The Hidden Hamilton
I usually channel my emotions related to Autism April into fundraising, to keep our Maryland chapter of The Autism Community in Action (TACA) afloat. Family and friends step up generously every year, which leaves me with the (very welcome) problem of how to thank them. Since they almost always find my campaign on social media, I also use social media to express appreciation. Sometimes the posts follow a theme, like the year our chicken hat appeared in each one. I decided 2019's theme should be Leah herself. I’ve written about slices of our family life that I can relate to each donor, in the hopes that they realize I appreciate them, and not simply the dollar amount they’ve given. A relatively new friend, found through the music parents’ network at Lauren and Maddie’s high school, not only donated, but commented that she’s enjoyed reading the appreciation posts. She said, “I’m curious what you’ll have to say about mine, because I’ve never met Leah.”
I probably need to fix that.
Juggling
We've grappled with balancing Leah’s needs and her siblings’ lives for years. Involving Leah in activities requires triage, with most endeavors falling into one of three categories:
Preferred: Chances of success are high
Non-preferred but unavoidable: A ‘make it work’ moment that can be successful when properly planned
Not wired for that: Attempting this is likely to elevate everyone’s blood pressure
As Lauren and Maddie have grown, their activities have fallen into the ‘not wired for that’ category more regularly. Music dominates their schedules, with accompanying early arrivals for concerts, long waits for showtimes, and often crowded venues. In elementary school, Leah's restlessness blended fairly easily with the packs of younger siblings who were always there too, and the programs were short and sweet. With age, concert programs have lengthened, adding one more high hurdle in the way of successful attendance. I thought that high school marching band, as an outdoor sport, might be more Leah-friendly, until I realized the required silence and stillness during performances is more stringent than at many indoor events.
Mixed in with Leah’s disability is some unique brilliance. She can quickly assess the limits of an environment and identify escape routes she can use when she’s had enough. Disruption is one of her top strategies, and once she’s maxed out, etiquette is irrelevant to her. I don't like leaving her out, but setting her up for a meltdown does no good either.
Instead we schedule aides to stay with Leah or we take turns attending school activities. I hesitate to call it a win-win because it isn’t that satisfying. Calling it a tie might be a better description. I can tell it bothers Leah sometimes to be the one left behind, especially since her sisters’ commitments have increased in high school, but I also firmly believe that siblings have a right to enjoy their preferred activities worry-free, and with the undivided attention of at least one parent. So for now, we divide and conquer. While a divided household was never part of our early family planning, like many other aspects of life with autism, we trade our original, idealized vision for one that feels safer, and hope we can meets as many conflicting needs as possible.
Unseen
Since Lauren and Maddie moved to a magnet program at an out-of-area high school, we inadvertently created a new phenomenon: The Hidden Hamilton. At this new school, we aren’t at events with people we’ve seen year after year. And Leah has no desire, after her own lengthy bus ride, to travel 30 minutes in another direction to hang out at another high school. She has let me know this in strong and rather unsafe terms, more than once.
In our neighborhood, Leah is a presence on her own terms. Her favorite local restaurants know her order and input it when she walks through the door. She swims at our community pool in the summer, and sometimes when one of Leah’s aides takes her out, they come back with a report that someone recognized her and tried to stop and talk. (Results vary.) But in this new community, she’s invisible. My friend’s comment, not intended to be judgy, brought an issue that’s been in the back of my mind up to its forefront. I would like Leah to see and be seen at her sisters’ high school, if for no other reason than I don’t want family, friends, and least of all Leah herself to think that shame has anything to do with why she stays away.
This particular donation provided not only valuable fundraising help, but a chance for reflection. It’s time to set a new goal for Leah, to nudge her a step or two, gently, toward an increased ability to engage in her sisters' activities. As every IEP-savvy parent knows, there is little point in a goal without an objective. My first one is fall football game. Leah can support her sisters' beloved band in an environment where extra noise is the norm and not the exception, where a concession stand might be a valuable tool to create a ‘make it work’ moment, and where Leah can be visible for as long as she can handle.