January 18, 2013
Several years ago, I wrote an essay that was published in an anthology of works by mothers of special needs children. “Dancing with Despair” recounted the first 14 years after my son’s autism diagnosis, during which life was overrun by doctor and therapy visits, special diets and behavioral programs. Sleepless nights followed stress-filled days.
During a visit after the anthology was published, my mother-in-law asked to read it. She returned it to me, eyes glistening, voice full of regret. I never knew, she said. I wish we lived closer so I could be of more help.
My son had grown from a toddler to a teen before his grandmother fully appreciated the life we had lived post-diagnosis. All those years later, his grandma’s reaction to the anthology reminded me that parents are not the only ones who experience confusion, shattering of dreams and revamping of expectations when a professional diagnosis gives unusual behavior and communication patterns an identity.
Today’s grandparents were raised in a world in which people with autism were hidden from view. But the condition that was rarely discussed in years past has become the frequent subject of media reports as people of all ages are being mainstreamed into society.
My essay was a pathway to understanding for a grandmother who lived hours away and saw her grandson infrequently. But it did not offer concrete strategies.
For those seeking insight and tools, a local author offers a resource I would have welcomed two decades ago. With input from her son Stuart, Sylvia Miller Grubb wrote “Grandparenting a Child with Autism.” The Stillwater resident wrote the book to educate grandparents and anyone else who wants to have a relationship with a person with autism.
Grubb shares vignettes about her grandson Micah’s experiences on Valentine’s Day, on vacations, while swimming and horseback riding, going through confirmation and entering the job world. Each is followed by suggestions about “what grandparents can do.” Grubb also directs readers to resources that were unavailable when Micah was diagnosed in the 1990s (www.autism-grandparenting.com).
And she addresses an issue that can be painful for parents. Too often, parents, already stressed by their children’s challenging behaviors, are met with looks or comments from friends, family and strangers that suggest a dose of discipline would resolve their child’s “behavior problem.” It could be the child is throwing a tantrum in the grocery store checkout line or refusing to eat his dinner. While he may need to be disciplined, he could also be suffering from sensory overload created by noise, lights, smells, and strangers or a disruption in his routine.
Grubb notes, “Children with autism may refuse to do something for reasons that are not apparent, or for reasons that seem completely irrational … Is this bad behavior or just a product of autism?” Often times, sensory overload or anxiety about new situations can lead to difficult-to-manage behaviors, she explains. The more that extended family members understand about the child’s need for routine and predictability, and sensory and communication challenges, the easier it will be to spend time together.
Family gatherings can be difficult, as those who see little of the person with autism struggle to make a connection. The child may be nonverbal or he may display odd speaking patterns. Children with autism may repeat lines from favorite TV shows or movies or speak in the third person. They tend to be very literal, so they may misunderstand idioms that are commonly used by others.
Relatives may not appreciate why a child with autism would be confused by expressions such as “beating around the bush.” Learning about the communication challenges and speech habits of people with autism can help facilitate a bond. Moreover, the more family members understand autism the less likely they are to attribute a child’s failure to look another in the eye or to exchange common pleasantries to poor parenting or bad manners.
Not every grandparent lives close enough to drive the grandchild to appointments or to provide respite care, as Grubb has. But grandparents bring their own parenting experiences and intuition to the situation, and that can prove valuable. Early on, my son’s grandmother voiced concerns others had silently harbored. During a family get-together she speculated that he had gone deaf because he did not respond when his name was called. In fact, like Grubb’s grandson Micah, he had lost the language he had mastered and slipped into this own world. Her concerns prompted a professional consult that resulted in the diagnosis.
Grubb offers an array of options for lending a hand, whether it be serving as a bridge to more extended family members who are unfamiliar with autism, researching programs, or offering a sympathetic ear to another grandchild who may be struggling with her sibling’s autism. “It requires a team to raise a child on the autism spectrum,” she says. Grandparents can be on the team at whatever level they are able to participate.”