- Massachusetts Commission for the Blind
Cheryl Levasseur grew up in a very small town in the rolling hills of western Pennsylvania. She moved to the area of Gardner, MA in the 1980s where she attended college and graduated with a bachelor’s degree in clinical psychology before training for many years at The New England Consortium on Deafblindness (NEC).
Glenn Lavallee is an individual who is Deafblind. He grew up in Worcester with his parents before attending Perkins School for the Blind in Watertown where he graduated in 1993 with fond memories of the campus and cottages. Now 49 years old, Glenn describes himself in simple terms.
“I’m happy,” said Glenn. “I play pianos. I like many balloons up. I grow gardens and pumpkins. I vacations many states.”
Glenn has many health issues due to CHARGE syndrome, a genetic syndrome that presents various physical challenges for an individual, often including vision and hearing loss.
Cheryl met Glenn in 1996 when she was employed as the manager of a day program where Glenn was enrolled. One day, Glenn and another individual in the program needed a staff person to accompany them to their jobs. Cheryl volunteered.
“Glenn and his co-worker gave me my first ‘Helen Keller’ experiences,” said Cheryl. “I was so amazed, and in awe of their abilities, their means to adapt to their environment, and equal brilliance in learning, communicating, and unique way of finding humor in adverse situations.”
A year later, the day program was restructured, and Cheryl was presented with the opportunity to consider shared living with Glenn. Now, 23 years later, Cheryl says that was the day that their life adventure began!
“This role is important to me because it has been not only a joy, but an honor, to support Glenn and to help fulfill many of his dreams,” explained Cheryl.
After their first year of shared living, the pair made a visual collage together on poster board with photos of their year traveling and enjoying daily adventures. On the top of the collage, they included the quote, “Make all your dreams come true,” because Cheryl says that was her commitment to Glenn when she agreed to give shared living a try. Cheryl says that she attempts to provide Glenn with the “least restrictive” environment that includes full community inclusion. Glenn shared some of his favorite things to do around the house with Cheryl and her husband Roger, “Line up airplanes and shuttles. Bake cake. Line up cars and vans. Face paint. Art. Dance. iPad.”
Shared living providers like Cheryl are required to provide housing, food, and resources for community access, including transportation, and any supports required to make the community accessible. Cheryl is an independent contractor who is reimbursed for housing, food, and supports. She also worked full-time for many years in education until 3 years ago, and she continues to work part-time to supplement the stipend that she receives to provide Glenn with resources. Roger gave up his entire career to be a homemaker, providing Glenn with the transportation and supports needed for a successful shared living experience. Cheryl says that the shared living model is often misunderstood. Providers are not paid staff, nor do they receive benefits or time off.
“Shared living is a family/community support for having access to a normal life,” explained Cheryl. “The funding we receive is to provide supports needed for Glenn to experience successful independence, and live a full happy, healthy life. Our family sacrificed and supplemented whatever was needed along the way to additionally support him. In the community where we live, we are considered just another family. Glenn is fully included in our extended families, and we are fully included in his as well. Glenn is well known in our area and the surrounding communities, and even much further than that.”
Glenn described his favorite activities in the community as “drive-in movies, buy coffee, park, restaurants, jeep ride, van drive, bike with 4-wheel, party, Zoom, farms.”
Glenn has volunteered for many years with Ahimsa Haven Animal Rescue. Glenn and Cheryl fostered many animals with special needs for Ahimsa, including animals experiencing end of life/hospice care. They fostered a cat who was Deafblind named Ferguson until it passed away. For a few years, Glenn dressed as Santa’s elf for the organization’s holiday fundraiser and took photos with the animals. He also mentored student volunteers at the adoption center at the local PetSmart in Leominster for many years. Glenn has also mentored students in a local educational community program for 8 years.
Cheryl and Glenn are active advocates in the Deafblind community. Glenn hosted a national parent group, The National Deafblind Intervener Initiative (NDBII), and Cheryl co-authored a booklet with several NDBII parents about intervention for students who are Deafblind. Glenn has participated annually in Deafblind Awareness Day events by writing letters to legislators to advocate for Deafblind funding and support. His letters prompted in-person visits from current MA Senator Jennifer Flanagan and former MA House Representative Robert Rice.
“We provide Glenn with love, care, a family, and access to information and community. It is a very individualized, community-based and successful support model.”
Cheryl and Glenn share a passion for theater, music, and song. They use a mobile application to sing and voice lyrics with people around the world. They have been involved with Global Voices United for almost 10 years where Glenn has participated in a series of creative duets and group collaborations. Typically, he proudly participates in full costume and make-up. Every year, Glenn and Cheryl create music video collages and presentations for Glenn to exhibit at his yearly Interpreter Services Program (ISP) celebrations.
Glenn is a fan of technology, and Cheryl says that the Internet, iPads, and Deafblind support apps have offered many opportunities for Glenn to communicate, learn, and engage in recent years.
“Social media, photos, and use of video as a means of expression have all become powerful communication tools for Glenn to have a voice,” said Cheryl. “I love supporting him to make this happen. And, it has become a favorite activity to get us through these trying times.”
Glenn and Cheryl have relied upon one another more than ever during the COVID-19 pandemic. Glenn worked and contributed to his own financial resources until the stay-at-home order.
“He enjoys making money, and he enjoys spending it as well,” laughed Cheryl. Glenn commented on the pandemic and said, “Hope world can become better…I want free.”
Peggy Feldmann Firinne is Glenn’s Rehabilitation Counselor in the Deaf Blind Extended Supports (DBES) Unit at MCB. She describes Glenn as “a friendly and joyful man” who greets everyone with a handshake (pre-COVID) and a smile.
“His love of life bubbles over where ever he goes,” said Peggy.
At the beginning of March, Peggy spoke to Cheryl for the first time to check in on how Glenn was coping at home during COVID-19.
“I know that Glenn is very social and active so the need to isolate at home could be difficult and confusing for him,” said Peggy who has known Glenn since 1987 when she worked at Perkins School for the Blind before joining the DBES Unit at MCB. “Cheryl explained that Glenn was very confused, but she and her husband helped explain the pandemic as best as they could and took Glenn outside of the house to show him that his favorite places were closed with everyone wearing masks. Glenn depends on direct hands-on experiences along with touch that allows him to access, navigate, and understand his environment. During COVID-19, many individuals who are Deafblind like Glenn are challenged without tactile access to basic information that allows them to cope and make decisions. Cheryl says that this interrupted access to information can be very isolating.
Glenn also wears a mask for short periods of time in public which helps him to remain active and safe. Peggy said that she had more check-ins than usual over the phone during the pandemic with Cheryl and with Glenn's mom. The trio troubleshoot together for Glenn and address concerns to develop a collaborative approach.
“Cheryl is a very strong advocate for Glenn,” says Peggy. “She is his cheerleader and has gone through a program to be a Deafblind intervener. Her understanding of Glenn as a Deafblind individual and her acceptance and encouragement of his interests make them a great team.”
Peggy is hopeful that Glenn’s story can inspire other individuals who are Deafblind and their shared living providers during the pandemic.
“COVID has deeply affected so many in the Deafblind community as services are very personalized and communication is often needed to be tactile or in close proximity,” said Peggy. “The pandemic is isolating for all of us but for Deafblind individuals it is extremely so. When you add an intellectual disability, the sudden changes presented by the pandemic are confusing, frustrating and difficult to understand.”
Glenn has remained as active as possible despite the circumstances. Peggy believes that Glenn and Cheryl are great role models for other families and providers in similar situations.
According to Lesli Baker, Director of the DBES Unit at MCB, Peggy is an exemplary counselor whose compassionate and caring attitude is reflective of her mission to serve.
“Peggy has a really great relationship with Glenn and Cheryl and makes sure that she is always available to them for any question or concern they might have,” said Lesli. “Our priority is always with the consumer to enhance their independence and quality of life through the services we provide.”
Baker describes her DBES leadership role as “rewarding and always interesting.” As a team, the Unit acknowledges that every consumer has specialized needs and circumstances, requiring “very creative and outside the box thinking.”
“Each counselor has their own unique skill set and experience, which allows them to problem solve and think critically to ensure each consumer receives the specialized services they need,” said Lesli. “I think that is what makes our Unit and team so special.”
In July, Glenn was invited to play a part in a group mystery challenge competition that included a music video and costumes. Cheryl and Glenn naturally obliged. While they didn’t win the competition, they did receive wonderful compliments from around the world. While participating, they decided to perform an additional duet in costume for others to join in and to provide a bright spot during the pandemic. Watch their video on our MCB Facebook page.
Glenn has played the piano for many years despite the recent loss of all residual hearing. He played for the elderly at the Gardner High Rise where he attended worship services. Hear Glenn play the piano on our MCB Instagram channel.