When 12-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.
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.
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.
Whatever path Ryan chooses, it will almost certainly include education after high school. He sets his expectations high, and the family is working toward the possibility that he will go live away at college. Still, they take one day at a time, getting Ryan to the point of graduation and keeping their options open. Don and Shelly will continue to investigate all secondary education options. They are looking at programs that accommodate people who have both sight impairments and processing challenges. A non-traditional program could be the perfect place for Ryan and might be able to tailor accommodations to his unique needs.
Don and Shelly still play an integral role in Ryan’s therapy and academics, but they no longer guide all his decisions or activities. As Ryan grows up, his parents are learning when to let go and how to encourage his interests in ways that let him succeed. Their role has grown from ensuring Ryan’s survival to helping him access his community, overcome obstacles, and take on more complex responsibilities. When Ryan was injured, he was on the brink of adolescence. As he continues on his journey toward adulthood, Don and Shelly are ready to walk with him as far as he needs them.
Why stop now?
Asked to give advice to parents of a child with TBI, Shelly says, “Get the facts, but don’t listen” to the negative outlook of many professionals. Don and Shelly acknowledge the physical and cognitive effects of Ryan’s brain injury, but they refuse to let those challenges impose limits on what they believe he can achieve. This optimistic attitude helps Ryan keep striving: He has already exceeded the expectations of his doctors and therapists. Why stop now?
The focus on continual improvement requires patience and persistence. “Modify your approach, but don’t change your expectations,” says Shelly as she explains their approach to Ryan’s post-injury capabilities. “Ryan will always deliver what we hold him accountable to. Sometimes he will get upset with us and say, ‘But I have a brain injury,’ and we’ll say, ‘But Ryan, we hold you to the same level of accountability.’”
Shelly credits the strength of her marriage for being able to work through the daily challenges of caregiving. She and her husband took a “divide-and-conquer” approach to his special needs, with Don specializing on Ryan’s physical therapy and Shelly focusing on academics. The stress of being caregivers definitely puts a strain on their relationship, but on tough days Shelly feels lucky to be able to say that she wouldn’t want to do this with anyone else. Reflecting on their partnership, Shelly says, “As a couple, you have to put your child first, versus your own relationship, but you have to balance your relationship because it’s just too hard to do alone.”
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.