Friends sometimes ask how my spouse or I are adjusting to my recent neurological diagnosis. It's unusual that someone asks how the changes have affected my immediate family, even though it has caused a massive rewrite of our collective past. So many times before my behavior was described as “difficult” or “frustrating” and needs to be changed to “struggling.” We realize kids born in the 80’s were rarely diagnosed with Sensory Processing Disorder prior to adulthood. Still, it’s hard not to wonder how my life might be different if I had started therapy a few decades earlier.
How do we change how we see the past when we can't change our actions? How do we move forward collectively? Should our new knowledge make a difference? Would we actually choose for our relationship to stay the same if that were an option?
I wrote the following letter to my mom after a visit during which the necessity of a revision to our shared history was hard to ignore. While I make references to our personal relationship, there are many families similarly negotiating new insights with the way they see their past.
During your last visit we had many opportunities to discuss my recent diagnosis. Living 1,000 miles apart, you don't usually see me struggling up close and personal in my natural environment anymore. It’s easier for us both to chalk problems up to holiday craziness when I visit at Christmas. I know you’d rather splice together all our happiest memories or sift through a photo album than sit helpless with only knitting to occupy you while I tread water—stuck in not-okay mode. You told me you wished I understood what it was like to be a mom—because I don't have that personal experience. I’d argue that I know a bit about being a mom from having you in my life. This is what I'd like to tell you about being the mom of a kid who was finally diagnosed in her 30’s.
Have you read Welcome to Holland—that story about how having a child with a disability is like planning a trip to Italy? In this extended metaphor, author Emily Perl Kingsley describes how these parents read all the guidebooks and take Italian lessons and purchase special clothing only to land in Holland. Holland is a truly lovely place, just not “the plan.” It could be difficult for a person to appreciate the unique charm of Holland if they’d built up their expectations of another place. Well, I have news for you, Mom—you have unknowingly spent the last three decades in Holland. I'm really sorry no one told you. I only just found out myself.
I imagine you have been suspicious for a while that this has not been the typical Italian experience. For one thing, people keep looking at you funny when you ask for directions to the Colosseum, and you were shocked at how few authentic Italian restaurants you could find. The travel agent told you that strong accents would make their mother tongue unintelligible, but you bought the pocket translator anyway. She knew you'd been dreaming of your holiday in Italy since childhood and didn't want you to feel discouraged when there were inevitable frustrations. I expect it has been very disorienting. I’m so sorry you spent so much time asking people who’d made the trek for recommendations and envisioning the pictures you’d take—pretending to support the Leaning Tower of Pisa. I feel bad that you haven’t been able to check off all the items on the itinerary you so thoughtfully made, but I am so grateful that you have managed to find joy in a place that didn’t match your guidebooks and in a daughter for whom child rearing manuals were probably misleading.
Thank you so much for being a mom who loves unexpected tulips and windmills and Rembrandt's. Thank you for facing the unfamiliar as if gesticulating wildly in place of a common language. You called me “eclectic” and “special” well beyond when I fully embraced the label of “weird” and stopped wanting to be “unique” because it felt lonely. You were proud that I danced to my own syncopation, although you remain embarrassed that I insisted on wearing old lady hats to church throughout preschool. Still, you continued to proudly tell all the other moms about the little things that made me off-beat, even though those features seemed to come at a social cost with my peers. And when we couldn’t figure out what special things my peculiarities were meant for, you sat in the guidance office with me and went through the books of college programs until we found a major we hoped would reward me for being myself.
Our relationship will never be one sunny day after another—even Italy has rain—but you have always believed that I’m supposed to be this—whatever positive word we’re using this week. Without you, I doubt I could be thirty-something and integrating a new and sometimes terrifying part of my identity with the confidence that whoever I am—I like her. I’m not sure I need all the euphemisms for “weird,” but I know your unrelenting enthusiasm for my most off-center qualities helps me know that whatever I am—I am all right.
With love and gold stars for effort,
Your “Exceptional” Daughter
For More Information About Lindsay Parker, follow her on Twitter @SensoryMuse