Dr. Tiegerman Speaks

Families of children with disabilities experience unique problems that extend from one generation to the next.  Within the typical family, parents distribute their time between themselves and across their children in a fairly equitable manner.  But when there is a child with a disability, everyone within the family focuses a disproportionate amount of time away from themselves and away from each other to meet the needs of this specific child.  The imbalance within the family often creates a great deal of stress and tension, particularly for siblings who initially may not understand their parents’ behaviors and actions.  Siblings of children with disabilities may be ignored given the extraordinary needs of a child with a disability.  Typical children may experience ambivalent feelings towards their sibling, their parents and themselves.  They may also feel guilty as they grow older about their negative responses towards their parents and their family situation.  It is very difficult to understand as a young child why your parents do not have time and/or patience when they appear to have an unlimited amount of both for another child.  As the typical sibling grows older and becomes aware of why his parents have been so stressed, angry and/or frustrated, a sensitivity develops that goes beyond his years.  There are also greater expectations for typical children to grow up quickly, become independent and ultimately become responsible for the life-long care of the child with a disability.  Many siblings of children with disabilities are faced with the reality that they have not had either the same family life or childhood as their peers.  They have grown up in complex families in which the search to find appropriate social, educational and medical services becomes a “mission.”  The pressures within the family are unusually high and feelings follow the progress and development of the child with a disability.  Events at home may be chaotic and noisy when children with disabilities have behavioral problems and/or unusual sleep patterns.  In fact, most siblings of children with disabilities grow up and take on the responsibilities of their parents to manage the social, medical and financial decisions that an adult with a disability cannot make on his own.  Many parents are frightened and overwhelmed by the possibility of child as well as adult abuse in residential and institutional settings.  Parents ask, “What will happen when I’m not here?  Who will take care of and protect my child’s interests?”  Most typical children eventually commit to the care of a disabled sibling with love and understanding after watching their parents’ daily struggles.  Some siblings struggle with the difficulties of being an adult child and may be resentful about the loss of their own childhood.  As a result, it is important to provide family based services which include the siblings of children with disabilities.  Typical children need to learn to accept not only their own feelings but their family differences because the responsibility of caretaker is a life-long commitment.  It is important to include typical children in counseling and therapeutic services so that they can be part of the family’s decision-making process.  Their voices need to be heard and their feelings need to be factored into the family mix.  By empowering typical children, emotional growth about the family process is facilitated.  In an effort to keep families together, clinical and educational programs should work with community organizations to develop siblings’ groups.  Families today are faced with extraordinary social, emotional and financial pressures.  To create a family balance, every member of the family must be acknowledged as a participant and a contributor.  Typical children who assume the responsibilities of a sibling with a disability are a credit to their parents and a blessing to their families.