Children with autism need a grandparent as much as any youngster -- and so do their parents. One grandmother tells her family's story in a new book, "Grandparenting a Child With Autism."
Sylvia Grubb with her grandson Micah. Sylvia's book "Grandparenting a Child With Autism: The Joy, Frustration and Growth of Living with Autism" (Quill Press) is the story about Micah and his family, but also a guide for other grandparents with grandchildren on the autism spectrum.
Like most grandmothers, Sylvia Grubb knows what her grandson Micah likes: swimming, bowling, reading maps, eating pizza, watching TV and taking boat rides on the St. Croix River.
But getting to really know Micah, now 17, has been more challenging. He was diagnosed with autism at age 3. Sylvia, who lives in Stillwater with her husband, Hollis, remembers the phone call she received from her son, Stuart. He and his wife, Susan, had just returned from the doctor, who had confirmed their suspicions about the toddler who had stopped speaking and just stared off into the distance.
"He told us about Micah's diagnosis and that he and Susan needed us on their team," said Sylvia. "I remember feeling overwhelmed because I didn't know what autism was."
Wanting to learn more, she attended a conference sponsored by the Minnesota Autism Society. When Sylvia asked about resource books for grandparents, she found none.
"I thought maybe I could write one, so I started by writing down stories about Micah when he was younger, but I realized there was a lot I didn't know about what is involved with autism," she said. "About three years ago, at Stuart's request, I pulled it back out, and he and I began working on it together."
Stuart Grubb said he knew this type of book would be valuable for families and extended families affected by autism.
"There's uncertainty and a certain amount of fear when a child is diagnosed," he said. "We want our story to give people confidence that things will be OK."
"Grandparenting a Child With Autism: The Joy, Frustration and Growth of Living With Autism" (Quill Press, $14.95) is the story of Micah and his family, but also a guide for other grandparents whose grandchildren are autistic.
Need for information
"I've been overwhelmed by the number of grandparents who have contacted me about their own families," said Sylvia. "There can sometimes be a great deal of denial on the part of grandparents, who will tell me they've never had anything like this in their families before."
In the book, she addresses several circumstances where grandparents would typically be included, such as holiday gatherings. When Micah was young, he would run out of the room when it was time to open presents on Christmas or for his birthday, so the family adjusted accordingly, often just sending his unwrapped presents home with him.
As many grandparents do, Sylvia and Hollis spent time baby-sitting for Micah and his older sister, Muriel, now 20. (The couple still do what Sylvia calls "teen-sitting" for their grandson, who cannot be left alone.)
"I remember there was a comforter in a guest bedroom that Micah loved when he was little. The heaviness of it made him feel secure and protected," she said.
The Grubbs have traveled on their own with Micah, bringing him and his cousin on a trip to Washington, D.C., a few years ago, where Micah surprised them by tolerating the airplane ride, as well as the city's crowds. One of his favorite activities was riding the Metro.
Asked recently about his memories of that vacation, Micah remembered a tour of Capitol Hill. "We went to the Legislative House. We saw the entire Congress from the balcony," he said, asking his grandmother if she remembered what members of Congress were discussing.
Susan Grubb thinks Micah, who will be a senior at Stillwater High School in the fall, is very fortunate to have two sets of grandparents (her parents and Stuart's) who are very involved in Micah's life and very accepting of his challenges. "A lot of his peers have grandparents who don't want to be involved," said Susan. "I think those grandparents are missing out on building those relationships."
How to connect
For grandparents who live farther away, Sylvia suggests sending letters or packages or staying in touch via e-mail, which she and Micah's older cousins have found is a good way to communicate with him. If the grandchild participates in particular activities, she suggests attending the events when possible. (Micah loves to ride horses, often going to a local stable four days per week.)
Supporting the parents is also important, with everything from driving the child to therapy appointments to helping with other children in the family.
Since her grandson's diagnosis, Sylvia said, she has learned much about autism, which has been instrumental in helping her cultivate an important role in Micah's life.
"A therapist once told me to do everything we could to bring him into our world, since it is easier for him to be in his own world," she said. "As Micah's grandmother, I have a much better understanding of that now."
Julie Pfitzinger is a West St. Paul freelance writer.