Thomas Johnson worries a lot. For an 8-year-old, he’s in excellent health and is at his happiest playing soccer. He’s also extremely well behaved around his younger brother Mark.
Mark, age 5, doesn’t speak. He’s autistic and has mood swings. “He’s actually high functioning,” said their mother, Amy, who spends a lot of time taking Mark to doctors. “Mark’s just starting to speak, but it’s hard for us to understand what he’s saying. It’s like when an infant starts babbling; only the mom can make out most of the words.”
“What’s hard on us are the mood swings,” she continued. “We’re still trying to get a clear diagnosis of what’s wrong. In the meantime, it’s taken a toll on all of us.”
Illness can shake up a family, and children are especially vulnerable. Whether they’re the ones with the disability or if it’s a sibling or a parent, it’s essential to talk to your child about his emotions. “We’re all seeing a therapist to help us function,” Amy said.
Thomas often feels neglected because his mom spends more time with his brother. “My husband and I try to schedule time for Thomas,” Amy explained. “We have a neighbor look in on him when I take Mark to doctor appointments. And we try our best not to miss his soccer games.”
Children who live with a parent or sibling with a chronic illness often feel guilty that they’re not sick. “They also become anxious that they can become sick, too,” said Amy. “We spoke to our therapist about that and also the school.”
Telling teachers and school administrators about issues at home is essential. “Thomas’ teachers understand why he sometimes comes to school upset,” said his mom. “His brother could set him off and, while he’s learned how to let go of those negative emotions, some days are harder than others.”
Amy counts herself as lucky. She works part time; so she can spend time taking Mark to see different doctors. She also is active in her kids’ schools. Thomas and Mark go to different schools. “We moved Mark to a school for kids with special needs, and the support system is so much better than at the regular public school,” she said. “The public school just doesn’t have the means or know-how to support a kid like Mark.”
Mark’s school has monthly counseling meetings for the parents. “We meet and discuss our feelings,” Amy said. “I kind of feel like I belong to a club, a club for parents of special needs kids. People who don’t have kids with special needs just don’t understand the family dynamics and what we go through.”
One of Thomas’ friends has a brother with Tourette syndrome, a neurological disorder characterized by repetitive, involuntary movements and vocalizations. His friend was extremely embarrassed being seen in public with his brother. Through counseling for him and his parents, they all learned coping skills.
Thomas and Mark have also learned skills to manage their emotions. Their parents set the following rules that can apply to others who have a similar situation:
The Johnsons don’t always have perfect days. But by following these coping skills, and thanks to the support system they’ve built with family, friends, doctors, and teachers, Thomas and Mark are better able to handle their emotions.
June 03, 2016
Janet O’Dell, RN