An Empty-Nesting Challenge:

Helping an Impaired Child Achieve Independence

By Robin C. Bonner

Life Changes in an Instant
As 8-year-old Catherine chased a ball into a suburban Philadelphia street, a speeding car struck her and, in a flash, turned an innocent game of “kick-the-can” into a family’s tragedy. The head injuries she sustained from the impact were so severe that, for several weeks, young Catherine’s life hung in the balance. Her family focused only on the dire situation at hand: Mom* stayed by her side night and day. Dad, and older sister and brother, made do without them, and Children’s Hospital of Philadelphia became the family’s second home.

Catherine’s comeback surprised everyone, even her grateful parents, and eventually, through a rigorous regimen of physical therapy, she made great progress: From clinging to life in a fetal position to relearning everything she had ever learned—how to sit, how to stand, how to walk, how to see, and even how to think—Catherine made that journey. Everything you and I take for granted, she had to learn again. Catherine reclaimed her life, but it was a life changed forever.

Homecoming
The big day came for Catherine’s family to bring her home. Catherine’s brain injury impaired her vision and, consequently, limited her activities. It also rendered her unable to tell what her eyes were seeing. In addition, she needed to use a wheelchair as a mode of transportation. So, enabling Catherine to understand more about what she was seeing and helping her to walk unassisted were the family’s first goals after her release from the hospital. Mom changed jobs to local part-time work, so she was available to care for Catherine. Dad put in countless hours of overtime at his job with PECO, a regional electric company, to compensate.

Catherine’s siblings supported their parents and sister in any way possible. Mom elaborates, “My son and elder daughter’s roles were the same as they had been: Be the best sister and brother you can be—include her, love her, work with her. So, her older sister cared for her as an older sister does, and her brother beat up on her as usual, and boy did that help her work out some of her anger problems! She learned to be annoyed and to control herself at the same time.” The family reestablished the “normalcy” of their routine as quickly as possible, which, her mother says, greatly accelerated Catherine’s recovery.

Catherine, for her part, went back to school, but this time to special education classes. Mom explains, “Every brain injury will present different challenges. The variations are numerous and the hurdles are continuous and many, but I figured our options were one—to attempt to restore Catherine to the best that she could be.” The family, then, sought normalcy for Catherine at school, as at home, in as many ways as possible. Mom continues, “Fortunately, the experts at Children’s Hospital worked excellently with our public school system, and my ‘new’ daughter was placed in a special education class with a fabulous teacher who was humorous, yet strict.”

“Catherine entered her new classroom in a new school while still in a fog. She didn’t know who she was or truly where she was, but she had to begin somewhere. The challenge for her teacher was immense, to say the least, but she gave Catherine a good start back to life in the school system. Physical, occupational, and vision therapy continued an intense reshaping of her mind and body. The curriculum required regular classes and extreme dedication to homework.” Catherine’s siblings felt the effects because much family time and effort were needed to help her reach each short-term goal. Mom notes, “Sometimes it wasn’t easy, but our family stuck together and persevered, always hoping for more, but thankful for her achievements. Raising the bar is always a good tactic for anyone, young or old.”

A Special Adult
Fast-forward 14 years. Mom and Dad have now successfully raised three children to adulthood—and two to independence. Catherine, now 23 years old, however, also strives to be on her own. “Mom, just get me a car!” she exclaimed recently, frustrated with her inability to transport herself at her own discretion. But it’s not that easy. As her Mom explains, “Catherine survived the unbelievable and now just wants everything that everyone her own age has. She is legally blind—she can make out shapes and colors, but she’ll never drive. I tell her, ‘Remember what you have to be thankful for. You can walk, talk, laugh, cry, and see better than we expected. Yes, it’s frustrating but not the end of the world.’”

Not only is Catherine challenged by sight limitations, but because of her brain trauma, she also experiences problems with self-orientation and processing information. She lacks the cognitive ability to memorize patterns, but in time can accomplish this, depending on the complexity of the task. Unfortunately, the situation precludes Catherine from using a guide dog, which relies on cues from its master. Mom notes, “That is where I would have to say my energy has gone—in being there and supporting her and encouraging her. Through many ups and downs, she has developed and learned to make do and continued to grow.” And, Catherine's mother is single-minded in this respect—it is obvious during our conversation and amazes me with its importance.

Through the years, Catherine, with her family’s help, has taken advantage of every opportunity. Her involvement with the local chapter of the Association for the Blind has allowed her to experiment with and continue to learn a talking computer program called Zoom Text, which allows her to “read” by listening to text read to her by the program. Her mother helps: “Continuing my own education by reading online or attending conferences about brain trauma and medical advances helps us with our daily lives. Every facet of my daughter’s life, from involving her in summertime camps for the blind to working or volunteering through the summer, assisted by a job coach, has helped her to grow. And, as happens with the growth of any child to adulthood, a parent’s attention to detail will shine through.”

In other words, Catherine has come a long way. Vision impairment, self-orientation, and information processing aren’t the only limitations she faces, however—she has other physical challenges, as well. Over the years, she has reached the point where she can function at a certain level physically, although she moves at a much slower pace than an uninjured individual. She walks with a cane but does her own wash and can stay home alone for periods of time.

Participation in various physical activities has helped. For 13 years, Catherine has benefited from therapeutic horseback riding and participated in horse shows. She skis every winter, taking part in adaptive ski programs and skiing with the family. “She has come a long way from skiing between Mom and Dad’s legs to holding a pole and now skiing without assistance and listening to commands to turn left or right,” her Mom explains. In addition, Catherine has played T-ball in the Challenger Baseball League and basketball in the Special Olympics, and has enjoyed swimming in school and at the YMCA. She works with a personal trainer, who helps her develop and strengthen her body, especially her weakened left side, to the greatest possible extent. For Catherine, the primary goal is always the same: To live to the best of her ability and to strive for more. She manages to achieve this through the unwavering dedication of her family.

Independence
“My daughter loves it when she can experience independence,” Catherine’s mother relates. “We walk a lot down the shore on the sidewalks, trying to perfect Catherine’s use of the cane and ability to remember routes.” Her desire is strong, but frustration is a deterrent. An occupational therapist from the Association for the Blind coaches Catherine weekly in blindness-related cooking skills. Such programs are there to help, but Catherine’s parents continually need to (1) encourage her to do everything to the best of her ability, (2) note the limitations that still exist, and (3) plan from there.

A group home may provide the opportunity for Catherine to move away from her parents and to make more decisions on her own—as all young people strive to do—and such an arrangement would also provide the assistance Catherine needs in getting around: working, shopping, and generally participating in society. “But, being as independent minded as she is, Catherine wants her own house, a dog, and a parrot!” her mother comments. “She doesn’t want to have to live with somebody else. Is this feasible? The answer is this: The ball is in our court and the game is still being played. Strong personalities are both invaluable and impossible at times, so only time will tell.”

As for employment, a necessary component of life as an adult, her mother says, “Catherine has a great sense of humor. She has interests and hopes. She’s very intelligent, despite her limitations. And she loves working with children.” Right now, she spends time as a teacher’s aide in a daycare center. She is not responsible for the children but rather plays with them and also assists the caretakers. According to her mom, the objectives are simple: “Catherine must try to land a full-time job, pursue further improvements in orientation and mobility to build on her cane use, continue to learn life skills, and practice, practice, practice!” She adds, “Reality checks are a must. Catherine loves to recite a saying she learned at one of her camps: ‘Believe and you will receive.’ She wants to and can contribute a great deal.” This is all that every parent wants for her child—to contribute to society and live a good and happy life.

For this young lady, the journey toward independence has proven to be much longer and more challenging than is the case for most other young adults. Yet, Catherine’s journey has been one for her family, as well. Her parents are prepared to postpone their empty-nesting experience perhaps indefinitely, or at least to redefine it, to help their daughter ease into adulthood. After all, most parents help their children “launch.” It’s just that unusual circumstances demand unusual dedication. Is that not how most parents describe their relationships with their children, young or grown? One of dedication? We’ll stay in touch with this special adult and her family, and report on Catherine’s continuing odyssey toward an independent life and her parents’ toward an empty—or not so empty—nest.

*Note that the given names of Catherine’s family members, and their last name, have deliberately been omitted to protect the family’s privacy.