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How Rett Syndrome and Other Disorders Affect Grandparents

By Judy Loseff Lavin, M.S.W.
Author of Special Kids Need Special Parents

Grandparents often have an extremely difficult time when a grandchild is born with or develops special needs. “A grandparent’s grief is usually more involved than the parents because there is sadness for the adult child and the grandchild,” said Becky Pruitt, a licensed clinical social worker from Lutheran General Hospital in Park Ridge, Illinois.

Grandparents of children with extra issues feel the loss of a typical grandchild-grandparent relationship. Grandparents have dreams for unborn grandchildren just as parents have dreams for unborn children. Like parents, they lose a dream.

Some grandparents have to deal with the loss of a dream after the child starts growing. With certain disabilities, children may be born ‘normal’ and then develop problems. Take Rett Syndrome. Children with this Syndrome—it primarily occurs in females—are born clinically normal. Within 6 to 18 months, however, they physically deteriorate. Rett Syndrome is a neurological disorder in which those who are affected become unable to speak or even to move the way they want. Sometimes, children like Abigail Brodsky, who starred in a Discovery Health Channel documentary about a child with Rett, can die of complications from the disease.

“I was expecting this ‘perfect’ child, but instead got a permanent loss,” said Arlene Day, whose granddaughter was diagnosed with Rett Syndrome. “We had no chance to watch her develop. A lot of tears were shed. My main concern was for my daughter. How was this going to affect her and her husband? I hadn’t planned on this kind of a life for her and I kept thinking, ‘How could this be happening?’ We hadn’t had a problem like this in our family and I wondered where it came from. Then, I worried about the prognosis for my other daughters’ children. I worried that it could happen again to one of them, who were married at the time but childless.”

Many grandparents cry or act out emotionally when a grandchild is born with a problem. The good news is that the first response to the medical situation is usually just emotional. It doesn’t necessarily indicate how the parents will adjust throughout time. Over time, a grandparent who may have been hysterical in the hospital when he or she learned of the child’s problems may be very supportive down the line. Sometimes, grandparents who are overly controlled with their emotions are less able to cope with the problems that occur when a child has special needs. They are unable to express their feelings.

“I worry more about the less communicative grandparents than those who emote,” said psychiatrist Dr. Miriam Gutmann, from the Chicago Center for Family Health.

Other grandparents go through an emotional upheaval and change. When Casey, Janie Tyson’s granddaughter was born with Down’s Syndrome, she cried and struggled with her emotions. What she finally learned is that one doesn’t have to be ‘perfect’ to be valuable, you can learn from everyone.

Currently, grandparent support groups are rare. Grandparents who are struggling with the emotions that come with having a special grandchild, might, however, look into starting their own support group. You can do this by contacting a local hospital to see if other grandparents share your feelings and would like to form a group. Support groups are often extremely beneficial for special grandparents. It gives them a place to share their ideas and emotions with peers who have been there.


Judith Lavin, M.S.W., author of Special Kids Need Special Parents, and a former journalist with the Chicago Sun-Times, recognized the need for an easy-to-read resource for physically and emotionally exhausted parents like herself, as well as their families, teachers, doctors and others who work with them. Lavin speaks to numerous organizations and parent groups around the nation, giving them inspiration and hope.

Lavin’s work has been featured in numerous publications such as the Chicago Tribune, the Chicago Sun-Times, Newsday, Washington Parent and Chicago Parent. In addition, she has appeared  on radio and TV news and talk shows around the U.S., including NBC-TV's Today show, PBS-TV's Small Talk for Parents and the CBS Radio Networks. You can visit Judy at