I know an extremely talented writer, Rebecca Moore, who writes a blog that I love….”What would the Wertis say?”…you can read it here. Rebecca’s blog posts are sometimes hilarious, always thought provoking and are written with a command of words that only truly gifted writers possess. She writes about disability, world travel and living abroad, life in the south. She writes about being a woman, being a wife and mother, using her own beautiful photography and clever graphics to engage her readers. I love reading her posts.
With her permission, I have reprinted one of her posts below. In an email chain between us about this post, Rebecca said this about what she’s observed in our programs:
If you put kids of differing abilities together in certain settings there is this kind of magic point at which the disabilities or normalcy are sort of irrelevant.
Wow. To me, Rebecca’s words a testament to the importance of what we’ve created in The Johnny Stallings Arts Program. We have found that “magic point” by bringing people together to participate in the arts. If you visit one of our classes, you will see kids and adults with all sorts of diagnoses together with typically developing peers and ability levels make no difference. Everyone learns from everyone else. Everyone encourages everyone else. Everyone is included equally.
I know you will enjoy “Someday” and hope you will subscribe to Rebecca’s blog! You can read the post in its original format here.
I started this post in headphones one morning because the older daughter was having a bout of perseverative vocalization, and it gets into your head, all the phrases she has collected, the classmates’ Dr. Who voices from eight years ago, bird sounds, the sounds from wherever, it’s there like all of the conversations of Earth that travel through space.
Also, my desk is in the hall and her father’s baseball podcasts can be hard to tune out. I normally use headphones if I am doing work with sound files that would disturb others, but people are not creating noise to communicate with me right now, they are in their own worlds, and I am in mine.
The cat jumps into my lap, reeking of Justin Bieber perfume, a Christmas gift the year that the older daughter liked the pop star. She realized at some point that he would never come here, that their love was only her love, lopsided, unrequited and doomed, yet she has rediscovered the perfume and emerged from her room in clouds of it. It’s what girls like to do, she informs me. How has the cat come to smell so strongly of the cheap, feminine scent of Someday? Just hugs? Are you sure?
I have taken notes about my daughter for years, notes to record the milestones of infancy, notes for teachers and therapists, family journal, notes for the book about one mother’s fierce journey, but then she has never asked me to tell her story and also it’s her story. Which is a question for anyone who sets out to write about anyone, even their own experiences in the context of living in the world with people, in the house with people: where does their story end and yours begin?
When the internet was young and we were just venturing out into the world of our daughter’s diagnosis we would stumble upon what my husband termed “angry autism dad” websites. These were before blogs as we know them today. They were an html-y collection of posts with links to government reports about concerns over thimerasol or links to university studies that hinted at possible causes that might, someday, lead to possible cures. Sometimes they were personal and recounted the small slights and injustices one encountered slogging through days filled with perplexing behavior from our children or insensitivity from adults from whom one would have expected more compassion. Fix this now, they demanded. Or, fund this study, stop the conspiracy. We were hoovering up information then. These men were the heroes of our strange planet. Vitamins, weighted vest, hair test, casein intolerance, leaky gut, PECS, environmental hazards, legal rights, insurance will cover six sessions in the course of a lifetime disability, read this, try that, ask about, a wonderful woman. Hope, hope, hope. Trust, trust, trust. Fight, fight, fight.
Diagnosis is, at first sight, a lonely planet. Some people and experiences are shooting away from you at the speed of light, but as some people pass from your life, others step in. I joined a listserv with more voices, more stories, less anger than the lone dad furiously accumulating research. Time passed.
Fast forward to the here and now. Our nieces are visiting for the week. We have put together a week of Cousin Camp activities. Last night we attended a kids yoga class at the place where the older daughter takes dance. There are many things you don’t envision for yourself as a parent, being a dance mom was one of them. The other girls at yoga are all friends from dance. Together, we represent a range of abilities, talents, chromosome counts, social skills, challenges and flexibility. I am the only adult participant, but this is a place of acceptance and my neck has been really stiff.
After doing tree pose, the instructor calls us all over. Picture a forest, she says. The trees are different sizes. They don’t stand perfectly still, they sway, some trees lean against other trees. She has us stand in a circle, one leg bent against the straight leg, arms outstretched to touch the fingertips of the people next to us. Being connected, she explains, gives each of us the strength we need to balance. And it works. We hold the pose together, in a circle, which gets us off our individual mats and, thinking or not thinking about the symbolism, experiencing it anyway.
I didn’t ask the girls later what they made of this, if they even thought about it at all. Did they assume they were a source of strength to the others or did it surprise them that it was easier to balance in the group? An experience like that is a gift they will unwrap someday, in their own time. If I were to follow the conventions of the fierce mother narrative, I might end this post with a quote of universal wisdom from Le Petit Prince, or conjure up a vision of the older daughter standing tall in the forest of life, but I think it is enough to leave you in a yoga studio contemplating your own pose.