writing this blog back in June, the one criterion I have held myself to is to write about the concrete specifics of Charlie’s days. I am always thrilled when I hear how something that Charlie does or says is like what another ASD person does, even as I am aware that this is Charlie’s blog, and that there are some things that Charlie does and says that are Charlie-specific.

It’s this dialectic–this dialogue–this dance between the specific messiness and delight that we parents live among and the thoughtful, inevitably distanced understanding of professionals that is at work in Elizabeth Weil’s March 12th New York Times Magazine article, A Wrongful Birth?. The article opens with the story of the Brancas, whose son A.J. was born six years ago with Wolf-Hirschhorn syndrome, a rare genetic disorder that "commonly includes mental retardation, physical disfigurement, inability to speak, seizures and respiratory and digestive problems." The family sued Donna Branca’s obstetrician on the grounds that their "poor care deprived her of the right to abort [A.J.]." Weil pinpoints the Brancas’ case to show how, due to advances in pre-natal genetic testing, "we should have a right to choose which babies come into the world," as such testing both enables us to know any "major flaws in our fetus’s health" and also to provide us with the information to "end the pregnancy — if those flaws suggest a parenting project we would rather not undertake."

Weil interviews a number of bioethicists and other experts, as well as noting numerous court cases in which families have sued their doctors in "wrongful-birth" lawsuits, such as Gleitman v. Cosgrove in 1966, in which a mother who had contacted rubella in the early stages of her pregnancy was "assured" that the baby would be fine; the baby was born with "’substantial defects. . .in sight, hearing and speech.’" (The court decided in the favor of the defendants, the physicians, while acknowledging the parents’ emotional anguish.) In Becker v. Schwartz in 1978, an over-35-year-old mother "was not advised by her doctor that her advanced age put her unborn child at greater risk for birth defects." The mother gave birth to a child with Down’s Syndrome, sued (this was after the passage of Roe v. Wade in 1973), and won the right to seek financial, but not, emotional, damages. While the court, as Weil writes, "…did recognize the family’s suffering, [the court] reasoned [the family] ‘may experience a love [for their child] that even an abnormality cannot fully dampen.’"

Those are the the wages of autism for you–financial "vs." emotional–as the courts rule.

Besides the Brancas (whose doctors were found to be "guilty of medical negligence" and won an undisclosed multi-million dollar settlement, which is now in a trust fund for A.J’s care), the other family that Weil writes about is her own. Just before the middle of "A Wrongful Birth?" is a paragraph in which Weil discloses her and her husband’s decision to abort the fetus she was expecting after being told (at 23 weeks) that her "unborn son had contracted cytyomegalovirius, or CMV, a virus that if contracted by the mother for the first time while she is pregnant and is passed along to her fetus can lead to serious birth defects. Most likely our child would be deaf, blind and have serious mental retardation — a doctor friend told me that this prognosis could make a child with Down look like a walk in the park — but no one could tell us for sure what our unborn son’s health would be like."
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Blogs written by autistics and by autism parents provide the kind of specifics that make the theories of professionals just that, abstract theories versus the concrete realities of lives lived 24/7 with autism. In the closing paragraph of "A Wrongful Birth?", Weil writes "My family continues to mourn the child we don’t regret terminating," then finishes her article with the words of a bioethicist, Laurie Zoloth:

"’Anything you might say about the wrongfulness or the rightness of a birth, the particularity of that choice is only, and always, experienced by a particular set of parents in a particular family with certain grandparents, certain aunts and uncles, in a certain religion on a certain block in a certain neighborhood. These are circumstances that as professionals, and certainly as bioethicists, it’s nearly impossible to fully understand. And then, of course, we have the luxury of walking away.’"

Walking–running–towards is more what I did a myriad of times today, from the moment we heard Charlie knocking on the wall when he woke up (because he must have wanted our attention), to everytime Charlie asked me to point the computer mouse to a different photo (he is getting the "two clicks and it opens" connection and needs to learn how to manipulate the mouse; his teacher has a program for this). When Charlie makes what might seem the minutest progress, it is cause for party-level joy. And when Charlie head-bangs. all poetry, all philosophy, all anything but helping him to learn other ways to express himself go straight out the window, and chaos is come again.

This behavior is much more under control and no longer entails a lengthy tantrum. Charlie is calm in a minute, thanks to an interdisciplinary approach of education (based on intensive ABA), "traditional" and "alternative" (i.e., "biomedical) therapies, and a long litany of speech therapy, simple love, OT, daily exercise, dogged advocacy, weary but steady faith, and something else I’ll remember tomorrow when I’m driving to teach Greek.

"We may not want to give birth to disabled children, but at the same time we do not want to see ourselves as reproducing in a way that calls to mind prize cattle," Weil writes. She then notes that "The moral quandary we find ourselves in pits the ideal of unconditional love of a child against the reality that most of us would prefer not to have that unconditional-love relationship with a certain subset of kids."

I have felt such "unconditional love" for Charlie at his best moments and, with a gulp in the stomach, at his absolute worst. As many of you know, Charlie’s worst moments involve self-injurious behavior; Weil cites the terrible case of a "66-year-old woman named Wendolyn Markcrow of Buckinghamshire, England, who last year on Easter Monday gave her 36-year-old son, Patrick, 14 sleeping pills and suffocated him with a plastic bag and then attempted suicide. Patrick had Down syndrome, rarely slept at night and hit himself in the face so regularly and forcefully that he detached his retina. When arrested, Markcrow told the police that she had ‘snapped.’"

When I initially posted about Weil’s article, a fellow mom-blogger commented that "sometimes the moral quandary pits the unconditional love parents have for their unborn child against the reality that they would be subjecting that much-loved child to a painful life they would never choose for themselves – a Hobbesian existence that is ‘solitary, poor, nasty, brutish, and short.’" Certainly, our pre-natal classes at Missouri Baptist Medical Center made nary a mention of having a disabled child. They didn’t ask us to even consider it; to even imagine it.

The stories of the Brancas, of Weil herself, of Wendolyn Markcrow, call on us all to keep on thinking, keep on asking questions, keep on understanding who we were before autism crashed or crept into our lives, and who we have become in raising our lovely children as best as we can.

I do know one thing which is, spend an hour–a half-hour–with Charlie and you’ll have the best evidence for why the messy anything is worth it, because of what life with Charlie requires you to imagine: New shades of dark, and new spectra of light that I can’t otherwise specify.

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Comments
2 Responses to “Charlie, Not Otherwise Specified (#260)”
  1. Christine says:

    Kristina,

    As always: beautifully written and thought-provoking.

  2. Kristin says:

    Another thought provoking entry. I really enjoy reading your posts, because I always leave with something to ponder. Perhaps even enlightening a new way of thinking.

    I must say that I am thankful that I wasn’t told or given a choice with Gabe. Although we have a long road ahead, I can’t even begin to imagine what my life would’ve been like without him. Autism is not an easy ride through the park. As parents you are challenged beyond your wildest dreams, emotionally, financially, and spiritually with or without an ASD diagnosis. I also disagree with anyone that believes Autism is just a new way of thinking and parents need to accept their ASD children as they are. It’s not that I want Gabe to be NT, I want him to be safe, healthy and able to embrace life to HIS fullest capacity. Nothing more, nothing less. Don’t we really want that for ALL our children. We don’t want to change them, we just want to know our children will be OK.
    (I’m getting off the pedestal now. See? Your posts just get my mind going!)

    Kristin

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