Jon Ebersole of Oak Park, Illinois, believes his 24-year-old twin daughters’ shared disability, cerebral palsy, created at times a challenging experience for him and his family, but also some benefits. According to the National Institutes of Health, cerebral palsy is a “group of neurological disorders appearing in infancy or early childhood and permanently affecting body movement, muscle coordination, and balance.”
In a telephone interview, 55-year-old Ebersole said, “The first word coming to my mind in terms of what was most challenging raising them was ‘expectations,’ and my managing of those expectations of what they could and couldn’t do.” A former social worker, Ebersole today is senior area director for Joni and Friends Chicago, a faith-based, international nonprofit helping people with disabilities and their families.
As for expections, he said, “For example, early on, my girls were shut out of (most) social interactions because they weren’t playing with other kids, but with adult therapists. So they always related well to adults and not as well to peers. Back then (and still), Amanda was using a wheelchair and nobody wanted Jessica on their team because she couldn’t catch or kick the ball well due to her spatial processing issues and cerebral palsy.”
Watching those interactions between his daughters and others was “painful, sad, and angering.” Ebersole said he and his wife cried with joy the first time his girls were invited over to someone’s house for a sleepover.
“And raising them was hard on our marriage,” he said, “because being able to get respite and time away was hard. There was so much to do and deal with beyond the normal kid stuff. There wasn’t much time or energy for our marriage, which took its toll. But thanks to God, we’re still married after 29 years.”
He cited benefits of raising children with disabilities, saying, “My experience has helped me keep in perspective what’s most important in life. It’s not having your girl play on sports or debate teams or being successful the way the world defines it; but in their having successful in relationships, and in knowing God and his love and acceptance for them because of who they are and not for what they do.”
Daughter Amanda was positive and strong, he said, and twin Jessica, a college graduate, had grit and determination. Ebersole said he wouldn’t be the man he was today if not for his daughters.