7

RESPONSIBILITY AND CAREGIVING

“I just wanted to be a kid and not have all those responsibilities.”

—MEAGAN

GROWING UP FAST

Siblings of children with special needs are usually expected to grow up faster than their peers. While parents have to focus so much attention on the child with special needs, many siblings learn to look after themselves. In addition, they may be expected to put considerable time into caring for their brother or sister. If this is kept in balance, there can be long-term benefits for the child, in terms of feeling valued and useful, and for the whole family. Too much responsibility, however, can interfere with normal social development and the establishment of independence. Some siblings feel the weight of the responsibility long before they are ready. They may become “Mommy’s little helper” or “Daddy’s right-hand man.” In sole-parent families this can become especially significant. Also, if a child with special needs makes no progress, a child who has been actively involved in the care may start to feel some responsibility for that.

Tara felt the ongoing pressures.

Adults always told me I was so mature for my age, so good to be spending time with my brother and helping my mother. I hated those comments so much. I just wanted to be a child.

As an older and only able sibling, I developed an extraordinary sense of responsibility for family and friends. I limit my friends, as I can’t cope with the “obligation” I feel if the number of people close to me is too large.

I have learned that as a child I internalized the need always to be okay, to be self-reliant and never need or accept help. It is a difficult lesson to unlearn, and the repercussions as an adult—social and emotional isolation—are devastating.

A child’s reactions may change over time. Nance started to feel differently as she approached her teens.

When I was very small, until perhaps eight or nine, I remember seeing myself as my brother’s little protector and being praised by every one of my parents’ friends for being such a good girl looking after my brother. Then as I approached my teens, I remember feeling overwhelmed by what I then saw as a burden. I did not have a brother I could play softball with, confide in, or have what I saw as the “normal” relationship all my friends had with their siblings.

It can be particularly difficult for siblings to develop true independence. Meagan was very aware that all her friends had more freedom. She felt isolated and different when she missed out on social activities with peers, but felt that she couldn’t complain.

I looked after my brother after school and in the holidays. All the other kids would talk about what they had done in the holidays, like go to movies. They could earn pocket money but I couldn’t, and they had the time and freedom to do things. I had friends at school, but I felt alienated from them.

I’d say I needed help, but Mom was too stressed and I didn’t want to upset her, so I just dealt with it. Everyone says to me that they thought I was coping really well—but I wasn’t. I just wanted to be a kid and not have all those responsibilities.

Many siblings look back and feel that they missed out on being young and having fun. The normal concerns of adolescence, such as fashion, music, and the opposite sex, can seem trivial compared with the sometimes fragile life of a child with special needs. A sibling can feel out of tune with peers, which can lead to further isolation.

The child with special needs can be a direct barrier to social interaction. Fran, whose brother has Down’s syndrome, just wanted to be able to share girl talk with her friend, but the responsibility for her brother was always there and interfered constantly with her social development.

When I went to see my friend up the road, I’d be told to take my brother with me. We would want to chat about boys and pop stars, but I’d have to take him with me.

Missi resented the time she needed to put into her sister’s care. As a result she was particularly eager to find some independence.

I always felt like I did a lot of my sister’s caretaking when I got older. My parents wanted to be able to go out and be with each other, so they would leave me with her so that I could feed her and take care of her until bedtime. I think I just always felt like her mother. I had to make so many sacrifices for my family. I had to quit activities I enjoyed so much so they would be happy—and I hated it! I couldn’t wait to leave home. I still have the same problem of being the caregiver for all my friends and not taking it from them in return.

Lily, nine, talks of her caring role with her older brother with autism.

He’s always awake at night. Sometimes he comes into my room and wants to play; he jumps on my bed. I wake up and try to scream at him quietly so he doesn’t wake up Mommy. And then I take him back to bed and tuck him in and tell him to shut up and not wake up again. Sometimes I feel bad when I yell at him.

Tim, sixteen, adds:

We are lucky as a family to have my brother in respite four nights a week so we can function more normally then. When he is here, he needs constant supervision. I am in my final year of school, and the nights when my brother is around I can’t do any schoolwork—everything needs to be focused on him. It can be tiring and frustrating. Wherever we go I constantly have to watch and worry about what he is doing.

There has been a move in recent years to “mainstream” children with disabilities into so-called normal schools. In many respects this makes sense, not only for the child with a disability but for society as a whole. However, there needs to be some thought given to the effect on brothers or sisters. Susan talks of the need to protect her sister, who has Down’s syndrome, while they were going to the same school, and her feelings when that changed.

I started at the same school as my sister. I always fought her fights in the playground. It was such a relief to me when my parents moved her to a special school and I felt free. I feel guilty saying that, but it was like a weight being lifted off my shoulders.

When a Sibling Is the Younger Child

Younger children may find it even more difficult caring for a brother or sister who is older and bigger. Normally older children will care for younger ones in this situation, but for younger siblings the situation is different. They may experience guilt for being more competent than their older sibling, and this can lead to ambivalence about surpassing the child with special needs.

Gina was younger than her sister, who is deaf.

Though chronologically my sister was older, in terms of responsibility I was the oldest because she couldn’t communicate verbally. We were very much on a par in terms of maturity.

We communicated very well because I was her voice. She and I signed. Very few of the rest of the family signed, so I was her link with everyone else in the family. This was a big responsibility for me. Everyone said, “Gina is such a good child.” I was always the good one. This was the expectation of me and this is what I tried to be. There was embarrassment but there was real responsibility.

My parents’ expectation was that I would be good, be helpful. I would be the one who would be my sister’s parent if they were not there. I was the parent and yet I was younger. And yet I was reminded constantly that I was “just the kid.” She was older and she would take precedence in so many instances, and yet I knew that I was the one who had the hard slog, who was the responsible one. I had to look after her and yet she took precedence.

People would say something to her—she was taller than me—and she would look at them and then at me, and I would say, “She’s deaf; I’ll tell you what she wants.”

From a very young age I would do that and people would be quite impressed. They would say, “Look at this little kid, she’s looking after her sister.” And I would think, “Yeah, I am too!” But it was difficult. I tried to think positively or I would have been very angry.

FINDING THE POSITIVES

“My brother has been the most influential person in my life and continues to be each day . . . all I have to do is think about him and I am able to smile.”

—JOSIE

Providing care for a brother or sister can bring many positives. If their own needs are met, if they believe that they are special too and that their feelings are important, siblings have much to gain by being actively involved with a brother or sister with special needs. If the caregiving is kept in balance and is valued by the family—rather than taken for granted—caring for a brother or sister can add to a sibling’s self-esteem and sense of accomplishment. Families may become closer as they share the challenges and celebrate the successes of the family together. Siblings may feel tremendous pride in the achievements of their brother or sister. They can gain enormous satisfaction from being involved in helping their brother or sister, or teaching him or her new skills.

If not overdone, such responsibility can lead to an improvement in how the children interact and play together. There may be a bonding that would not occur without the caregiving. Josie talks of bonding with her younger brother.

I truly think that taking care of my brother helped me better understand my parents and my brother. And I connected with him and bonded with him in a way that I never would have, had I not had the responsibility of watching him. Now I am the only person that he lets hang all over him and hug him for long amounts of time. We take car rides, and only with me does he sit up front. With my parents he sits in the back because he grabs the steering wheel or gear shift, but with me he just sits in the seat and smiles and rocks back and forth to the loud music that my parents probably don’t play.

As well as caregiving, many siblings attribute their positive feelings to the attitudes of their parents. Josie says her parents understood that she needed some privacy and needed to express all her feelings. She adds:

I would say my favorite thing in the world that my brother has given me is a true understanding of the words unconditional love. He has also taught me to be compassionate, less judgmental, an advocate for him and others. And he has taught me to appreciate the small things in life.

At twenty-four, Mark has two older brothers, Sam, who is able, and Dean, who has cerebral palsy. Mark, also, believes his positive attitude toward his brother largely stems from his mother and father.

We three boys were always treated equally. Dean did get a little more attention, but we understood that. Dean was always included in all family outings, and he always got along with everyone. Mom and Dad let us live our lives as “normal” as possible. Sam and I played tennis from a very early age and went through all the different stages of Scouts, basically did all the things we wanted to do even though we had a disabled brother. I still went out with friends and did all the teenage things. It made us realize that if we all worked together we could still do everything.

I don’t feel embarrassed. Instead, I feel proud of him. Maybe I see things differently because I have a disabled brother, but often I sit back and think how lucky I am. For several years I helped out with Dean’s disabled Scout group and enjoyed every bit of it. I also like to help Mom and Dad with looking after Dean. Recently I looked after him for a weekend so they could have a short holiday.

I will always be a big part of Dean’s life and wouldn’t change a thing, as it has made me a much better person.

Some parents, in good faith, avoid giving their other children any extra caregiving role. This can deprive them of opportunities to feel useful. The key is to achieve a balance between a child’s feeling that he or she has an important role to play and being overburdened with responsibility. Many siblings find enormous inspiration through watching their brother or sister’s struggles and achievements. One famous example is athlete Cathy Freeman, whose older sister was born with cerebral palsy. Other factors obviously played a role in her enormous athletic success. As a child, however, when asked why she liked athletics, Cathy would reply: “I have a sister, Anne Marie, who has cerebral palsy, and my mother told me that I had two good arms and two good legs, so use them.” (Australian, September 26, 2000)

Siblings of people with disabilities often grow up to be more compassionate, caring, and tolerant of differences. They often have maturity beyond their years and an outlook on life that makes them acutely aware of their blessings. They recognize which are the important issues and which are not. Together with the pride they may feel, they often have protective feelings toward their brother or sister with special needs. Josie says:

I love my brother like I love no other, a protective and concerned love. I’m usually such a laid-back person, but if anyone tried to hurt my brother, I would be a totally different kind of person. There’s a passion about him that is unexplainable and truly brings out this other side of me—an overprotective, overbearing, angry big sister.

This can carry over to a broader consciousness of others’ needs and many siblings go on to be advocates not only for their brother or sister but for people with disabilities in general. Some people with disabilities are unable to speak for themselves, and siblings are often in a good position to take on that role.

Missi feels she can be a more supportive friend through her experiences as a sibling.

I do think that it has made me more compassionate and understanding. I have always been the one that my friends come to when they need to talk or they need a shoulder to cry on, so that is a good thing that has come of this.

Siblings tend to be more conscious of others’ feelings. They talk of being supersensitive to jokes about disability and jibes about “retards” and the like. Often, they are careful not to make fun of others, knowing too well how that feels. Tim says:

My brother’s special needs make me reflect quite a lot on what kind of person I would be if he weren’t around, especially when kids use terms like spastic to put people down. I wonder if I would be like them and not know anything about the problems faced by families in this situation.

This can follow through to other generations. For my own children, having an aunt with special needs adds a dimension to their lives that is hard to measure. They, too, seem more sensitive to the feelings of others, especially those who are picked on or who are less fortunate than themselves.

SUMMARY

KEY STRATEGIES TO DEAL WITH THESE ISSUES