Brothers and Sisters: A Special Part of Exceptional Families, Third Edition - Softcover

Gallagher Ph.D., Peggy; Powell Ed.D., Thomas; Rhodes "M.S. LMFT LPC", Cheryl

9781557667199: Brothers and Sisters: A Special Part of Exceptional Families, Third Edition

Softcover

ISBN 10: 1557667195 ISBN 13: 9781557667199

Publisher: Brookes Publishing, 2006

A brother or sister is usually the first close friend and playmate a child has — and when that child has a disability, the sibling relationship takes on new meaning and importance.

In the third edition of this classic resource, families and professionals will deepen their understanding of sibling relationships and learn how to support positive, lifelong bonds between brothers and sisters. Readers will get specific ideas, illuminating research, ready-to-use strategies, and personal anecdotes from siblings to help them

give siblings accurate, age-appropriate information about their brother or sister's disability
conduct effective sibling workshops, counseling sessions, and community programs
facilitate positive interactions between siblings at home and at school
encourage siblings to act as teachers for their brothers and sisters
help adult siblings deal with their concerns and emotions

Reflecting the dramatic advances in research in the 10 years since the second edition was published, this book gives readers the most up-to-date information on genetics and heredity, expanded discussion of multicultural issues and financial planning, and an extended focus on family members beyond parents, including grandparents and other extended family members who interact with siblings. Brimming with inspiring stories, facts and wisdom from the literature, and practical advice to share with parents, this book will help you and the families you work with understand and celebrate the special bond between siblings.

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About the Author:

In addition to teaching and serving as Chair of the Department of Educational Psychology and Special Education at Georgia State University in Atlanta, Peggy A. Gallagher coordinates the Early Childhood Special Education program and also directs Project SCEIs (Skilled Credentialed Early Interventionists), a collaborative between six universities as part of Georgia�€™s Part C Early Intervention Program, to develop statewide training for parents and professionals. She holds a doctorate in special education from the University of North Carolina at Chapel Hill. Dr. Gallagher has extensive training and experience in working with families of young children with disabilities and in developing personnel preparation systems. Early in her career, as a teacher of young children with special needs, Dr. Gallagher became interested in sibling relationships as she got to know her students�€™ brothers and sisters. Subsequently, she co-founded the Sibling Information Network in 1981 with one of her co-authors, Dr. Thomas H. Powell. She and her husband Kevin are the parents of two teenagers. Thomas

Prior to his appointment as President of Mount Saint Mary�€™s University, Thomas H. Powell was President of Glenville State College in Glenville, West Virginia. Dr. Powell has served as Dean of the College of Education at Winthrop University in Rock Hill, South Carolina, and Dean of the College of Education and Human Services at Montana State University— Billings. He received his doctorate in special education from Peabody College of Vanderbilt University. Powell founded the SiblingInformation Network with Peggy A. Gallagher. He also is the founding director of the University of Connecticut�€™s University Affiliated Program on Disabilities. He and his wife Irene have three children.

Cheryl A. Rhodes is a licensed marriage and family therapist and a licensed professional counselor with expertise in working with families of children with disabilities. She holds a master�€™s degree in counseling from City University of New York�€“Brooklyn College. Ms. Rhodes has been a trainer, project director, consultant, and counselor for more than 25 years. She has designed programs and conducted support groups for siblings of children with disabilities and for grandparents rearing grandchildren with disabilities. She is involved in initiatives for families of children with disabilities at the state and national levels and serves as Chair of the Family Consortium for the Division for Early Childhood of the Council for Exceptional Children. She has worked with Georgia�€™s early intervention program since the mid-1990s. She is the parent of three children, two daughters and a son, ages 22, 20, and 18. Her younger daughter acquired a disability at age 13 months.

Don Meyer, M.Ed., Director, Sibling Support Project, 6512 23rd Avenue NW, Seattle, Washington 98117

Don Meyer is the director of the Sibling Support Project, a Seattle-based national project dedicated to the lifelong concerns of brothers and sisters of people with special health, developmental, and mental health concerns. A sought-after speaker, Don has conducted workshops on sibling issues and trainings on the Sibshop model in all 50 states and in seven countries. He is the editor of The Sibling Slam Book: What It�€™s Really Like to Have a Brother or Sister with Special Needs (Woodbine House, 2005), Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs (Woodbine House, 1997), and Uncommon Fathers: Reflections on Raising a Child with a Disability (Woodbine House, 1995). With Patricia Vadasy, Mr. Meyer wrote Living with a Brother or Sister with Special Needs (University of Washington Press, 1996). His work has been featured on ABC News and National Public Radio and in Newsweek, The New York Times, and The Washington Post. Don is married to Terry DeLeonardis, a special education preschool teacher and consultant. They have four children.

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.

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

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

Friends

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.

Teasing

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 training 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 an...

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