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Stanley D. Klein
"A very useful book. In addition to a thorough review of sibling literature and research, it offers a wide range of 'how-to' practical applications."
There is something unique, something special, about growing up in a family in which a brother or sister has a disability. The new edition of this important text examines these unique relationships and discusses research on and strategies for working with siblings of people with disabilities. The reader-friendly volume appeals both to faculty at teaching and research institutions and to family members and practitioners who work with people with disabilities. Included in the new edition are updates to critical issues such as multicultural considerations, financial planning, and information on genetics and heredity. In addition, the book provides an extended focus on family members beyond parents, including grandparents and other extended family members who interact with siblings in their relationships within a family
Excerpted from Chapter 9 of Brothers and Sisters: A Special Part of Exceptional Families, Third Edition, by Peggy A.Gallagher, Ph.D., Thomas H. Powell, Ed.D.,& Cheryl A. Rhodes, M.S., L.M.F.T.
Copyright © 2006 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
The school-age period for siblings may be the most intense in terms of their special needs. Itzkowitz (1989) found that during this period, siblings had the greatest needs for information and support services regarding their brothers' and sisters' disabilities. Because siblings spend much of their time in school, it is the logical setting for the provision of support services. The school, therefore, has a special responsibility for addressing those needs.
SPECIAL EDUCATION LAWS AND REGULATIONS RELATED TO EDUCATION
The Individuals with Disabilities Education Act (IDEA) Amendments of 1997 (PL 105-17), reauthorized as the Individuals with Disabilities Education Improvement Act of 2004 (PL 108-446), and The Americans with Disabilities Act (ADA) of 1990 (PL 101-336) are two federal laws that define and protect the rights of children with special needs with regard to access to education and participation in community programs such as child care. The trend toward inclusion in service delivery means that a child with a disability will most likely attend the same school and after-school program as siblings without disabilities.
The Individuals with Disabilities Education Improvement Act of 2004
Turnbull, Turnbull, Erwin, and Soodak (2006) identified six key principles that govern the education of students with disabilities: 1) zero reject (no school may exclude a student age 3 through 21 who has a disability.); 2) nondiscriminatory evaluation (to deter- mine whether a student has a disability and if so the type of support needed); 3) free appropriate public education or FAPE (public education programs will be individualized to meet students needs and strengths); 4) least restrictive environment or LRE (students with disabilities must receive education in general education classes with their peers without disabilities to the maximum extent appropriate to the needs of that child, often referred to as inclusion or mainstreaming); 5) procedural due process (professionals and parents should be accountable to each other); and 6) parent participation (parents and students should participate in making decisions about a student's education). IDEA grants parents the rights to gain access to educational records and to serve on local special education advisory committees.
Unless a child's individualized education program (IEP) requires some other arrangement, the child is to be educated in the (local) school that he or she would attend if the child did not have a disability. Even for students with the most severe disabilities, the local school tends to be the least restrictive setting (Brinker, 1984; Lipsky & Gartner, 1992; Stainback & Stainback, 1992). The law mandates that a child should not be moved from education in age-appropriate regular classrooms solely because of needed modifications in the general curriculum. This policy extends to the provision of nonacademic and extracurricular services and activities, including meals, recess periods, and the services and activities. For more information go to IDEA 2004 Resources (U.S. Department of Education http://www.ed.gov/policy/speced/guid/idea2004 .html) or IDEA Law and Resources (Council for Exceptional Children http://www.cec.sped.org/law_res/law/index.php).
The Americans with Disabilities Act of 1990
ADA is a comprehensive, federal civil rights law that prohibits discrimination on the basis of disability. The ADA defines disability as a physical or mental impairment that substantially limits one or more major life activities (i.e., working, talking, hearing, seeing, caring for one's self). There are five titles within the ADA including Employment (Title I); State and Local Governments (Title II); Places of Public Accommodation (Title III); Telecommunications (Title IV); and Miscellaneous Provisions (Title V). Businesses, nonprofit agencies, and commercial facilities that serve the public such as private schools, recreation centers, private child care centers, restaurants, hotels, movie theaters, and banks must comply with Title III of the ADA. Child care services provided by government agencies such as Head Start, summer programs, and extended school day programs must comply with Title II of the ADA. Both Title II and Siblings at School o 235 Title III prohibit exclusion, segregation, and unequal treatment on the basis of disability. For example, a child care center must take reasonable steps to integrate a child with disabilities into every activity provided to others. If other children are included in group activities or field trips, children with disabilities should be included as well. Segregating children with disabilities at child care centers is not acceptable under the ADA (U.S. Department of Justice, n.d.).
Opportunity for Inclusion
Families consistently report a desire for choice regarding the educational settings for their children with special needs. When given the opportunity, to the extent possible, most families seem to choose some form of inclusion. Some parents' decisions are based on future goals and some on past experience. Kathy, for example, is passionate about wanting her son Mitch to be included. Her perspective as an adult sibling influences her goals as a parent. "When I was 5, my older brother, Albert, (age 8) was shot in the head, survived, and was never the same. Being the 1960s, not a lot was known about brain injuries, so he was in and out of institutions most of his life. When he would come home to 'visit,' we didn't really know him. He never quite felt like a member of our family. He never quite fit in. Thirty years later, when my son, Mitch, was born with Down syndrome, I vowed to make sure he was always a part of our family, allowing him the same opportunities as his older sister. When school begins this fall, he will be in a 'regular' kindergarten class at the same school as his sister, just as he would have been had he been born 'normal.' I've had to stay active as his advocate to make sure he could stay in a classroom with his peers. Because I've seen the results of someone being excluded from our society because he isn't 'normal,' I know that's not what I want for my son. He deserves a chance just like every other child. It just takes him a little longer to learn." —K. Dillon, personal communication, May 20, 2005
When a child with a disability enters school for the first time, it poses a potential crisis for the entire family. This is typically the first time the child has been forced to interact with others without the constant protection of parents and siblings. Parents are naturally worried about whether the child will benefit from these opportunities for interaction and from the school experience in general. Will the child be accepted by teachers and other children? Will he or she be able to participate in class activities? Parents are often concerned about their role in preparing the child for school and may worry about how their child will handle new situations and adults.
Likewise, siblings also have a number of special concerns about their brother or sister attending school. How will the brother or sister's attendance at school affect the sibling? Will the others accept the child? Will there be teasing? These special concerns need to be addressed by professionals in order to ensure that the school experience is positive for all of the children. A number of specific sibling concerns are examined in more detail next.
Competition is healthy in most cases, especially when both children have an opportunity to excel in different areas. However, competition becomes unhealthy when only one child is recognized, when one sibling is continually dominant, or when one receives all of the attention. When one child has a disability, competition will most likely favor the sibling without the disability. Unfair competition may result in the child with the disability experiencing extraordinary feelings of jealousy and anger toward a brother or sister. Competition should, of course, be limited. Grades and other school achievements should not be compared. Each child should be recognized for his or her unique accomplishments.
"Each of my boys entered the Reflections contest at their schools. Rico wrote an essay, Ryan took pictures, and Rey drew a picture; they each won at the school level in different categories. At the district ceremony, they were all there with their awards. Ryan's was not judged separately; nowhere on his entry did it say 'autism, IEP student, or special needs.' They were really excited for each other." —S. Ramirez, personal communication, May 23, 2005
The "Brother's Keeper"
Many siblings worry that they will be expected to help care for their brother or sister at school as they do at home (Michaelis, 1980). Indeed, some siblings are asked to serve as caregivers for the child at school. They are asked to travel with the child, carry messages, keep assignments, interpret the child's communication, and even help instruct the child. This "'brother's keeper" role may impinge unfairly upon siblings' freedom. It may keep a sibling from informal, yet important, social interactions with friends. School may provide the one opportunity for a sibling to have some needed respite from the necessary caregiving that Siblings at School o 237 must be performed at home. Expecting the sibling to perform similar caregiving activities at school can unduly burden the sibling with additional responsibilities
Siblings often worry about the reactions their school friends and peers will have to their brother or sister with a disability. In some cases, siblings may not have told their friends about their brother or sister. They may be concerned that their friends will reject them if they are too closely associated with the child. Some siblings also worry about the child's relationship with other children. Many siblings are concerned about how other children will treat their brother or sister with a disability. The reactions and acceptance of friends can contribute greatly to sibling adjustment. "What helped me the most was the acceptance of my own friends. I didn't mind talking to them about Corrie and her school; I willingly answered questions and explained what Down syndrome was" —F. Last, personal communication, May 25, 2005.
Even in the best school situations, children with disabilities often experience teasing by other children. The most typical teasing situations are name-calling, ridicule, or putdowns (Freedman, 2002). The nature and intensity of such teasing may vary, and depends on the children's ages, the climate of the school, and the attitude of the teachers and administrators. Siblings are often concerned about teasing and how they should handle it. Naturally, it is difficult for a sibling to hear jokes and rude remarks about a brother or sister. How should the sibling handle such teasing? Is it best to ignore it, respond with anger, join in, or report it to teachers and parents? How can the sibling defend his or her brother or sister and, at the same time, not risk rejection by peers? How the school handles the teasing affects siblings. What may work in one situation will not in another.
"One day, Anna came home from the after-school program she and her sister attended. Anna witnessed three boys making fun of Lily, which upset her. She told me that she explained to them about Lily's disability but they continued to tease her. Once I brought this up to the after-school program teachers, the problem was quickly resolved." —L.von Schmeling, personal communication, May 25, 2005
Teasing can get worse as middle school approaches, when students become very concerned about being perceived as different and not fitting in. A sibling whose brother or sister was successfully included for years in elementary school may suddenly experience teasing in middle school. When asked about teasing, Donya, age 12, the younger sister of Elijah, who has autism, noted, "In elementary you weren't allowed to make fun of special needs kids but in middle school the teachers don't do anything about it." -J. Graves, personal communication, May 23, 2005 Similarly, teasing may result from unanticipated changes at school. "Lily had been attending our neighborhood school for 3 years and was well-known and loved. What I did not see coming was that the kids in Anna's grade level, the new students who did not know Lily, would be the potential problem." —L. von Schmeling, personal communication, May 25, 2005
Most siblings react very negatively to hearing their friends or classmates use the word retarded, even if it was not used in regard to their brother or sister. They need to learn how to let others know in a direct and clear way that this language is hurtful and unacceptable. Some siblings ignore teasing, whereas others use humor to defuse it. Sometimes a straightforward answer works best: "You're right. She does have mental retardation. So what? All that means is that her brain doesn't work the way yours or mine does, but she's really smart in other ways."
The most effective way to deal with teasing is for schools to create a climate of acceptance to truly become places where all children are welcome and diversity is celebrated. Demystifying special education and discrediting stereotypes will happen over time in such an environment. As discussed below, the behavior and attitudes of educators along with a clear school policy can influence students' behavior. Parents can take steps to prepare siblings for the inevitable hurt feelings. When children learn effective strategies they can use in teasing situations, their coping skills are strengthened (Freedman, 2002). It is important to recognize that teasing is a problem for many children, with and without disabilities. Programs and materials are available for teachers and parents that would certainly benefit all students, including siblings. One example is a program called Quit It! (Froschl, Sprung, & Mullin-Rindler, 1998), which is composed of teacher-initiated and classroom curriculum-based trainig and support materials. Ten lessons focus on three sequential themes. The accompanying guide for parents offers practical suggestions for promoting friendship and empathy; and it includes a selected bibliography about teasing and bullying. Another example is Sticks and Stones, Siblings at School o 239 a web-based activity that includes Internet resources on teasing and bullying (http://www.berksiu.k12.pa/us/webquest/Burkhardt/).
Siblings Attending the Same School
When children with disabilities attend the same school as their brothers or sisters who are typically developing, the situation carries the potential either to increase problems for siblings or to help siblings to see their brother of sister as a valued and contributing member of the school community. "This past school year, the art teacher sponsored 'Art by people with disabilities.' Artwork by several students with disabilities, including Lily, was on a prominent wall right outside the cafeteria. Lily's name was also listed on the wall with her classmates for achieving honor roll all year long. Anna and Max were again able to witness that Lily is a full member of the school just as they are. Anna's name is posted on the wall for reading a certain number of books. While Lily's name may never be posted there, she is recognized for other achievements. Their school does a nice job of recognizing a variety of skills by students rather than only focusing on academics. It is important to note that it is not just Lily's siblings who notice this; it is also the other students who see that Lily achieved some honor. All of this provides for a school environment that is accepting of all people and diverse abilities." —L. von Schmeling, personal communication, May 25, 2005
Some siblings do not want to be at the same school as their sibling with special needs, preferring to "be my own person." Although influenced by a variety of factors, it is important to remember that siblings who are not typically developing might express a similar preference. A unique perspective is that of twins and multiples. Schools need to examine their policies regarding twins in which one has a disability. Many times schools require twins to be separated even though parents and siblings' preference is to stay together. One mother became frustrated by the school's repeated attempts to place her 10-year-old twins, Luke and Emily, in different classes.
"They don't understand that they are twins and regardless of his disability, they are going to be together. That's part of that twinship. It's just there." —E. Spaugh, personal communication, May 24, 2005
Some schools have a policy of not placing twins in the same class. For some siblings, the negative impact of this policy can outweigh the positives. Conversely, when the twin does not want to be in the same class or school as the other, that preference also deserves consideration. Schools need to recognize that the unique bond reported by twins exists for twins of children with disabilities
Other Special Situations
In addition to these five major concerns, some special situations may cause added worries:
The "Mysterious" Special Education Program
Siblings' knowledge of the special education program at the school may be limited. Depending on the school and the structure of the special education services, the classroom for students with disabilities may have a positive or negative reputation. In some situations, the special education program may consist of a resource room, and in others, a highly specialized self-contained classroom. Siblings may wonder what the child will experience in the room and how his or her education will differ from their own. The special education program typically contains special equipment and materials that may puzzle siblings and, at first appearance, may be frightening. Finally, special education programs are frequented by a full cadre of professionals such as physical therapists, recreational specialists, psychologists, counselors, and social workers. Siblings, like other children who are not directly involved in special education, may be curious as to what these professionals do in school, especially with regard to their brothers or sisters.
Separate versus Inclusive
Segregated educational programs are rapidly becoming a service delivery model of the past as more and more children are being welcomed to inclusive public schools. For some children, this transition from separate to inclusive means full participation in general education classes and activities, whereas others may remain in self-contained classes in public schools. Sibling adjustment may be different depending on whether their brother or sister is served in a "mysterious special education class" or a class with typical peers. Siblings, especially, may have adjustment problems and special concerns when their brother or sister suddenly begins to attend their school. The student with the disability, who may be accustomed to the social environment of a separate school, may initially have difficulty adjusting to the environment of an inclusive public school. Naturally, siblings' concerns may be intensified during this period. Special measures to help prepare siblings for these changes may be needed.
Younger Siblings in Class with Older Siblings
Special concerns arise when an older brother or sister with a disability is placed in the same classroom with younger siblings. In some cases, the student with a disability is retained a year or attends remedial subjects in a lower grade, which is also attended by a younger brother or sister. Increased competition in terms of grades, friends, and teacher recognition between the siblings may be one result of this arrangement. Both siblings may also find it more difficult to establish independent identities since they are together for a major part of the day.
|1||Listening to siblings||1|
|2||What we know about sibling relationships||13|
|3||What we know about special brothers and sisters in the family system||53|
|4||Concerns and needs of siblings living with brothers and sisters with disabilities||97|
|5||Providing information to children with siblings with disabilities||111|
|6||Providing support of siblings with brothers and sisters with disabilities||143|
|7||Social interaction between brothers, sister and others : how relationships are formed and maintained||177|
|8||Siblings as teachers||205|
|9||Siblings at school : going beyond academics to support siblings' unique needs||231|
|10||Siblings as adults : building secure futures||255|
|11||Capstone strategies for parents and siblings||279|