Wednesday, May 4, 2011

A Mythology to Live By: Priscilla Gilman's Journey as a Special Needs Parent

In my American Literature course this semester, I worked to weave Joseph Campbell’s vision of the purpose of mythology throughout the pieces we read, to get students to consider the role that literature, in its many mediums, plays in providing the bedrock on which we live our lives and derive meaning. In a world in which religion no longer dominates our culture and for many people no longer lives and breathes, providing the answers for all life’s mysteries and meanings, the stories we listen to, watch, or read often become the essential framework on which we hang our own life narratives. Even when we maintain a religious belief structure, it is often not the dominant feature of our lives, and the stories we enjoy are often much more immediate and relevant.

This is not necessarily a bad thing, but it is a scattering thing, one that further fragments our society as we rarely have the same tastes and experiences any more, but it is also a left-hand pathway of being, in which we are all free to find our own ways to be, our own meanings, and our own band of merry travelers to move along with.

One band of travelers I choose to be on this journey with is other special needs families. There is a commonality of experience that often, especially if you segment yourself even further into a particular faction, provides instant bonding and acceptance. It also provides an already established framework to build one’s narrative upon.

In the online autism world, the most obvious division is between the neurodiversity advocates and the curebies (for whom I am subsuming the biomed, anti-vaccine, alternative medicine advocates). This dichotomy provides a wonderful framework for whichever side one chooses. Both cast themselves as the white hats with the other side as the black hats. It’s a heady, winning cocktail: instant conflict and the chance to consider oneself as the white knight fighting against impossible odds in the name of one’s child or one’s self, whichever way it goes. It’s an interesting cultural experience to watch play out, to say the least, and an even more interesting one to be a part of, to be both observer and participant. Very rarely do folks cross party lines, and true friendships between folks across the divides, especially on the extreme sides, are rare. Look at the advantages, though: instant membership, rules, support, and an enemy to fight. It’s not at all a surprise, I think, to see these divides occur, especially in a population that already tends towards dichotomous thinking.

Not all families online participate in this division, and there is a large (although perhaps less visible) contingent that is focused on supporting others without requiring allegiance and in helping their children and themselves function to their best ability. It’s a lovely community to be a part of, and it encompasses autistic individuals and families both. In this community, when there’s a difference of opinion on causation or treatment, there’s less acrimony because that position isn’t the dominating factor.  Folks are focused on different things. They have a different mythology, so to speak.

The tapestry we weave for our lives’ journeys is dependent on the stories we choose to listen to, make ourselves open to. The literature we read, the movies we watch, the music we listen to weave together to provide a foundation upon which to judge our own experiences and the appropriate reactions. Priscilla Gilman in her luminous The Anti-Romantic Child: A Story of Unexpected Joy provides a compelling and emotionally riveting narrative of her journey into the world of being a special needs parent.

Gilman begins with her foundation; she takes us through her childhood and the importance of literature, of creativity, of the written and spoken word, in her life as a child. She moves us through her college education and the complete undergirding of her life with Wordsworth as bedrock upon which to base herself. She shares her courtship with her now ex-husband, and how his differences from others drew her to him, how his shared love of literature became their bedrock. Wordsworth, in his immortal poetry, provides guidance for each step of her personal life, and even when (perhaps especially when) his idealism of marriage, motherhood and childhood are far from her reality, Gilman finds solace and purpose in relating his poems to where she is in her life.

One cannot live by Wordsworth alone, though, and the music that provides comfort and energy also permeates her memoir; her tremendous love for music and literature are things she works assiduously to share with her oldest son who shows himself to be different, precocious, hypersensitive, and uniquely himself, all while hearkening back to traits he shares in common with his parents. Readers who’ve been on this journey to discovering that their wonderful, unique children are so different from the norm, need so much help as to render them “disordered” and “disabled” and in need of a label, may recognize themselves and some of their own journey here. My husband and I, parents to three children who are on very different places on the spectrum, can see where our issues and distinctive traits manifest in our children, and even more so, where they are magnified and create problems that require more effort and innovation.

Not all parents are fortunate enough to see and appreciate that reflection; sometimes the differences are so great, the loss so deep, that answers are required outside of ourselves and our genetics and the environments we create around our children. While Gilman seems to have been spared the need to look at outside blame, I think she fundamentally understands what most parents go through on the way to accepting the reality of a disabled child; Gilman writes, “To question your grasp of your child is to suffer a great loss.” Some parents are able to reconcile this loss, find a way around it to the other side, to the “unexpected joy.”

While much of her son’s life relayed in this story is more from the perspective of how her husband and she navigated how to best help him, the last part of the book turns to her son and the strides and progress he makes; it becomes less about her journey and more about their journey together, as it should be for all parents and children. As our children grow, they become more active participants in our relationships with them, and reading about the blooming of her oldest son, his relationship with his brother, parents, and the community they help him build for himself, is truly a joy to read.

My copy of Gilman’s book is dog-eared; there are so many places where she wrote something that really touched me, either with its timeless truth or the beauty of its prose so that I had to mark it (and force myself not to scribble in the margins). She weaves the poetry of Wordsworth and other greats throughout the book, making it not just a memoir about her finding her path and helping her son with his, but an ode to the muses, as well, a clarion call for other parents to make their own bedrock upon which to stand. We could all use a more defined mythology to build our lives on, one that lives and breathes and moves within us, coursing through our veins and beating in tandem to our hearts. Upon such bedrock, we cannot despair and will never be lost.

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