The healthy siblings of disabled or sick children are often "the forgotten ones" as understandably pre-occupied parents devote their attention to the child whose needs seem most pressing. Author Christine Frisbee lets these siblings tell their own stories in Day By Day, Children tell their journeys of faith and determination living with a sick sister or brother
What can parents do to make the sibling who is not disabled feel that he or she deserves time and attention?
Although it is easy to think that everyone in the family is adjusted to having a sick child in the family, often the siblings are quietly coping. The reason they are quiet is because they do not want to make the issues worse or make their parents feel more overwhelmed than they sometimes can.
Therefore the best thing to do is to talk about the sibling's feelings and make sure that they know you, as a parent, have their best interests at stake too. Spend separate time with the children who are not disabled and tell them you appreciate their patience and help every day. Explain that just because you need to give so much attention to the disabled child does not mean that you care about them any less, but that you admire and respect their help and love.
Is "Survivor Guilt" a problem?
It is a fact that survivor guilt is a big problem in families. Children are very happy that they are not the one to have the disability or serious illness, but with that said, they also feel very guilty that they are the one who continues with a more normal life. Neither child understands why illness came to one of them and not the other.
Do the siblings sometimes act out to get more attention? Do they wish they were sick or disabled?
It is extremely common for siblings to act out when they have a sick sister or brother. They sometimes do not realize how much they are misbehaving. Often they know they are acting out and continue because they are angry about the misbalance of attention within the family. When they see their sick sibling getting more attention they wonder if it is worth it to have something happen to them so they get more attention, compassion and gifts from friends and relatives who want the sick child to feel better.
Are there indicators that siblings of disabled or sick children are more compassionate or patient?
It is extremely common for siblings of disabled or sick children to be very compassionate because of the sympathy that they have for anyone who must lead a less healthy life. There is one common thread throughout the interviews and stories that we did over years of work that showed the love and compassion for everyone, especially their sibling. Many of the children expressed interest in going into the professional field to make a difference in the lives of others.
What have some of the younger children said about this experience? What about older children and teens?
Younger children tend to focus on the fact that they love their sick sibling and no matter what they are going to try to be positive and pray that their sister or brother will get well. They are scared but positive. The older teens are particularly protective and sympathetic towards their sibling. They want to make it all better but know that they must make the most of a difficult situation and be whatever support they can to the sibling and their parents.
Are there support groups for healthy siblings?
Throughout the country there are support groups for siblings called SibShops. These were started by Don Meyer who has written books on the subject. They are a wonderful support system for siblings. Many hospitals offer their own groups too. We have set up a networking site www.forgetusnot.ning.com for siblings to talk to each other. We hope this will be a good resource for all siblings to interact and know they are not alone.
What kind of resources are there for parents to help them understand the needs of the healthy siblings? Or for Caregivers?
The reason I wrote Day By Day, Children tell their journeys of faith and determination living with a sick sister or brother is because I felt there was little out there that gave these children a chance to tell their stories. There are books that offer advice to parents written by adults, but little out there that can be used to help children by children. Some other books that can be
• What About Me? Growing up with a developmentally sibling by Bryna Seigel and Stuart Silverstein
• The Sibling Slam Book, What its really like to have a brother or sister with special needs by Don Meyer and David Gallagher
• Parenting Your Complex Child by Peggy Lou Morgan
What are the most important things for parents to know about the kind of support the healthy siblings need? How do we keep them from getting "forgotten"?
The most significant things that parents need to know about supporting healthy siblings is that their lives are changed forever, whether or not the sick sibling gets well. The sisters and brothers will have their most informative years changed by the emphasis and energy within the family that is very different from their peers. The children need to have their parents, teachers and caregivers acknowledge their importance in the family. Parents must reach out in a very significant way and let them know they are special and loved. Siblings must have their own special time with the parents so that they feel they are getting an equal amount of parenting and love.
What can parents do to help healthy siblings maintain good relationships with disabled or sick siblings? Are there age-appropriate materials to help them understand the challenges their sibling is facing?
Communication, communication, communication. Parents should be open and discuss what is happening with the sick or disabled sibling with the healthy siblings. Children are naturally compassionate and will reach out to the sick or disabled sibling to help nurture them. This in turn will bring the siblings closer together. Parents need to make each situation as normal as possible. Children crave normality and they want their lives to be like their peers.
Talk to the teachers at school to let them know that the siblings need support and guidance. Teachers must realize that there is much pressure on children when someone in the family is disabled or sick.
Faith can help heal situations within families. If the parents have belief in a religion they should reach out to their church for support. Words of the power of God and be a wonderful comfort to families.
There are age-appropriate materials within individual organizations. One of the most prolific groups is the Autistic Society. They have many materials to help families. We have started a website for networking. Other helpful sites are Sibling Support, Daily Strength, Kids Health, Family Voices, Kids Aid and Kids Together
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I worked with multiply handicapped kids for about a year and a half. In that time I learned that the siblings of the kids I worked with were not only some of the strongest people I have ever met, they could come the closest to defining what "normal" meant. The other thing they had a firm grasp of was what "loving" meant even more than their parents. They went through all the developmental struggles not only fo themselves, but for their "delayed" sibling. Even the most rebelious and spiteful (I never knew one to be truly hateful) could not turn away from their sibling, though their expectations of their parents were not usually well met. Most often they were the ones who offered ther greatest and most beneficial support to their "delayed" siblings (this means they did not bend to every wish or accept any brow-beating or manipulation)
Though I am no longer working in this field (and it was many years ago), I may look for this to catch up in an area where i thought I most fully experienced what it means to be loving, powerless, and accepting.
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