News and Notes from The Johnson Center

What is My Part in This Experience? One Sibling’s Story

JCCHD | Mon, April 30, 2012 | [Community][Events][Sibling Spotlight]

Jacob was only nine when his younger brother Tim was diagnosed with autism. Jacob knew that his brother was different. He didn’t like to play, had trouble speaking, and would do funny things like rip up paper. Jacob was told that Tim was “autistic,” but he didn’t understand what that meant. Was it contagious? Would Tim be this way forever? Whatever autism was, to Jacob it meant that Tim got more attention and was able to have people come over to their house and spend hours playing with him. It even meant that Jacob had to be pulled out of school because Tim often had to go to the doctor, speech therapist, or occupational therapist. Even the doctors would treat Tim differently and give him special attention. Jacob couldn’t help feeling that it wasn’t fair.

When Jacob was 14, he had a better understanding of what autism meant. He wasn’t as jealous of Tim and knew that the extra attention was granted only because Tim needed additional medical, educational, and behavioral support. Jacob became more concerned about Tim’s health and was scared that he would never get better. Jacob was also aware of how different his family was compared to his friends’ families. Sometimes Jacob felt embarrassed that his family had to eat certain foods or he got angry when they couldn’t go out as a family because of Tim’s outbursts. Jacob understood and accepted Tim’s diagnosis, but often felt angry, frustrated, and fearful of what autism was doing to Tim and to the whole family.

When Jacob was 20 his parents debated putting Tim in a residential living facility. Jacob knew that Tim had come a long way since first being diagnosed, but he worried that if he left to pursue his own goals his family wouldn’t have the additional support they needed to care for Tim at home. Jacob felt torn between moving away to start his own life and staying and supporting his family. Jacob realized that his life might always be consumed by Tim’s health. This realization didn’t make Jacob feel angry or resentful. Instead, Jacob felt a sense of purpose and responsibility toward his brother. He knew that life would be different and he might have to make sacrifices, but his brother was more important. Jacob just wished he knew what he could do to help Tim. He wished that someone could help him understand his part in this whole experience, especially since it had affected his life so dramatically.

Throughout life we are challenged and defined by different experiences. For Jacob, his challenges arose when his younger brother was diagnosed with autism. Jacob had to overcome feelings of confusion, jealousy, and resentment.

We as parents do our best to address the needs of children with developmental disabilities, but we shouldn’t limit our attention and support to only one child. We need to strive to educate, support, and provide services for all family members living with autism, including brothers and sisters.
The Johnson Center for Child Health and Development understands the unique experiences brothers and sisters of children with developmental disabilities face throughout life. Like Jacob, overwhelming emotions typically begin at a young age and continue throughout life. As part of our commitment to addressing these needs, The Johnson Center is offering an exciting summer camp where siblings can connect to peers. The camp will be geared toward addressing common misconceptions, questions, and issues young brothers and sisters of children with autism may have, and providing an engaging and fun environment where they can learn tools for handling many situations. Our goal is to educate siblings and build a strong support system that they may utilize throughout their lives.

Unlike Jacob, who didn’t have early support and had to figure things out on his own, the siblings in this unique camp will be offered the resources and answers they need, so they don’t have to ask “What is my part in this whole experience?”

For more information, click here.