My whole family flew to Washington, D.C. last week to watch Kelly compete in the national spelling bee. When I was a kid I fantasized about my own crowning glory at the bee, but I never won. Not even at the school level. One year it was delirious; the next it was scepter. The disappointment has morphed into a vivid but not-painful memory of learning that life goes on, that hard work does not always guarantee success. But for Kelly her hard work did pay off this time, and we went to Washington to live out my dream. Isn’t that why we have kids, after all?
If you watched the bee, you know already that Kelly did not win. She was eliminated early on when she misspelled talavera, a kind of Spanish pottery. My pride in my child did not diminish, but her own pride took a beating. She cried for an hour about injustice, embarrassment, and the inadequacy of her preparation. I loathed having to watch her suffer, but I could endure it because I was watching her mature too. After the hour of tears she dried her eyes and asked to binge watch her favorite television show. By the next day she enthusiastically returned to the ballroom where the finalists competed. What a resilient child! What an incredible mother I must be to raise such a resilient child! I’m sure I sulked longer over delirious and scepter.
And this is where the reflections on raising a child with special needs come in: Sam was not so resilient. After Kelly lost, Sam insisted that the remaining spellers would ridicule Kelly, and at the concluding banquet they would treat her as an inferior. She would be forced to sit at a separate table wearing her (non-existent) shame. These concerns persisted all week, and my husband and I expended most of our energy shielding Kelly from her sister’s anxious ruminations.
What happened here? I’m trying to create a coherent explanation about why Sam was so devastated, despite her sister’s relatively quick recovery. Kelly’s loss weighed on Sam as heavily as did her own failure in the lifeguarding test and in the history debate wherein her classmates votes that Jonas Salk trumped Temple Grandin in importance. In all three cases her refrain was the same: nobody will respect me.
I get it and I do not. Why is everything about respect? Why does she so adamantly believe that accolades, not character, determine one’s worthiness? Why are people so capricious, in her world, about their judgments of others? Just as I cannot take credit for Kelly’s resilience, I will not shoulder the blame for Sam’s misguided model of human nature, for her belief that only binary activities (win/lose, pass/fail), no matter how insignificant, count on her personal Judgment Day, which happens anew every day. I really do not believe that we have communicated to her in any way that we will appreciate her more—or less—depending on her accrual of achievements. And yet, she is convinced that her classmates’ respect in contingent on such measures. She does not grasp that kindness, generosity or, unfortunately, dramatic meltdowns could influence their opinions of her. Even in the realm of academic achievement, test scores mean nothing. Is it because they are private information, or is it because scores on a continuum fall out of the binary?
In some ways Sam knows herself well. She knows she is artistic, intelligent and autistic. She is comfortable being autistic and does not want to change or be changed. Yet in other ways her “core” is so fragile. I often assume that when she frets about other people losing respect for her, she means she will lost respect for herself. Perhaps. Perhaps I’m completely off base and need the explanation to impose some causal order in my own world. During one of our walks in Washington designed to protect Kelly, I told Sam that a weak Theory of Mind is associated with autism; she has trouble inferring other people’s thoughts, motivations, and priorities. Therefore, she does not realize that other spellers are focused on themselves and have no desire to dwell on Kelly or judge her character—just as her own classmates do not judge her by her success on a school assignment. (On a side note, I ended the week realizing that this speech was a bit disingenuous. Almost every parent I met asked, within one minute, “How far did your speller get?” Insert a mental “irritated” emoticon here.) The explanation about Theory of Mind seemed to calm Sam, but I do not think it reorganized her thinking. Maybe it was helpful, or maybe the brisk walk settled her.
When I observed to Sam’s therapist how resilient Kelly is (expecting praise for my parenting prowess), she attributed it to growing up with Sam. I did not have a chance to ask her to elaborate, so I’ve spent the week guessing at her meaning. Is Kelly resilient because she intuitively understands that our household cannot afford two thoroughly dysregulated children? Is she resilient because her sister’ challenges have helped her recognize her own strength of character? Is she resilient because she overhears so many conversations with Sam about the qualities other people value? Am I in the ballpark?
I think that one of the main points I’m making in this rambling discourse is that parenting cannot account for every aspect of the way we understand the world (duh). Perhaps my own parents are not culpable for every one of my neuroses that I’d like to pin on them. Maybe it’s my hypotonia (low muscle tone in my core) and my visual convergence insufficiency (bad peripheral vision if I remember correctly), which led to a weak vestibular system, that caused the neuroses. As a parent, I would be delirious with happiness if I could wave a magic scepter and nurture only the perfectly well-adjusted children I planned to raise when I was pregnant. In this case, though, it’s a certainty that hard work will not guarantee success. Life goes on and we redefine victory. It’s called maturation.