By John Chimarusti, Ph.D, LMSW
During the 1960s and 1970s, there was a concept that was commonly referred to as “chronic sorrow” for parents who had children with special needs. Psychologists believed that most families went through seven stages of grieving: shock, confusion, anger/guilt, hope, depression, understanding and acceptance. It was thought that parents experienced these stages in a particular order that was repeated whenever their children underwent life-changing events that reminded them of when they first became aware of the child’s disability.
I disagree. While it’s certainly true that parents struggle with a range of negative emotions, this model fails to recognize the deep love and great joy that parents experience with children who have special needs. I prefer to describe parents’ experiences as “emotional journeys” that evolve as they come to better understand their childrens’ situations. Each individual’s journey is unique, and the progression through feelings such as anger, denial, hope, acceptance, understanding, pride and joy, as well as other positive emotions, follows no set pattern. Nor does everyone experience all of them. Individuals often deal with several emotions simultaneously. Individual family members may experience emotions differently, or at different times.
I believe that it’s important for parents to understand their unique emotional journey, especially during difficult times in their children’s lives. It’s also important for professionals to recognize that families change. Self-knowledge, bolstered by support from relatives, friends and professional counselors, will serve parents well as they confront volatile emotions.
I envision parents progressing up a spiral staircase that twists in response to new situations in their children’s lives. The family’s knowledge and understanding increase over time, so their reactions change. By viewing their emotional ups and downs as a journey involving personal growth, parents are able to view their frustrations in a more constructive light. And that frees them to better appreciate the times of happiness and pride they share with their loved one who has special needs.
John Chimarusti has been an outpatient social worker at Carrie Tingley Hospital , Albuquerque, New Mexico, for 17 years, advising families on how to obtain services for loved ones with special needs. He has cerebral palsy and leads a support group for those whose family members have cerebral palsy and related disabilities. He teaches a course on “Friendship and Intimate Relationships” at the University of New Mexico.