The sibling of a child with special needs tends to grow up being a bit more loyal, understanding and accepting of others and a bit more mature than other kids. Much is expected of these siblings within the family, and they tend to rise to the occasion. But who is looking out for their needs while their brothers or sisters are requiring so much attention and care?
At a workshop in Boston this spring entitled “No Sibling Left Behind,” panelists with the Massachusetts Sibling Support Network, prompted by questions from workshop participants, shared these recommendations for helping siblings cope with their unique experiences:
• Acknowledge the siblings’ complex lives and conflicting feelings. Validate their experiences of living in a home with a child with special needs. Use age-appropriate language. Make sure siblings know they do not have to assume the role of caregiver.
• Assure siblings they are not responsible for their brother or sister’s lot in life. Encourage them to have their own experiences.
• Spend one-on-one time with them. This doesn’t have to be expensive; it can just be a simple activity like baking or taking a walk together.
• Communicate positive feelings for them and the difficult role they play in the home. Write a loving letter, for example.
• Stress that there’s no “right” or “wrong” type of family.
• Stay aware of your own attitudes about a disability, as your children will most likely mirror those attitudes.
• Connect with other families going through similar issues.
• Seek individual and/or family therapy.
• Find a sibling support group.
• Develop a plan with kids to help them determine what statements are OK to be shared with neighbors, family and friends, and what things are private. Siblings shouldn’t have to harbor secrets. There’s a difference, though, between secrecy and the family’s right to privacy.
• Inform teachers and others at school of your family’s situation so that they can better understand the sibling’s experience.
• If a sibling is embarrassed by a brother or sister’s behavior (and perhaps reluctant to invite friends to the home), remind kids that everyone in every family has something to work on.
Parents might want to create a plan (which may be a written document) to define the sibling’s role in the family. When they get older, some siblings will have to make crucial and very difficult decisions about guardianship. Growing up with a brother or sister with disabilities also prompts the way siblings will look at important life decisions, such as where to go to college and whether to have children (if there’s a genetic component). Throughout their lives, they will need to examine how to balance their personal lives with their role as siblings. As they do this, they will benefit from the support and encouragement of parents and other caring adults.