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Shepherd Center Helps Parents with a New Disability Find Effective Ways to Care for Their Children

For most women, the early months of a first pregnancy are a time of great wonder. For Jennifer Sexton, it was a time of learning to live in a wheelchair.

Jennifer was just five weeks pregnant in January 2013 when she and her husband, Thomas, were out riding all-terrain vehicles near their home in Dalzell, S.C. Her accident happened in an instant: She took a hill too fast, lost control of the ATV, and was flung to the ground.

In a matter of seconds, Jennifer went from four-wheeling to lying on her back, staring at the sky. Her diagnosis:  a complete T-12 spinal cord injury. She was paralyzed from the waist down.

By the end of the month, Jennifer, a staff sergeant at Shaw Air Force Base, was at Shepherd Center, undergoing rehabilitation therapy and adjusting to life in a wheelchair. When she returned home to South Carolina, she faced a new normal – and the second half of her pregnancy.

And she worried:  How would she ever take care of a newborn baby while paralyzed?

“I was so ready and so excited to be a mom,” Jennifer says. “But after the accident, it turned into worry. I started thinking things like, how would I nurse the baby from the wheelchair? What if I dropped him? I was afraid I wouldn’t be able to give him all that he needed.”

Though she never expected it, Jennifer had joined the ranks of parents who are anxious about caring for children while living with a new disability. For Shepherd Center patients – whether they sustained a spinal cord injury (SCI) or an acquired brain injury (ABI) or have multiple sclerosis – adjusting to parenting is part of the treatment regimen. Shepherd’s ultimate goal is for patients to resume life with as much independence as possible, and that includes parenting.

“We always want parents to be involved with their children as much as possible, regardless of the level of their injury,” says Jennifer Long, OTR/L, an inpatient SCI occupational therapist at Shepherd Center. “So we sit down and brainstorm ideas about how they can make it work and be as independent as possible.”

Whatever the obstacles – physical, cognitive or even emotional – Long says that learning how to parent with a disability requires planning, practice and a little ingenuity. For SCI patients, a lack of core and upper-body strength poses a great challenge for lifting children. Similar physical obstacles confront patients with ABI, stroke and MS, as well. Their interaction with children may be compromised by a lack of balance or strength, even with the aid of a walker or cane. Or patients may have to learn how to change a diaper with one hand, how to get up or down on the floor to bathe or play with a child, or how to manage a car seat.

“Our answer is to give patients as much practice and problem-solving experience as possible as they progress,” Long says. “They can even bring their children to Shepherd Center to gain experience in overcoming new physical limitations.” Shepherd Center therapists will even help people pick out baby equipment that will work best for the family.

Ruth Ann DeFazio, OTR/L, an occupational therapist in Shepherd Center’s ABI Program, emphasizes that safety is a top priority. “In the brain injury and stroke population, being safe often boils down to two things – cognitive abilities and a good support system,” she says. “It also depends on a person’s physical abilities in the arms, legs and trunk. In addition, many of our patients who have cognitive challenges often need strategies for structure, organization and routine.”

While people with MS and SCI may be able to tackle some parenting duties right away, those with brain injuries tend to have a slower transition period.

“Many people with brain injuries are not ready to resume parenting when they leave Shepherd Center,” says Tana Hall, M.Ed., LPC, the family counselor in the ABI program. “They may leave here not fully aware of their limitations. And many don’t have the ability yet to lift their children.”

This was the case with Jeff Garton. In June 2013, Jeff sustained a traumatic brain injury while standing on farm equipment on the Savannah, Ga., blueberry farm he managed. A part of the equipment struck Jeff in the head, fracturing his skull. After several weeks in intensive care at Savannah’s Memorial Health University Medical Center, Jeff was transported by ambulance to Shepherd Center. His wife, Lauren, was 18 weeks pregnant with twins.

Jeff was still a patient at Shepherd Center on Oct. 12, 2013, when the twins, Grayson and Aubrey, were born in Savannah. Jeff was able to be there for the birth. He continued outpatient therapy at Shepherd Pathways, Shepherd Center’s post-acute rehabilitation program for people recovering from a brain injury. Though he’s made remarkable improvement, Jeff still has limited use of his left side, as well as speech problems and cognitive impairments. Lifting or holding the babies was deemed unsafe, so he plays with them on the floor.

His hands-on involvement is no accident. Lauren says that from the beginning, she tried to find ways for her husband to be an engaged parent. “I would bring the babies into the kitchen and put them in highchairs so he could feed them,” she says. “He also washed all the bottles. Now, since it’s good for him to be on the floor, he plays with them, and then helps pick up the toys at the end of the day.”

“Parents with disabilities are still parents, so we want to make sure that relationship status doesn’t change,” DeFazio says. “We work to help the parents stay actively involved in the children’s care. That may mean packing a school lunch, helping with discipline, or staying home with a child or children while the other parent works.”

Staying home versus going to work raises the issue of role reversal that confronts families with a parent who has a new disability. Lauren had planned to work part-time after having the twins, but Jeff’s accident required her to return to her job as a pharmacy professor at South University in Savannah full time. A nanny takes care of the twins during the day and assists with household tasks.

“I wish I could do more,” says Jeff, who has round-the-clock caregivers and is still undergoing therapy near his home. “My hope is to get strong enough to be a stay-at-home dad and take care of them full time when they are older.”

No easy answers exist for dealing with such unexpected changes in roles. Thus, Shepherd Center experts advise patients simply to be engaged, to find any way to make a contribution, even if such ways don’t exactly match original plans.

“A lot of people worry they may lose their power as a parent,” adds Wayne Ware, M.Ed., LPC, a counselor in the SCI Program at Shepherd Center. “The thing that is important to realize is that most of the power is not in the physical presence. It’s more in the force of the personality and commanding a sense of respect.”

The most important thing is to take one day at a time. That’s the mantra Danielle Rowland, 34, of Chester, Ga., lives by. Danielle, who works full time for the U.S. Postal Service, is a mother to two boys – Rhett, 2, and Ross, born in June 2014. She also has multiple sclerosis.

Just 25 years old when she was diagnosed in December 2005, Danielle was told by her doctors at the Andrew C. Carlos MS Institute at Shepherd Center that the condition had to be under control before she could get pregnant. She got the green light in 2011 when her brain scans showed no lesions.

“I worried about having the energy to take care of a baby, especially if I had a relapse,” Danielle recalls. “But we take it one day at a time.” MS causes her to be sensitive to heat, especially in the summer, so she puts on a cooling vest or sits in the pool so she can spend time with her children.

She also has to be vigilant about keeping everyone healthy. “A cold can keep me down for two to three weeks,” Danielle says. “So we do lots of hand washing, I make sure their shots are up to date and I try to keep them out of situations where they have a chance to get sick.”

Likewise, Jennifer Sexton and her husband have come up with some inventive solutions to everyday needs. Baby Thomas, who was born Sept. 10, 2013, and is now walking, plays safely in a play yard installed by his father in a central location. Jennifer can lift him in and out of the crib and the play yard by bracing her arm on the sides, which are padded with swimming pool noodles. When she showers, Thomas is safely strapped in a stroller and watching a TV show in her bedroom – and Jennifer frequently peeks out of the shower to make sure he’s OK.

Like Jeff Garton, Jennifer knows and respects her limitations to make safety a priority. There are some things she won’t do alone, such as pushing the stroller around the neighborhood, putting Thomas in his car seat and driving with him in the car. She has a friend come along for those tasks. When trying something for the first time, such as transitioning from her bed to the chair, she practices with her husband and makes sure she has mastered it before doing it alone with the baby.

These young parents have shown they have what it takes to parent with a disability, and they are ready for the challenges ahead as their children get older. They all agree that aside from perseverance and ingenuity, a lot of success to parenting with a disability has to do with attitude.

“No matter what the situation, just keep your head held high and never give up,” Jeff says. “Someone always has it worse than you, so keep on trying and work as hard as you can.”

Written 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.