Siblings Are Forever- A Look into the Impact Developmental Disabilities have on the Sibling Bond
Brothers and Sisters of people with developmental disabilities share how their siblings impact their lives in a feature from the Summer 2011 Making a Difference
Siblings Are Forever By Becca Bauer
Siblings are our playmates, enemies, motivators, supporters, listeners, personal comedians and teachers of all the sneaky little tricks we learn like how to steal an extra cookie at dessert time. Brothers and sisters seem to master the art of pushing each other’s buttons in ways like no one else, but through it all they are the ones who know your personal story from the beginning. It is no surprise that the unique and complex sibling bond can evolve into one of the longest lasting relationships of your life.
In the United States there are more than six million people with disabilities. Many have brothers or sisters. These siblings share the same relationships that typical brothers and sisters do. While a disability can alter the family dynamics and lead to greater pressure for all family members, the results are not necessarily negative. The relationship between siblings can be powerfully affected by a disability.
There is still a wide range of perspectives on how much a disability in the family impacts the lives of siblings. According to Cheryl A. Rhodes, M.S., co-author of Brothers and Sisters: A Special Part of Exceptional Families, Third Edition and fellow of the Centers for Disease Control (CDC), the children in the family without a disability often share similar experiences as their parents and face the same challenging issues.
“The sibling without a disability sometimes really worries about their brother or sister and they can take on a lot of the worry from their parents as well. They might feel more pressure not to add stress to their parents, but they often have the same feelings of expectations, uncertainty and worry,” says Rhodes. She suggests one way to reduce this is for parents to simply give their typical developing child a chance to express their feelings and most of the time they will open up.
A family’s time can become consumed by everything from numerous hours spent at the hospital, making adjustments to household needs or determining where you can or can’t go as a family. There are a number of variables that can shape a sibling’s bond, but it is very individualistic.
How a disability affects the relationship between brothers and sisters varies from person to person; nevertheless, there are some common issues they will address at some point in their relationship. These may include siblings possibly having to deal with feeling excluded or not as important as their sibling, having to take on more responsibilities, teasing or bullying from peers, guilt and more. Despite these challenges, most siblings with a brother or sister who has a disability confront these tests head on and share an unbreakable bond.
There is a great mix of emotions that can arise growing up with a sibling who has a disability, from shame and resentment to understanding and inspiration. For this reason, it is not uncommon to see siblings gravitate towards the helping professions or specifically work with advocate groups applying their personal knowledge on developmental disabilities. “I think siblings have been instrumental in supporting advocacy efforts…they serve an important role because as they take on advocacy jobs to make sure their sibling can lead a dignified life, they are impacting the whole community,” says Rhodes.
Because people in general are living longer lives, addressing the future is becoming an increasingly important subject. Adult siblings of people with developmental disabilities are the most likely people to be involved as parents age and can no longer provide support for their child with disabilities. Rhodes believes it is important to start making plans for the future early and include all of the family members. “Whether it is setting up a trust or making decisions about that what it going to happen, it’s on everybody’s mind and the sooner they can make those plans and include the siblings the better, because one way or another it’s going to affect them too.”
It is up to each individual how they address the future and their relationship with their sibling, but it is not uncommon for them to share a different kind of closeness. A disability can influence life decisions for the whole family, and children who have siblings with a disability often become some of the most well-adjusted, compassionate and understanding people.
Twins Anna Watson and Ashley Freeman are sitting on the couch watching a teeny-bopper film and flipping through magazines admiring the cute boys. They are at the height of sisterly bonding, indulging in some serious girl guilty pleasure. It would never cross your mind that Ashley has a developmental disability. After going into premature labor with Anna, unbeknownst to Claudia and Leigh Freeman and the doctors, two minutes later they welcomed Anna’s twin sister, Ashley. Six months later Ashley was diagnosed with cerebral palsy. For Anna, it was scary having to watch her twin go through so many surgeries, but she says, “we were always chasing each other and even though she does not communicate verbally, we still share a normal sister relationship and healthy competition.”
Growing up, Ashley was known as more outgoing and Anna a little more introverted, and although they went to different schools, they were still very much involved in each other’s life. Spending summers at the pool, anxiously waiting for Santa on Christmas and hanging out at the house with friends are just a few of their childhood and teen memories. It was not until middle school that Anna started having problems with people using unkind words about disabilities. She found it difficult when people would feel sorry for her because Ashley has a disability. “My philosophy is that it is something I’m better for. She is very happy and we are happy to have her,” she says. She understands that it is hard for people who aren’t use to it, but it doesn’t have to be awkward. Despite these feelings, Anna remembers her friends were all accepting and happy to include Ashley. Anna is especially grateful that one of her best friends became like a member of the family and treated Ashley like her own sister. She remains a great friend to both Anna and Ashley.
According to Claudia Freeman, “to this very day Anna is completely devoted to her. I think many of Ashley’s successes result from having Anna as a sister.” As an adult, Anna continues to be involved in Ashley’s life and the developmental disability community. She spends time often with Ashley, is a committee board member at her sister’s community center and works at GCDD as a planning and policy specialist. They are both there for each other in daily life and the big moments. Anna supported Ashley as she competed and won a gold medal in swimming at the Special Olympics, and Ashley was there by Anna’s side at her wedding participating in all of the bridesmaid fun.
Currently, Anna and the whole family are working towards getting Ashley more active in the community and securing more supports for her. As for Anna, there is no doubt in her mind about the future. She and her husband would openly welcome sharing their home with Ashley if she ever needs to live with them one day. Ashley is Anna’s sister and that’s the way it is going to be.
Will and Claire Crain share a similar sibling bond. Passing the time playing in the family room, as any young girl without a sister would do, Claire has roped her brother into playing dress-up and becoming her personal “doll.” Again, with this normal situation of a sister torturing her little brother you would never guess that Will, now a 15-year-old, has a developmental disability. Four days after being born Will was diagnosed with a genetic disorder ureacycle and underwent several traumas to his brain. Even for Claire, now 18, her brother’s disability did not register until she was older. She says, “When I was in sixth grade that’s when I really understood. When you are younger you don’t realize. We did so many things that normal brothers and sisters do…I didn’t know he had a disability and that he wasn’t like all of us.”
Claire is very involved and often helps her parents care for her brother. Will dresses and bathes himself and is in the process of learning independent living skills, but Claire still helps with his homework and around the house. Sometimes when her parents are away she takes on a lot of responsibility and acts as a mini-mom, cooking, cleaning, doing laundry and getting everything in order. Although she takes on a lot, it doesn’t mean that they don’t share some of the household responsibilities. Will has his own chores and takes out the trash, unloads the dishwasher and cleans his room.
Today the pair is still close and loves to play cards, spend time with the family, go to the movies, and cheer each other on at sporting events. Claire is very active in tennis, and created a special needs tennis camp last year that Will plans to attend this summer. Additionally, Will does not let his disability hold him back from participating in team sports. On his kayaking and canoeing team, Will is the only member who has a disability. Recently the team participated in the Junior Olympics Canoe and Kayak Regatta in Will’s hometown of Gainesville, GA, and they came away with the gold medal.
Sometimes it is a balancing act to make sure nobody in the family feels left out. When you have a child who has a disability their needs get pushed to the front of the table, and Scott Crain, Claire and Will’s father, acknowledges that there have probably been times in Claire’s life that she has experienced these feelings. He says, “we are parents and there have to be discussions. We have tried to confront that with piano lessons, tennis and spending a lot of time with her and her activities.”
The Crain’s are confronting the uncharted future by setting up trust funds and starting to put things in place to maximize Will’s independence as he grows older. It is a topic they consider to be a family decision. Not only do they plan to put Will’s wants and needs first, but they make it clear that Claire understands that she doesn’t need to take 100% responsibility of Will’s future. It will be her choice if she wants to have Will live with her one day.
Arjun and Angad Sahgal are joking and kicking around the soccer ball, like typical brothers--getting dirty and playing outside. Arjun doesn’t dwell on the fact that Angad has Down syndrome. Their mother, Aarti Sahgal, still remembers explaining what this meant to her oldest son Arjun, now 17. “We did not try and hide anything from him and explained to Arjun that Angad had an extra chromosome and would be a little different from other kids.” One day out of the blue, she remembers Arjun asking her about if that extra chromosome meant Angad was extra fast and extra special, and that is when she realized just how much he had thought about his brother’s disability.
To this day, Arjun still thinks about the extra chromosome and all that it means. According to Aarti, growing up Arjun was “like a little surrogate parent in many ways. He knew he could set an example and Angad thought of him as a role model, always saying ‘Arjun wouldn’t do this and I should do what he does’.” So to set an example, Arjun spends a lot of time playing soccer, basketball or video games with Angad. He even indulges his little brother and includes him in hanging out with his friends when they are at the house. Sometimes they even bring him along to the movies, something not many older siblings would relish doing.
One of the ways Aarti acknowledges Angad’s disability has really impacted Arjun’s life, is that he is more responsible and focused than many young people his age. She attributes this partly to her struggle to find a balance at giving equal attention to both boys, but also because Arjun reacted strongly to people who were mean to Angad or just didn’t understand his disability.
As a way to confront his issues with bullying, he started a club at his high school focusing on inclusion. His aim was to make people who stand out feel comfortable and still be able to participate in school activities. Aarti describes his advocacy as “his way to come to terms with his brother’s differences because in the past it made him angry.”
Not only does Arjun help fight to change people’s views in regards to differences, he also helps his parents around the house and cares for Angad. Arjun “is never ashamed or shy. He is very proud and realizes what Angad’s strengths are,” says Aarti.
The stories of Anna and Ashley, Will and Claire and Arjun and Angad can teach us a great deal and shed light on just a few ways that sibling relationships are impacted by a disability. Their stories are part education and part hope. At one time or another, all families experience challenges, whether it is the loss of a parent's job, a divorce or caring for a child with special needs. Yes, having a brother or sister with a disability can alter life for siblings, but it can also bring great gifts as well -- helping siblings learn patience, kindness, empathy, the importance of speaking up for others like Arjun did, Claire’s joy in seeing a loved one succeed on whatever level they can, and sometimes even influence a choice in career like Anna.
For better or worse all siblings are tied together for life, but through its ups and downs, it is nice to always have someone there by you along for the ride.