Theresa Schneider awaited the birth of her twin granddaughters, like any grandmother would, with a mix of both excitement and worry. When one of the girls, Emily, was born and diagnosed with cerebral palsy, it was, she says, "overwhelming at the very beginning."
Fast forward six years, and Theresa is a model of what a tremendous resource grandparents can be for their adult children raising a child with special needs. "It amazes me to see all of the support and opportunities that are out there for children with special needs," she says. But those early days of diagnosis can be extremely hard, not only for the new parents of a child with a disability, but also for the entire extended family.
Barbara Brennan, grandmother to Sam, who has neuro-developmental delays, remembers those early days and the realization that there would be "broken dreams and dreams that could not be realized" for her grandson, as well as for her daughter.
The resounding refrain among special grandparents is their concern for their adult children. "I worry about the marriage, about money, about their home, about their future," says Elaine Fisher, grandmother to 10-year-old Adam, who has autism.
Caring for a child with special needs 24 hours a day without support is daunting, and grandparents see the stress it puts on their adult offspring. It is difficult to watch your children struggle as they go through a tough time emotionally or physically, these grandparents say. But grandparents suffer this two-fold while observing both their adult children and their grandchildren.
Grandparents often struggle to find their place with their adult children-where they fit in and how they can help. This is especially true of special grandparents. "I didn't know where to help," says Fisher. "Financially, relief, respite?"
Judy Graf, whose granddaughter Sophia has cerebral palsy, found the best thing for her son and daughter-in-law was to be their support system. "We followed their lead and just made ourselves available," she says. Schneider, who struggled to figure out where she should step in, found the best way was to not be afraid to simply ask what specific thing she could do and when.
Offering new parents advice is something most grandparents are guilty of; special grandparents are no exception. "Early on, we bumped heads," Fisher says. "I was trying to give advice, articles I had read, information on treatments people had told me about." But she quickly learned this was not the best approach.
Graf says her best advice to other grandparents is to stand behind the parents' decisions and direction. "I try to be supportive of their ideas (for their child)," she says. "You will not be there to see those ideas through on a day-to-day basis. You are not walking in their shoes."
Both Graf and Schneider say it is helpful to be part of their granddaughter's everyday realities, to attend therapy and medical appointments. Therapists generally welcome the presence of extended family. "Grandparent involvement is a huge support to the child and parent involved. I work with children who can only make it to their appointments because of their grandparents," says Bridget Kleiderer, physical therapist from Capable Kids in Northbrook. With two parents working, or smaller siblings at home, it is often difficult to coordinate a heavy therapy schedule for a child, and grandparent help is crucial.
Some grandparents find it helpful to have a network of friends who understand what they are going through. Fisher found a support group of other grandparents when her grandson was diagnosed with autism. They were able to understand the day-to-day struggles, and also the joy she felt, better than anyone else. Graf did not have a network of friends or people who understood but instead found her strength by working as a volunteer at the Ronald McDonald house. She now works with new parents and is able to give them hope and support by relating her own experiences.
The role of a grandparent of a child with special needs is a different path than they thought they would take. But grandparents love their grandchildren, and these grandparents are no different.
Fisher talks about Adam, who has autism, and knows that all of the time she has spent in his life has been worth it. "I know there is such a love when I see him. Connection," she says.
Along with love of their grandchildren, these grandparents marvel at how amazingly strong and competent their adult children have become in facing their struggles.