12

THE ROLE OF SERVICE PROVIDERS

THE TERM SERVICE PROVIDERS REFERS TO A range of organizations and individuals with which a family might come in contact in their search for support. Organizations might include hospitals, disability services, and schools. Individuals include doctors, nurses, physiotherapists, speech pathologists, psychologists, and teachers, all of whom can play an enormous role in helping a family adjust.

How effective individual service providers can be in supporting families depends on their own professional training and personal interests and attitudes, as well as on the general philosophy of the organization that employs them.

Some organizations support family-centered or whole-family approaches. Others tend to focus on the child with special needs and the child’s main caregiver while largely excluding the wider family. Some take a preventive approach, in which they try to avoid the development of problems. Others operate largely through crisis management, where they wait for problems to arise before taking action.

An organization may see the benefits of adopting a preventative approach rather than one that is problem focused, but government funding policies may restrict the services it is able to offer. Sadly, at this time, few services can access sufficient funds to develop family, and in particular, sibling, services. The services that do operate rely on the personal commitment and professional advocacy of individuals.

This chapter tells parents what they can expect from the service system. I also hope that it will help service providers develop a context for the work they do and provide ideas to enhance what they already do.

ORGANIZATIONAL POLICY AND APPROACH

For service providers to be able to support families effectively, the agency that employs them needs to be committed to providing such support. In my experience and that of other siblings, this requires the agency to adopt policies that encourage true family-centered care, provide support to all family members, and focus on prevention.

Family-Centered Care

Family-centered care involves a shift from the traditional model of the professional as the sole expert. Service providers are gradually recognizing that any working relationship between professionals and a family needs to be a true two-way process of give-and-take. Families often have much to contribute when decisions are being made about the care of their child. After all, the management of a disability or chronic illness involves the whole family and its day-to-day routines.

A young mother was upset with her treatment by a large organization. A speech pathologist had come to a family meeting to discuss treatment options for the woman’s young child. The speech pathologist had made it clear that “this is what will be done”; she did not allow the mother any opportunities to give her own input. The mother felt like saying, “Hey, I know my child, shouldn’t you be asking what I think?” In addition, the organization failed to provide this mother with a piece of equipment that would have given support to her child, who had walking difficulties. On both counts the mother was afraid to complain, feeling that her complaint might rebound negatively on her daughter. That may or may not have been true, but many parents in this situation feel vulnerable themselves and protective of their child with special needs. The speech pathologist needs to ask herself, “Am I doing my best to try to help this family feel competent and that they have some influence over what is happening to them?” Providers in general should make a point of asking families during an interview: “Is there anything you don’t understand? Is there anything more we can do to help you? Is there anything more you require of us?”

Families need help in accessing resources and developing skills that make them feel better able to help themselves. With serviceprovider assistance, they can feel more confident about supporting each other within the family and seeking help from outside the family when necessary. Providers can help a family assess its own needs, determine the most likely places to gain support, and then become more competent in accessing that support. Again, not only is it important that a family has its needs met, but it is also important how the needs are met.

Whole-Family Approach

While family-centered care is a welcome change in direction that seems to be gaining popularity, the idea of broadening the approach to the whole family is still not pursued as widely as it ought to be.

Services have traditionally focused on the patient or client. Even when a family-centered perspective is taken, often the focus is on the parents and the child with the disability, without much attention given to siblings. Indeed, the focus is often on the mother-and-child pair—even fathers are left out.

Funding restrictions may contribute to the narrow focus of service delivery. But what happens to one family member clearly has an impact on all the other members, and it is unrealistic to consider the needs of one or two family members in isolation.

If we support the whole family, we are supporting the person with special needs. Surely children with special needs will progress much further when both parents and siblings are able to feel competent and emotionally supported and the whole family can function in a positive, caring manner.

Sibling relationships are usually the longest of any intrafamily relationships. Siblings play a crucial role in each other’s development, and it seems shortsighted that they are often ignored by service providers. Siblings have much to contribute and much to gain by being involved.

Brothers and sisters are an important part of the social network, both for parents and for the person with special needs. They also educate others. Their role changes as parents age. If siblings are supported and have their feelings validated and needs met, they are much more likely to continue their relationship with their brother or sister, add to his or her quality of life, and be able to supplement available social services.

Prevention

In many societies there is a growing awareness of mental-health issues and the link between childhood experiences and adult mental health. People now understand that in order to reduce the likelihood of mental-health problems it is necessary to intervene early in a child’s life, especially when a child experiences major difficulties.

From the stories told to me, it seems that siblings of people with special needs are at risk of developing emotional and mental-health problems. It is clear that appropriate support from an early age increases the likelihood that a sibling will adjust more positively to her situation.

Sibling support is not merely an attempt to make siblings feel better, it is an important preventive mental-health strategy. Without intervention, the cost to a sibling and the cost to social services in later years can be high. On the other hand, with intervention, siblings are likely to have higher self-esteem and an enhanced sense of competence. They can also develop a range of positive human qualities, including compassion, tolerance, and maturity.

There are various types of mental-health prevention. Some models target the whole population. Others target those populations that are identified as having a high risk of developing problems, while some target groups that already show signs of problems.

Many child mental-health services continue to focus on fixing problem behavior. But many siblings do not show problem behavior. Siblings may internalize their feelings and become the “good child” or the “superhelper” while at the same time struggling with feelings of isolation and self-abnegation. Many actually feel rewarded if they look after themselves and so hesitate to show their distress or seek help.

We need to identify populations of children who are at greater risk of developing problems later in life. Siblings of children with special needs are a high-risk group. There are, however, factors that protect such children from developing emotional or mental-health problems—for instance, clear information about their brother’s or sister’s special needs; a supportive, communicative family; the ability to feel competent; a strong social-support network. Service providers need to make efforts to improve these protective factors for these children. Their aim should be to help children become more resilient. A resilient child is more able to recover from difficult situations, develop the capacity to overcome challenges, and develop into a healthy, functioning adult. In fact, people who have experienced difficult times in childhood, had support, and developed the skills to cope often grow into much stronger adults.

The tools a sibling needs in order to become stronger and more resilient are ones that all children can use: the ability to identify and express their feelings, problem-solving skills, strategies to cope with daily frustrations, and a sense of competence. They also need an adult who listens to and validates them. In order to improve the protective factors in a child’s life, service providers must focus not only on the child himself but also on the environments in which he operates—family, school, and social.

The stresses on the whole family of a child with special needs can lead to a breakdown in family functioning and the ability of members of a family to support one another. If parents are given the right type of support early, we can prevent a family system from losing balance. Developing communication skills and creating an environment that values each family member are important ways to improve support within a family.

Schools can be an important source of support and prevention. I explore this in more detail later in this chapter.

Finally, there needs to be more collaboration between child-health workers, school personnel, and community groups so that more effective systems of support can be developed for families and, in particular, siblings. Mentoring by a significant adult, peer support, and social support can all be protective factors.

Service Providers as Advocates

Providers can play a major role in increasing the awareness of family (and sibling) issues among other professionals. They can encourage collaboration between different support agencies. They can ask friends, schools, extended family, and the general community to improve the support available.

PROFESSIONAL TRAINING PROGRAMS

Much of the training that health professionals receive is focused on crisis management and one-on-one interventions. Most preventive efforts, on the other hand, focus on group or systemic (that is, family) interventions.

A wide range of health professionals are in a prime position to influence how families adjust and to support all members of a family, individually and collectively, to live with a child or family member with special needs. Parents may hesitate to see a counselor but will often express their feelings to service providers who are involved with their child. These professionals, however, aren’t always trained in interpersonal skills. Nor do they necessarily know the best ways to support a whole family. We need to ensure that health professionals have some knowledge of how family systems work and have the necessary skills to provide support themselves or know how to direct a family to appropriate services.

A CHECKLIST FOR AGENCIES

The following checklist can be used as a starting point to assess whether an organization’s efforts to support families include principles of family-centered care, a whole-family approach, and preventive measures. Does the agency or organization

Have policies that reflect a commitment to family-centered care, a whole-family approach, and prevention?

Educate staff about the concerns of families and siblings when the family includes a child with special needs?

If appropriate, encourage research into what helps a family, and siblings in particular, to adjust positively?

Have mechanisms for ensuring effective collaboration between parents, older siblings, and professionals?

Encourage parents and siblings to be involved in consultation groups, up to board level? (This applies to larger organizations.)

Encourage parents whose children are newly diagnosed to have contact with parents who have already “been there” and who know the system?

Provide programs specifically for siblings at different age levels?

Encourage siblings to be valuable members of the treatment team?

Have mechanisms in place to care for siblings in particularly stressful emergency situations? (This applies particularly to hospitals.)

Provide links with community services for families, such as respite, transportation, and peer-support programs?

Encourage collaboration with different support agencies and advocate for siblings to be included?

A CHECKLIST FOR PROFESSIONAL TRAINING COURSES

Do opportunities exist for professionals to learn directly from parents and siblings about their support needs?

Are there training programs that raise awareness about the problems faced by families and siblings of a child with special needs?

Do parents and siblings participate in the development of training programs?

Do such programs include methods for working collaboratively with families?

Do they include training in interpersonal or counseling skills?

Do they include components that deal with family-centered practices and emerging theories of strengthening families?

Is there a focus on prevention as well as crisis management?

Professional training courses (for instance, medicine, nursing, social work, psychology, physiotherapy) should include issues relating to whole-family adjustment when there is a child with a disability or chronic illness, training in interpersonal skills, and training in how best to work collaboratively with families and other service providers.

In addition, I believe ongoing training and access to relevant information, especially in relation to sibling support, needs to become a priority for currently employed health professionals so they are better prepared to provide an appropriate and effective service.

SUPPORTING PARENTS

The first step in supporting siblings is to support parents. It is important to see a family as a system and recognize that all members of a family will be affected by what happens within that system. Different members of the family may react differently to what is happening. Service providers need to regard fathers and siblings as important members of the family system, both in need of support and capable of contributing support to others. Some fathers have said they feel actively excluded from various services. Providers should try to hold at least some meetings when both parents can attend. Both parents need to be addressed in interviews.

A family is also part of an overall social system. A family will influence and be influenced by other parts of the social system, including extended family, friends, work, school, and the general community.

The following sections describe the ways in which parents can be supported by family-friendly providers.

Accessing Information

Parents should be able to obtain information about their child’s special needs and the resources that they can use in managing those needs. This information may need to be reinforced at a later stage, when they are more ready, or it may need to be given again in a different way. It is important that service providers use language that is easily understood. The level of understanding within a family may need to be checked from time to time. Providers can ask parents to relay back what they have been told or asked to do. Merely asking “Do you understand?” almost always elicits a yes.

At a gathering of parents I attended, all parents said there should be a package of information about services given to each family as soon as a diagnosis is made. Certainly some organizations do this, but not all.

Feeling Listened To

Part of feeling supported is feeling that others understand. Families can often be intimidated by professionals and feel they are seen as just another “case.” Parents need to talk about their fears for the future, both for their child and for the family. They need to show emotion. It can be easy for service providers to do a lot of talking, but there needs to be time for listening and for allowing a family to tell its story without guilt. If families are shown understanding, they are better able to identify and ask for what they want and need. If service providers are open and honest, families will be encouraged to be the same. It is a matter of developing trust.

Providers need to be sensitive to cultural and language differences, as cultural attitudes might be relevant. These might include attitudes to disability, attitudes to caring roles within the family, or attitudes to the use of support services. If the family has difficulty communicating in English, interpretation services should be used to elicit and convey information. This is preferable to using a bilingual family member or friend, who might, under stress, misinterpret what is being said.

Communicating Openly with Each Other

Families can be shown skills to identify feelings and be open about them. They can be helped to give information to others in the family, for instance through regular family meetings. In some cases it might be helpful to refer a family for family therapy.

Regaining a Sense of Competence

Shared responsibility can help families rebuild a sense of worth. Following diagnosis, parents in particular can feel totally lost. They may feel overwhelmed by grief and by the many decisions that need to be made. They can gradually regain their sense of control and self-confidence by having a role in decision making. They also need skills in problem solving and stress management. Sometimes parents will respond more to programs with an educational focus than to a support group. This needs to be kept in mind when planning programs.

Parents have unique knowledge of their child and their family. It is more effective to improve a family’s capacity to help itself than to foster dependency on health professionals.

Like children, adults develop self-esteem through mastering situations and overcoming obstacles. Families need to know that they are steering the ship, with services to support them.

Sweeping statements such as “You are so wonderful” put parents on a pedestal and add to the pressure—what if they don’t always feel so wonderful? More specific statements—“You really manage time well” or “Your family seems to really care about each other”—can be taken onboard more easily by most families. It is not helpful to say things like “You were specially chosen for this task” or “You must be very strong to have been given this challenge.” Such messages can distance a family from a service provider. It is more helpful to acknowledge the difficulties for a family and then focus on how to work together to ensure the best outcome.

Families sometimes feel that others blame them for the problems they have. This can lead to low self-esteem and feelings of unworthiness. In the past and even now, to a lesser extent, some mothers have been blamed for their child’s disability.

Sometimes it is necessary for service providers to ask a lot of questions. Parents who are feeling vulnerable and full of self-doubt and guilt may think the provider is trying to lay blame. The provider needs to explain why she is asking these questions. To strengthen a family, we need to take the focus away from blame and concentrate on managing the situation.

Recognizing the Grief

Parents need help to identify and accept their feelings of loss and grief. This can sometimes be a complex process—each person’s experience will be unique. Parents need help to accept that they are okay no matter what their reaction. Service providers can help parents to see there is hope and their lives can be fulfilling in areas they may never have imagined. Providers should be careful, however, not to belittle the parents’ difficulties and grief.

Parents need help to understand the nature of chronic sorrow. They are likely to experience recurring sorrow during different periods, and parents can learn to prepare for these times. They will undergo a range of reactions, and for some the process of adjustment will take months and years. Some parents, in the early stages, do not need to talk about their situation but instead need comfort from those around them, “a blanket around the shoulder.”

Finding New Meaning

How parents perceive a disability or chronic illness will have a major effect on their adjustment. The messages that society and their social network give them will influence this to a large extent. In some families each member will eventually be able to take pride in the others, gain self-confidence, and have a clear sense of purpose. Other families will have difficulty moving toward such a positive position. Providers need to be wary of trying to put their own meaning on the situation, but they can have a big influence on how parents see things. Parents can be helped to focus on the immediate steps.

Practitioners need to help parents understand their own feelings and how these influence not only their own behavior and attitudes but also the reactions of those around them. Are their thoughts helpful? Are their thoughts telling them the situation will never get better? Are they putting a lot of blame on themselves?

Parents may go through a period of denial following diagnosis. As long as it doesn’t continue so long that it puts the child with special needs or siblings at risk, this can be a healthy coping mechanism. Service providers may be tempted to confront this denial, but that may be counterproductive. Of course, if the denial becomes entrenched, it can be difficult for siblings in particular to make sense of what is happening because they are told one thing but observe another.

Accessing Appropriate Services and Resources

Providers can play a crucial role in enabling families to access services that are suitable for them and provide both practical and emotional support. Respite is crucial for parents and siblings. All relevant service providers need to advocate for more services to be made available, especially just after diagnosis.

Having Contact with Other Families

Providers should encourage parents to have contact with other parents of children with disabilities.

Many groups exist in in which parents get together for discussion or social activities. These groups can give both practical and emotional support. They help parents develop their own coping skills and a more positive view of themselves and their child with a disability. Some parents may need time before they are ready to belong to a support group but they need to know such groups exist. Some organizations bring together whole families to share support.

Strengthening and Improving the Network of Social Support

Sometimes parents need help in explaining a child’s special needs to family and friends and in enlisting their support.

Service providers might also encourage parents to create wider networks. Both providers and the community need to be creative and committed in developing new preventive, supportive approaches. For example, programs could be developed where trained volunteers are assigned to a family, with the aim of providing a listening ear as well as practical help.

WHY SIBLINGS DON’T ACCESS SERVICES

The need for specific sibling support is still largely unrecognized in the community, and siblings rarely access services, either those provided through disability organizations or more general services. There are several possible reasons for this.

Sibling Guilt

Siblings are often given—and believe—messages that they should feel lucky. What are their problems compared with their brother’s or sister’s? They don’t want to add to the considerable burden parents may face, so they try to be the “good” child. This may make them reticent about expressing their own pain or confusion, and reluctant to seek support.

Problems Not Recognized within the Family

Parents may be too preoccupied with the child with special needs to recognize that the sibling is having problems. In some cases, parents are struggling with their own stress, grief, and acceptance, and their emotional resources are stretched to the absolute limit. They don’t always identify the signs of distress in their children and therefore don’t see the need for support.

Problems Not Recognized by Service Providers

Health professionals, teachers, and other providers often lack understanding of the issues for siblings. This can hinder their ability to respond to a sibling in a supportive way. It is relatively easy for mental-health professionals to understand the deleterious effects on a child whose parents are dealing with alcoholism or mental illness, or who physically or emotionally abuse their children. With siblings of children with special needs, the issues can be more complex and much less clear. Even in families that seem to be adjusting well, siblings can develop problems if not supported. Health professionals who do understand sibling issues are often restricted in what they can do, owing to limited funding.

SUPPORTING SIBLINGS

Families should be able to count on services to provide support to siblings. Service providers can support parents and thereby give them the strength to support their children, or providers can intervene directly with siblings. Sibling support requires knowledge of disability and family issues. If a provider has the opportunity, and if he has child-counseling skills, he can give the sibling individual counseling. Siblings can also be supported through groups. Siblings may need different support at different times in their lives.

Helping children become more resilient involves giving them skills that enable them to cope with stresses. In this regard, even minimal interventions can make a marked difference. For example, many adult siblings suggest that their own adjustment as children would have been better had they been introduced to other siblings who struggled with similar issues. My own experience in working with families supports this.

In order to support siblings, service providers should have the following aims.

Give Information

Siblings need information about how the special needs affect their brother or sister and the rest of the family. For example, if their brother or sister is in the hospital, siblings need information about who is looking after the child, what is happening, and how long the child is likely to be hospitalized. Without information, a sibling’s fears will grow. Siblings also need to know they are not to blame for their brother’s or sister’s disability or illness. Nor are they to blame for the family’s difficulties or the distress of their parents. Siblings should be included in most of the discussions about the child with special needs.

Show an Interest in Siblings

Providers can ask siblings about school, their friends, and their hobbies. If children express concerns or show difficulty in adjusting—for instance, if they claim not to have friends or hobbies—they can be offered support. By building relationships with siblings, service providers can help them feel important and special.

Encourage Siblings to Talk about Their Feelings

Siblings need to discuss both the good and not-so-good feelings. Comments such as, “If I had a brother with x, I think sometimes I might feel a bit angry. How about you?” give children permission to express their feelings. With the consent of the parents, you could offer them someone (either yourself or another appropriate professional) to talk to in confidence. Siblings can learn that their concerns are normal.

Some siblings will show signs of distress through their behaviour, but others hide their true feelings. It can be helpful to discuss the idea that we all have strengths and weaknesses, including the child with a disability. A sibling needs to know how he is similar to and different from his brother or sister with special needs.

Acknowledge the Care a Sibling Gives to the Child with Special Needs

A provider can ask a sibling’s opinion and help her discover opportunities to contribute in positive ways. Being involved in decisions and being given small responsibilities in relation to the child with special needs will help the sibling feel valued and competent.

Sweeping statements can make siblings feel inadequate and guilty. A comment such as “Aren’t you a wonderful sister!” will only make the sibling feel worse if she doesn’t in fact feel she is coping well. It is more helpful to make concrete statements such as “When you do that for your brother, it really helps him learn to talk.”

Give Siblings Skills to Deal with Stressful Situations

Useful skills might include constructive ways of dealing with emotions. Service providers can teach children problem-solving skills to cope with a variety of situations. There is a range of models that can be used. One, the stop, think, do model, is part of an overall program of teaching social skills and managing behavior in both primary and high school students.

Developed by clinical psychologists (Lindy Petersen and Anne Gannoni, in their book Teachers’ Manual for Training Social Skills While Managing Student Behaviour), this method uses a traffic-light symbol to remind children of the process. All children can use the method when faced with problems that seem insurmountable. stop (red) reminds children (and adults, including teachers and parents) to stop before they rush into anything and act impulsively. They then clarify the problem and how they and others might be feeling and what they want to happen next. think (yellow) reminds children to think about and generate many possible alternative solutions to the problem. Solutions may include fighting, telling an adult, demanding, asking nicely, bargaining, sharing or compromising, or walking away. Depending on the problem, other solutions can be discussed too. Children also think of the consequences of each solution and how people feel about them. do (green) reminds children to choose the best solution (the one with the most acceptable consequences) and put it into action. If it doesn’t work, they can go back to stop and evaluate what went wrong. Maybe the problem was different from what they thought, or the strategies were inappropriate or their behavior was not as they had planned. After they have done that, they can think of something else to do.

Sibling groups are an ideal venue to think about possible solutions and consequences, but providers can work with individual siblings in order to develop problem-solving skills. Some of the different problems might include conflicts with peers, such as teasing; with parents, such as perceived favoritism; and with the child with special needs, for example, disruptive behavior. Such skills empower siblings and let them know that they can influence what happens to them. Providers can help siblings understand the link between their thoughts and their feelings and develop more positive ways of looking at the world (this was covered further in chapter 11).

Help Siblings Develop Independence

Families may need help to recognize a sibling’s need to develop independence. Siblings can be helped to develop their own identity by looking at their interests and goals for the future.

Encourage Attendance at a Sibling Group

Service providers can refer siblings to groups in their area, or if none exist, you could start one. (Resources available to help are listed at the end of this book.)

The main aims of a sibling group are to provide children with the opportunity to share feelings in a fun, safe environment, to increase their social networks, and to develop strategies for dealing with problems. Some groups focus on enjoyable activities, and certainly these can provide links with other siblings and opportunities to share experiences and feelings. It can be a missed opportunity, however, if the group or agency does not recognize the need for further intervention in skill development and enhancing competence. Many siblings feel powerless, and learning skills to deal with difficult situations gives a sibling a greater sense of control.

Help the Sibling Identify Formal Support Mechanisms

Support “mechanisms” might include service providers involved in the care of a brother or sister, or particular counselors.

Assess How a Sibling Is Doing Socially

Help a sibling identify and develop her social networks. Peer relationships, social activities, school performance, and family interactions are all indicators of how a sibling is managing. Having healthy social networks also helps siblings develop their independence.

Help Siblings Find the Positives

While focusing on the positives is truly useful, it can be unhelpful to deny the reality of a sibling’s situation. For some children the stresses are considerable, and they will find it demoralizing if you gloss over their experience. Adults often say to siblings, “Oh, don’t worry about it!” or “Things aren’t that bad.” It is far better to acknowledge the difficulty and then look for solutions. For example, saying to a sibling, “Hey, I can understand your worrying about that,” shows the sibling you are listening and acknowledging his or her experience. It is then possible to move on and explore ways of making the situation less worrying.

Provide Individual Counseling

The aims of individual counseling are to help siblings understand, accept, and express their reactions to having a brother or sister with a disability, to feel listened to, to learn ways of dealing with problems, and to develop self-esteem. Some siblings need help in finding their own identity and working out their goals for the future. The relationship with their brother or sister with special needs will often improve if their own needs are met in this way.

Part of the process, like all therapeutic interventions, involves the development of trust between the counselor and the child. Some children will need more in-depth counseling if they are going through particular difficulties and will need contact with a qualified child therapist.

Collaborate with Other Organizations

Many other organizations will have an influence on children’s lives, for example, schools, child-health organizations, and community groups.

SCHOOL-BASED APPROACHES

School can provide a further avenue for informal and formal social support of siblings. Programs for siblings that are run within schools, or even general disability awareness programs, can help give siblings the coping skills to deal with their situation. But every little extra attention can make a big difference. The support can be provided in a very informal way by improving the chance for siblings to develop social networks.

Unfortunately, sibling support in schools is still rare. In my experience there is little awareness about sibling issues among education agencies and many teachers and school counselors. In addition, teachers and counselors are often unaware of the fact when a child has a brother or sister with special needs. Many siblings internalize their difficulties. And when a sibling does display behavioral problems, authorities rarely recognize the cause.

In these days of reduced staff numbers, many school psychologists can take on only a largely diagnostic role, rather than a preventive, therapeutic approach. School counselors are in many schools, but there could be more, especially in primary schools, where preventive approaches could be most effective.

When I was a child, there must have been other students at my school who had a brother or sister with a disability. I didn’t know of them and they didn’t know of me. There was no one I could talk to about my sleepless nights, my embarrassment and loneliness. If only we had known each other through those times, known there were others dealing with similar issues and uncertainties, it would have balanced the negative messages we had from other sources. Such support would be very simple to provide.

A Note to Teachers

For many siblings, school itself is a welcome respite from the stresses of home, but siblings can also bring the difficulties of their home life into school life. Siblings may be rebellious or they may have picked up inappropriate behavior from a brother or sister with disabilities. They may have problems socially, perhaps because they have not learned from their brother or sister the accepted ways of relating to those of a similar age. Siblings may display anxiety, or they may internalize their emotions and show signs of depression. As one mother said about her daughter, “She’s a mess at school on the days her sister is in the hospital.” Some siblings will not wish to talk about a sibling with a disability; others will feel comfortable doing so when young but less so as they grow older.

If the child is comfortable (this is very important and needs to be established first), she could make a presentation to the class about her brother or sister with special needs. This could be part of a broader activity in which the class discusses different disabilities and in which it is acknowledged that individuals have different strengths and weaknesses. A parent of the sibling might also like to be involved. There might be more than one sibling in the class. (I mentioned earlier that this could possibly be engineered by the school.) Other children in the class might be cousins or friends of someone with special needs, and they could also add to the discussion. Some disability agencies are able to provide such sessions as part of their outreach service.

It is best if activities that promote disability awareness and open communication can start at an early age.

For Nance, a particular teacher helped her find the positives in her situation.

I was lucky in my senior year of high school. I was taken under the wing to a degree by an English teacher, whom I look back on now as one of the pivotal people in my life. Who knows where I would be now without her? She understood my rebellions, overlooked the silly ones, and gave me the opportunity to write about my brother in my school essays and express the frustration I felt. I know now, looking back, that she basically helped me to grow up. Largely because of her I came to realize that just like any person, there were good points to my brother and bad. He was not necessarily a burden or someone to feel embarrassed about. He had his own special talents, such as memorizing, it seems, almost every song ever written, that I could be proud of and share with him. And it was from then on, about seventeen, I suppose, that I became closer to him again and saw him primarily as a friend, rather than feeling bitter about what could have been.

Teachers can help siblings develop a sense of mastery not only through academic skills but also in sports, music, positions of responsibility, and social skills. They can talk to students about using skills to solve problems through the normal course of a day.

Having a student in your class who is a sibling of someone with special needs provides an opportunity to incorporate a range of topics into the classroom. Issues around disability, accepting differences, showing empathy, and building resilience can all be covered as part of disability awareness, health, society, and environment studies.

Teachers can give direct support to siblings in the following ways:

SUMMARY

It is important that providers, when trying to support families:

Service providers can support siblings by

This support ideally comes early, so problems are prevented. Siblings should be included in the support loop for families from the very beginning.