En español | When Jim Oricchio's grandson Sammy was diagnosed with autism at age 3, his family worried the boy wouldn't make friends, would struggle to communicate and wouldn't do well in school.
Instead, Sammy captained his high school bowling team, founded the school's computer club and cohosted a podcast about autism. Now 20, he's into cars and the stock market, and attends college. Along the way, Oricchio and his wife Donna, who have 11 grandchildren, have helped Sammy's parents with the cost of his private school, advocated for services and connected with him through activities like twice-monthly lunches.
"I thank God every day that Sammy is who he is; he's a blessing to our family,” says Oricchio, 75, who lives in suburban Minneapolis and owns a business technology company. He is also a volunteer with the PACER Center, a special-needs advocacy and support organization in Minneapolis that, among other programs, runs groups for grandparents.
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Being the grandparent of a child with special needs can bring incredible joy but is also complicated, say grandparents like Oricchio, as well as advocates and other experts. About 17 percent of children are diagnosed with some kind of disability, says Madonna Harrington Meyer, a university professor in sociology at Syracuse University and coauthor with Ynesse Abdul-Malak of the book Grandparenting Children With Disabilities. While that percentage seems to be increasing, support programs for families are not, she says.
That's one reason grandparents are so important. In fact, they are sometimes the first to spot that a child's development is off the established norm, says Harrington Meyer, who interviewed dozens of grandparents for her book.
"Sometimes the grandparents are actually out in front,” she says. “But then they learn what it is. They learn what it means. And then they hit the ground running.”
Grandparents play an important role
Paul Fredette, 74, of New Bedford, Massachusetts, says he has a special connection with his grandson Tyler, 20, who has seizures and intellectual impairment as well as social and behavioral challenges.
"He just has this bond with us,” Fredette says. “It's wonderful for us and it makes us feel happy that we can connect with him and make him laugh.… He loves us and we love him.”
Fredette and his wife, Claudette Weaver, 81, have 15 grandchildren in their blended family. Fredette's daughter Deb Booth, who lives in Sandwich, Massachusetts, says her father and stepmother have provided invaluable help since Tyler developed a type of epilepsy at age 4 that does not respond to medication, possibly due to encephalitis.
When he was younger, Tyler loved the routine of having his grandparents pick him up from the school bus, take a ride by the airport, then go out to eat and to the arcade. Sometimes he spent the night at their house.
"I don't know how we would have made it this far without their support,” Booth says. “Tyler has just an incredible relationship with my parents, and 99.9 percent of the time, he has never been a behavioral challenge for them.… If he's in a grouchy mood, we do a FaceTime with ‘Pepere’ and ‘Memere,’ and that can turn him around.”
Grandparenting a child with special needs is a journey into unknown territory, says one Massachusetts grandmother of an autistic child who asked to remain anonymous. Like parents, grandparents may feel grief and anger when a child is first diagnosed. Then, as with any grandchild, they have to adjust their dreams to meet a child's own story.
"I think we all went through some denial, almost like stages of grief,” the Massachusetts grandmother says. She and her husband, both retired educators, were prone to think they could fix anything but, as she says, “it's nothing like a broken arm.”
In her case, grandparents and parents have pulled together to raise a child who struggles with communication and can't be left alone. When her grandchild was younger, she and her husband helped with childcare. They also have helped financially, and they cook dinner for their grandchild's family once a week.
"That's what people need who are in this situation — they need a team of people,” she says.
Advice for grandparents, from grandparents
If you are facing the challenge of grandparenting a child with special needs, be assured there are ways to get advice and support that will help you emotionally, physically and financially. Here is some advice from grandparents of children with disabilities and others:
● Learn about your grandchild's diagnosis. Time and information are “powerful tools,” says Harrington Meyer. Grandparents can be a huge resource by supporting parents and helping them to find programs and treatments. For example, many of the grandparents she spoke with for her book helped by driving a child to therapy sessions or accompanying parents on medical visits.
● Use education as a defense. Grandparents told Harrington Meyer that usually people were kind when they were out in public with a grandchild with disabilities, although things were sometimes awkward when someone in public reacted to a child's seemingly willful behavior. “Very rarely does somebody say anything negative, but when they did, the grandparents chose to educate rather than get mad,” she says. “And that seemed to give the grandparents a great deal of strength. They felt very proud of how good they'd gotten at that out in public.”
Fredette says his experiences with Tyler have made him more compassionate toward other children he sees out in public. “You hear people say when somebody's kids are screaming in the store, ‘He needs some discipline.’ …That's not our first reaction anymore,” he says.
● Know your grandchild's rights and advocate for them. Every state has a publicly supported information and training center for parents of children with special needs, such as the PACER Center, says Susan Einspar, a senior parent training and information advocate with PACER. The centers work with families to get the services and education to which their children are entitled under federal and state laws. For example, Oricchio says PACER helped him advocate for Sammy to have an aide in school. Some may have information or support groups for grandparents, as PACER does.
● Understand your own limits. “Just like we wanted the best for our own children, we certainly want the best for our grandchildren,” Einspar says. That means many grandparents are generous to a fault, whether it's with time or financial resources. Seek advice on how to help your children and grandchildren financially without too much risk to your own future, she says. And recognize your own physical limitations; this is a marathon, not a sprint. As you and your grandchild age, it may be harder to provide childcare, for example, and you'll need to adjust what you can do to help, grandparents say.
Tyler, now grown, no longer spends nights at his grandparents’ alone because, as he and they have aged, it's become more difficult for them to physically handle his seizures.
● Find support for yourself. Connect with other grandparents of children with disabilities who understand the medical and emotional issues. “Getting online, getting in a support group, getting attached to other grandparents who have the exact same diagnosis seems to be by far the best thing,” says Harrington Meyer.
● Discover the joy. Fredette can't wait for pandemic restrictions to be lifted. He wants to take Tyler for walks and out to eat and to spend the day with him again. “That's not going to change and hasn't since the day one with him,” he says. Einspar describes it as finding gifts among the challenges. “Perhaps you're not going to be able to go to their football game and see them as quarterback,” she says, “but you're going to have new dreams and aspirations for your grandchildren.”
Susan Moeller is a contributing writer who covers lifestyle, health, finance and human-interest topics. A former newspaper reporter and editor, she also writes features and essays for the Boston Globe Magazine as well as her local NPR station, among other outlets.