ABSTRACT

 

 

Research indicates that a sibling that has a brother or a sister with a disability may have certain issues and concerns related to this experience. It is believed that by participating in a sibling group, siblings will have more positive relationships with their sibling with the disability, friends and family, will enhance their acceptance of the disability and help them in their expression of their feelings. Eighteen children between the ages of 7 and 15 were interviewed. Nine of the children had not participated in a sibling group and nine had. The questions asked during the interview were based on issues/concerns that were discovered from previous studies. Siblings that participated in sibling groups were more able to express their feeling and were more open.

BROTHERS AND SISTERS OF SIBLINGS WITH DISABILITIES: AN INVESTIGATION OF THE EFFECTS OF SIBLING GROUPS ON SIBLINGS WITHOUT DISABILITIES

 

            The relationships between brothers and sisters are among the most rich and enduring bonds that children and adults experience. They are also a potentially important family system in terms of family health. Brothers and sisters generally spend more time with one another than they do with their parents, not only during childhood, but through out the course of their life (Labato, 1990). This is also true for brothers and sisters where one of them is disabled. The relationship then has more of an impact on the family’s health (Caro and Derevensky, 1997). This is why the topic of support for brothers and sisters where there is a sibling with disabilities has become an important research topic for many mental health professionals (Stoneman and Berman, 1993).

Literature Review

Research on siblings with brothers and sisters with disabilities dates back to the late 1950’s and early 1960’s. Before this time many families were advised to institutionalize babies that were born with any noticeable disabilities. They were told that it would be harmful to the family especially the other siblings. Since these children were not being raised at home, the need for sibling support was not as much an issue during this time (Klein and Schleifer, 1993). Times have changed with the laws for people with disabilities allowing for more support at home and in the community. People’s thoughts of institutionalizing have changed. With this came the question of the effect of having the sibling with the disability at home on the siblings without disabilities (Stoneman and Berman, 1993).

            One research issue focused on the psychological adjustment of the sibling. Most of this research concluded that the effect on the sibling without the disability could vary a great deal. Some of the things that can cause negative effects on the sibling are parental neglect; guilt, shame, stigma, extra childcare and house hold responsibilities (Labato, 1990). However, in general the child’s disability did not have a negative effect on their sibling’s self-concept, self-esteem, social competence, or behavioral adjustment. There just did not seem to be a direct relationship between a child’s disability and the psychological adjustment of their sibling. This is not to say that brothers and sister are completly unaffected by a disability. It just simply suggests that they show no more evidence of major personality and behavior disorders than their peers (Labato, 1990). However, one reason why they may need support if not for disturbances in their psychological adjustment is that siblings do have special concerns and feeling about their experiences with their brother or sister with the disability. Their feelings can be negative and positive. These concerns and feelings need to be addressed (Labato, 1990).

Another research study has shown that even though many siblings do not have disturbances in their psychological adjustment, there are some factors that may attribute some siblings to be at risk (Powell and Gallagher, 1993). Family characteristics, including size, SES, and religion, appeared to be important factor contributing to sibling adjustment. Additionally, parental attitudes, and expectations, as well as characteristics of both the siblings, such as age, gender, temperament, and the severity of the child’s disability also significantly influence the sibling relationship and affect sibling adjustment. For these at “risk” siblings, their psychological adjustment problems are long lasting and may influence career choices and future family patterns (Powell and Gallagher, 1993).

Other research has shown that support needs to be obtained in families where the stress level of the parents if particularly high. When parents perceive their experiences with their child with disabilities as negative, no matter what the disability is, siblings tend to perceive their experiences as negative as well (Dyson, 1996). This causes stress on the entire family. Another cause of stress on the family is due to the level of disability. Caring for children who are severe, profound, or have multiple handicaps cause more stress and is more traumatic to the family than other families who have children with milder disabilities (Edumundson, 1985).

The study called Risk and Protective Factors Affecting the Adjustment of Siblings of Children with Chronic Disabilities showed that having a child with more severe disabilities would cause more stress on a family. This study was done on siblings with brothers and sisters with Downs Syndrome and Pervasive Developmental Disorder (Fisman et. al., 1996). They found that the best predictor of parental stress was first the presence of a child with a disability. The parents that had higher levels of stress were found to be the parent with the child with Pervasive Developmental Disorder. The reason for this was that their parents related the higher levels of stress to the decreased adaptability of the child, increased demands, and decreased acceptability. The parent with the children with Downs Syndrome experienced an extra burden only in their child’s acceptability. Having more stress in a family is a reason to provide support to siblings (Fisman et. al., 1996).

SIBLING’S FEELINGS OF CHILDREN WITH DISABILITIES

Even though there are many siblings that do not show any problems because of having a brother or sister with disabilities, generally all siblings express the need to have support and discussion groups to help them deal with their feelings and to acquire information (Dyson, 1998). Some of the feelings they report having to deal with are guilt, loneliness, loss, frustration, embarrassment, fear, anger or jealousy, and resentment. They also report having concerns about over identification, increased responsibilities, and pressures to achieve (Meyer and Vadasy, 1994). To understand these feelings and concerns and how they affect the sibling, the following is a description of the above.

Guilt    Some brothers and sisters may feel guilt about not having the disability. Some siblings my even feel they are to blame for their brother or sister’s disability (Meyer et. Al., 1985). They may even feel guilty about their emotions of anger, jealousy, and hostility. Guilt feelings sometimes are repressed when negative thoughts and feelings have been punished. Excessive guilt may manifest in overly helpful act directed toward the child with the disability (Powell and Gallagher, 1993). Siblings sometime feel guilty about having the abilities that their siblings lack. They may feel guilt over sibling conflicts, over care giving, or not wanting to care give (Richey and Wheeler, 2000). When a sibling is not very communicative, it is hard to tell whether they’re having guilt feelings. It is important if sibling feel excessive guilt that they communicate it. If they don’t it can lead to psychological problems such as depression (Siegel and Silverstein, 1994).

Loneliness Siblings may feel lonely in families where there are only two children, where the sibling without disabilities misses having a brother or sister with whom they can seek advice, or share their thoughts, hopes, and dreams. They may also feel lonely if they don’t have peers in similar situation in which to share their experiences. The feeling of loneliness can also come if they are unable to share their feelings with their parents (Meyer and Vadasy, 1994). Some siblings feel loneliness because they are not getting or understanding information due to their parents preoccupation with the child with the disability. Siblings need clear information and emotional support. As long as siblings choose and feel comfortable, they should participate in their brother or sister’s activities, such as IEP/ISP meetings, clinic visits, and therapy sessions. It is also important that they are not missing their own activities to go to these places (Richey and Wheeler, 2000). 

Loss Siblings have feelings of loss when they cannot play together when they are children because of the child’s disability. They also feel a loss because their sibling might not be able to do all the things that they can do. Another reason they might feel a loss is that they feel cheated in their family because they are missing out on the things that their friends are enjoying with their brother or sisters (Meyer et. al., 1985). In addition, siblings feel a loss because spending time with their friends has to take a “back seat.” Since so much time is being spent going to meetings, therapies, evaluation, and etc arranging time for the “normal” sibling to get together with their friends gets pushed aside (Richey and Wheeler, 2000).

            Frustration Attempting to establish a normal sibling relationship with a brother or sister who has a disability may lead to great levels of frustration. Also, not being able to talk about their sibling’s disability with their family or friend can be frustrating as well (Powell and Gallagher, 1993).

            Embarrassment Some brothers or sisters may become embarrassed of the sibling’s behavior or appearance. The siblings who do not have a disability may avoid contact with their brother or sister, not inviting friends to the home, etc. Sometimes extensive adaptive equipment may cause embarrassment especially if they have friend over (Powell and Gallagher, 1993). The unwanted attentions their siblings sometimes receive such as people staring can be embarrassing. Siblings should be given permission to be embarrassed, allowing siblings some control over the situation. These feelings should be validated (Richey and Wheeler, 2000).

            Fear Brothers and sisters might fear that they will develop the disability. Children (and sometimes adults) think that disabilities such as mental retardation are contagious (Meyer et. al., 1985). Siblings may be overly concerned and frightened about possible futures for their brother or sister, their parents, and themselves. They may fear the reactions of their friends, especially future or present spouses, when they learn about their brother or sister. Also, siblings may be afraid to have their own children for fear that they too will be born with disabilities (Powell and Gallagher, 1993).

            Anger or Jealousy Brothers and sisters may be angry or jealous over the amount of attention the brother or sister with the disability receives, especially if the child’s disability requires additional care (Meyer et. al., 1985). Jealousy is commonly focused on the unfairness or unevenness of parental attention. Typically, siblings feel anger toward the child with the disability, their parents, society, and God. Anger can be the result of feeling ignored and unappreciated (Powell and Gallagher, 1993).

            Resentment Brothers and sisters may feel resentment as parents spend excessive amounts of time with the child who has the disability. They may resent curtailments of social activities as a result of the presence of the sibling with the disability. Siblings may feel resentment at the unfairness of the family situation and the different expectations parents hold for their children (Powell and Gallagher, 1993). They may also feel resentment in regards to failing to plan for the future (Richey and Wheeler, 2000).

            Over identification Younger brothers and sisters might wonder where they share or will share a sibling’s problem. This usually occurs when the sibling with the disability has a mild disability and is too young to understand the concept or contagion (Meyer and Vadasy, 1994). In this situation brothers and sisters need accurate information about their sibling’s disability. They need information repeated and updated periodically (Richey and Wheeler, 2000).

            Increased responsibilities Sometimes brothers and sister may have to spend more time caring for their siblings than other brothers and sister. This can conflict with plans with friends or the responsibility become overly burdensome. This can be very upsetting for brothers and sisters. The oldest sister in the family is usually affected the most by this. They are the siblings in the family that are pushed into a surrogate parent role with the child with the disabilities (Meyer and Vadasy, 1994). When this occurs there is a greater risk for these siblings to have educational failure, increase disturbances, and stress (Richey and Wheeler, 2000).

            Pressure Sometimes brothers and sisters feel pressure to achieve in order to “make up for” a siblings inabilities. The sibling who does not have a disability may feel that excelling in school, sports, or other ways will compensate for the fact that a sibling with a disability is not able to do as well (Meyer and Vadasy, 1994).

            Need for information Sometimes siblings report to needing information about their brother or sister’s disabilities and it’s implications, how to get social support, and solving sibling conflicts. They also need information for reassurance, to answerer their won questions and questions posed by others, and to plan for their future. As children grow their information needs change. Younger children have different informational needs than older children do and therefore their needs should be discussed at each appropriate developmental stage (Dyson, 1998). Adults have different informational needs. Some of those needs are genetic information, long term care issues, and ensuring sibling’s quality of life (Powell and Ogle, 1985).

ADULT SIBLING NEEDS   

Adult siblings of people with disabilities are an extremely overlooked population. They are frequently torn between the responsibilities they have for their own families and their allegiance to their sibling with a disability, especially as parents age and pass away (Meyer and Vadasy, 1994). The amount of responsibility that adult siblings assume varies with individuals and circumstances. It is dictated by a consideration of family and job responsibilities, personal choice and available community support (Powell and Ogle, 1985).

            Some of the adult information needs are about personal relationships particularly dating, marriage, and children. It also includes genetics, long-term care of the brother or sister, the care of aging parents, and helping the sibling enjoy a quality life. Some other things that siblings need to be concerned about are residential care for their parents and guardianship for their sibling (Edumundson, 1985).

            Other adult sibling needs are respect, understand, information, peer support, and advocacy (Powell and Ogle, 1985). The following is an explanation of the above.

Respect Adult siblings need to be recognized and respected as individuals. They need to be respected as individuals by their parents, family, friends, and service providers. Service providers need to respect the fact that siblings have a lot of useful information and in many cases will be their sibling’s caretaker in the future (Powell and Ogle, 1985).

Understanding Adult should feel that their issues/concerns are being recognized and respected. They should also feel that others understand their problems and are willing to help (Powell and Ogle, 1985).

Information It should be recognized that adult siblings want to learn more about services for people with disabilities. They need information so that they can help their brother or sister as well as their family make informed choices and plan for the future (Meyer and Vadasy, 1994).

Peer support Many adult siblings want to talk with others in similar situations. Adult brothers and sisters face issues that are not generally experienced by their peers in the community (Meyer and Vadasy, 1994).

Advocacy Most adult siblings want to advocate for quality services for their brother or sister. They know that systems change for people with disabilities when family members assist them as advocates. Since many siblings have an important role in the lives of people with disabilities, they have the need to gain advocacy skills (Siegel and Silverstein, 1994).

SUPPORT GROUPS LEAD TO CAREERS IN HELPING PROFESSION

            Support groups may lead many siblings into finding careers in the helping profession. When siblings get together to help themselves, many find this comes natural to them (Burton and Parks, 1994). Many of them also aspire to advocate for people who cannot do this for themselves. Some of the careers they choose are special education, special recreation, counseling, and social work. This is not just the support groups doing, but it is also living in a family with a member with a disability. On research study found that in their study twice as many siblings that were in college were enrolled in helping profession classes compared to students without siblings with disabilities. They also found that these siblings find psychological strength from their experiences with growing up with a brother or sister with a disability (Burton and Parks, 1994). Those who had some kind of support while growing up were more likely to join helping professions and they reported more positive experiences with have a sibling with a disability (Powell and Gallagher, 1993).

 

 

 

 

TWO MAJOR SIBLING ORGANIZATIONS

            While the issue of support groups for siblings has become more popular, there are two major organizations that are totally dedicated to helpings. They are The Sibling Information Network and The Sibling Support Project.

The Sibling Information Network is for families and professionals who are interested in the welfare of individuals with disabilities, their families, specifically siblings. They provide a common information base, serving as a clearinghouse for research and other professional activities related to siblings of children with disabilities. They also distribute a quarterly newsletter, available free to members. Other available resources include bibliographies of children’s literature and relevant journal articles, a listing of audiovisual material, and suggestions on how to start a sibling group (Klein and Schleifer, 1993).

The Sibling Support Project addresses the specific concerns associated with brothers and sisters of children with disabilities and more recently adults. The project strives to increase the number of peer support programs throughout the United States. One of the programs they have developed is Sibshops (See Appendix A). Sibshops help young siblings illicit coping strategies, foster mutual support, and encourage self-expression. The project provides the training, demonstration, and technical assistance to agencies wishing to add a program for brothers and sister. Staff members also work to increase awareness of sibling issues through presentation to national and regional audiences (Klein and Scheleifer, 1993).

Purpose of the Study

Based on the review of literature, twelve criteria relating to personal and emotional factors affecting children with a sibling with a disability were isolated to be tested. Findings should first demonstrate what specific issues discussed in the sibling groups positively enhanced the siblings relationships. Second, the examination of these issues may shed light in possible new issues to be included or emphasize in sibling groups and their discussions. Third, this study should help us to confirm the positive effect on the sibling without the disability in terms of their acceptance and open expression of feelings.

The thirteen criteria to be studied are guilt, loneliness, loss, frustration, embarrassment, fear, anger or jealousy, resentment, over identification, increased responsibilities, pressure to achieve, and the need for more information.

Participating in sibling groups for children that have a brother or a sister with disabilities will enhance their understanding, acceptance, coping skills, and the quality of their relationship with their sibling with the disabilities, friends, and family. In addition, because of having this group experience, siblings will become more open and willing to express their positive or negative feelings pertinent to their relationship to their sibling with the disabilities. In the exploration of these issues, additional issues of concern will be generated.

Method

            This research has been designed to focus on the effects of sibling groups (Sibshops) on siblings with brothers and sisters with disabilities. The population tested, the instrument used, and the procedure utilized is a follows:

Sample

            There were 18 participants in this study, chosen on the basis of having a brother or sister with a disability. Nine of the participants had not been to a sibling group (Sibshops)(Group #1) and nine had participated in at least one (Group #2). The 18 participants were taken from two Chicago land area Special Education Cooperation’s and one from a Social Service agency. All participants fell within the age range of 7-15 years old.

Instrument

            An interview was conducted with all 18 siblings. The questions were based on sibling issues/concerns discussed in the related literature. All siblings in both groups were asked questions based on these issues and concerns. Examples of some of the questions asked are as follows:

1.     What is your sibling’s disability?

2.     Can you explain it?

3.     Do you feel comfortable talking to your parents about your sibling?

4.     How does your sibling’s disability make you feel?

5.     Do you have people you can talk to about your sibling besides your parents? Who are they?

6.     Do you ever feel frustrated? About what?

7.     Do you ever fell embarrassed by your sibling? When?

8.     Do you sometimes feel jealous of your sibling: About what?

9.     Does your sibling every do anything that makes you angry? Is there anything else that makes you angry?

10.  Is there anything that you worry about?

11.  Did you ever think or think now that you can catch your sibling’s disability?

12.  Do you feel that you have more chores, duties or extra baby-sitting to do because of your sibling?

13.  Do you think that your parents make you try extra hard in school?

14.  Do you put pressure on yourself to do well in school or sports?

15.  Is there anything about your sibling’s disability that you want to know more about?

In addition Group # 1 were asked if they would like to participate in a sibling group. Group #2 were asked if they like Sibshops, would go again, and would they recommend it to other siblings.

            At the very end of the interview the siblings in both groups ere asked to rate how they felt about their sibling. Using the Likert scale the siblings were asked to rate their feeling on a scale of 1-10. It was explained that 10 meant that they felt the best or most positive and 1 mean that they felt the worst or negative about their sibling.

 

Procedure

            First phone contacts were done to area schools and agencies asking if they would send a letter home to families that had children with disabilities. The letter explained the purpose of the research (see appendix B). The parents then contacted the researcher and set up a time to come interview their children. At the time of the interview the parents were given an informed consent (see appendix C) letter to read and sign. Next the interviews were conducted. Some of the interviews were done individually (if there was only one sibling in the family) and others were done together with both of the siblings without disabilities.

 

 

 

 

 

 

Results

 

SIBLINGS THAT DID NOT PARTICIPATE IN A SIBLING GROUP

(Group # 1)

INTERVIEW #1

           In the first interview, the participants were 13(child A) and 11 (child B) year old females. Their parents were currently married and lived together with their 11-year-old female sibling with Downs Syndrome. Child B and the 11-year-old sibling with Down Syndrome were identical twins. The participants also had a 21-year-old half sister (previous marriage on mothers side) who did not currently live with the family.

            Both participants were interviewed at the same time. Participants A and B had an understanding of what Down syndrome is and explained that their parents had talked to them about their sibling’s disability when they were younger. They also understood that because of her disability, she would need special care and attention.

            These participants did not express feelings of guilt. They stated that they know they are not to blame for their sister’s disability and did not admit to feeling bad about their sister having a disability. If they are feeling bad about something pertaining to their sister, they both felt that they are able to express themselves to their parents. Neither one of them claimed to be afraid to do so.

            These two expressed no feelings of loneliness. Child A explained that she has her sister to talk to as well as her mom. Besides that she exclaimed, “My friend love my sister!” “Sometimes they come over to see her, not me.” “My friends are very understanding.” Child B reported similar situations.

            Both participants reported to some feeling of loss. They said they pretty much do everything with their sister that other kids do with their brother or sister. “She is just a little slow.” Stated child B. Both explained that they like to help their sister learn new things. However, sometimes they feel a little bad because their sister doesn’t have friends like they do and has had a hard time with learning. They feel the loss of their sister not having the same opportunities that they have.

            When it came to feelings of frustration, they reported not feeling this way when it came to their sister. The participants explained that their parents are very open with them and encourage them to come to them with anything, especially if it is issues concerning their sister. They couldn’t think of any situations that they might become frustrated.

            Sometimes their sibling can embarrass them. “But not too much.” Child B quickly added. She wanted to make sure it was understood that they are very excepting of their sister in every way. They explained that they sometimes get embarrassed when she does strange things in public. “Sometimes people may stare because she looks different,” Child A reported. She also reported that this could sometimes make them angry too.

            Fear, was somewhat an issue when discussed. They were not concerned about having a child with a disability themselves or catching the disability. This is a conversation they had had with their mother. However, they did have some concerns about the future of their sibling. For example, where she would go to school, or live. They were in agreement about wanted to be involved with their sister some how when they were adults. They just were not sure in what way. Future plans are not something that had been discussed with their parents yet. They hoped to have that conversation sometime in the future.

            No feelings of anger or jealousy toward their sister were admitted to. They feel that their parents give them as much love and attention as their sibling. Overall, they reported feeling equal treatment between the three of them. All three of the children have chores and are expected to do them, however Child B reported that her sister’s chores are “easier” than hers or her old sisters. Both claimed to understand this.

            Resentment did not seem to be an issue with these two either. They feel that they, as a family participated in the same things that all families do, such as go on vacations. Neither one of them have to miss out on their own activities because of their sister. They are able to have friends stay the night and don’t have to worry about being too loud. They are both involved in sports and after school activities and it does not conflict with any activities that their sister has to do.

            There were no issues with over identification at this point in their lives. Both were aware that they could not catch theirs sibling’s disability. They could not report if they had ever thought this, as they could not remember. To their knowledge this was never as issue. Their parent had explained their sister’s disability to them at an early age. They were told at separate times when each was old enough to understand.

            In this particular family, their mother is very aware of the possibility of putting too much responsibility on the other siblings with out the disability. According to the participants, increased responsibilities are not a problem. Neither reported to having “extra” responsibility. Child A did not report to having to extra babysitting duties. “Just the normal stuff”, she stated. Sometimes they help their mother or sister out, but did not feel that they were made to do extra things for her.

            These participants were extremely adamant in stating that they did not feel “pressure to achieve” by their parent or from themselves for that matter. They both felt that they were average students and were involved in sports, but not excelling in either schoolwork or sports. “We are just like every one else,” stated Child A.

            During the end of the interview the participants were asked if they would be interested in participating in a sibling groups. The both said they would love to. They said that they’d like to meet other sibling and maybe even learn more about their sister’s disability or other disabilities. It was also asked on a scale of 1-10 how they felt toward their sibling. Child A gave her sibling a 9 and Child B gave her sibling a 10.

INTERVIEW #2

            In the second interview, the participant was an 11-year-old female (Child C). She lived with her mother, five-year-old brother, and her 13-year-old sister with Epilepsy and Schizophrenia. Her parents were divorced, but the father did have some involvement with the family.

            Child C was asked if she knew what epilepsy and schopherehia is. Schizophrenia was difficult for her to explain, but knew it was a mental illness and she explained Epilepsy as having seizures. She was able to explaine these disabilities because she reported that her mother had explained them to her as best as she could. Child C was understanding of the of the extra care her sister needs, but said, “It still isn’t fair!”

            Child C did report to having some guilt feelings. She sometimes feels bad because she gets angry or frustrated with her sister. She did not report feeling as if she was to blame for her sister’s disability. “I wasn’t even around when my sister was born.” She reported. She sometimes feels guilty because she explained that she doesn’t treat her very well. She state, “Sometimes I yell at her or say mean things because she makes me so angry!”

            No feelings of loneliness were reported. She explained that she did not have another sibling to talk to (couldn’t talk to her five year old brother), but she could talk to her mom. Sometimes she said her mom would understand and sometimes she doesn’t. Her friends have been very understanding. She stated that her friends are not afraid of her sister and can talk to them when her sister is getting on her nerves. She even has a group of friends at school that go into the special education room during lunch to help those children out. She is one of them and her sister is one of the children in the special education room. So those friends understand her situation, she reported.

            Child C did report to having feelings of loss. She said, “I wish I could have an older sister to talk to.” She says she misses the relationship she could have had with her had she been born “ok.” Child C did report to feeling bad because her sister is older than her and can’t do the things that she can do. She also reported that it wasn’t fair that her family doesn’t do things together. Child C stated that it is too hard to go places because of her sister’s behaviors.

            When it came to feelings of frustration, she said that she feels frustrated a lot. Child C reported that her sister had many behaviors and that was very frustrating to her. She was frustrated because it was hard to have friends over because her sister could get violent. She was also frustrated about the unequal treatment in the family between her brother and her sister. She said, “I do not get my fair of attention!”

            Child C reported to feeling embarrassed by her sister. She stated, “mostly in public because she said can act very strange.” “I try to work with her.” She said, but her sister doesn’t understand or have social skills. “Other then that, when she is in public and people stare at her, I just figure that people don’t understand.” She said. She added that she would like to be able to explain to people what is wrong with her.

            Fear, was somewhat of an issue. She did wonder what would happen to her sister in the future. She wondered what school she would go to and who might take care of her if her mom couldn’t any more. She didn’t know if she would be the one to do it, but really didn’t want to have the responsibility. This is a topic she had not talked about with were mother. She did want to have this conversation sometime, but she said she was not too concerned about it right now. Child C did not express being worried about having a child with a disability or developing a disability.

            Feelings of anger and jealousy was admitted toward her sister. She said because she feels that there is not equal treatment between siblings that makes her very mad. “Between my brother AND my sister, my mom doesn’t have much time for me” “That is not fair!” She exclaimed.

            Resentment was also a problem for Child C. She was very resentful of the time her mom has to spend with her sister and her younger for that matter. It is hard for her mom to find the time to take her to her friends’ houses or pick her up from after school activities. She doesn’t feel that she has the freedom to be able to do the activities that she wants or her friends get to do because of her sister. She did admited to being resentful of her sister because of that. This in turn has lead her to feeling guilty as well.

            No issues of over identification were reported. She was aware at this point in her life that she could not catch her sister’s disability. She didn’t report to ever thinking this. Her mother also reported that Child C did not have an issue with this.

            Increased responsibilities was definitely a problem for Child C. She said not only would she sometimes have to look after her younger brother, but her older sister. She was very expressive in stating that this was not fair. She also has to help with dinner, help her sister get dressed, and go to the bathroom. She stated that she did not like doing t these extra things. However, she reported, “ I am not afraid to tell my mother that I don’t like to do these things either.” Even though she didn’t like her “extra” duties at home, she has put it upon herself to make sure her sister is ok at school. Since the go to the same school, Child C stated that during lunch she is able to check up on her.

            Child C did not feel pressure to achieve by her mother. She said that she sometimes has a hard time with school, but doesn’t feel that her mom puts pressure on her. She didn’t report to putting extra pressure on her self either. She said that she just does the best that she can. Sometimes it’s hard for her mom to help her with her homework so she said, “I just do what I can and ask the teacher when I get to school.”

            At the end of the interview it was asked if Child C would be interested in participating in a sibling group of some sort. After it was explained to her, she reported, “I’d love to do that!” She was excited with the though of being able to talk to a bunch of other kids her age that had a brother or sister with a disability. She said she would be interested in learning more about her sister’s disability as well. It was also asked on a scale of 1-10 how she felt toward her sibling. Child C gave her sibling a 4.

INTERVIEW #3

            Interview three was with two siblings, a seven (Child D) and ten (Child E) year old female. Both lived with their mother, father and nine year old brother with autism. No other siblings involved.

            Child D and Child E were interview at the same time. Both children were asked what autism was. They were both able to explain it as some kind of communication disorder. They reported that their parents had explained what it was to them. Each child was told at separate times. Child D was able to explain it a little better because she was older than Child E and has heard autism explained more than once. These children reported to being excepting of the extra attention that their brother had to receive even if they did think it was unfair. They also reported to feeling that they were able to speak freely with their parents especially about their brother. They said that they have a time set up in which they are able to talk to their parents about anything that is bothering them.

            Some feelings of guilt were expressed. Sometimes I feel bad when I get mad and yell at Steve” Child D reported. Child E stated, “I feel bad when I pick on him or tease him.” Sometimes they also feel bad when they fight with each other because they know that their mother does not need the extra aggravation. They brought this up several times through out the interview. This bothered them as they reported how their mother would tell them how their behavior would affect her. These children both understood that they were not to blame for their brother’s disability.

            Feelings of loneliness were not a problem for these two. They explained that they had each other to talk to and many friends. “My parents are there for me when I need to talk.” Reported Child E. Both explained their friend as being understanding and not afraid of their brother even though he can act violently sometimes.

            At this time these children reported some feelings of loss. They did not feel that they were missing out on something because their brother had a disability. “Maybe just some of the attention from my parent.” Stated Child E. It wasn’t the relationship with their brother that was a loss to them, but the attention received by their younger brother that they felt left out in.

            Both children did admit to having feelings of frustration. They both reported to feeling frustrated with their brother’s behavior and having their things destroyed because of his behavior. They tried to understand, but their things are important. Sometimes they are frustrated with the fact that there is not equal attention among siblings. Sometimes they are frustrated with the having to do chores and their brother does not.

            Both reported to being embarrassed by their brother sometimes. “He makes weird noises.” Stated Child D. “Sometimes he hits himself.” Reported Child E. These things can make them embarrassed especially when in public with their brother. They did say they try to ignore people who stare or make comments. This does bother them however.

            Fear of the future was a definite problem. They wondered who would take care of their brother in the future. They wondered if this is something they would have to do. This was not yet a topic that they felt comfortable talking about with their parents. Neither thought that they could get autism, but were not sure if their kids could have it. They hadn’t thought about this so, this was not discussed further.

            Anger and Jealousy was and issue as well. Child D and E reported feeling the unfairness of the attention received by their parents. This was very upsetting to them. As they stated before. It also makes them angry because they have chores and their brother doesn’t. Sometimes they feel angry because they try really hard in school and don’t get recognized for it.

            Resentment was also an issue. Both reported being resentful of the excessive time their parents spent with their brother, including taking him to all of his special class and therapies. They did state that they don’t do some of the family activities that their friends do such as go on vacation or go to “Great America.” These are important things to them and are missing out on because of their brother’s disability. They were also resentful of the fact that their parents expect a lot out of them when it comes to grades. They feel the pressure and don’t think that is fair.

            No feelings of over identification were reported. They could not remember ever feeling that they would become autistic. Their mother also reported them never thinking they could catch their brothers disability.

            Increased responsibilities at this point was not a problem. They did have chores, but not extra duties when it came to their brother. Mother reported to understanding that sometimes in a family the siblings had extra duties with the child with the disability. She did not want to do this to her children.

            “Pressure to achieve” was felt by these two. Child D and E reported to having to do well in school. Even though they tried really hard, if they did get a good grade they felt that they did not get the recognition that they deserved. If they didn’t do so well their parents put pressure on them to do better the next time.

            At the end of the interview, it was asked if they would be interested in participating in a sibling group. A sibling groups was explained and both reported interest in going to one. They said they would like to meet other kids that have a brother or sister with autism. Child E said “It would be neat to meeting someone else with a brother with autism.” It was also asked on a scale of 1-10 how they felt toward their sibling. Child D gave her sibling a 5 and Child E gave her sibling a 6.

INTERVIEW # 4

            Interview four was with a 15 year old female (Child F) and a 13-year-old male (Child G). They lived together with parents, their 19-year-old sister, and 17-year-old brother with severe cerebral palsy. Grandma came to baby-sit while their parents were working. During the summer their older sister is responsible for their brother and said that she volunteered to do this. Both children reported that their parents did not influence this. Child F reported that she has in the past volunteered to help with her brother, but the 19 year old would not allow this.

            Child F was not very social and was not too interested in talking about her brother. She needed a lot of prompts to share information. Child G was more interested in talking about his brother. It was asked if they knew what cerebral palsy is and Child F stated, “It is something that happens at the time of the birth.” Child G did not know this and said, “That was something I didn’t know.” The children reported that their parents had talked to them about their brother’s disability, but Child G said he just couldn’t remember what cerebral palsy was.

            Child F did not express any guilt feeling. She did not feel that she was to blame for her brother’s disability. She could not report on feeling guilty about anything else either. Child G did express feeling bad that his brother did not have friends like he had or being able to play sports like he could. He did feel bad that his brother had a disability, but wasn’t a big deal to him. He stated, “He just fits into our family.”

            Feelings of loneliness were not reported. Both stated that they had friends at school that had a sibling with a disability as well. They did not talk to each other about it or much with their parents. Child G was more excepting of his brothers disability in that he was able to talk to his friends about him. He had no problem inviting his friends over. Child F did have a problem. She was not too interested in having friends over. Instead she would go to other friend’s houses. Neither felt that there was a need to have conversations about their brother.

            Child G did experience a loss with having a brother with a disability. He reported to feeling bad that his brother could not do the things that he could do as he reported before. He also reported sometimes missing the fact that he could have had an older brother to look up to. However, he wanted to make sure it was understood that he was fine with his brother the way he is. Child F did not have a whole lot to say. She said her brother was something that she had not put much thought into and because she was younger then him. She reported, “Things are just they way they are.” She did admit to not being able to do things as a family like other families get to do. This was a loss that she felt.

            Neither admitted to feeling frustrated. They just had to deal with what they had and said there was nothing they could do about it. They both felt that if they had to talk to someone about their brother, they would go to their parents. They also had their friends and grandmother to talk to. Again, they didn’t’ t feel there was anything to talk about.

            Child F would talk a little about being embarrassed about her brother. It was a touchy issue as she said she knows she shouldn’t feel this way, but does. Her friends are excepting of her brother, but when she is in public people may stare and that makes her uncomfortable. Child G said he could be a little embarrassed by his brother, but said he knows he can’t help the way he is. He also said his friends were very excepting of his brother and if they weren’t he wouldn’t be friends with them.

            Fear was a problem when they future was brought up. They bother wondered who would take care of him and where he might live. They both thought that their older sister would be responsible for him. Child F did not report to helping with him in the future. At this point in time they had not discussed future plans with their parents. They were both curious as to what the future would be for their brother. Child G wanted to be a part of his life somehow. Neither of them had a fear about developing the disability. Neither had thought about their kids having a disability, so it was not discussed further. 

            Anger or jealousy was not admitted to. They did state that there is more attention given to their brother, but said they were fine with that. It did not bother them because they know that his disability is severe and needs more help then they do.

            Resentment was not admitted to either. They said they were not resentful of the extra attention that their brother receives. They said that it was ok that their parents couldn’t go to all of their sport events or always help them with their homework. 

            According to the children’s mother these two never had the overidentivication problem. As least it was something that was never discussed. Child F and G did not ever remember thinking that they could “catch” their brother’s disability.

            Since their 19-year-old sister has taken upon her upon herself to care for her brother, Child F and G did not report to having extra duties taking care of him. They said they have their normal chores like their friends and their parents do not expect or ask them to do extra things.

            Neither child felt the “pressure to achieve” by their parents. They said their parents have not put extra expectations on them. They are not especially good in school, but do try to get good grades. They don’t think that is because their brother has a disability. They feel that they would try hard in school even if their brother were not disabled.

            At the end of the interview it was ask it they would be interested in participating in a sibling support group after it was explained. Child F said no. She did think that she would like that. She didn’t feel that she needed support or would like to talk to others about her brother. She also said she didn’t feel she needed more information pertaining to her brother. Child G was a different story. He said he would be interested in seeing what a group is like. He didn’t mind the idea of talking about his brother to other siblings. He even said he’d like to learn more about his brother’s disability. It was also asked on a scale of 1-10 how they felt toward their sibling. Child F gave her sibling an 8 and Child G gave his sibling a 9.

INTERVIEW # 5

            In interview number five a 10-year-old male (Child H) was interview. He had an eight-year-old sister with down syndrome. He lived together with her and both of his parents. There were no other siblings.

            Child H was very interested in talking about how proud he is of his sister and how he likes to teach her new things. He was easily able to explain what Down Syndrome is. He explained that his parents had explained it to him and is very open about talking about his sister.

            Child H did say that he felt guilty because his sister has a disability. He felt bad because things are hard for her and “things” come easy to him. “I wish she didn’t have a disability” he replied. “I know it is not my fault and I didn’t have anything to do with it, but it still makes me feel sad.”

            No feelings of loneliness were expressed. He said he was able to confide in his friends and well as felt comfortable talking to his parents. He didn’t really feel that there were any negative feelings to talk about, but loved to tell people what accomplishments his sister makes.

            Child H did experience a loss. He feels a loss not because he can’t play or do things like other sibling do, but because she is not able to do the things he can. An example given was with schoolwork. She has to be in special classes and that makes him feel bad. He wished she could be in regular classes.

            Child H admitted to no feelings of frustrations. He said he was very excepting of his sister’s disability. It did not matter to him that his sister had a disability. He said he was very proud of her. Child H said that he is able to talk to his parents about her, but has not had any issues with her that he has felt the need to discuss. He did say he has a lot of questions about her disability and his parents have always been there to answer those questions.

            There have been sometimes that his sister has embarrassed Child H. He said, “She sometimes is embarrassing when she does strange things in public.” However, he said that he understands that she can’t help it. He then replied, “If people stare or say anything it’s their problem.”

            Child H had some fear about what would happen to his sister in the future. He wondered what she would do such as where she would go to school, work, and live. These are things that he had not discussed yet with his parents, but was still curious about. He did feel comfortable in talking about this something in the future with his parents. Child H did not fear that he might have a child with a disability someday.

            Child H claimed that he didn’t feel angry toward his sister or have feelings of jealousy. He said it did not bother him that his sister did receive more attention at times. “I know my parents love me too.” He responded. He also said that most of the time his parents do a good job about making time for both of them and even though there are times his sister receives more attention, he understood why.

            Absolutely Child H felt no resentment. This was hard for Child H to understand because he couldn’t think of reasons to be resentful. He felt there was equal treatment between the two of them. Her disability has not interfered in his life such as him having to go to special therapies with his sister or his parents missing his soccer games. One of them is always able to go as well as his sister goes too sometimes.

            No over identification was a problem. As far as he could remember his did not think that he could catch his sister’s disability. His mother reported the same facts.

            There were increased responsibilities for Child H. However, they were not the expectation of his parents. Child H had taken it upon himself to watch his sister and help take care of her. Again he said that he enjoyed doing this. He also reported that he did not have “extra” household chores. He felt that they were the same as his peers.

            “Pressure to achieve” was not an issue according to Child H. He did not feel that he had to try extra hard in school or in extra circular activities. However, his mother mentioned that she was concerned that he was putting too much pressure on himself to do well in school and with sports. He was involved in many different sports and spends hours doing his homework, always getting excellent grades. Child H did not think that had his sister not had a disability that his study habits or love of sports would be any different. He did not feel he was trying extra hard to compensate for her disability.

            At the end of the interview he was asked if he would be interested in going to a sibling group. He replied, “I would if it was during a time that I didn’t have anything else going on.” He liked the idea of meeting other siblings and maybe learning more about his sister’s disability. It was also asked on a scale of 1-10 how he felt toward his sibling. Child H gave his sibling a 10.

INTERVIEW # 6

                        Interview number six was with a 12-year-old female (Child I) with a 10-year-old brother with severe cerebral palsy. She lived with him and both of her parents. No other siblings were involved.

            Child I was very willing to participate in this interview. She said that she was looking forward to it. It was hard for her to answer some of the questions because she didn’t know how to answer them. She did report having her brothers disability explained to her, but didn’t remember the conversation or say that she spends time talking to her parents about his disability or other issues related to her brother.

            Child I did not express guilt. She did not think she was to blame for her brother’s disability. Nor did she feel any negative thoughts toward her brother to feel bad about. She said she accepted his disability. “Besides, there is nothing I can do about it any way,” She responded.

            Even though there are not other siblings in the family that she could confide in about her brother, she did not express loneliness. She said that if she had to she would talk to her friends about it, who are very excepting of her brother. “I would also talk to my mom if I needed to,” She stated. She also reported to being close to her mother.

            There was a feeling of loss when it came to not having a brother to play with and teach like most of her friends have. She did also feel bad that her brother could not do the things she could do or others his age. When talking about this she added “I don’t think too much about this because there is nothing I can do about it.” She also reported that it made her feel very bad to think about it.

            Child I never reported to feeling frustrated. She couldn’t think of anything about her brother that could make her frustrated. Again, that feeling that there was nothing she could do about his disability was brought up. She said she just accepted things the way they are.

            “Absolutely not!” she exclaimed when asked if her brother had ever embarrassed her. She couldn’t think of a situation or a time when she might have been embarrassed. She was very adamant in stating that she didn’t care it people stared. It was their problem if they had a problem with her brother.

            Fear was an issue. She did wonder and thing about what would happen to her brother in the future. She often wonders what he is going to do and where he is going to go. She knows that her mom is not going to be able to lift him forever, as he gets bigger. It is already starting to be a problem.

            Child I did not admit to feelings of anger or jealousy. She said she is not angry or jealousy of the attention her brother receives because she knows that he needs it. She said that she is able to do things for herself and her brother cannot. She did not admit to feeling angry at the fact that her brother was born with a disability. “It is something that just happens and no one is to blame.” She stated.

            Child I felt no feelings of resentment. She claimed that she feels that her parents spend enough time with her. They attend her basketball games. They even go on vacations together. So she did not feel she was missing out on any activities that her peers have with their families.

            Over identification according to Child I and her mother, this was never a problem. Child I couldn’t remember ever thinking she could get his cerebral palsy even though she was four when her parents explained it to her. Her mother also said that Child I did not have a problem with this.

            Increased responsibilities was not an issue either according to Child I. She did report to having to watch her brother every once in a while when her mom had to run to the store quickly. This did not bothered her, as it did not happen very often. She also reported to getting her brothers toothbrush ready when it is time to brush his teeth. This did not bother her either as she has volunteer to do this. “Anything extra I have to do for my brother, I don’t mind.” She reported.

            “Pressure to achieve was a slight problem as her parents did expect her to get good grades. Because of this she tries really hard in school and gets good grades. Child I also excels in basketball. She is in 7^th grade and plays on the 9^th grade team. However, even though she excels in achidemics and sports she does not feel this is because of her brother’s disability.

            In the end of the interview it was asked if Child I would be interested in going to a sibling group after it was explained what one is. She said that was something that she had never thought about. She also had never thought about meeting other siblings that have a brother or sister with a disability, but she thought that it would be “pretty cool.” It was also asked on a scale of 1-10 how she felt toward her sibling. Child I gave her sibling an 8.

INTERVIEWS WITH SIBLINGS OF CHILDREN WITHOUT DISABILITES THAT PARTICIPATED IN SIBLINGS GROUPS

(Group # 2)

INTERVIEW # 1

            Interview number one was with an 11-year-old female (Child A) with a nine-year-old brother with moderate disabilities, including cerebral palsy. She lived with him as well as both her parents.

            Child A was able to talk about her brother and his disability. She was able to explain his disability and reported understanding it better because she had attended a sibling group called Sibshops. Even though she felt that she could talk to her parents before the group, she claimed to feel even more comfortable because now she knew what kind of questions to ask.

            Child A did not feel any guilt feelings because of her brother’s disability. She knew it was not her fault and that sometimes things like this happen. She also didn’t feel bad because sometimes she might feel angry or jealousy of her brother. These weren’t strong feelings, but since going to Sibshops she said it was ok to have these feeling. She wasn’t the only one, she reported.

            Feelings of loneliness were not a problem before Sibshops because she said she has lots of friends who she could talk to and her mom as well. After Sibshops she felt even better because she was able to talk to other kids her age that know exactly how she felt. She recalls one session where there was another sibling talking about her brother where she was describing her own situation. “I though that was really cool!”

            There was a loss felt by Child A. She felt the loss of not being able to do things with her brother that other brothers and sisters can do with their sibling without disabilities. Sibshops did not change this feeling, but it made her feel better knowing that others felt this way too.

            At times Child A can feel frustrated with her brother because he does receive more attention then her, but she was very understanding of this. She explained that he needed the attention more that her. She also admitted to feeling frustrated about not being able to have a sibling to interact with like most of her friend do. During Sibshops she met others with the same issues and it made her feel better to know others feel this was too.

            Her brother does embarrass Child A sometimes. “People stare at him because he looks different and makes noises, “ she stated. She said she tries not to be embarrassed, but she can’t help it. “I am not the only one that feels this way,” she explained. During Sibshops this was a topic that was discussed and to her surprise, most of the kids there had felt embarrassed at one time or another.

            Fear was an issue as well. She did want to know what might happen to her brother in the future, where he would live, would he go to school or work. These things were not answered at Sibshops, but she did learn that other kids worried about these things too. She also found the courage to talk to her mom about these things. She still didn’t have answers, but had wanted to talk to her parents about it before and was too afraid to.

            Child A did admit to feelings of anger and jealousy. She thought it was unfair that her brother had a disability. It made her angry because she saw how hard it was for him to do everyday things. Since her brother has severe disabilities, she sometimes is jealous of the attention that he receives from her parents. “I deal with it though.” “I can’t help to feel this way sometimes.” She reported. There were others at Sibshops that felt this way too, so she had said it was ok to have theses feelings.

            Sometimes Child A is resentful of the fact that her family doesn’t go on vacations like other families do. “The ones we have been on have been short” “I’ve never been to Flordia,”she explained. This tended to be the same with her peer at Sibshop, but that didn’t make her feel better. She felt is wasn’t fair, but did understand why it was so hard for her family to do stuff together.

            Over identification was not a problem. She said she was old enough to understand that she couldn’t catch her brother’s disability. She also didn’t think that she thought this when she was younger. At Sibshops, this was discussed and she thought it was funny that some people or kids think that they could catch a disability.

            Child A did not have increased responsibilities or so she felt. Sometimes she has to do things for her brother, but since she is older she said she probably would have to do things for her brother even if he wasn’t disabled. They talked about this during Sibshops too. She learned that sometimes the oldest girl in the family has to a lot of things for the sibling with disabilities. She replied, “I guess I am lucky that I don’t have to do extra stuff.” There was one sibling in her group that had a lot of responsibity with taking care of her younger sister.

            Sometimes Child A feels like she has to try extra hard in school. Some of that pressure she puts on herself and some of it comes from her parents. “It’s not fair that I have to try so hard in school.” She replied.

            At the end of the interview it was asked if Child A liked Sibshops and would she go back. She replied. “Of Course!” She said it was a lot of fun and loved meeting other siblings. She even has stayed in contact with some of them. Child A was also asked if she would recommend Sibshops to other kids and she said “yes.” It was also asked on a scale of 1-10 how she felt toward her sibling. Child A gave her sibling a 9.

INTERVIEW # 2

            In interview two, two children were interviewed. They were a 10 year old (Child B) and an 8-year-old (Child C) male with a four-year-old sister with developmental disabilities unspecified. Parents were married and all lived together.

            Both participants were interviewed together. Child B and C were able to explain that their sister has seizures and is disabled, but because of the unknown details of their sisters’ disabilities, they were unable to explain more. The participants did report that their parents had tried to explain their sister’s disability, but was difficult because of those unspecified areas. Child B stated, “We got to meet another kid who had a brother with seizures.” Child C replied, “We still talk to him.” They both reported that it had been helpful for them to meet another child that had a sibling with seizures.

            The participants expressed some feelings of guilt. They said that even though they know that their parent or specifically mom has to spend a lot of time with them, they feel jealous. This makes them feel guilty because they feel that they should not feel this way. They did know that others felt guilty at their Sibshops. So they stated that it help them to know that it was ok to feel jealous. They did not express guilt about not having the disability nor did they think they were to blame for her disability.

            No feelings of loneliness were expressed. Child C report to not feeling especially close to his sister. He said he was close to his brother even though they did not specifically ever have conversations about their sister. Child B reported that having met other siblings has made it better for them because they know they are not the only ones with a sibling with a disability. They also reported to staying in touch with others from their group.

            Feelings of loss were a difficult issue for them. Both felt very strongly about feeling bad because she will never have friends like they do. She will never have the opportunity to play with friends like they do. This had made them feel very sad. Other in the Sibshop had felt this way to explained Child B. Even knowing this did not help them to feel better about the situation. “It still is not fair!” Child B reported.

            Feelings of frustration were present. They both reported to being frustrated about having to go to therapy with her when they would rather be playing with their friends. Sometimes they would have to miss their baseball games and this really upset them. “Going to therapy is so boring.” Stated Child C. “I hate it when I have to miss a baseball game because we have to go somewhere with my sister!” exclaimed Child B. They weren’t alone in this either. During Sibshops they met other kids that felt this way too. It made them feel a little better about the situation, but not totally.

            Sometimes theses participants feel embarrassed. They reported to being embarrassed when she has a seizure in public. “I know she can’t help it, but it is still embarrassing.” Said Child B. She also makes noises too and can be embarrassing for them. It makes them angry when people stare at her because of theses things, but both understood that people are probably just being curious. During Sibshops they learned that it was normal for sibs to sometimes be embarrassed by their sibling. They said it was ok to feel this way, as they were not the only ones.

            Child B more than Child C had some fear about what would happened to their sister in the future. There were a lot of questions because her disabilities are so sever that they did know what kind of a school she would be going to. Neither really thought too much about the future more than a few years down the road. This was not a topic touched by their parents yet and the Sibshop that they attended did not, according to them, talk about future “stuff”.

            These participants admit to much anger and jealousy. Again they are angry about the activities that they have to miss out on because of having to go somewhere with their sister. They also feel that they don’t get as much attention from their parents as she does and is upsetting to them. “It’s not fair!” exclaimed Child B.

Despite these feelings they are not angry at their sister. They know it’s not her fault. Child B said that during Sibshop he learned that other kids felt this way and they had practiced ways of telling their parents how they feel. He said neither one of them had yet expressed theses feeling to their parents, but had planned on to.

            They admitted to feeling resentful of the time their parents have to spend with their sister. They also resent the fact that they miss out on activities and family activities such as vacations or going to their baseball games. Again they were not the only ones who felt this way as they learn at Sibshops. This had helped them to not feel guilty about being resentful. It was ok to feel this way, but learned that they should talk to their parents about it more.

            Over identification did not seem to be a problem. Neither could ever remember thinking that they could catch the disability. Their mom did not report this as a problem as well.

            Child B reported increased responsibilities. He said that he had to help out a lot with his sister. He also said that it wasn’t fair that his brother did not have to help out. Child C reported this to be true. He did not have extra responsibilities with his sister. Child B did say that during the Sibshops he learned that the oldest sibling usually get “stuck with extra responsibilities. He still didn’t think it was fair.

            Pressures to achieve were not felt by either of the participants. Neither of them reported that they felt that their parents made them try extra hard in school. They both reported to not putting pressure on themselves to do well in school either. Both were involved in sports, but were involved in sports before their sister was born so they didn’t think that they were excelling in this either.

            At the end of the interview, they were asked if they enjoyed Sibshops. They both said they did and in fact had not wanted to go originally. Since going, they were looking forward to going again. They said it was a lot of fun and enjoyed the food. Child C said, “I loved the cookies!” Both said they would recommend other siblings to go to Sibshop. Child B said he learn a lot and liked meeting other kids. It was also asked on a scale of 1-10 how they felt toward their sibling. Child B gave his sibling a 7 and Child C gave his sibling a 10.

INTERVIEW # 3

           In interview number three, two children were interviewed. They were an 11 year old (Child D) and an 8-year-old (Child E) male with a six-year-old brother with Autism. Parents were married and all lived together.

            Both participants were interviewed together. Child D was more expressive in talking about his brother and able to explain better what Autism is. He explained it as a communication disorder and something being wrong in the brain. Child E said that is was still hard for him to understand even though it was talked about during the Sibshop he attended. The participants did report that their parents had tried to explain their brother’s disability as best as they could. They said that it helped meeting other siblings with autistic brothers or sister because they shared their experience. Through these experiences they said it started to help them understand autism a bit better.

            These participants did not express feelings of guilt. Neither reported feeling guilty about not having the disability. They also did not feel that they were to blame for the disability. Neither could think of reasons why they would feel guilty. However, they did report that others in their group felt guilty about these things. They know that it is not their fault that their brother has a disability.

No feelings of loneliness were expressed. Both reported to not feeling very close to their brother with autism, as it was hard to interact with him because of his behaviors. Both claimed to be close to each other and do many things together. They even shared some of the same friends, who were excepting of their brothers disability. Child D reported it was nice meeting other siblings that have a brother or sister with autism. It made them feel that they were not the only ones and could really share their true feelings with them.

            Feelings of loss were expressed. They expressed a loss when they said that they couldn’t play with their brother like other siblings can. They reported that their brother’s behaviors had kept them distant. It was also a problem because they couldn’t communicate with their brother. Child D stated, “It’s like he is in his own world.” Other children at Sibshops felt this way too. Knowing this made them feel a little better about not being close to their brother.

            Feelings of frustration were present. Both had felt frustrated because they couldn’t have a “normal” relationship with their brother. It was also frustrating to them that they had a hard time talking to their parents about their feelings. During Sibshops they met other kids that felt this way too. It made them feel better about the situation and made them think about trying to talk to their parents about their feelings.

            Sometimes theses participants feel embarrassed. They reported to being embarrassed when their brother has tantrums in public and people staring. This really bothers them, but realizes that there’s really not much that can be done about that going to Sibshops has made them feel better about this because they met other sibs that have gone through the same thing.

            Both participants had some fear about what would happened to their brother in the future. They wondered if his behavior would get worse or better. They wondered if he would continue to hurt them. They also thought a little about his future. This was not discussed with their parents, but talked a little about it during their Sibshop. Some kids wondered where their sib would live, go to school, or work. They thought more about this now then they did before the group.

            These participants claimed to feel anger and jealousy. They will become angry when their brother is acting out. When this happens their brother can hurt them. It makes them angry as well because their mom does not punish their brother for this. They also become angry because when their brother is acting out, he breaks their toys. In addition to this, it makes them angry that their parents pay more attention to their brother then they do them. However they understand that their brother needs a lot of attention. Child D said that Sibshops helped him to learn to explain to his parents what makes him angry or jealous.

            They admitted to feeling resentful of the time their parents have to spend with their brother. They resented the fact that their brother does not get punished for hurting them or breaking their stuff. They are resentful because they don’t get to do other things like other families do because of their brothers’ behaviors. At Sibshops they learned that they were not the only ones who felt this way. They said that even though these things still upset them, it helps t hem to know that they are not alone in feeling this way.

            Over identification did not seem to be a problem. Neither could ever remember thinking that they could catch the disability. Their mom did not report this as a problem either.

            Neither participant reported increased responsibilities. Even though sometimes they both had to watch their brother, they reported not having “extra” duties. They were willing to watch their brother even though, Child D reported it being a pain, and they know their mom needs a break sometimes.

            Pressures to achieve were not felt by either of the participants. Neither of them reported that they felt that their parents made them try extra hard in school. They both reported to not putting pressure on themselves to do well in school either. Both were involved in many different sports, but didn’t think that they were especially excelling in this.

            At the end of the interview, they were asked if they enjoyed Sibshops. They both said they did. Since going, they were looking forward to going again. They said they liked playing games and making lunches together. Both said they would recommend other siblings to go to Sibshops. It was also asked on a scale of 1-10 how they felt toward their sibling. Child D gave his sibling an 8 and Child F gave his sibling a 9.

INTERVIEW # 4

In interview number four, two children were interviewed. They were an 11 year old (Child F) and an 8-year-old (Child G) female with a six-year-old brother with Autism. Parents were married and all lived together.

            Both participants were interviewed together. Both participants were very expressive in talking about their brother and their feelings. Both participants were able to explain what Autism is. They said they knew how to explain it because their parents had explained it to them. They also said that going to Sibshops help them to understand it better too. At their Sibshop, they had a speaker come in and talk about autism.

These participants did not express feelings of guilt. Neither reported feeling guilty about not having the disability. They also did not feel that they were to blame for the disability. Neither could think of reasons why they would feel guilty. Some kids at their Sibshops felt guilty because of their sibling having a disability. Child F and G did not admit to having these feelings.

No feelings of loneliness were expressed. Both participants said that their friends were excepting of their brother. They also said that they felt comfortable talking to their parents about their brother or at least now they do. Before Sibshops both participant admitted that they probably would not have shared much with them. During their group they participated in dialogs and practiced expressing themselves to their parent. They said this has helped a lot.

            Feelings of loss were expressed. They expressed a loss when they said that they couldn’t play with their brother like other siblings can. They couldn’t have a relationship with him because his behaviors kept them away. They also felt a loss because they missed out on doing family things together. It seemed like their father was always at work and there was not much time to do things as a family. As well as because their brother could be very hard to handle sometimes. During Sibshops they learned that other kids felt this way too. Knowing this made them feel better about missing out on family activities. “Child F said, “It’s nice to know we are not the only ones.”

            Feelings of frustration were present. Both felt frustrated because their brother was allowed to get away with everything. It was also frustrating to them because sometime their parents wouldn’t understand why they are upset sometimes. For example sometimes their brother hits them and even though they know he can’t help it, they still think he should be punished. During Sibshops they met other kids that had a hard time talking to their parents too. Since then they said that have started expressing their feelings more.

            Sometimes theses participants feel embarrassed. They reported to being embarrassed when their brother has tantrums and makes noises in public. People will stare and that makes them made. This really bothers them, but realizes that there’s really not much they can do about his behaviors. Going to Sibshops has made them feel better about this because they met other sibs that have gone through the same thing.

            Both participants had some fear about what would happened to their brother in the future. They wondered where he would go to live and even thought that one of them might have to take care of him. Before the Sibshop they reported not thinking about this before. This was not discussed with their parent, but had on doing that because they were really worried. At this point in time they did not want to be responsible for taking care of him.

            These participants admitted to feeling angry and jealous. They become angry when their brother is acting out. When this happens their brother can hurt them. It makes them angry as well because their mom does not punish their brother for this. They also get angry because when their brother is acting out, he breaks their toys. In addition to this, it makes them angry that their parents pay more attention to their brother then they do them. However they understand that their brother needs more attention then they do, but it still makes them angry. During Sibshop they learned that they were not the only kids that felt this way.

            They admitted to feeling resentful of the time their parents have to spend with their brother. They resented the fact that their brother does not get punished for hurting them or breaking their stuff. They are resentful because they don’t get to do other things like other families do because of their brother’s behaviors. At Sibshops they learned that they were not the only ones who felt this way as well.

            Over identification did not seem to be a problem. Neither could ever remember thinking that they could catch the disability. Their mom did not report this as a problem either.

            Neither participant reported increased responsibilities. Even though sometimes they both had to watch their brother, they reported not having “extra” duties. They did not like to watch their brother if they didn’t have to. Sometimes they did because their mom needed them to watch their brother for a short time. They said that was ok because it was not long at all.

            Pressures to achieve were strongly felt by both participants. Both reported that they felt that their parents made them try extra hard in school. They even put pressure on themselves to try hard. Child F reported, “I feel I have to try extra hard because my brother will never be able to learn what I can,” Since the participants sometimes fight with each other, they try really hard not to because this causes more problems for their mother and really doesn’t have the time to deal with this.

            At the end of the interview, they were asked if they enjoyed Sibshops. They both said they did. Since going, they were looking forward to going again. They said they liked playing games and making lunches together. Both said they would recommend other siblings to go to Sibshops. It was also asked on a scale of 1-10 how they felt toward their sibling. Child F gave her sibling a 6 and Child G gave her sibling a 7.

 

INTERVIEW # 5

            In interview number five, two children were interviewed. They were an 11-year-old (Child H) female and a 7-year-old (Child I) male with a 14-year-old sister with epilepsy and sever mental retardation. Their parents were divorced and currently their father was not around.

            Both participants were interviewed together. Child H and I had an understanding of what epilepsy is. They explained it as having seizures. Child H said her sister has seizures where she falls to the ground and shakes. These participants both reported that their parents had explained their sister’s disability to them. They even learned a little more about it during their Sibshops. They met other sibs that had a brother or sister with epilepsy. Even though they didn’t have the same kind of seizures. Child I said, “It was cool to meet a kid my age that had a brother with seizures.”

These participants did not express feelings of guilt. Neither reported feeling guilty about not having the disability. They also did not feel that they were to blame for the disability. They knew it couldn’t be their fault to because they were born after their sister. They also reported not feeling guilty about having negative feelings toward their sister. It was explained at their Sibshop that it was ok to feel anger, frustration, or jealousy.

Some feelings of loneliness were expressed. Child H said that she felt comfortable talking to her mom when something was bothering her about her sister. She said that she had great friends too. They were accepting of her sister and were not scared to come over. Child H said her friends would invite her to play with them when they would come over. Child I was not as comfortable talking to his mom. He said he usually would talk to his dad, but since he his parents got a divorce he wasn’t around much to talk. He admitted to not bring friends over much. Sibshops also helped them in feeling not so alone. Meeting other sibs gave them more confidence. Child H said that it even helped her to be closer to her brother because they talk about their groups together. She reported that they went to different groups.

            Feelings of loss were expressed. They expressed a loss when they said that they couldn’t talk to their older sister like their friends can with their older sibling. They also feel like they are missing or had been missing out on family activities. It was always hard for them to go out as a family and do things. Now, with the divorce, Child H said it would be even harder.

            Feelings of frustration were present. Both had felt frustrated because they couldn’t have a “normal” relationship with their sister. It was frustrating to Child I that he had a hard time talking to his mom about his feelings. During Sibshops they met other kids that felt this way too. It was frustrating to both of them that their mom had to spend so much time with their sister. Both understood why, but still felt the unfairness. Especially because their sister was older and Child H said “We are younger and we need attention too!” They reported that Sibshops made them feel better about their situation because there they met other kids in the same position as them.

            Sometimes theses participants feel embarrassed. They reported to being embarrassed when their sister had a seizure in public. They also report to being embarrassed by the noises their sister make. People can be really rude sometimes.” Child H said as she was explaining that people would just stare at her sister if she were having a seizure in a store. This can really get on their nerves, but were understanding about it. During Sibshops they learned that they were not the only ones who have this experience and met others that have similar experiences.

            Both participants had some fear about what would happened to their sister in the future. Child H said she was really worried about it and had wanted to sit down with her mom with her brother present to talk about this. Even before Sibshops she wondered about her sisters future, but now she was even more concerned about it. Most kids she said there had wondered about their sibling’s future. Child H said at her group some things were discussed by the Sibshop leader about were some people with disabilities go to live and work when they get older or their parents can’t take care of them any more.

            These participants felt some anger and jealousy. Both admitted to feeling anger and being jealous because their mom has to spend so much time with their sister. Child H said it was also not fair that she has to do many of the chores around the house. She felt that she had many more chores to do then her brother and that he sister didn’t have any to do. Both participants said that they understood that their sister needs more attention then they do. Sibshops, they both said help them to be more excepting of the unequal treatment that they receive.

            They admitted to feeling resentful of the time their mom and dad before had to spend with their sister. They resented the fact that their sister did not have chores to do around the house. They are resentful because they don’t get to do other things like other families do because of their sister. At Sibshops they learned that they were not the only ones who felt this way and said that it made them feel a little better, but it still bothered them.

            Over identification did not seem to be a problem. Neither could ever remember thinking that they could catch the disability. Their mom did not report this as a problem either.

            Child H reported increased responsibilities. Child H said that sometimes she had to baby-sit for both of her siblings. Even for her older sister that didn’t make sense to her. Child H reported to having to do most of the work around the house and even had to help in cooking dinner. Her brother did not have to do anything other then pick up his room. Child I admitted to this as well.         

Pressures to achieve were not felt by either of the participants. Neither of them reported that they felt that their parents made them try extra hard in school either before or now. They both reported to not putting pressure on themselves to do well in school either. Both had after school activities, but had thought that they would have done these things even if their sister did not have a disability.

            At the end of the interview, they were asked if they enjoyed Sibshops. They both said they did. Child H said that she really like meeting other sibs and has stayed in touch with some still. She had hope to go to another one again soon. Child I said that he like meeting other kids too. He also liked playing games and even saw a play at one of his sessions. Both said they would recommend other siblings to go to Sibshops. It was also asked on a scale of 1-10 how they felt toward their sibling. Child H gave her sibling an 8 and Child I gave his sibling a 5.

 

 

 

 

 

Table 1: Group one (Siblings that did not participate in a group): concerns/issues, percentage, typical sibling reactions.

Concerns/issues		Percentage			Typical sibling reactions
Guilt   Loneliness   Loss     Frustration   Embarrassment   Fear   Anger/Jealousy   Resentment   Over Identification   Increase in Responsibility   Pressure to Achieve   Need for Information		55%   0%   88%     33%   88%   100%   33%   33%   0%   22%   44%   88%			Feeling guilty about being angry or frustrated toward their sibling. Feeling guilty about sibling having the disability.     Siblings did not claim to having feelings of loneliness     Siblings not having the same opportunities. Feeling a loss of their “normal” sibling. Loss of parental attention and doing things as a family.     Feeling frustrated at the unequal treatment and behaviors of their siblings.     Siblings are embarrassed about making noises, Looking different, acting strange, and when people stare     Siblings were worried about where their brother or sister would live, work, or go to school. They worried if they would have to take care of them   Siblings are angry or jealous about the unequal treatment and lack of attention they receive     Siblings are resentful of the unequal treatment, lack or family activities, and pressures to achieve     Siblings did not claim to have over identification problems     Claimed to put responsibility on themselves. It did not come from their parents     Some put pressure on themselves to do well in school. Others claimed that their parents expected them to do well. Some claimed the pressure came from themselves and their parents   Claimed to want to more about brother/sister’s disability and concerns about their future

 

 

 

Table 2: Group two (Siblings that did participate in a group): concerns/issues, percentage, and typical sibling reactions.

Concerns/issues		Percentage			Typical sibling reactions
Guilt Loneliness   Loss     Frustration   Embarrassment   Fear   Anger/Jealousy   Resentment   Over Identification   Increase in Responsibility   Pressure to Achieve     Need for Information		22% 0%   100%     100%   100%   100%   100%   100%   0%   22%   33%     100%			Feeling guilty about being jealous toward sibling.   Siblings did not claim to having feelings of loneliness     Siblings not having the same opportunities. Feeling a loss of their “normal” sibling. Loss of doing things as a family.       Feeling frustrated at the unequal treatment and attention. Missing out on their own activities because of sibling Feeling frustrated at trying to have a normal relationship.   Siblings are embarrassed about making noises, Looking different, acting strange, and when people stare.     Siblings were worried about where their brother or sister would live, work, or go to school. They worried if they would have to take care of them.   Siblings are angry or jealous about the unequal treatment, lack of attention they receive, and having to miss out on activities.   Siblings are resentful of the unequal treatment, lack of family activities, and attention.     Siblings did not claim to have over identification problems.     Claimed have a lot of responsibilities. Both were oldest sibling with out disabilities.     Some put pressure on themselves to do well in school. Others claimed that their parents expected them to do well. Some claimed the pressure came from themselves and their parents.     Claimed to want to more about brother/sister’s disability and concerns about their future.

Table 3: Group one: name, gender, age, disability, and feelings rating score           

Name	Gender	Age	Disability	Feelings rating
A	Female	13	Down Syndrome	9
B	Female	11	Down Syndrome	10
C	Female	11	Epilepsy and Schizophrenia	4
D	Female	7	Autism	5
E	Female	10	Autism	6
F	Female	15	Cerebral Palsy	8
G	Male	13	Cerebral Palsy	9
H	Male	10	Down Syndrome	10
I	Female	12	Cerebral Palsy	8

 

 

 

Table 4: Group two: name, gender, age, disability, and feelings rating score.

 

Name	Gender	Age	Disability	Feelings rating
A	Female	11	Cerebral Palsy	9
B	Male	10	Unspecified developmental disabilities	7
C	Male	8	Unspecified developmental disabilities	10
D	Male	11	Autism	8
E	Male	8	Autism	9
F	Female	11	Autism	6
G	Female	8	Autism	7
H	Female	11	Epilepsy and mental retardation	8
I	Male	7	Epilepsy and mental retardation	5

 

Discussion

The findings of this study appear to have in general supported the three initial hypotheses. Analyses of the interviews reveal that those siblings that attended groups had a more open and positive attitude toward their experience. Their concerns appeared to be more focused, their understanding and acceptance of the disability was more genuine, and there were signs of a more positive acceptance to their sibling with the disabilities, friends, and family relationships. Among the issues studied, the need for information about the possible future of their sibling appeared to be the one issue in both groups that generated the most concerns.

An examination of the issues/concerns revealed some significant differences between the two groups, but in other areas the contrast between them did not vary.

The sibling issues/concerns that had significant differences were guilt, frustration, anger/jealousy, and resentment (see table one and two). These findings were interesting because what was found among the group participants was not a decrease in these concerns, but an increase in group # 2, all except guilt. The reason for this seemed to be that the “Sibshops” helped children to be more open in their feelings. They were more easily able to express their feelings either positive or negative because in the groups they learned that it was appropriate to be frustrated, jealous, etc. It appears that they had opportunities to meet other children who felt the exact same way that they did.

In group # 1, guilt was lower then in group # 2. This appeared to be because since they were able to express their feelings more and had an understanding that is appropriate to feel the way they feel, their guilt feelings decreased. According to the review of literature when siblings have an opportunity to express their feeling, negative or positive, there is less likely the chance of psychological problems such as depression (Siegel and Silverstein, 1994).

The only siblings in group # 2 that said they had guilt feelings, reported that they feel jealous sometimes toward their sister. This makes them feel guilty. “We know we shouldn’t feel this way because our sister has so many problems.” They did report that at Sibshops they learned that it was appropriate to feel jealous. This in turn, they reported helped them to not feel quite as guilty.

In group #1, guilt feelings were more of an issue, but not significantly different then group # 2. Group # 1 reasons for feeling guilty revolved around having guilt feelings about being frustrated toward their sibling and that their sibling had a disability (see table 1.). When interviewing this group, they reported that they have positive relationships with their parents and felt that they could talk to them about anything. They reported to being able to express themselves not only to their parents, but their other sibling and friends. Group # 2 reported comparable concerns (see table 2.), but they also had others to express to who really know what it is “like to be in their shoes.”

Even though issues relating to frustration, anger/jealousy, and resentment were found different in the two groups, most children in both groups reported similar responses (see table 1 and 2). This can be explained because the presence of a sibling group cannot eliminate these feelings. They will probably always to some degree present these feelings. The difference that was found in group # 2 was that not only were they able to admit to these feelings, but also were expressive in talking about them. This group also reported that even though they feel frustration, anger/jealousy, and resentment, Sibshops, helped them to understand that is was normal to have these feelings. It also appeared to help them understand that they should not feel guilty about having these feelings.             An important finding was that it appears that siblings want more information about their brother or sister’s future. All siblings interviewed reported to needing more information about this. Their future was also reported as a fear. Many were worried about what the future was going to hold for them and their sibling with the disabilities. Many did not report to having a discussion about this with their parents even though they reported wanting to. According the review of literature when plans are not discussed for the future, siblings can become resentful of this (Richey and Wheeler 2000). Group #2 also reported not having discussed the future, but some of them were at least able to openly discuss this in their group. It appeared that it is important to many of these children that they discuss the future at some point in time with their parents and sibling groups need to be aware that this is an important topic to be discussed.

            Findings did not show a significant difference in male verses female or in age. Findings also did not show there to be a difference in the two groups in how sibling rated their feeling toward their brother or sister using the Likert scale (see table 3 and 4). It did however appear to be some slight differences in how siblings rated their sibling and the severity of the disability in group #1. According to the review of literature the severity of a sibling’s disabilities can play a factor on sibling relationships and adjustment (Powell and Gallagher, 1993).

There appears to be a need for further research on the effects of sibling groups on siblings without disabilities. Other areas of study should include how sibling groups affect differences of ages and gender. Studies might also focus on the effect of sibling groups on sibling’s psychological adjustment as well as difference in sibling disabilities. This information can assist parents, health care professionals, and “Sibshop” facilitators with pertinent knowledge that is necessary to provide appropriate services for siblings that have a brother or sister with a disability.

In the future studies like this should include larger populations as well as studying the group over a longer period of time. We might conclude more significant differences in siblings personal and emotional issues when we look at siblings that have attend more then one group. We might find more sibling issues that need to be discussed and conclude what the appropriate stage of development might be the best in which to discuss certain topics. In addition future studies should take a look at how groups that discuss future concerns affect siblings.

 

 

 

 

 

 

 

 

 

 

 

 

 

References

            Burton, S. L. & Parks, L. A. (1994) Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities. Social Work Research. 18. 178-185.

            Caro, P. & Derevensky, J. L. (1996). An Exploratory Study Using the Sibling Interaction Scale: Observing Interactions between Siblings with and without Disabilities. Education and Treatment of Children. 20, 383-403.

            Dyson, Lily L. (1998). A Support Program For Siblings Of Children With Disabilities:

What Siblings Learn And What They Like. Psychology in the Schools. 35, 57-65.

            Dyson, Lily L. (1996). The Experiences Of Families Of Children With Learning Disabilities: Parental Stress, Family Functioning, and Sibling Self-Concept. Journal of Learning Disabilities. 29, 280-286.

            Edmundson, Kathryn (1985). The “Discovery” of Siblings. Mental Retardation. 23, 49-51.

            Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., and Szatmari, P. (1996). Risk and Protective Factors Affecting the Adjustment of Siblings of Children with Chronic Disabilities. Journal of American Academy of Child and Adolescent Psychiatry. 35, 1532-1541.

            Harris, Sandra L. (1994) Siblings of Children with Autism: A Guide for Families. Bethesda, MD: Woodbine House.

Klein, S. D., and Schleifer, M.J. (1993). It Isn’t Fair!: Siblings of Children with Disabilities. West Port, CT: Greenwood Publishing Group, Inc.

Lobato, Debra J. (1990). Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children with Chronic Illness and Developmental Disabilities. Baltimore: Paul H. Brookes Publishing Co.

Meyer, D. J., Vadasy, P. F., and Fewell, R.R. (1985). Living with a Brother or Sister with Special Needs: A Book for Sibs. Seattle: University of Washington Press.

Meyer, D. J., and Vadasy, P. F. (1994). Sibshops: Workshops for Siblings of Children with Special Needs. Baltimore: Paul H. Brookes.

Powell, T. H., and Gallagher, P.A. (1993). Brothers and Sisters A Special Part of Exceptional families. Baltimore: Paul Brookes Publishing.

Powell, T. H., and Ogle, P. A. (1985). Brothers and Sisters A Special Part of Exceptional families. Baltimore: Paul Brookes Publishing.

Richey, Dean and Wheeler, John J. (2000). Inclusive Early Childhood Education. Albany, New York: Delmar Publishers.

Siegel, Bryna and Silverstein, Stuart. (1994). What About Me? Growing Up With a Developmentally Disabled Sibling. New York: Plenum Press.

Stoneman, Z. and Berman, P. W. (1993). The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships. Baltimore: Paul Brookes Publishing.

           

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

APPENDEX A

THE SIBSHOP MODEL

The Sibshop Model

 

Sibshops seek to provide brothers and sisters of children with special health and developmental needs with opportunities for peer support and education. During Sibshops, information and discussion activities are planned to help siblings better understand disabilities and cope with the ambivalent feelings they may have toward their brothers or sister with special needs. The informational activities are interspersed with lively recreational activates, including “New Games” (games designed to be unique, slightly off-beat, and appealing to a wide ability range), cooking activities, an special guests that may include an artist with a disability, a physical therapist, or a physician.

 

All Sibshop activities are designed to accomplish the following goals:

 

Goal 1: To provide brothers and sisters of children with special needs with opportunities to meet other sibling in a relaxed, recreational setting.

 

Goal 2: To provide brothers and sisters with an opportunity to discuss common joys and concerns with other siblings.

 

Goal 3: To provide brothers and sisters with an opportunity to learn how others handle situations commonly experienced by siblings of children with special needs.

 

Goal 4: To provide siblings with an opportunity to learn more about the implications of their brothers’ and sisters’ special needs.

 

Goal 5: To provide parents and service providers with an opportunity to learn more about common concerns of broths and sisters.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

APPENDIX B

 

LETTER TO PARENTS EXPLAINING RESEARCH STUDY

National-Louis University

18 South Michigan Ave

Chicago, Illinois 60603

 

 

 

 

Dear Parents:

 

My name is Tara Dutkovich and I am a graduate student at National Louis University and I am asking your assistance with the completion of my thesis. I am studying siblings who have brothers and/or sisters with disabilities. My thesis is a comparison of siblings who have attended groups such as Sibshops with those who have not attend any groups.

 

I am interviewing children between the ages of seven and fourteen. The interview would be conducted in your home and will be arranged around your schedule. Each interview will take about an hour to complete. All the information I would receive during the interview would be confidential. The questions I will be asking will focus on trying to understand the needs and concerns of siblings. In addition, I am looking for differences that might exist between those siblings who have attended sibling groups such as Sibshops.

 

Sibshops are for children that have a brother or sister with a disability. The purpose of this group is to give children opportunities to meet other children shoes brother or sister has a disability. Sibshops give these children an opportunity to talk about their brother or sister with others who really know what is like to have a sibling with a disability. These groups also give children an opportunity to learn more about disabilities and the services their sibling receive. Most important, Sibshops are great opportunities for kids to have a lot of fun!

 

If your and your child are willing to participate in a interview or if you need further information, please call Vivian Oliva at Community Support Services to schedule an interview. Her phone number is (708) 354-4547.

 

This study is important to me both professionally and personally. I have a sibling with severe disabilities. Sibling concerns and triumphs are important for all of us to understand as we try to support each family member.

 

Thank your for your help! I look forward to hearing from you.

 

Sincerely,

 

 

 

Tara Dutkovich

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

APPENDIX C

INFORMED CONSENT USED FOR THE PURPOSE OF RESEARCH

Informed Consent

 

I ________________________________________ understand that the information used in this interview will be used for the sole purpose of learning more about siblings with a brother or sister with a disability and their issues/concerns. I have been informed that the interview will take approximately 1 hour and will be an open discussion about my child(ren)’s relationship with their brother/sister with disabilities. I understand that all my child(ren)’s responses will be used in the study, but their identity will be confidential. I also understand that I can ask any questions about this study before and after the interview. The researcher can be contacted at 708-354-4547.

I have read the about statement and agree to have my child participate in this study.

 

________________________________                                            ____________________

Parent                                                                                                  Date

 

________________________________                                            ____________________

Researcher                                                                                           Date