Spina Bifida Family Support
"Families Helping Families"
By Patrick Kilcarr, Ph.D
October 2001
As a father of six boys, two with AD/HD, I have learned that each of my sons is decidedly unique and different in temperament and personality. This realization has helped my wife and me as we assist them in understanding and appreciating differences.
The Many Faces of a Disability
The power of a disability in the life of a family is often determined by 1. the emotional and physical symptoms of the disability or disabilities; and, 2. the parents' perceptions of the disability and how it relates to the overall functioning of the family. Two key questions include: are the family's interactions controlled by the disorder or is the disability just one aspect of the broader family unit? Allowing a disability to control the roles and relationships within a family creates unnecessary strain for all involved. Family members, especially children, see their ability to adapt to the symptoms in a specifically defined manner. For example, Jeremy, an astute and serious minded ten-year-old, always knew that if his 14-year-old sister, who has both AD/HD and bipolar disorder acted out before they were going out, his parents would punish everyone by not going. There was never any discussion or compromise toward a more equitable resolution--everything was immediately canceled. By the very nature of her disabilities, Jeremy's sister would frequently cause problems that resulted in a family punishment. His parents tried to work with their daughter on her tantrums, but ultimately decided that this was the best way to handle them. This method sent out a clear message to the boys that they had better not act out in any way.
What is most striking about this family is that two highly competent parents abdicated sound problem solving strategies because they felt imprisoned by their daughter's symptoms. They "tried" various methods to improve tense situations and reduce abusive symptoms; however, nothing seemed to work. Implementing strategies haphazardly may not work, but working consistently to utilize specific strategies over time will. Many families involved in the daily struggles of living with a disabled child can forget that repetitive efforts are necessary to achieve long-term success. They lay the building blocks for their child's future.
Parents enter into therapy and invest huge personal, emotional and financial resources toward making their child better. Defining "better" is an essential part of establishing the parents' goals for all of their children, not just the child with the disability. Within the first two sessions, I begin working with the parents and family to help them outline their expectations with respect to their child's disability or behavior. It is a remarkable unmasking when parents and children begin to understand one another's needs and begin working together to achieve both individual and family potential. This process involves each family member, including the parents, the child with the disability, and his or her siblings. In any particular family, each person can assume responsibility for their capabilities and join their resources to provide a "team" responsibility. By working as a team, a family in the midst of adversity will individually and collectively find their strength. The symptoms associated with a child's disability can often leave siblings feeling a range of very difficult and confusing emotions. Eight-year-old Perry, who has a ten-year-old brother with Down Syndrome and an explosive temper, quietly talked about how hard it was to invite friends over when his brother Derrick was around. Derrick would make strange noises, hug Perry's friends and constantly disrupt them. Perry felt his friends looked at Derrick as weird or different, so he stopped asking them to come over. For his mother, it was helpful because there was just one less thing to worry about.
The problem, however, is that kids go back and forth to each other's homes in a dance of reciprocity, but eventually kids stopped coming around or inviting Perry to play. As each day passed, Perry became more and more isolated. He enjoyed going to school every day because it became the place where he would see other kids he knew. However, Perry was "responsible" for seeing that Derrick got home safely and had tasks to do after school. "I feel real guilty, but I don't like to be around Derrick all the time. He is annoying and it's not fun." Once his parents began to see the impact of Derrick's needs on Perry, they devised a plan that would free up time for friends to come over without Derrick intruding and limited Perry's daily responsibility of caring for Derrick.
Children know that they are in some ways better off than their siblings who have a disability. What they don't know is how to navigate the emotional terrain surrounding all of those feelings: guilt that they don't like their sibling, hatred for their sibling for physically acting out toward them, loneliness regarding establishing and holding friends that their sibling cannot, and overall sadness about the entire situation. Opening up and maintaining clear and fresh lines of communication about the feelings attached to this issue are important.
However, human nature dictates that the more stressed we become, the less open to emotional exploration and problem solving we are. We retract under what are seemingly intractable situations. It is the power of the "family," not the individuals, that makes coping possible. The mere process of sharing feelings is profound for many families. Discussion between family members begins to shine a light into areas that children and parents previously believed were off limits. It demystifies the power of the disability, while simultaneously enhancing everyone's ability to change.
A Child's Need for Safety
Parents must determine the safety issues associated with any particular disability, and openly discuss the disability and all of its aspects. What does it mean for Alex to have oppositional defiant disorder? What should the family expect to occur with the disability? And, what are the safety issues surrounding this disability? This entails having an in-depth knowledge of the features of the disability and providing safety for both the child with the disability and his or her sibling (s).
Recently, I met a family whose oldest child, a nine-year-old boy, was diagnosed with AD/HD. He had a pattern of scratching and hurting his younger brother who was seven. The seven-year-old had noticeable scars on his face from his brother. Both parents described becoming very upset when their older son would hurt his brother, and began to discipline him by spanking him. Certain measures were taken to reduce the severity of the child's abuse toward his younger brother. His nails had to be clipped weekly to help with the scratching. Next, a sound plan of action had to be put into place so that if either of the boys touched or kicked the other without asking, there would be a consequence for the responsible party. Until now, the focus had primarily been on the oldest son's behavior. However, the younger sibling would frequently aggravate his brother until he blew up. After developing a sound "safety" plan, the parents had to establish and implement a set response that they would consistently use to deal with their sons' aggressive behavior.
There are times when parents provide the safest environment for their children without disabilities, only to be continually threatened by the inappropriate behavior of the child with the disability. This requires a very intense intervention, which may result in removing the child from the home for the safety of others. While this is an extreme response, it becomes necessary for some families. Children should never have to fear for their safety or well being within the walls of their own home.
Family Roles and Responsibilities
Personal responsibility involves the child's role in the family as a team member. All children need to have very specific roles and levels of accountability. Our two-year-old knows to always throw trash in the trash can. He knows because we expect it and reinforce it. Roles and accountability shift and move up the sibling ladder in an age appropriate and developmentally appropriate manner. My two oldest boys have AD/HD, and they struggle with issues of follow-through, attentiveness, impulsiveness, etc. These are issues they must confront daily. My wife and I employ a system that gently plays to their strengths, while recognizing the areas they need to work on. Given their ages, 12 and 14, we use respectful and motivating charting systems that we develop with them to avoid encroaching on their personal growth. Our sons are actively involved in every area of the family operation and are responsible for the outcomes and their behaviors. My oldest son's diagnosis at the age of five was quite grim. Now, he is an honor roll student and exceptional athlete. His success is due to his desire to achieve, and our expectations for him to be a proud and important role model for his younger brothers.
Problems with aggressive or mean spirited behavior result in specific consequences that are clear and were agreed upon by everyone in a family meeting. We also use Tom Phelan's behavior management principles, which leave a great deal of personal choice up to the boys. This system works in any family that is willing to redefine the power of the disability and begin interacting and expressing it in healthier ways.
The Pivotal Role
Parents make decisive choices regarding how the siblings of a child with a disability both perceive the strength of the disability and determine their level of responsibility for their sibling's care, either emotional or physical. I frequently hear parents of children with disabilities lament that they are just exhausted. Having to juggle a career in conjunction with the special needs of a child can leave parents stressed and looking to their other children to pick-up the slack and "pitch in" with child care responsibilities. However, the responsibilities of pitching in must be clearly defined, and the greatest gift a parent can offer their child without a disability is to have regular and meaningful discussions about the extent of the child's responsibility for his or her sibling. I often hear in my clinical practice that siblings really aren't sure what their roles are in the family. For some families, the depth of the disability is so profound, that even talking about it is hard- especially when discussed in a "family council" type setting. Disabilities have a tendency to quiet the important emotional issues occurring within a family.
Living in a family where a child has a disability means living life with a degree of uncertainty. A child without a disability can- not always predict nor control what his or her sibling does. However, a child can control and rely upon his or her responses to very specific anticipated behavior. What should a child do if his or her sibling rages, doesn't follow-through on something important or becomes embarrassing? I recommend that families practice role-playing with all of their children regarding these issues and even have the child without the disability play the role to see how the child with the disability reacts or acts. This exercise is quite powerful and can be practiced at home during family council. Breaking out of the old relegated patterns of interaction is critical in a family where there is a child with a disability. Parents are gatekeepers who can allow this to happen.
What Parents Can Do
You must believe that change is possible for it to begin to occur. Here are some things that you can do.
Further Thoughts
Living in a family with a child with a disability means constantly moving toward approximating the norms of society-norms in terms of developing predictable responses and implementing conflict resolution strategies that encourage rather then diminish the esteem of the individual and the family. As someone once said, "I have seen normal and wasn't impressed." It has been my experience that families who enter into dealing with the issues around disability as a positive adventure for all, ultimately function far better than those families who have not known adversity. I have seen this with individuals who must live with a disability. They are required to work on themselves in ways others are not. Because of this, there is a profound inner knowledge and often an empathy that is humbling.
Watching seven-and eight-year-olds advocate for themselves, be heard and counted goes a long way in fostering lasting positive regard for self and for others. Seeing children learn how to positively express their feelings, even the tough ones, makes the world of emotion an easily navigable terri- tory. When the family works as a team, the possibilities are limitless.
Dr. Kilcarr is currently the Director of the Center for Personal Development at Georgetown University in Washington D.C. He has co-authored a book with Dr. Patricia Quinn entitled, Voices From Fatherhood: Fathers, Sons and AD/HD. He maintains a private practice in Washington D.C., and is the father of six boys, two of whom have AD/HD.
References
Featherstone, H. (1980). A difference in the family: Life with a disabled child. New York: Basic Books, Inc. To order by phone, call (805) 683-9633 or (800) 333-6867.
The Sibling Information Network- A J. Pappanikou Center, 62 Washington St., Middletown, CT 06475. (203) 244-7500. Siblings for Significant Change. 105 East 22nd St. New York, NY 10010. (212) 420-0430.