Member, BBI Board of Advisors, LMT, RCST
Barbara Huntress Tresness’s journey to becoming a leading advocate for nonverbal and limited communicators and to founding the Connecting Humans through Awareness and Technology (CHAT) Collective began in 2000 when her son, Graham, was born with cerebral palsy. Finding herself, the local medical community, and the public school system poorly equipped to meet the needs of a nonverbal child, she embarked upon a worldwide search for techniques, technologies and treatments to free Graham from the walls of silence that imprisoned him.
After a decade of frustration and frequent medical emergencies that resulted from his inability to communicate, Graham “emerged” a bright, happy and engaging child through the use of assistive technologies and innovative therapies that now allow him to converse with family, friends, teachers and medical providers.
It was during these trying years that Barb discovered such ground-breaking approaches as craniosacral therapy (CST) and dolphin assisted therapy, pioneered by Dr John Upledger of the Upledger Institute in Palm Beach Gardens, Florida. The dramatic effect these had on Graham inspired her to become a licensed massage therapist and craniosacral therapist in 2005. CST is non-invasive form of alternative medicine that involves gently manipulating the spinal and cranial bones to release tension in the central nervous system, allowing the entire body to relax and to self-correct. It has been shown to be beneficial in treating concussions, TMJ, chronic pain, whiplash, insomnia, tinnitus and various symptoms of Alzheimers, cerebral palsy and autism.
Since 2006, Barb has served as support therapist at the Upledger Institute working directly with Dr. Upledger and as a lead therapist in the dolphin assisted therapy program (DATP) in Freeport, Bahamas. In 2010, she established Ultimate Yu, a massage therapy practice in upstate New York, where she has helped hundreds of patients through craniosacral therapy.
In 2013, Barb and her husband, Greg Tresness, founded and funded a program at the Burton Blatt Institute (BBI) at Syracuse University that became the precursor to CHAT Collective. Also called CHAT (but initially an acronym for Communication Hope through Assistive Technology), the program’s mission was to assist youth with disabilities who communicate using technology to open their voices to the world and to create communities among CHAT families for sharing friendship, fun and learning. Among its successes were the development of an online interactive fun center for children and a resource center for parents and the hosting of a weeklong CHAT Camp for families.
With the founding of CHAT Collective, Barb has focused on identifying and creating awareness of those with communications challenges as “nonverbal communicators” (NVC) and “limited communicators” (LC). CHAT Collective’s goal is to teach the community how to communicate with NVCs and LCs. To that end, Barb has also developed a suite of communications products to aid verbal, nonverbal and limited communicators in engaging with each other. CHAT Collective Hand Bands help verbal communicators stimulate conversation and obtain information by posing Yes/No questions and encouraging respondents to choose the wristband that correlates to their answer. CHAT Collective Dog tags, ID tags and t-shirts let people know if the wearer is a NVC or LC, and NVCs and LCs can use communication cards to help people learn how to communicate with them. CHAT Collective’s website went live in early April 2015.
Barb was invited to present at the 15th annual Accessibility Summit in Washington, DC, which took place in mid-April 2015. The Summit draws experts, educators and other attendees from community, medical and faith-based organizations nationwide. Barb participated in a panel discussion entitled “Advocacy Through Collaborative Conversation,” which focused on helping parents to engage in positive and productive discussions on behalf of their children; and she introduced techniques for communicating with nonverbal and limited communicators in a workshop entitled “Talk to Me: Effective Communication with Nonverbal Individuals.”
In early May 2015, Barb was asked to serve on the NYS regional Special Education Task Force, which strives to improve education for students with disabilities.
Barb has published two books in the past year. Everyone Communicates: Learn how to talk to ME! came out in October 2015 and is a guidebook to help the verbal population learn how to communicate with NVCs and LCs. Her memoir, Beyond a Charmed Life, A Mother’s Unconditional Love, came out in January 2016. The message of the memoir is that hope exists and you are not alone.
Barb currently serves on the BBI Board of Advisors and previously she held leadership positions on the boards of the Onondaga County Special Children’s Services (Early Intervention), the Boys and Girls Clubs of Syracuse, Eldercare Foundation, Advocates Inc., Junior League of Syracuse, Jowonio Foundation, and Manlius Public Library.
Barb received her Bachelor of Arts from the University of Vermont, and lives with her husband and three sons in Manlius, NY.
Barbara Huntress Tresness in The News
CHATing Together
Syracuse Woman Magazine May 2016