Raising the Perfectly Imperfect Child

by Boris Vujicic

  That comment got our attention. We had a little talk with Michelle to give her a fresh perspective on all the challenges her older brother had to deal with because of his disability. Yet we also had to concede that maybe Nick shouldn’t be held to a different standard than his siblings when it came to chores.

  He’d proven himself capable of holding a fishing rod, swinging a bat, and chipping and putting with golf clubs by holding them between his chin and shoulder. We figured he could swing the vacuum cleaner too. It was a built-in system, so the burden wasn’t all that great. Nick wasn’t thrilled when we added his name to the household duty roster, but he quickly accepted it and pitched in.

  From that point forward, we cut Nick no slack. He was expected to make his bed and keep his room clean just like his siblings. You might think this was asking too much, or at least you may be wondering, How does someone with no limbs make the bed? Nick actually took this as a challenge and figured out how to do it. I won’t say the neatness of his bed would have passed inspection by a US Marine sergeant, but he actually did a decent job.

  SPORTING CHANCES

  Dushka and I spent a lot of time encouraging Nick, cheering him on when he accomplished tasks, and tending to his medical needs and his schooling. There were challenges to overcome in many areas of his life. We were always aware, however, that Aaron and Michelle also needed to be focused upon—if not equally, at least as much as possible. We didn’t want them to feel neglected or less loved than Nick.

  There is a delicate balance to parenting children in any family, of course. When there is a disabled child in the mix, the need to give each child adequate attention becomes a larger challenge. There was no way around the fact that we had to spend more time tending to Nick’s medical needs, his education, and his daily care. We compensated for this as best we could by trying to focus on Aaron and Michelle at every opportunity and by encouraging Nick to do the same.

  We had to be careful in our approach to equal treatment, especially when we encouraged our two youngest children to participate in activities that Nick simply wasn’t capable of doing. We didn’t want Nick to feel left out or sad because he couldn’t join them, yet we wanted to cheer on the others. When Aaron was about nine, we felt it would be good for him to get involved in sporting activities. We signed him up for the local kids’ soccer club. We wanted him to compete with other boys and make friends outside the family so that he formed his own identity and social circles.

  At the same time, we knew that seeing his little brother play soccer and make his own friends might cause Nick to feel sad or left out. Nick wasn’t usually inclined to self-pity, but he did love soccer and often said he wished he could run on the field with the other boys. When Nick was younger and close to their size, he was pretty hard to beat when playing soccer in our living room with Aaron and their cousins. In that small space, Nick didn’t have to move around all that much and his left foot could be a potent weapon for short-range goals. He is also fairly amazing with headshots, and not just in soccer.

  There is at least one thrilling video on YouTube that captures Nick putting a basketball into the net with a headshot—and he insists he had to try only a couple of times before he made it. He managed to do this while standing atop a desk in front of an entire gymnasium of people (www.youtube.com/​watch?v=v08l3_sebeA).

  As it turned out, Nick was a good sport about his brother playing on the local soccer club. Dushka and I knew it wasn’t easy for him to stand on the sidelines, and our hearts ached for him, but Nick was very gracious in cheering on Aaron, encouraging him, and, of course, offering big brother’s coaching tips.

  Sadly, children with disabilities do reach a point when they run up against limitations that separate them from other kids. As a parent you want to stay positive. You encourage your children to do the best they can. You want them to dare to rise above expectations. Yet the fact remains that despite his enthusiasm for athletics, he could not compete in sports on the same level as other children. He has a competitive nature, so that was tough for him to accept and not easy for his parents to watch.

  Nick handled it well enough. He did not mope around or feel sorry for himself. He went to the matches and supported Aaron, cheering him on when his little brother did well and won trophies and awards. Dushka and I thought it was a very healthy thing for our other kids to have their time in the limelight too.

  DISABILITY BY ASSOCIATION

  Social workers, therapists, and psychologists told us in the early days that siblings respond in both positive and negative ways to a brother or sister who is disabled, chronically ill, or has special needs. Some become protective and supportive. Others feel anxiety and even concern that they might contract the disability or illness one day. As they grow older, siblings can experience stress if they worry that they will become responsible for the disabled family member later in life.

  Guidelines for parents of disabled children typically say that siblings age five and under don’t usually understand the nature of the family member’s disabilities, but they are aware of some difference and often will try to assist their sibling. Siblings six to twelve years old are more likely to understand disabilities, but they may worry they are contagious, feel guilty about any negative thoughts toward the disabled sibling, and have conflicting feelings and attitudes ranging from overly affectionate to resentful.

  Teenagers generally are better at grasping the complexities of a disabled sibling’s condition. They also may ask provocative and probing questions, and it is not unusual for them to feel insecure and embarrassed in front of their friends because of the disabled sibling. Often teens, who have a tendency to be self-absorbed and independent minded, can resent having any responsibilities for a disabled sibling. Yet teens also can feel strongly connected to and empathetic toward disabled siblings.

  Those are just general guidelines, of course. Dushka and I always advise parents not to take anything for granted by expecting the other kids to simply “deal with” the sibling who has special needs. Friends and schoolmates can easily disrupt the relationships among your children by taunting, bullying, or shunning them because of the disabled child in the family.

  Again, communication is critical. The more time you spend with your children, listening to them and asking them about their lives and their feelings, the better equipped you will be to help them build loving and supportive bonds.

  Before Aaron and Michelle began their school years, they lived in a bubble of sorts. Despite Nick’s obvious physical disability and the challenges that came with it, we had a fairly normal existence. Dushka and I did our best to give all our kids the attention and love they needed. Nick deserves credit too because he generally did not demand to be the focal point, and he was usually quite an active, engaging, and loving brother. As I’ve noted before, we were also blessed to have a large extended family of aunts, uncles, and cousins who provided a cocoon of normalcy through their love, support, and acceptance.

  As Aaron and Michelle left that family cocoon and entered their school years, we worried about them being vulnerable or stigmatized as Nick’s brother and sister. He was small, but Nick’s shadow was considerable. Nick became one of the first disabled students to be mainstreamed in Australia’s school system, and he became the poster child for that groundbreaking movement. The media sought him out and interviewed him often. He handled it very well, as you might imagine.

  By the time Aaron and Michelle entered school, their telegenic brother was a national celebrity in Australia. Both teachers and schoolmates saw them as “Nick’s brother” and “Nick’s sister.” This had both positive and negative implications for them.

  Kids can be intentionally cruel, and there was some of that, but more often the hurtful comments were just kids being kids. It was bad enough that Nick had to put up with indiscrete questions about his methods for using the bathroom or whether he had all the essential reproductive organs. His brother and sister were sometimes asked by classmates to report on these same matters
on behalf of their older brother.

  Kids with special-needs siblings are often subjected to teasing, taunts, bullying, and social isolation. This is so common that psychologists and sociologists have a name for it—disability by association.

  There have been many studies and reports on this. Some of the typical remarks aimed at siblings include the following: “Are you going to end up like your brother someday?” “Why don’t you have what your brother has?” “Aren’t you embarrassed to have a brother like that?” “Your family is weird!”

  Fortunately our children experienced very little of that sort of thing as far as I know. Other parents have shared that their disabled child’s siblings aren’t invited to social gatherings or find that friends are reluctant to come to their homes because of the child with special needs.

  One of the goals of mainstreaming is to reduce stigmas and prejudices by allowing other kids to get to know their disabled classmates as individuals. I believe this worked to a large degree for our children, and I’m certain that in the years since Nick was in school, overall attitudes toward the disabled have improved dramatically.

  I knew Aaron and Michelle were proud of Nick, yet they weren’t all that happy to be constantly referred to as Nick’s brother or Nick’s sister, which is understandable. What I did not know until recently was that Michelle went through a period when she feared being ostracized because of her oldest brother. She was entering those socially tumultuous teen years when this occurred.

  At the time Michelle was afraid other girls would shun her or think she was strange because she had a brother without limbs. She also worried that boys wouldn’t want to date her because of Nick. Social workers say this is very typical for siblings at that age. Most young people in their teen years suffer from rampant insecurities and an overpowering need to fit in and be accepted. Michelle may have had her fears, but she kept her concerns about being Nick’s sister to herself. I don’t recall any major blowups or breakdowns. She was a pretty popular kid with many friends, male and female.

  A few years later in an interview, she was quite open about Nick’s positive impact on her life. “Being his sister made me realize that kids with a disability are no different from anyone else. I don’t even see their disability. I just go straight to their heart and soul. It is there that I find pure love and joy and, most of all, a human being.”

  THE UPSIDE FOR SIBLINGS

  While there are some common challenges in growing up with a special-needs sibling, there are benefits to be derived as well. The literature on this usually cites potential sibling benefits such as a more mature outlook than age-group peers; more empathy and a greater willingness to help others less fortunate; stronger coping and problem-solving skills; greater gratitude for things most people take for granted; more patience; enhanced teamwork skills; and a more open heart toward those with disabilities, chronic illness, and special needs.

  I’d have to say that both Aaron and Michelle have experienced most of those benefits after growing up with Nick. Those of us who have lived with him through the good times and bad have been affected in many positive ways.

  There is some debate among sociologists who study the impact of a disabled child on siblings when it comes to their career choices. For a long time, I’d heard it said that a higher than normal percentage of people with disabled siblings went into careers in health care, teaching special education, and social work. Recently I’ve read that has been called into question, but our family has one example.

  Michelle obtained her nursing degree and, after working as an emergency room nurse for three years, she served on several missions to give medical care to people without easy access to it. One of her most remarkable experiences came at the age of twenty-three when she volunteered to spend three months as a nurse aboard the world’s largest private hospital ship, the Africa Mercy, anchored off the West African nation of Togo. She had learned about the floating hospital from Nick, who had visited it while on a speaking tour in Africa.

  You have to be committed to volunteer to serve in the Mercy’s hospital because they require that you pay your own room and board during your stay. Michelle sold her car and used her savings to pay her way because she was longing to do work that helped her grow and made a difference in the world for people in need.

  Dushka’s career as a nurse and midwife certainly had some influence on Michelle’s pursuit of a nursing degree too. Our daughter has a giving nature, and she sometimes gives too much, so I was glad when she took a break to earn a degree in music production, which is her other passion—one she shares with Nick.

  Now that all three of our children are adults, I think it’s safe to say that our efforts to nurture them all equally and to make sure they all felt loved and supported were successful. There is no resentment from Aaron and Michelle toward their brother for all the attention he received. I know this because in 2015 both Michelle and Aaron moved to California to work with their brother and to support him in his Life Without Limbs nonprofit and his Attitude Is Altitude business. One of the greatest rewards of our lives is having all our children together, watching them talk and laugh, celebrate each other’s successes, and support each other as adults.

  • Your child’s siblings can be best friends and allies or resentful rivals for your affections and attention, so it is very important to take every opportunity early on to give them as much of your love and time as possible so they don’t feel left out.

  • Siblings may feel resentment if the disabled child is not disciplined or assigned chores or is otherwise given a pass on things for which the siblings are held accountable. So whenever possible, it is best to allow the disabled child no special treatment.

  • It’s important to educate your other children about the causes, nature, and impact of their sibling’s disabilities. They need to fully understand that they are not at risk of “catching” the disability and that the disabled child may not be able to do all they can do but that he or she still needs and desires their love and support. Teenage siblings can have complex and contradictory feelings about a disabled brother or sister during those years when being accepted and fitting in socially becomes so important. Be aware of this and do your best to help keep their family bonds strong.

  • Try not to saddle siblings with responsibilities for the disabled child. It puts too much pressure on them and may stir up resentment.

  • Talk to the siblings about what they can learn from having a special-needs brother or sister and what they can tell their friends about him or her.

  When we first attempted to enroll Nick in private school, we must have missed a sign on the door of the principal’s office:

  No Arms.

  No Legs.

  No Admittance.

  And that was a private Christian school!

  We had already experienced some discriminatory behavior and even shunning of our son and were recommended to Yooralla, a special school for the disabled. However, we were determined to mainstream Nick and got him accepted and enrolled in Albanvale Kindergarten. The goal of kindergarten was to prepare him for entering elementary school, when he would be moving outside the protective cocoon of our family.

  There was a risk in that, certainly, and we quickly discovered there were individuals and institutions that did not open their arms to our disabled son. The other kids in the kindergarten generally were fine with Nick because they hadn’t formed prejudices against the disabled. Unfortunately, some of their mothers were not so open minded. Dushka tried to convince them that having Nick in the group would not cause the arms and legs of all the other children to fall off.

  Nick’s kindergarten experience was good. It was a half-day program, and the teacher was quite accepting and accommodating. Things changed dramatically, however, when it came time to enroll Nick in primary school. Most parents simply go to a neighborhood private or public school and enroll their children with no questions asked. Whenever we tried to enroll Nick, we hit a wall as soon as we mentioned that he ha
d a physical disability.

  Since we are Christians and very focused on the church community, our first inclination was to enroll Nick in a private Christian school. We felt he would get more personal attention in a smaller school. Most were more expensive than public schools, but thanks to Nick’s aunts and uncles, we had the funds to pay for his tuition and expenses. They had created an education fund for him shortly after birth.

  We made the mistake of thinking that private Christian schools would be more tolerant and accepting—Dushka and I were lifelong Christians, after all. Yet once we explained to administrators that Nick was not the typical student, they declined to accept him as a student. Nick’s disabilities were a major concern for the principals, teaching staff, students, and parents we met with. They regarded Nick as an unwanted burden who would tax their limited resources. These are some of the objections we encountered:

  • We don’t have wheelchair-accessible classrooms.

  • We don’t have funding for the teachers’ assistants he would require.

  • How would he write? Draw? Cut with scissors?

  • What about his personal hygiene?

  • We don’t have wheelchair-accessible bathrooms or anyone who could help him use them.

  • How would he feed himself in the cafeteria?

  • How could we guarantee his safety on the playground?

  • We’re afraid he’d make the other kids uncomfortable.

  It was probably just as well. Nick was growing up in a Christian family, and most of our friends were Christian, so putting him in a Christian school might have limited his range of experience and his social connections. We certainly didn’t want him to grow up isolated from the rest of the world.