Our stories remind one another of our shared humanity.
By Debra Muzikar
As I was driving home last Saturday from dropping Kevin off to visit his Dad, the NPR radio station played an interview with David Isay, the founder of StoryCorps. StoryCorps is an organization that goes from city to city collecting stories. StoryCorps’ mission is “to preserve and share humanity’s stories in order to build connections between people and create a more just and compassionate world … we are creating an invaluable archive for future generations.”
The stories are recorded in sound-proof booths with high-end recording equipment – a setting where two people ask questions they’ve wanted to ask each other. David Isay sees the StoryCorps booth as a sacred space. The NPR interview played a sampling of one of the stories which was a touching story of a boy with Aspergers Josh Littman being interviewed by his mom Sarah (the interview is here).
Storycorp interviews are archived in the United States Library of Congress in Washington D.C. The United States Library of Congress is run by James H. Billington. James’ son Jim is founder of the autism nonprofit Hidden Wings in Santa Ynez, California. My son Kevin was a participant in Hidden Wings for several years when we resided in Santa Barbara County.
I’m laying out the connections because these connections are important in Kevin and my life – they are part of our family’s story.
So what does Storycorps have to do with our family’s story?
Three years ago, I was prompted by my husband Kurt’s sister Mary to sign-up for a StoryCorps interview. Mary knew I was helping Kurt write his memoirs about growing up free range in a large eccentric family. Kurt’s dad was probably on the autism spectrum as is Kurt. Mary thought the StoryCorps interview could be great fun for us.
Well, the interview did not go exactly as we planned. Between the time I signed-up and the date of the interview our lives took a dramatic turn. During the month leading up to the Storycorps interview Kevin was admitted to a psychiatric hospital where the hospital screwed up his medication, his Special Education teacher initiated restraining orders against him and encouraged her aide and another special education student to do the same. (Kevin had made indirect threats while at the psychiatric hospital on Thanksgiving Day. He was upset he was not home with his family and the psychiatric hospital had messed up his medication that week forgetting to give him one of his medications completely). The restraining orders led to Kevin being expelled from his college, and being pretty much forced by the School District to move out of the community where he grew up. During this time we received much support from Jim Billington who contacted everyone he knew including friends in Washington D.C. about the injustice being done. We are still so grateful for Jim’s and other friends’ advocacy during this time.
On December 16, 2013, the morning of the Storycorps interview I made an impromptu decision to interview Kevin as well. Kevin talks about this time in this interview below. I apologize for using the archaic term “mental hospital” instead of psychiatric hospital in interview. I’ve learned a lot in the last 3 years.
The immediate result of the Storycorps interview with Kevin was that I could take this interview into Kevin’s IEP. The School District did not invite Kevin to his own IEP. I was insistent that Kevin’s voice be heard. When the administrators listened to Kevin’s words I could feel sadness descend upon the room. In an orchestrated campaign, Kevin was being asked to leave his home community. Parents who did not even know Kevin in more than a superficial way were being urged to call the District to have Kevin removed. It was my position that if Kevin wanted to stay in his home community and if there was a culture of intolerance and discrimination, it was up to the School District to change that culture. The I in IEP stands for Individualized. Prior to the IEP, the Administration had called a school-wide Safety Meeting to discuss Kevin. Kevin nor I were invited to this meeting. There was a general feeling of hysteria among educators in the community.
As I relistened today to this interview I realize how sad Kevin sounds and it brings back the sad memories of having a child that is not understood (even by Special educators and parents of special needs students) and why I’m so passionate about what I do through the Art of Autism. There is an old saying that your enemy is your best friend. As I reflect on that time in our lives, our enemies enabled us to move to communities which were more embracing of differences. Through the internet our community can support one another even at a distance. During this time I heard from more than a dozen other parents who were facing similar or worse situations with family members who were on the autism spectrum. Discrimination is wide and deep. I also learned that Kevin has his own trajectory. He led his family to a better place both physically and emotionally. Probably intuitively he knew he was not accepted where he lived. One bad apple can create a huge problem for a student, especially a Special Needs student with mental health issues.
Kevin has a full life now. He resides in San Diego County. He is in his last semester at a high school transition program – much like the transition program he was attending in his hometown. Through that transition program he has been employed at Walgreens and at a local restaurant. His transition teacher is looking at securing a job at a home for the elderly. Kevin’s prior experience in Ohio working at such a place setting tables for the residents may help him secure that position. He participates in Special Olympics in San Diego, he still takes art lessons, and last year he took piano lessons. He is a short distance from his “beloved Mexico” – his favorite place to visit. We take him on short excursions to Mexico several times a year.
Kurt and I also moved on and reside in a small rural town in Northern San Diego County. Kevin’s big sister Katie has moved to San Diego as well. She resides a short 20-minute drive away from Kevin and a 45-minute drive away from me. We are actively involved with the housing organization Jeremiah’s Ranch, a wonderful nonprofit which Kevin also participates in. Kevin attends the Support Group meetings and dances that Jeremiah’s Ranch hosts. This summer Kevin helped create a beautiful mural for an art exhibit at the College of Adaptive Education.
The lessons I’ve learned are about letting go of expectations and how even when we are going through difficult times there may be good reasons for those difficulties. Sometimes we do need to move on in our lives; otherwise we can be stuck in negative places or situations. The sadness we felt 3 years ago has been transmuted. Kevin no longer sounds sad when you talk to him. Today he called me while visiting his Dad and sister Justine.
“I just ran 3 miles,” Kevin says on the phone.
“With who?” I ask.
“With Dad, Yoni, and Justine,” he says.
“You sound happy Kevin,” I say.
“I am Mom.”
On the Storycorps website storytelling “reminds one another of our shared humanity.” Everyone’s story matters.
Debra Muzikar is co-founder of the Art of Autism nonprofit.
Related Blog: Storytelling, Neuroscience and Healing Trauma