“Don't pursue a career in the Arts unless you love the Arts truly, madly, deeply. And do not have any delusions about what awaits you both in educational settings, and in the job market. …If you think you're gonna get a break because you have a disability, think again. …You better be the best you can be at what you do, and do not allow yourself to use your disability as an excuse NOT to work continually and consistently towards total professionalism and high standards of quality.”
-- Jaehn Clare, professional theatre artist, from "A Career as an Artist Ain't an Easy Row to Hoe," keynote address for The Art of Employment: Careers in the Arts for People with Disabilities on March 25 & 26, 2002 at the University of Minnesota, Minneapolis MN.
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Every time a new crop of young teachers-to-be rotates through one of Education Professor Theresa Ochoa’s courses at Indiana University, Columbus artist Nicolas Lyford-Pike makes a personal visit to their Bloomington campus classroom. His mentor Paul Neufelder and mother Pilar Lyford-Pike join him to tell the powerful story of Lyford-Pike’s transformational learning experience.
The take-away? Post-secondary success in the life of a young man with autism, epilepsy, and profound deafness has arisen out of his relationship with an art mentor, and the willingness of the young man’s family to take some creative risks.
As a child, Lyford-Pike always had a pen and pad of paper in hand. So his parents knew he liked to draw. They saw it as his way of communicating and avoiding boredom. “He was always doing hubcaps, cars, constellations, all the time. I never thought that was art,” his mother recalls. Natives of Uruguay, the family had moved to Indiana from Brazil. Negotiating an education for their son at his Columbus elementary school was a bewildering experience.
Similarly the school was baffled by its first encounter with a student with autism. To assist Lyford-Pike’s teachers, “we used the Indiana Resource Center for Autism a lot.” His mother credits Kim Davis of the Center, and her positive behavior intervention training, as being instrumental in managing the challenge of mainstream classes. Then there was Meg Baker, whom Pilar Lyford-Pike calls “the best teacher ever.” “She was the person who worked the hardest for Nicolas’ growth – such as contacting autism 'guru' Temple Grandin. She also taught me how to be an advocate and how to interact with personnel in school.” After some particularly trying middle school years, luck returned with Baker’s reassignment to Columbus East High School. Still, mainstream classes proved to be impossibly difficult for their sole deaf pupil. Without sufficient individualized supports, the burden fell upon the family to help him keep up. Lyford-Pike returned to the hearing-impaired classroom and finished high school with a certificate of completion.
When the family was preparing for the transition out of school, the complexities and acronyms of the Social Security, Medicaid, and other disability services had been overwhelming. “I thought at the time there was a huge gap between the school system and the people who were going to take care after that, just one semester didn’t seem to be enough to grasp all the things that were supposed to happen”, his mother comments. The family didn’t know about the waiting list for the Autism Waiver until Nicolas was in high school, a list on which she expects he will remain “for years and years.”
In an e-mail message, I asked Lyford-Pike what he likes about drawing and painting. An excerpt of his eloquent written response follows.
“The drawing of forests at rivers in the colored lines and curved of wiggle crayons in the trees and grasses… The stars and hubcaps vin the drawing of more colored to his a paper with variety a circles and small rounds.”
In the meantime, she is pleased hem started receiving some services around age eighteen through the Support Services Waiver. “Having a case manager we started to understand more of what was going on.” In fact, she says they have had ten case managers over the years due to turnover. “It doesn’t affect me anymore. We just go to the meetings, sign the papers. We have all these goals and half the time they aren’t accomplished.”
Lyford-Pike also became a client of Vocational Rehabilitation Services (V.R.S.). His mother recalls thinking, “He’s going to have a job, he’s going to be busy.” Although he was successful at the jobs he was given on a trial basis and did well on vocational assessments, employment did not pan out for him. He enrolled in a visual art class at Ivy Tech. Ivy Tech paid for an interpreter, which was “really cool.” The experience was so positive, Lyford-Pike repeated the class for four semesters. "Now what?" his mother wondered.
Enter Paul Neufelder. “I’d seen Paul, the dog, the wheelchair in town but I had no idea who he was.” They found him at Columbus’ 2004 Art in the Park event, “surrounded by kids, doing what he does best.” Neufelder immediately suggested Pilar Lyford-Pike bring her son to a class he was teaching the following Monday. But she had no idea of the strides her son was to make under Neufelder’s mentorship, and trust came slowly.
“It took me months to let go.” “Here I am the super-protective mother, thinking that I’m not spoiling him, looking at him [Neufelder], thinking how in the world is he going to communicate with my son?” Neufelder has quadriplegia and Lyford-Pike communicates primarily with sign language. “I couldn’t believe that Paul was so open to that. From then on it was an amazing, amazing journey.”
Neufelder not only became an artist mentor/teacher for Lyford-Pike, he also expected his pupil to help out during the days he spent at Neufelder’s studio. “Paul started training him to do things that I never thought, or my husband, that he could do.” Studio chores and trips to the store became part of the learning experience as Lyford-Pike loaded the woodstove, carried groceries, and chopped and cooked vegetables for lunch. Previously not allowed to use a sharp knife, Lyford-Pike astonished his family when he began cooking at home. His parents had become accustomed to doing things for him. “It was easy for me to do it faster and not have a fight,” admits his mother. Protests were short-lived with his mentor. “Even if Nicolas screams and yells, Paul cannot do it.”
A new challenge entered the young artist’s life in 2007 when he was diagnosed with testicular cancer. The treatment was successful and the cancer is in remission.
Lyford-Pike’s week now includes regular volunteer work at Kids Commons, a Columbus children’s museum. Having learned to take the bus to his mentor’s studio, he is completely independent in getting to and from the museum. “He loves science,” his mother says. “They tell me he’s a real asset.”
Artistic gains accompanied Lyford-Pike’s personal growth. This year his work featured prominently in Through My Eyes - Perspectives on Autism, a juried exhibition. It was sponsored by Vsa arts of Indiana, an organization of which he is a member, and Riley Hospital. In April, Autism Awareness Month, he showed his paintings, along with Neufelder’s, at Bloomingfoods Market and Deli in Bloomington. Also in 2009, Lyford-Pike launched a website featuring his art work with some help from family and others. The e-commerce site has already brought him some inquiries and sales.
Lyford-Pike is again a client of V.R.S. “We thought now we understand more of the system, maybe there is a chance," reports his mother. V.R.S. paid for small business classes she and her son took in hopes of starting an enterprise around his art. In the end, however, she decided this was not the route for them “because I will have to do everything. He will paint and I will do all the rest.” She is trying to help his job coach envision work that challenges him, beyond janitorial tasks. “The library would be a great place to work: he has the visual memory, all the numbers, he loves books.”
Through his Waiver, Lyford-Pike has a staff member from D.S.I., Inc. who takes him to a variety of activities in the community. His family is glad to have the day services, but would very much like to be able to designate Paul Neufelder as the provider. “We have tried absolutely everything. There was a big ‘No’ because he cannot perform CPR.” The family pays Neufelder out of their own funds for the time Lyford-Pike spends with him in the studio. “It is extremely frustrating that a person that you find that does the best job ever cannot be the one paid by the State.”
In the meantime, they are excited about sales via the website and three commissions, including one to paint a PT Cruiser with a kayak on top! Looking back on an exciting artistic year for her son, Pilar Lyford-Pike reflects, “I think Paul’s been giving me the tools how to approach the next stage of Nicolas’ life, to be independent, to have a career to sustain himself.” “Paul has prepared us for the future tremendously.”
Nicolas Lyford-Pike was featured in the public television show, Across Indiana. View “The Art of Understanding” (Episode #1610) on the WFYI website.
Pilar Lyford-Pike has written a story about her parenting experience for More Magazine. Read “Empty Nest . . . But Not Really” on More.com.