By Käri Knutson
You’re not alone.
It’s a simple message but one that can provide great comfort. That is just part of what those who gather at the Waisman Center as part of the Grandparents’ Network take with them following each meeting.
The Grandparents’ Network was formed in April 2012 and provides support for grandparents and other family members who wish to increase their understanding of developmental disabilities, learn how other families have coped with the challenge of disability in the family, and contribute their expertise, wisdom and experience to other grandparents and to the Waisman Center.
Grandparents meet for coffee and conversation at 9:30 a.m. the first Friday of every month at the center, which is celebrating its 40th anniversary.
They share their struggles, they share their triumphs. They share their hope to help out their grandchildren — and their own children.
Angie and Bob Tramburg help lead the group. They have a grandson who is on the autism spectrum and have visited the Waisman Center for years.
“It’s about sharing experiences,” Bob Tramburg says. “It’s also about dealing with the fear of the unknown.”
Judith Ward, former executive director of the Waisman Center and wife of Interim Chancellor David Ward, helped organize the coffee group in the fall of 2012.
“They’re all interested in research and ways to help their grandchildren,” Ward says. “It’s an opportunity for learning more.”
There is an open format for the group — the overlying guideline is that they are there to listen to each other.
“It’s very open,” Bob Tramburg says. “All we’re really trying to do is provide an opportunity for people to be heard.”
The Tramburgs have found the Waisman Center to be a valuable resource. For 40 years, it has been dedicated to the advancement of knowledge about human development, developmental disabilities and neurodegenerative diseases. It is one of only 15 centers of its kind in the United States and encompasses laboratories for biomedical and behavioral research, a brain imaging center and a clinical biomanufacturing facility for the production of pharmaceuticals for early stage human clinical trials.
In addition to its research efforts, Waisman provides an array of services to people with developmental disabilities, offers numerous early intervention, educational and outreach programs to young children and their families and trains scientists and clinicians.
“When families face a challenging diagnosis, it helps when everyone –
grandparents included — can circle around and form a network of care,” says
Waisman Center Director Marsha Mailick. “These grandparents are doing what they can to learn more about developmental disabilities, making connections with others with similar experiences, and in turn, helping their families. We are lucky to have this group.”
The grandparents exchange ideas about what has worked for them and what hasn’t. They talk about the importance of routine and structure in their grandchildren’s lives as well as planning special activities for when they come to grandpa and grandma’s house.
Besides helping their grandchildren, they talk about ways they can support their children as well as the siblings of the child with developmental disabilities.
Ways to manage stress, how to bridge distance and still keep in touch, how to choose your battles, instilling manners — conversations run the gamut.
“We’re all dealing with a lot,” Angie Tramburg says. “Talking to other people helps.”
It’s a place where they can acknowledge the difficulties and frustrations in an honest way where they don’t have to feel judged.
“It’s a pretty vocal group,” Bob Tramburg says. “Everyone shared right from the beginning.”
It can be pretty emotional, but the group always finds something to laugh about.
“So many of the stories are really uplifting,” Angie Tramburg says.
Really, they’re just a group of grandparents who want the same thing as other grandparents: happy, healthy grandkids who they will gladly brag about to anyone within earshot.
“It’s real simple,” Bob Tramburg says. “Grandparents are awesome.”
For more information, visit the Waisman Center’s web site.
On Nov. 2, the Waisman Center will host a Day with the Experts: Grandparents’ Network event, providing free educational outreach and the opportunity to learn from Waisman Center researchers about the latest research related to developmental disabilities and the family. The day also includes a community panel of experts, grandparents of children and adults with disabilities.