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Spring 2019

Summer 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Julie Holmquist Reprinted with permission from The Parent Advocate Quarterly, Spring 2009, published by Partners Resource. To learn more about Partners Resource Network, visit their website at .

Abstract: A family shares suggestions on how grandparents can support their children when they have a child with a disability.

Keywords: , blind, grandparents, parent support

Tom and Gwen Besnett sound like any other set of proud grandparents. Ask them about their grandson, Orion, and they’ll tell you that he is not only charming and gutsy; he has perfect pitch, loves reading car magazines, speaks Arabic with his neurosurgeon, and chats in Urdu and Hindi with a former personal care attendant. But when Orion Besnett Slocum was born 20 years ago to their daughter, Lisa, it was a crisis for the couple. They discovered that Orion had Dandy-Walker syndrome and was legally blind. “Someone in the hospital told me that he wasn’t going to live,” Gwen recalls. “It didn’t look like he was going to be able to talk,” Tom says. In the years following Orion’s birth, Tom and Gwen discovered -by trial and error- how grandparents can best help their child as well as their grandchild with a disability. Tom, Gwen, and Lisa share their advice. Tom’s advice:

  • Join a group. “It provides a wonderful way for grandparents to maintain their bearings and share their sense of loss and grief with other understanding grandparents,” Tom says. “It also provides a good place to celebrate the tiny gains in your grandchild’s life.”
  • Find out who your grandchild is and find ways to enjoy him and to celebrate with him.
  • Figure out how to adapt and overcome obstacles so your grandchild can be involved in fun activities such as fishing along with you.

Gwen’s advice: to personality and generational differ

  • • Be supportive, but be careful not to overstep your bounds. “l have a nursing background and I kept asking Lisa questions about Orion’s care.” Gwen says. “Finally, Lisa told me to bug off. She told me that she had to do it herself. It was difficult for me, but I understood.”
  • • Try to understand the parents’ new life. They may be dealing with insurance issues, Social Security, Individualized Education Programs, and Medicaid. “It’s the parent’s struggle, but grandparents must realize what a struggle it is,” Gwen says.
  • • Help with childcare. Among other things, Gwen baby-sat, made pancakes out of vegetables because of Orion s food aversions, and held his hand to her mouth while she talked to encourage speech. Lisa’s advice:
  • • Remember that your child will parent differently than you did, due in part ences, as well as the fact that he or she has a child with disabilities.
  • • Learn to be a good caregiver so you can give the parents a break. “l think that was the most valuable thing my mother did.” Lisa says. “She also took Orion to play classes. It was hard for me to do it, but she loved it.” Both sets of grandparents took infant CPR classes because of Orion’s condition, and Lisa attributes Orion’s love for socializing to Gwen’s ability to hold him for hours at a time.
  • • Provide time for parents’ self care. Sitting with the child for an hour so the parent can take a bath will lessen parental stress. “Orion’s other grandmother would do my laundry or just be another person in the house so that I wasn’t alone,” Lisa says. “That gives you the ability to relax.”
  • • Tell the parents that they are allowed to spend time on themselves, apart from their child with a disability. That makes it okay.