For parents, the first thoughts that come to mind when you learn your child has a disability are for that child—what about health, lifespan, quality of life? Quickly following these questions are thoughts about how this will impact the rest of the family: What does it mean for our other children? What does it mean for their lives? Also at the outset, my husband and I were concerned about how having a child with disabilities would impact our older son. How would he accept his brother? How would he tell his friends? What would it mean to our family?
For us, and for many other families, having a member with a disability means a richer, fuller, sometimes more challenging life; but for many, that richness is something you learn as you go. More information for families and siblings, more advice, and more support would all make the journey easier to navigate. Hopefully, most siblings would get to the same point as did our son, Jim: “When you ask me who in the world has had the biggest impact on my life, the answer is my brother, Will. From him, I have learned patience, and also what is really important.”
We often joke that we have our own personal laboratory for exploring sibling issues in our home with Jim (18 years old), Will (16), and Cate (15). Will has Down syndrome. What does being the older brother of a sibling with Down syndrome mean? What is the impact of being a sister to an older brother with Down syndrome?
In some respects, our children are having the same experiences as other siblings. There are times that having an older brother or sister to look out for you is pure joy. There are other times when being an only child sounds wonderful. Yet listening to my own children, I know that having a brother with Down syndrome has deepened their relationships. It is not easy to still be a child yourself and have to defend your brother because others have called him “retarded.”
Research, intervention, information, and programs are all critical to our family. We have found that there are many books and other sources of information and advice about dealing with a child who has a disability. There is not nearly as much information about dealing with siblings and the issues they will face. Things are beginning to change, but there are still few places for siblings to turn for advice, information, and support. Noteworthy among these programs is Don Meyer's Sibling Support Project.
We know that people with disabilities and their siblings are living longer lives, and in many cases now, these family members with disabilities will outlive their parents—something that was not true even 50 years ago. By 2030, the number of older people living with disabilities is expected to triple. In our own family, chances are good that our son will outlive us. That possibility is something that has been discussed in our home for several years now. How do we ensure that we help Will make plans? How do we help our other children, so that we set the best course possible? Why is it that in some families, siblings remain close across the lifespan, whereas in others, the family members are estranged?
Open the Lines of Communication
One of the things we decided early on in our own family was that we would try to have open communication about Will's disability. We attempted to achieve such open communication with our own parents, our friends, and our older son. We never hid the fact that Will had Down syndrome, and as Jim got older and asked more questions, we tried to answer them as best we could. Jim first met Will a few days after his birth, when Jim was 2½. We had been concerned that seeing Will in the special care nursery hooked up to many machines and tubes would frighten his very young brother. On the contrary, our doctors advised us that Jim would accept seeing Will much better than we had; and so began the special bond that exists today between our sons.
The way the stage is set early on can have a tremendous bearing on the life led by the person with the disability and his or her siblings. The number of people who continue to ask us whether we have told our own son he has Down syndrome and if we have told his brother and sister about his disability amazes me. Sharing this information in an open and responsive way is something we consider key. How the other children are told about their sibling's disability can be crucial in their important developing relationships.
One key our family has found is that it is very important to openly discuss these questions—even though it may not always be entirely comfortable. To me, it has always been like talking with your children about sex. You can be sure they are going to hear other information from friends, at school, and on the Internet. It best comes from parents.
The best communication will also depend on the type of disability. Dealing with a disability such as Down syndrome can be very different for a family than dealing with autism. Knowing the best approaches in these very different circumstances could be tremendously helpful for parents and siblings.
Dealing With Schools and the Community
Being accepting of a sibling in the privacy and comfort of your own home is one thing. Being accepting at school and out in the community can be quite another. We have been careful to look for and plan activities in which all three of our children can participate. Will's siblings are always the first to let us know when he is not being treated fairly or respected by other children in the group. We have watched these relationships in everything from youth soccer, to Boy Scouts, to our church choir. In Scouts, Jim and Will belonged to the same troop. In choir, Cate and Will were in the youth choir together. Cate had to endure the time her brother decided to be the “human pretzel” on talent night.
During these formative years, a whole expanded set of questions appears. Is their sibling with a disability in the same school? What happens when the family attends their church or other faith setting? Is there a place for the sibling with the disability? What about the adolescent years? What happens when brothers and sisters begin working, driving, going on out of town trips? What happens to the sibling with the disability? Many schools and community organizations are developing programs to support people with disabilities. Just as important can be supporting their siblings and family members. Far too often, that may be overlooked.
Expectations of Siblings
Any parent will tell you that siblings very closely watch their parents' expectations of their brothers and sisters. What are the expectations and how are they distributed? Every parent knows that favorite phrase, “It's not fair, and you didn't make him do it.” This family dynamic can be magnified when you have a family member with disabilities. Something as simple as how chores are handled can have enormous impact. We have tried to always have chores for each of our children—and I would match Will's towel-folding skills against anyone's. It is important that he have these expectations. The whole area of expectations can be challenging. We have heard about homes where the girls are expected to provide the care for their siblings. We have known other families that do not have many expectations for their child with a disability. All of these approaches can have an enormous impact on the lives of all the siblings. At the same time, parents and friends need to be watchful and supportive of siblings who feel they have to be the “perfect child” to make up for all that their sibling may or may not be able to accomplish.
I will never forget one young girl who told me she could not tell her mother about a particular problem she was having at school. “My mom's already dealing with enough with my brother,” said the young girl, who had an older brother with autism. “I can't tell her about my problems.”
Needs of Siblings
We are lucky that early on, our other children participated in Sibshops, the support groups developed by Don Meyer. They were begun in our community by a pediatrician who got involved after she saw that in too many cases, the other children in the family were overlooked; it was almost as if they were on autopilot.
Our children enjoyed having that time in the early years to share with other siblings facing some of the same issues. They came away knowing they were not alone. Far more research and study is needed in this area to help answer questions like the following: What changes about a sibling's life because they have a sibling with a disability and what does not change? Is a sibling really a changed and better person because of being a sibling? Do more siblings really go into a service profession?
In his Sibnet Project, Don Meyer facilitated a discussion on SibNet and some of their themes:
The right to one's own life: the basic right of siblings to their own lives
Acknowledging siblings' concerns: a wide array of often ambivalent emotions
Opportunities to meet peers
Opportunities to obtain information
Sibs' concerns about the future
What Does the Future Hold?
Even in the early years, the question that looms for many families is “What happens when our parents are gone?” It is been interesting in our own home to hear our children's different responses as they have aged. When all three were young, they had the perfect solution. They would buy the house next door, and all three would live there.
All three have their own ideas about their adult years, but Will's future has always been the topic of discussion by Cate and Jim. Are we expected to take care of Will? And on, and on, and on. Questions for many siblings remain: What happens when our parents are no longer around? Who is going to be responsible? What if I really do not want that? We have the opportunity to work with a wonderful group of siblings who are really among the first to see their siblings living longer, fuller lives out of institutions and in the community. Through research and programs, they can offer us important answers concerning how we support siblings and families in the future. After all, they have lived the role as sisters, as brothers, and as life-long supporters to people with disabilities. From them, there is much to learn.
My own daughter, Cate, recently wrote about her brother's actions at a dance competition.
I had gotten a sixth place. I was trying not to burst into tears. “Did you do your best?” Will asked. “Then I will always love you,” he said. The lesson I learned from Will that day will stay with me forever.
Another younger sister of an older brother with disabilities said:
Sometimes I wonder what it would be like to have a regular brother. I think a regular brother would be more selfish and stubborn. My brother is not. I would not trade him. I would not want to change anything about him.
Author: Elise McMillan, JD, Director of Community Outreach, Vanderbilt Kennedy Center for Research on Human Development, Peabody #40, 230 Appleton Place, Nashville, TN 37203. email@example.com