“I’m the invisible one in the family,” muttered thirteen-year-old Chelsea when asked to describe herself. I had been working with Chelsea’s parents for quite some time, focusing on their younger son who had severe disabilities. We had been making good progress, but the parents wanted me to speak with Chelsea to see if her increasingly problematic behaviors were “just a stage” or reflective of more serious concerns.
I asked Chelsea what it was like growing up in a family with a younger brother who had serious developmental problems. For the next 25 minutes I said little as Chelsea described in painful detail her feelings of being unloved and ignored. Everything in the family revolved around her brother’s myriad of special needs. From her perspective, she got good grades, caused no problems, and thus got no attention.
She was a cheerleader at school, but her parents rarely attended any of her events. Dinnertime conversation focused exclusively on her brother’s problems or discussing upcoming doctor’s visits. Chelsea was reluctant to have friends come over to their house as she was embarrassed by her brother’s behaviors. She loved him, but felt guilty for her feelings.
She then asked me a question that reflected the increasing anxiety of this sensitive teenager. “When my parents die, am I going to have to take care of my brother for the rest of his life?”
Chelsea’s experiences are not unusual according to research published in the July, 2013 Journal of Pediatrics. This study looked at the adjustment of siblings of typically developing children compared with youngsters with disabilities. Kids raised in a family with a disabled child are significantly more likely than other children to have problems in interpersonal relationships, school and psychopathology.
This is not due to bad parenting. Raising a child with a disability is really difficult, placing all kinds of financial and emotional stresses on a family. I’ve worked with a lot of these families over the years and these parents are among the most amazing people I’ve ever met. They sacrifice so much in caring for their disabled child. They hope, pray, and work very hard but often realize only modest gains for their efforts.
Teachers, physicians, and therapists who care for such children need to focus not only on the needs of the disabled child, but also on the parents and siblings. I’m embarrassed to say that I never asked about the siblings in this family until the parents asked me to speak with Chelsea. There was no easy solution to offer this delightful teen, but some modest changes were made in the family after the parents carefully listened to Chelsea’s feelings.
If you are the neighbor or a friend of parents with a disabled child, ask to help out. These parents deserve our admiration and support.