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|Carrying the Hope - Page 6|
In my heart, I believe that I'm British psychiatrist D. W. Winnicott's "good enough" mother. In my heart, I believe that I was and continue to be empathically attuned to Brian pretty well. That wasn't enough to prevent Brian's ASD, and it's probably not enough to remediate it. Parenting him requires vigilance and creativity far beyond parenting Courtney, who meets and often exceeds my level of engagement with her. She came into this world ready to dance relationally, but Brian must practice each microstep of that dance over and over to become competent at it.
He deserves parents who have the energy and the persistence for all of that practice, and I frequently lie awake at night replaying the day's missed opportunities and rushed interactions. Did I offer him 80 percent declarative language? Did I wait to speak to him until he was oriented to me? Did I properly reduce external demands on him, so he could experience productive uncertainty? Did I share with him my self-narrative, so he could continue to master the complexities of intersubjectivity? Never well enough it seems.
Why Him? Why Me? Why Us?
Autism not only transformed me as a mother, it transformed my marriage. I think about standing with Todd under the chuppah 10 years ago as bright-eyed and optimistic 25-year-olds, ready to tackle any challenge that came our way. Certainly his law degree, my doctorate in psychology, and our endless conversations about our relationship would protect us from the expected and unexpected challenges of marriage, right? Even the 50 percent divorce rate didn't scare us—I'm a marriage and family therapist! We knew our strengths and our "growth areas" like the backs of our hands.
Parenting brought some unexpected challenges. Who knew I could use such foul language at 3 a.m.when requesting help from Todd to change Brian's diaper? But I think we both agreed that we handled the transition to parenting fairly well overall. It was the transition to special-needs parenting that rocked us to the core.
Under the chronic stress of raising a child with special needs, everyday annoyances begin to feel unbearable. Emotions are too raw, and fear is too palpable, to be able to handle a tiff about a forgotten errand or an unrecorded check. Those "growth areas" turned into painful triggers. Todd said recently that he feels that autism takes all of a marriage's inherent vulnerabilities and amplifies them. I agree.
I remember one night when Todd walked into the family room where I was watching a news program. It must have been a story about the pharmaceutical industry, because I launched into a rant about how corruption and greed have hurt our child. Todd looked at me and said, "I find your rage really unattractive." Ouch! He'd readily admits that he's always been drawn to my affect, my expressiveness, my passion. But around Brian's ASD, my passion about the dangers created by the drug companies hits him too close to home, because we've developed different narratives about why Brian is the way that he is. My narrative looks back at my choices and gets political. Todd's narrative doesn't look back. He takes what is, in this moment, and tries to cope. I've long admired and needed Todd's levelheadedness and unflappability, but around Brian's ASD, his ability to just "accept what is" bewilders me. Our different storylines have been difficult for us to reconcile. I suppose I'd say that we try to "witness" each other's stories, but I think, mostly, we try to focus on our points of similarity and connection.
Our relationship was built upon a deep appreciation of each other's senses of humor, and autism has been added to our repertoire. We share a lot of mordant humor on the subject. Some of the things we say to each other, jokes that we find healing and hilarious, can never be repeated. Okay, fine, I can share one example. While recent holidays have been happy and overwhelmingly positive for our family, in the early years, we'd been known to dictate to each other the text of a fake "Holiday Letter" to friends and family. For instance:
"This year we were thrilled to drop $60,000 on a variety of complicated therapies, only to be told Ôit's a long road ahead, but you guys are doing so much good.' Our Christmas miracles included nearly complete social isolation and 382 viewings of ÔThe Wiggles Safari.' Another gift was Brian's new habit of pulling his sister's hair every time she cries (as you know, newborns rarely do that)! Finally, it wouldn't be the holidays unless you could cozy up to your spouse. Check that, we haven't been intimate in a while. Best wishes for a less miserable New Year!!! Todd and Alexandra."
Is this appropriate? Definitely not. Is this ability to make light of your pain in a manner that connects you with your partner healing? You're damn right it is!