Drawn by the beauty of Vermont and its outdoor and athletic opportunities, Ellen Rainville left New York state for Burlington and accepted a job in medical technology at the UVM Medical Center Hospital. She spent 13 years specializing in hematology and later became a cytotechnologist. Thinking her life was settled into place, she purchased a Burlington home.
Atop Sugarbush, while telemarking with friends, she met John Riley, a Montpelier attorney. A year later they married and made their home in his Moretown hilltop residence. In the following two years, they welcomed Christopher, born with Down Syndrome, and then Maura who they were blessed to adopt as an infant. Ellen recognized and accepted that her life-path was permanently redirected. Her main goal and focus became how to make each child part of a loving and supported family. All the resolve, determination and hard work that had defined her earlier life and career went into her new challenge.
Ellen had little exposure to cognitive differences and set out learning about Developmental Difficulties and Intellectual Disabilities (DDID). Additionally, the new parents wanted to stimulate their children’s lives with sports, culture, and participation in many activities. For Maura it meant traditional schooling at Moretown Elementary while Chris, beginning at age 3, was part of Moretown’s Special Education programming. There he received physical and occupational therapy.
CREDITS TEACHERS AND RESOURCES
Ellen credits all the wonderful early learning teachers and resources Chris had for so much of what Chris is today.
While continuing to work part-time at UVM Medical Center Hospital, only retiring after 45 years, Ellen spent hours backing up and reinforcing his classroom curriculum and knew she had to find activities beyond school. At age 4, Chris became part of the Vermont Adaptive program at Sugarbush North tethered to a volunteer ski instructor. By age 7, he was off the tether while Ellen remained in his shadow at every lesson. The next year, 2004, Chris joined the Special Olympics ski team at Bolton. Ellen took courses and became a ski instructor specializing in DDID and later earned her PSIA certification. Believing her main objective to be preparing Chris for maximum independence, she met with parents with a similar goal and formed study groups.
UPPER VALLEY SERVICES
Chris went on to Harwood and after his extended school years became affiliated with Upper Valley Services in Moretown. The agency provides direct services with case management and support staff. Social and recreational activities and job placement and coaching are also integral components. Chris has been working part-time at Three Mountain Cafe for three years. Special Olympics in Central Vermont happen for athletes because of Ellen’s efforts securing coaches and volunteers, playing fields, insurance, communications and maintaining data bases.
She helps coach swimming and alpine skiing and Dad John assists coaching basketball. She feels fortunate to have young volunteer coaches for basketball, soccer and bocce as the athletes love them. She hopes more will volunteer.
Now at age 27, Chris is eager to ski and loves participating with Vermont Adaptive. Two years ago, Ellen was chosen Vermont Adaptive Volunteer of the Year. She also helps coordinate UNIFY at Norwich University which enables athletes to work on fitness, team building and socialization with friends and with the Norwich Cadets who volunteer for this very meaningful program.
In its off-season, she can be found landscaping, cleaning yurts and tree houses and raising funds to support the summer and fall camp at Zeno Mountain Farm in Lincoln. Disabled and abled-bodied campers love the month-long experience living in wheelchair-accessible tree houses and caring for one another. Ellen said Zeno has had a huge impact on their family and it is her joy to give back to it.
FREE NEIGHBORHOOD CSA
When home, Ellen works on her huge garden. She loves that it produces way more than her family can consume and that she is able to offer a free neighborhood CSA. Passers-by do not go home empty-handed or without a chat. She cherishes any time she gets with Maura who graduated from American University and now works in Bethesda for a TV/Cable advertising company and resides in Chevy Chase, Maryland.
In 2022, ACT 186 was passed in Vermont allowing for research and development of additional housing options for DDID. The act stipulates all stakeholders are to be part of all facets of any projects and all information available to them shall be in plain language. Ellen wasted no time in becoming a parent representative to Upper Valley Services in Moretown/Randolph and Downstreet headquartered in Barre — both agencies have agreed to partner to secure funding for architectural studies of numerous housing options and, ultimately, with other partners, bring plans to fruition.
Ellen’s time is now centered on this ambitious, arduous, and complicated critical issue. She is not striving for Chris alone, but also for the many others who need housing options that will serve them throughout their lives — urgent when parents are no longer able.
NEED APPROPRIATE HOUSING
Approximately 600 DIDD people throughout Vermont have need of appropriate housing. There are many potential workable options to study and investigate. Her goal for Chris is that he can age in place with the same group of friends with their individual spaces and a shared kitchen while developing ties to the greater community.
In the meantime, Chris resides on his own, with support staff, in a house the Rileys purchased in Montpelier. Ellen continues to pursue the dream of a more appropriate home where he is not isolated and will be assured a full and complete life.
Addressing her own life and mantra, she stated, “I only have one life to live and I am going to fill it up as much as possible.” It would appear she is doing just that and that many others are beneficiaries of her very full plate.
