Learning to Let Go, Again Bonnie Todis, PhD, BrainLine Page 1 of 2

Ryan and his family

Multimedia

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  Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, shares the story of her son's brain injury. This is an excerpt from BrainLine's webcast Caregiving and TBI: What You Need to Know. See full webcast here.
• Carolyn Rocchio: A Mother and Caregiver's Story
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  Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, talks about learning to be a caregiver for her son with TBI. This is an excerpt from BrainLine's webcast Caregiving and TBI: What You Need to Know. See full webcast here.
• Caregiving for Someone with a TBI: A Unique Experience
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  BrainLine's webcast "Caregiving and TBI: What You Need to Know" offers ideas and strategies for people caring for a loved one with TBI. Produced by BrainLine.org. View this video in a webcast format. Transcript of this video.
  
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  Dr. Maria Mouratidis is is a licensed neuropsychologist and currently the command consultant and subject matter expert for Traumatic Brain Injury and Psychological Health at the National Naval Medical Center. This is BrainLine's exclusive interview with Dr. Mouratidis recorded on September 17th, 2008. Transcript of the video here.
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When twelve-year-old Ryan left home to play golf with his friends on a warm, sunny afternoon in September 2008, his parents assumed the outing was just a step toward adolescent independence — the first of many “all-boys” afternoons on the links.

Who knew that a shift in the weather would abruptly alter the course of Ryan’s childhood? As he stood on the putting green of the 8th hole, the last remnants of Hurricane Ike swept through Cincinnati in a sudden, violent windstorm. Just seconds after Ryan waved to a fellow golfer, a strong gust ripped a large branch off a tree and whipped it across Ryan’s head, shattering his skull.

When Ryan’s parents, Don and Shelly, got the call that Ryan was hurt, they didn’t ask what happened; they simply got in the car and drove. It wasn’t until they arrived at the hospital and spoke with the doctors that they realized the magnitude of Ryan’s injury. After spending nine days in a coma, Ryan slowly began to regain consciousness, first squeezing Shelly’s hand, later using sign language to communicate.

Changing roles

During the two months Ryan was in the hospital, Don and Shelly recognized that their role as parents was going to change. Ryan worked hard at rehabilitation, defying his prognosis and improving on a daily basis. However, it was clear that the road ahead would be very long. There is no guidebook for navigating life after a brain injury.

In a way, a severe brain injury reverts the parent/child relationship back to infancy, with parents attending to every basic need, from feeding to diapers. The situation is heartbreaking, but the routines seem familiar. “When you have a child with special needs — with an injury like brain injury — it’s like you just all of a sudden wake up one day and it’s upside down. All of a sudden he needed us for everything, and then we had to learn to let go again. It’s very hard to let go again as a parent after a serious injury,” says Shelly.

Ryan is now almost 16 years old. Like any teenager, he craves independence. However, his needs are complex, and it’s hard for his parents to know when and how to step aside in an appropriate manner. Shelly can’t reference the experiences of other parents the way she did when Ryan was a young child; none of his peers have gone through anything similar. She often wonders how to encourage Ryan to be self-sufficient while still addressing his changing needs and current limitations.

“It’s one of the things my husband and I try to coach each other on,” says Shelly. “We need to give him some independence and space. For Ryan to be able to live independently someday, we basically have to treat him today the way we want him to be at 24. If we don’t, he won’t get there.”

Back on the links

With the support of his family and devices for mobility, Ryan earned straight A’s in his 9th grade classes, plays golf on his high school team (he uses an electronic leg stabilizer and does extra physical therapy in order to play one-handed), and competes in baseball through The Miracle League. His goal is to one day attend college and live independently, but it takes help from his entire family to work toward that goal. Ryan’s injury damaged the part of his brain used for planning and organizing and left him with chronic fatigue, left-side paralysis (hemiplegia), and a left-field cut-vision impairment. Because of this, Ryan has to work much harder than his peers to achieve his goals.

In spite of everything, Ryan keeps working and stays positive. Shelly is amazed by his persistence, humor, and upbeat attitude. With so much against him, Ryan could easily develop a bad attitude or become depressed. He certainly doesn’t want to have to work as hard as he does. Learning new information doesn’t come easily at all, and sometimes even Shelly is discouraged by the effort it takes to move forward with his academics. But Ryan makes the daily effort to keep exercising his brain and body.

Although Ryan has adjusted to his new life academically and in sports, the social part of high school has been hard for him. Ryan missed two years of school because of his injury, and though he was able to catch up with his studies, he missed many of the teenage experiences common among his peers. In high school, many of Ryan’s friends are involved in activities he can’t fully share — contact sports, cars, staying out late. Because they don’t share activities the way they used to, it is harder to find a new common ground. It’s been very difficult for Don and Shelly to watch Ryan struggle socially, but those struggles seem to provide extra motivation for him to develop his stamina and mobility.

Moving from hole to hole

Ryan’s parents embrace his stubborn streakbecause it helps keep him moving forward. At the start of 9th grade, Ryan had to be careful not to bump into people or fall over in the hall at school. In the halls, he walked with an aide for safety purposes. By the end of the year he was moving unaided between classes with the rest of the students “whether he was supposed to be or not,” Shelly says.

Don and Shelly are working to encourage Ryan’s self-reliance at home, too. Sometimes the encouragement happens in unexpected ways. When Shelly started to travel out of town for her job, Ryan couldn’t rely on her to always be able to do things for him at home. The change ended up being surprisingly good for both Ryan and his parents. The skills it forced him to learn let Ryan spend his first two nights away from home at summer camp. Over those two days, Ryan matured and his parents saw him making more decisions on his own and taking care of his own needs. The experience was so rewarding that Ryan is going to a five-day camp later in the summer. He and his parents are excited about his next adventure.

Looking ahead

 Even though he needs more time and practice to master a skill than he did before his injury, Ryan is as intellectually bright as his peers. Just as they’ve been with him throughout the healing process, his parents are prepared to support Ryan on whatever path he chooses. Shelly can see him succeeding in careers ranging from youth ministry to working with kids in the hospital.

Written exclusively for BrainLine by Bonnie Todis, PhD, a senior fellow / research professor at the Center on Brain Injury Research and Training at the Teaching Research Institute.

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