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Shepherd Center Staff Members and Former Patients Share Some Do’s and Don'ts of Parenting With a Disability

Many Shepherd Center patients are parents – or plan to be parents someday. How do you parent with a disability? Shepherd Center staff and former patients share these tips.

DON’T shut children out of the rehabilitation process. It’s OK to bring children to the hospital to visit mom or dad. “Of course, it depends on the developmental stage of the child and the recovery stage of the parent,” says Tana Hall, M.Ed., LPC, the family counselor in the Acquired Brain Injury Program. “But children are resilient, and with some preparation, they can get used to anything. Being in a hospital is a part of the process – so to leave them out of the process is to do them a disservice.”

DO be straightforward with kids. If they ask questions, answer them in an age-appropriate way and be honest.

DON’T make children the caregivers. Hall says they can help out around the house, but they should not be pressured into duty. “Kids still deserve to be kids, and figuring out that balance can be hard,” she says. “Every injury is different, every situation is different, every family is different.”

DO find different ways to spend time with your children. Harley Smith, who sustained a C-6 spinal cord injury after doing a flip off a trampoline in July 2012, used to do many outdoor activities with his three children, including sprint triathlons. “I had to step back and figure out different ways to still do things with them,” Harley says. “I didn’t want to get to the point where I had to apologize for not being able to participate.” When they go out in the neighborhood, he pushes alongside them as they ride their bikes, and gets in the pool with them instead of sitting on the sidelines watching them. Because he’s no longer working, he has more time to visit their schools and have lunch with them.

DON’T be afraid to ask for and accept help. Family, friends, co-workers and even members of the community can be great resources for help. If the roles were reversed, chances are you would do the same thing.

DO pick your battles. “You have to decide if it’s a need or a want,” says Minna Hong, Shepherd’s peer support supervisor, who was paralyzed in a car accident 15 years ago. Push it if it’s a need. “It was important for me to participate in my children’s activities because it was important to them, so I fought for it. I asked people for what I needed, and most were very willing to help make it work. If you don’t ask, they won’t know.”

DON’T overindulge out of guilt. “It can be a temptation to treat your kids differently because of this injury, or go easy on them because you feel badly or have limited energy,” says Wayne K. Ware, M.Ed., LPC, counselor in the Shepherd Center SCI Program.

DO look at it as a gift. “It’s only negative if you want to look at it that way,” Hong says. “This gives children a chance to experience life a different way and learn how to make the best out of a bad situation.”

DO communicate. “As a family, you really need to talk about what has happened and what has changed,” former patient Harley Smith says. “Talk about the good and the bad. I think this helps with the overall acceptance of the situation.”

DON’T defer parenting to the able-bodied parent. “That can make the injured person more powerless,” Ware says, “and makes one parent always the bad guy.”

DO cut yourself some slack. “There’s a huge loss, and that has to be acknowledged,” Hong says. “The most important thing is to be present with your kids, be honest and love them.”

Compiled by Sara Baxter
Photos by Russ Bryant and Gary Meek

About Shepherd Center

Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.