How to be at hand to help without sticking their mugs in to meddle is one of the toughest calls special grandparents like Bonnie and Marty Diamond face each day.
"It is a fine line we walk," says Marty, grandfather of 9-year-old Erin, who has a cognitive disorder that leaves her unable to talk, dress or care for herself. "In some ways, we are so involved in the day-to-day care we lost the privilege of being grandparents."
The Diamonds, of Buffalo Grove, retooled their life to facilitate the flexibility they'd need to be the support system their daughter, Stephanie, and her husband, Justin, could rely on. Marty switched to a part-time substitute teacher job. They helped the kids move just two blocks away to eliminate the hour-long drive that was a road block to being there for their daughter's family.
"We had to find a way to do whatever needed to be done without interfering in our daughter and her husband's lives," Marty Diamond says.
"When we see things we would do differently if she was our child, we have to find a way to make suggestions in a way that doesn't beat (her parents) over the head with it," says Bonnie, an elementary school teacher.
Knowing when to butt in and when to butt out is just one of many heart-wrenching dilemmas grandparents of children with special needs go through, says Natalie Penner. Penner is a grandma who organized a support group for special grandparents at Keshet Day School, which supplies educational, recreational and vocational programs for children and young adults with special needs in Northbrook.
"We grandparents have two problems," says Penner, whose grandson, Adam, who has autism, is now 20. "We see our grandchild in pain and we see our child in pain."
Volunteering unwanted advice can backfire and fuel that pain, she says.
"Your child needs a tremendous support system," Penner says. "They need to know you're there to do what you need to do, but what they don't need is a lot of extra advice."
The grandparents support group at Keshet meets four times a year. One topic the group of about 30 takes on is how to balance attention between grandkids with special needs and those without.
The equal-opportunity grandparenting issue came into focus for Bonnie Diamond when Erin's baby sister, Abby, told her "I wish I was special like Erin."
But, getting past the initial grief for the grandchild you expected may be the most taxing test of all, special grandparents agree.
"You do go through a grieving process. You grieve the things you won't do," Bonnie Diamond says.
"You won't see her walk down the aisle at her wedding. You won't have a great-grandchild. We don't know how other people are going to feel about her. And we don't know if she'll still be living with us when she is 50 years old."
Penner's been there, done that. But she watched her worst grandparenting fears turn into opportunities.
"At first, I felt Adam's autism would change me and my child's life for the worse, but actually it changed for the better," she says. "With my involvement at Keshet and volunteering three times a week, it has given me a purpose in life and introduced me to many lifelong friends."
For more information on the grandparents support group, contact Natalie Penner at the Keshet Administrative Offices, 617 Landwehr Road, Northbrook, IL 60062, (847) 205-1234 or visit www.keshet.org.
Robyn Monaghan has been a journalist for 20 years, is an
award-winning investigative reporter and a mom who lives in