The Grandparent Autism Network (GAN) was started by Bonnie Malkin Gillman after her grandson was diagnosed. She didn’t want to burden her son and daughter-in-law with the additional responsibility of educating her, so she took matters into her own hands. The GAN website offers helpful information about autism, including medical, educational, legal and social issues that affect their families. The site also sponsors events and has local chapters for members in the Orange County area of California. Gillman says,
“Grandparents are a particularly vulnerable group.
“They want to jump in and save the day. They want to fix everything in a short period of time. If someone had told me years ago that snake oil was a cure for autism, I would have mortgaged my house to buy snake oil for the kids.”
A survey by the Interactive Autism Network (IAN) shows that grandparents are often a huge support for their grandchildren and their families. They are often the first family members to notice when something is “off,” and can be integral to getting an early diagnosis. Grandparents also tend to be babysitters, and to offer financial support to their grandchildren’s family, often dipping into retirement savings in order to fund treatments that may not be covered by insurance.
Like parents, grandparents also go through a grieving process when they learn of the diagnosis. The relationship they’d envisioned with their grandchild needs to be mourned, along with the stresses of worrying about the pressures their child and spouse are under. Gillman says,
“Grandparents, after all, suffer a triple whammy. They are worried about the future of their grandchildren, but they are also worried about their children’s welfare and the impact the disease can have on their kids’ physical and emotional health and on their marriages. And they worry that their future grandchildren and great-grandchildren will be affected if this turns out to be an inheritable disease. “
Many grandparents feel helpless as they watch their children struggle. They want to help, but may be rejected for coming on too strong. On the other hand, their children may feel they are not doing enough, and become resentful.
They also want to form a relationship with the child, but may not know where to start. It can be painful when your grandchild dislikes hugs, or doesn’t show any interest in you. Taking care of children with aggressive or self-injurious behaviors can add a new level of challenge to the entire family.
For more information about the Grandparent Autism Network, visit their website at www.ganinfo.org.