4

GETTING A FAIR CHANCE

“My life was always made to suit his needs. Never the other way around. It’s such a complex thing for a child to grasp.”

—RENEE

SIBLINGS CAN GROW UP WITH A REAL SENSE OF unfairness. Life seems to revolve around the child with special needs. Family activities are disrupted. A sibling may not be able to spend time alone with his or her parents. The child with a disability has a greater need for care and attention but is also often allowed to behave in ways that the sibling is not. Siblings can feel that they are not as important, especially when their achievements attract less fuss than those of the child with a disability. Resentment can develop, possibly leading to a child’s adopting disruptive behaviors or becoming withdrawn.

WHAT ABOUT ME?

Young children have difficulty understanding why a brother or sister with special needs is showered with attention. To adults, it is a practical necessity. To young siblings, attention is linked to love, and it is easy for them to think that their brother or sister with a disability is more important.

Nine-year-old Jordan, when referring to his parents and sister with special needs, says:

They like her better than me and always will. They buy her things all the time but not me. All they ever worry about is her.

As one father explained, “The other children often feel that the child with the disability is more special. My daughter was really happy when she had to have her tonsils out (until she had them out!), and it was because she was special.”

Nine-year-old Lily, who has an older brother with autism, says:

He gets lots of attention. Sometimes in the middle of dinner he needs to go to the toilet or my parents will need to do something else with him. And I’m just sitting at the table waiting for my dessert and I just have to wait until they’re finished. It can be ages.

And they buy him lots of new toys to stop him spitting and it’s not fair.

I must have been conscious of attention at an early age. Apparently, when I was quite small I would sometimes refuse to dress myself, even though I was quite capable of doing so. Having watched my mother dress my sister, I would say, “You dress her, you can dress me!”

My sister seemed to get so much more of my mother’s time. She was washed, dressed, fed, put to bed, and if she cried, she usually got what she wanted. She would be collected in a big special bus to be taken to her special school. I resented the fact that she got so much attention. I desperately wanted the same.

However, when I did get attention, it was almost too much for me to handle. I felt guilty because I believed that Helen needed it more than I and that really I shouldn’t be getting it after all. Seeking attention and then getting it became all jumbled up in a range of emotions that I did not understand. I learned that to seek attention was somehow bad. I still struggle with that.

When the Needs of Others Come First

Many adult siblings say they grew up feeling abandoned or neglected. In many cases, even the most loving of parents are so stretched by caring for the child with special needs that there is little left for anyone else. Siblings often feel that their needs are put on the back burner; they feel invisible and uncared for. Parents may be going through their own trauma and be unavailable to able siblings.

Stuart Silverstein is a pediatrician in the United States. His younger brother, Marc, has autism. Together with Bryna Siegel, a developmental psychologist, he wrote What About Me? Growing Up with a Developmentally Disabled Sibling. In this book, he talks about attention issues.

I was four when the severity of his [my brother’s] condition was unfolding. At this crucial juncture, when I needed my parents for my own growth and development, they were drowning emotionally while the severity of Marc’s condition was becoming apparent. . . . There was little, if any, room left over for me and my problems. I was an emotional orphan.

Rachel talks of the need to take care of herself.

I had a happy childhood overall; my parents did their best, but at some level I felt neglected. My parents couldn’t help it. I was such a relief to them because I could take care of myself. And they let me look after myself more and more. I used reading a lot to escape. I’m glad I didn’t look to drugs and alcohol as an escape.

When my counselor initially suggested I was “neglected” as a child, I was so appalled. How could anyone think that of my parents? Especially knowing what my parents had gone through raising two disabled daughters and then me. But hearing that opinion from someone I trusted, and who was objective, did get me thinking, and I have realized that it is true to some extent . . . maybe not in the traditional sense, but neglect just the same.

One sibling’s mother said, “I’m glad you’re normal so you can take care of yourself.” Some siblings say they felt they were not allowed ever to have problems and so were left to deal with their issues alone. Not wanting to bother parents who have enough to deal with is a common theme.

Missi, now in her early twenties and with an older sister who is totally dependent on others for her care, became self-reliant.

When I was a kid I would be playing outside all day, and when I got hurt or had my feelings hurt, I felt like I couldn’t go to my parents. They had so much work to do with my sister as it was. I took care of myself.

Later in life it may be difficult for siblings to accept help from others because they have been so self-sufficient. They may be available to help everyone else but can’t allow others to care for them. Some siblings say they can stick up for others but don’t feel that they themselves deserve the same. When needs are negated throughout childhood, it is easy for children to start to trivialize their own needs, and this can continue into adulthood.

Missi continues:

I have a lot of trouble showing emotion. I don’t cry, I don’t get upset. I don’t always feel normal either. I feel like I am too nice and people walk all over me. I always seem to put other people first and think of myself as lesser, which isn’t healthy, but I do it anyway.

Renee, too, felt that her needs always came second and that she was never as important as her brother.

Because muscular dystrophy is progressive, my brother could still walk until he was seven. When he started school, my parents wanted him to go to a school that was closer and so I had to change schools to the one he went to. It made sense, but it became in my mind an example to me of how my life was always made to suit his needs.

Fran, whose younger brother has Down’s syndrome, says:

Everyone knew me as Geoffrey’s sister. No one said, “Oh, you’re Fran, you’ve got pretty blond hair.” It was all about him. I was always a bit of a nobody.

Lenore says:

I feel such frustration with my parents’ attitude that my disabled sibling must be considered at all costs. It affected their health and contributed to my mother’s premature death. My whole life until age eighteen was forcibly constrained around “Don’t upset your brother,” “Don’t argue,” “He can’t help it.” He regularly broke my belongings and tried to kill me, and my parents let him do it, let him rule the house and rule my life and all our lives because they were afraid and guilty and compassionate and I don’t know what else.

Often more fuss is made of the achievements of the child with special needs. Siblings can begin to doubt their own worth, to feel that they are “not quite good enough.” Gina certainly felt the differences.

I always knew that my parents cared a lot for me, but in so many ways they gave the message that my sister was superior in her claims upon their attention. It was so easy to think, “Well, what’s wrong with me if they care to give so much attention to her—there’s something wrong here.”

Putting others’ needs first can lead to unhealthy relationships, as Nance explains.

I realize now that being the “giver” and “peacemaker” in the family has affected my relationships with the opposite sex. I look back now on many of the relationships I’ve had with boys and realize that I was too willing to take on the giving, nurturing role, to a degree where I was taken advantage of. I had grown up in an environment where, despite my parents’ trying to do their best for my brother without limiting me, all the family decisions were based on whether he could cope and what he wanted. Many times I remember we had to cancel family get-togethers because my brother threw a tantrum. There was no way to reason with him when he became like that. The pattern of putting another person before yourself all the time became ingrained. I gave too much of myself to boyfriends and was too willing to acquiesce to their sometimes ridiculous demands. I thought that was what you did in life. I now realize that my brother’s needs are exceptional, and I have a different set of limitations for the other people in my life. But this took a long time to learn.

Tara also now understands the effects of suppressed emotions on her relationships with others.

At twenty-eight I have just realized that I do not know how to relate to others unless I can identify something that they need from me. My own needs are hidden even from myself and occasionally brought to the surface through anger. I wonder what it is to cry.

A Lack of Time with Parents

Some activities may not be possible for families that include a child with a disability. Vacations, going out to dinner, or other entertainment might be too difficult. As Julie says:

We didn’t do much as a family in the way of vacations and other activities, though I didn’t feel at the time that I missed out on anything. Now that I have my own family, I realize the restrictions that affected us then.

Josh, who is eleven and has a younger sister with special needs, says:

I wish I could do things with Mom and Dad but I can’t—I could before she was born.

Lenore says:

I downplayed anything I did well that might require parental attendance, because my brother would have to be taken along, and he would invariably throw an autistic/ psychotic tantrum and have to be removed. As a result, I didn’t ask my parents to attend when I was in choral performances or theater or the like, or just said that I understood that they couldn’t come because of my brother.

Simultaneously, siblings may long to spend time with their parents. Tara yearned to be with her mother.

There were times at night when I would listen to my mother read to my brother in the next room. I would hear the machinery helping him to breathe and tense at every break in the rhythm. I was not allowed to go into his room at those times. I suppose Mom thought she was protecting me. In reality I would curl into a small ball and cry endlessly, wishing myself far away, wishing for Mom to read to me, wishing for a time where I could be special and hugged and wanted around.

“Single” siblings often experience the strange combination of feeling like an only child but missing out on the attention that an only child often receives. At the same time they often feel compelled to take on a “second mother” role to their sibling.

The Relationship with the Primary Caregiver

An important part of child development involves early attachment to a significant adult. This enables a child to develop a strong sense of self and to be able, as time goes on, to form healthy relationships with others.

Sometimes these processes can be disrupted when a child in the family has special needs. An able child may have had a secure attachment to his mother, but with the subsequent birth of a child with special needs, he may suffer a sense of abandonment as his mother devotes much time and energy to the new child. (The primary caregiver is usually the mother but could just as easily be a father or other adult.)

If the able child is born after the child with special needs, the mother may still be dealing with issues of loss, and this can affect the relationship with the able child. One mother, who had two daughters with intellectual disabilities and then went on to have another daughter, spoke in later years to her able daughter. She confided how low her self-esteem had been after having her first two children. She went on to say, “You were the perfect baby, you responded to me just like you should; I had to protect myself from loving you too much.”

A mother’s preoccupation with the child with special needs, combined with her own mixed feelings (guilt, sorrow, anger) about what is happening in her life, may lead to her not being able to give her able child what she needs to develop a sense of security. Without that, a child is likely to develop a range of fears and anxieties.

Part of a child’s developing security involves feeling that she can rely on a primary caregiver to be there for her. Children can usually “test the water” and take risks—by misbehaving, yelling at their mother, telling her in anger that they hate her—knowing that the relationship is strong enough to withstand them. In a family with a child with a disability, a sibling may feel less important and feel that the relationship with her mother is not strong enough to risk such behavior.

A secure child will know that a mother, for example, can handle these threats, that she is strong enough to deal with such behavior. A mother of a child with special needs may appear more fragile to an able child. She may be depressed or stressed from the day-to-day caregiving required for a child with special needs.

Some siblings say they never rebelled or tested the limits during their adolescence, again protecting parents from further distress.

The Attractions of a Disability

To a child, the idea of disability actually holds some attractions. The child with a disability seems to get special treatment, and not only within the family. Gina expressed it in the following way:

People would come to visit and they would say, “I brought a present for your sister because she’s deaf. You understand don’t you?” I would smile and nod and say yes. But I resented it. And I can remember the look on my mother’s face and the words she used when one day I said quite definitely, “I wish I was deaf.” She quietly said, “You don’t,” but I did. Right then and there I wanted to be deaf because if you were deaf, people gave you so much, and when there were six kids, there wasn’t a lot to go around.

There were so many things she had that I couldn’t have but wanted. I understood that she had to have those things—well, sort of. I would have loved to have had a snug dressing gown to put on in the mornings to keep me warm, but I didn’t have one. She had to have one though, because she was deaf. In reality, she needed one to take to boarding school, where she went during the week, but the message I was given was that she had to have a gown because she’s deaf. I really wanted the things she had.

At Christmastime she would get the slightly better presents. One Christmas we received dolls, and she had the one with the opening and closing, beautiful, glassy blue eyes, and I had a solid old thing whose arms and legs wouldn’t move. All these little things meant such a lot to a child of six or seven. I felt the pain so often and thought, “It’s not fair.”

Years later, as an adult, I realized that I no longer resented her and hadn’t done so for a long time. I realized that my life was so much better—how could I have resented her? But as a child the understanding is not there.

Renee’s brother was confined to a wheelchair.

There was a certain amount of attraction about the wheelchair. I remember going to a football match once with my family, and strangers would come up to my brother in his wheelchair and give him lollipops or money. I’d look sideways and think, “Well, why aren’t I getting those?” There was a certain appeal because he got all the attention.

The one relative I really loved as a child was my maternal grandfather. When he visited, at some stage he would always take me aside quietly and give me a pound note, which was a large amount in those days. He’d say, “It’s just for you; don’t tell anybody.” And it was the only example I can think of where someone selected me for no apparent reason at all.

I was a fairly quiet, shy child, but the attention seeking was there in almost every aspect of my life—in the home and in relation to outsiders and relatives. I wanted something I couldn’t have, because I wasn’t special in any way.

Again, the sibling can experience inner conflict as she strives to let people know that she isn’t like her brother while at the same time perhaps wanting to be like her brother to ensure some special attention.

“Acting Out” to Gain Attention

Some children will misbehave in order to attract attention. Victoria reflects that she would get into trouble regularly so that her parents would notice her.

As a child either I would attempt to fade into the background and take care of myself or, when the need for parenting was overwhelming, I would attract negative attention. As I heard a psychologist say, “Children would rather be praised than punished, but they would rather be punished than ignored.” So I would act out.

It can be difficult for parents, under stress themselves, to understand that such negative behavior is a result of the stresses the child is experiencing. Of course, not all children act out. Some manifest other behaviors that may also be signs of distress.

Being Perfect to Gain Attention

Many siblings talk of an internal pressure to succeed as a way of attracting attention. Renee felt the push to get good grades.

In reality there is no energy left for the other child, so much is needed for the disabled one. I learned fairly early on that the only way to get attention was to have good grades at school. The only thing I ever got attention for was the good report card that was brought home. So you put a whole lot of energy into that. That’s what my parents saw and what I got praised for. In every other aspect of life they were directing their energies elsewhere.

Tara adds:

I got positive attention from my mother when I did excel—academically or in a public forum. But so much of my mother’s attention was focused on my brother that even when I did achieve high grades, or received dancing or academic awards, I never felt good enough.

For some siblings the urgent need to succeed may derive from an attempt to compensate their parents for their sibling with a disability, who won’t necessarily achieve the same feats. They see the pain in their parents and want to make them proud. They may be conscious of how lucky they are and feel that they must make the most of the abilities they have. Many siblings feel that they never quite meet the expectations of their parents or extended family and many struggle with the fear of letting people down or disappointing them. There is a danger that such a child will feel unworthy without constant success. But even when successful, these siblings often still feel unworthy.

As Nance says:

I felt a huge responsibility to my parents, even more than to myself, to be successful at whatever I did, so they could have a child they could feel proud of. Not that they weren’t proud of my brother, but I knew that being the only “normal” child, to a degree all their hopes and dreams for both their children were somehow sitting on my shoulders. I realize all too much that I am the only child who will be able to provide them with the joy of grandchildren.

Tara still struggles with the pressures.

I danced from the age of four and was always expected to be the best. When I was injured in my early teens, I felt so guilty that I competed anyway and now have lifelong chronic pain in my back and knees; I just couldn’t let my mother down. As a young adult I had to achieve academically. I remember telling my father I wanted to work in retail, and his words were “I am so disappointed that you would give up your dreams of study and high achievement.” Needless to say, I returned to university and am now completing postgraduate work. I have so internalized the need to achieve and be the best I can be for my family that I feel jealous of my brother’s achievements. Perhaps that is because my achievements are met with comments about the “next step,” while his are met with joy at the individual achievement’s merit. I often feel I can never be good enough, never achieve enough, never make up for my family’s pain. Sadly, I am still trying at twenty-eight.

The pressure may come from parents who openly push their other children to succeed in ways the child with a disability cannot. Some parents don’t exert pressure but gain pleasure from seeing their child’s successes, in spite of the family difficulties. On the other hand, some parents try to discourage their other children, perhaps through a fear that their achievements will show up the more minor successes of the child with a disability. Or they may want their other children to keep their aspirations low because of their own disappointments. Victoria felt that her parents actually discouraged her.

I felt that my parents did not see me as an intelligent young woman but rather as one who should keep her expectations and aspirations low. I assume that I was being discouraged primarily because they were so disappointed with my brother’s condition that they never wanted to be disappointed again, nor did they want me to suffer disappointment as great as theirs.

IT’S NOT FAIR!

Siblings often see the child with a disability getting away with inappropriate behavior and not being held responsible for anything. On the other hand, the sibling is made to behave and often has to take on extra responsibilities, such as helping the parents care for the child with special needs. As an adult it is easy to understand why this is so, but as a child it may not make sense.

It is difficult for parents to treat their able and disabled children equally. Often they acknowledge that they let their child with a disability behave in ways that their other children cannot. Often they feel that the child with a disability asks for so little that the child should get what he or she wants. Sometimes it is difficult to know what are appropriate limits for a child with special needs. Rachel’s mother explained it to her, as an adult, in the following way:

I know you used to get mad at me for not telling your sisters when they did something wrong, but if you correct someone on something and they learn from it, then it is an appropriate thing to do. But if they don’t learn from it, and you tell them over and over and over again and they still don’t learn . . . Well, I had to let go sometime, because if I kept correcting them and correcting them and correcting them again, then their whole lives would have been filled up with negativity, and I didn’t want that for them.

Having this conversation with her mother forced Rachel to reassess her beliefs and realize that she had had little understanding of the situation as a child.

Like most siblings, my sister and I fought, sometimes physically. She was very strong in one arm and would often hit me. If I retaliated, I was told, “Don’t do that. She can’t help it.” It seemed so unfair. Sometimes the child with a disability has a particular way of behaving that shuts off responsibility. Gina, whose sister is dead, talks of her frustration at not being able to fight back.

My sister would say something mean to me, but if I attempted to retaliate, she would shut her eyes. That was it, I couldn’t do anything. It was so frustrating because she could get me, she could hurt me any time she wanted and I couldn’t retaliate in kind.

Many siblings talk of their frustration at parents “spoiling” a child with special needs. A sibling may have felt that the child with special needs was indeed able to understand what was right and wrong. A sibling might also feel that the child with special needs could have been encouraged to contribute to the household in simple ways that would have helped the child develop more independence.

Siblings often end up with a chip on their shoulder. Life can seem so unfair, even with the most loving and caring parents. As adults, it is easier to see the need for the differences and understand that love is not necessarily related to attention. As children, however, the perceived injustice can lead to anger and resentment, and then it is difficult to know where to direct those feelings.

SUMMARY

KEY STRATEGIES TO DEAL WITH THESE ISSUES