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Siblings of Children with Disabilities (April 2002)

How are children affected by having a brother or sister with a disability? What support can be provided to siblings of students with disabilities?

In the United States, over 5.8 million children have disabilities. Most have brothers and sisters. Throughout their lives, these brothers and sisters will share many— not most— the same concerns that parents of children with special needs experience, as well as issues that are uniquely theirs. These concerns are well known to their parents and have been documented in the research and clinical literature. Among the concerns mentioned by authors, parents, and siblings themselves include: feelings of isolation, guilt, resentment, perceived pressure to achieve, increased caregiving demands, and concerns about their role in their sibling's future.

A short list of opportunities observed by parents and brothers and sisters could include: the insights a sibling will have on the human condition: the maturity many brothers or sisters develop; the pride brothers and sisters report in their sibling's abilities; the loyalty brothers and sisters display toward their siblings and families; and the appreciation many brothers and sisters have for their good health and own families.

Below are suggestions for parents and service providers to minimize siblings' concerns and maximize their opportunities:

  • Provide brothers and sisters with age-appropriate information. Most brothers and sisters have a life-long, and ever-changing need for information. Parents and service providers have an obligation to proactively provide siblings with helpful information. Agencies representing specific disabilities and illnesses should be challenged to prepare materials specifically for young readers.
  • Provide siblings with opportunities to meet other siblings of children with special needs. For most parents, the thought of "going it alone," without the benefit of knowing another parent in a similar situation is unthinkable. Yet, this happens routinely to brothers and sisters. Sibshops and similar efforts offer siblings the same common-sense support that parents value. They let brothers and sisters know that they are not alone with their unique joys and concerns.
  • Encourage good communication with typically developing children. While good communication between parent and child is important, it is especially important in families where there is child with special needs. An evening course in active listening can help improve communication among all family members.
  • Encourage parents to set aside special time to spend with the typically developing children. Children need to know from their parents' deeds and words that their parents care about them as individuals. When parents carve time out of a busy schedule to grab a bite at a local burger joint or window shop at the mall with the typically developing child, it conveys a message that parents "are there" for them as well.
  • Parents and service providers need to learn more about siblings' experiences. Sibling panels, books, newsletters and videos are all excellent means of learning more about sibling issues. A bibliography is available from the Sibling Support Project.
  • Encourage parents to reassure their typically developing children by planning for the future of the child with special needs. Early in life, brothers and sisters worry about what obligations they will have toward their sibling in the days to come. Parents should be encouraged to plan for the future and share these plans with their children. When brothers and sisters are "brought into the loop" and given the message that they have their parents' blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation.

(Excerpted from Meeting the Unique Concerns of Brothers and Sisters with Special Needs by Donald Meyer, available on the web at http://www.thearc.org/siblingsupport/meetingtheconcernsof....htm)

Following are links to related Internet resources and Internet discussion groups, as well as selected citations from the ERIC database and the search terms we used to find the citations.


You can search the ERIC database yourself on the Internet through either of the following web sites:

ERIC Citations

The full text of citations beginning with an ED number (for example, EDxxxxxx) is available:

  • In microfiche collections worldwide; to find your nearest ERIC Resource Collection, point your web browser to: http://ericae.net/derc.htm.
  • For a fee through the ERIC Document Reproduction Service (EDRS): http://edrs.com, service@edrs.com, or 1.800.443.ERIC. (no longer available)

The full text of citations beginning with an EJ number (for example, EJxxxxxx) is available for a fee from:

ERIC Search Terms Used

siblings or sibling relationship

AND

disabilities

EJ614767 EC626000
The Responsibilities of Adult Siblings of Adults with Dual Sensory Impairments.
Harland, Penelope; Cuskelly, Monica
International Journal of Disability, Development and Education, v47 n3 p293-307 Sep 2000
ISSN: 1465-346X
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJAPR2001
A study explored responsibilities and concerns of six young adults in relation to their brother/sister with vision and hearing disabilities. Although mothers were the primary care takers, siblings played an important, secondary role. Siblings expressed guilt about being unable to take a more active role and were aware of future demands.
Descriptors: *Attitudes toward Disabilities; Caregiver Child Relationship; *Coping; *Family Relationship; *Hearing Impairments; Mothers; *Siblings; Social Support Groups; *Visual Impairments; Young Adults

EJ608061 EC625002
Sibling Relationships and Parent Stress in Families of Children with and without Learning Disabilities.
Lardieri, Leigh A.; Blacher, Jan; Swanson, H. Lee
Learning Disability Quarterly, v23 n2 p105-16 Spr 2000
ISSN: 0731-9487
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJDEC2000
Parents (N=67) and siblings (N=71) of children with and without learning disabilities (LD) and/or behavior problems were interviewed. The primary indicator of the impact of a child with LD on siblings and parents was whether the child also had behavior problems. Results also indicated that LD children and siblings differed in perceptions of sibling relationship quality.
Descriptors: *Behavior Problems; Family Problems; Interpersonal Relationship; Interviews; *Learning Disabilities; *Parent Attitudes; *Siblings; *Stress Variables

ED441561 PS028539
Burdened Children: Theory, Research, and Treatment of Parentification.
Chase, Nancy D., Ed.
Pages: 199
Date: 1999
ISBN: 0-7619-0764-5
Availability: Sage Publications, 2455 Teller Road, Thousand Oaks, CA 91320 (paperback: ISBN-0-7619-0764-5, $24.95; hardcover: ISBN-0-7619-0763-7, $52.95). Tel: 805-499-0721; Fax: 805-499-0871; e-mail: order@sagepub.com; Web site: http://www.sagepub.com.
Document Type: Book (010); Collected works--General (020)
Journal Announcement: RIENOV2000
Parentification is defined as compelling children to perform the role of parent at the expense of their own developmentally appropriate needs and pursuits. This book presents a comprehensive study of parentification in the family, covering both theoretical and clinical topics. Part 1 of the book details research related to parentification and gender, work addiction, families with a disabled or ill child, and assessment for clinical or research purposes. Part 2 takes a clinical or contextual emphasis and addresses varied interventions and theoretical orientations. The chapters are: (1) "Parentification: An Overview of Theory, Research, and Societal Issues" (Nancy D. Chase); (2) "Cross-Sex and Same-Sex Family Alliances: Immediate and Long-Term Effects on Sons and Daughters" (Deborah Jacobvitz, Shelley Riggs, and Elizabeth Johnson); (3) "Workaholic Children: One Method of Fulfilling the Parentification Role" (Bryan E. Robinson); (4) "Parentification of Siblings of Children with Disability or Chronic Disease" (Suzanne Lamorey); (5) "Assessing Childhood Parentification: Guidelines for Researchers and Clinicians" (Gregory J. Jurkovic, Richard Morrell, and Alison Thirkield); (6) "Object Relations Therapy for Individuals with Narcissistic and Masochistic Parentification Styles" (Marolyn Wells and Rebecca Jones); (7) "Therapeutic Rituals and Rites of Passage: Helping Parentified Children and Their Families" (Helen W. Coale); (8) "Trauma, Invisibility, and Loss: Multiple Metaphors of Parentification" (Bruce Lackie); (9) "Parentification in the Context of the African American Family" (Louis P. Anderson); and (10) "The Archetype of the Parentified Child: A Psychosomatic Presence" (Paula M. Reeves).
Descriptors: Black Youth; *Child Role; *Children; Chronic Illness; Cultural Influences; Disabilities; Family Life; Family Relationship; Intervention; Outcomes of Treatment; *Parent Child Relationship; *Parent Role; *Parents; Theories; Therapy

EJ591279 EC623061
Competence and Adjustment of Siblings of Children with Mental Retardation.
Hannah, Mary E.; Midlarsky, Elizabeth
American Journal on Mental Retardation, v104 n1 p22-37 Jan 1999
ISSN: 0895-8017
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJMAR2000
This study compared the adjustment and competence of 100 children and adolescents, half of whom were siblings of individuals with mental retardation. Although there were no overall differences for internalizing disorders, externalizing disorders, self-esteem, and competence, boys with a mentally retarded sibling had more difficulty in school functioning and girls with a mentally retarded sibling expressed their distress through internalization.
Descriptors: Adolescents; Children; *Emotional Adjustment; Emotional Disturbances; Incidence; Mental Health; *Mental Retardation; *Sex Differences; *Siblings

EJ562292 CG551905
A Support Program for Siblings of Children with Disabilities: What Siblings Learn and What They Like.
Dyson, Lily L.
Psychology in the Schools, v35 n1 p57-65 Jan 1998
ISSN: 0033-3085
Document Type: Journal articles (080); Reports--Descriptive (141)
Journal Announcement: CIJOCT1998
Surveys reactions and preferences related to a support program for siblings (N=40) of children with disabilities. Results identified the benefits participants received from the program and the different components participants preferred, such as favored recreational activities. Suggests the clinical utility of the program for school personnel planning.
Descriptors: Children; *Disabilities; Elementary Education; *Family Programs; Program Descriptions; Program Effectiveness; *Sibling Relationship; *Siblings Identifiers: Sibling Attitudes

EJ563937 EC618775
An Exploratory Study Using the Sibling Interaction Scale: Observing Interactions between Siblings with and without Disabilities.
Caro, Patricia; Derevensky, Jeffrey L.
Education and Treatment of Children, v20 n4 p383-403 Nov 1997
ISSN: 0748-8491
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJNOV1998
The Sibling Interaction Scale (SIS), an observational tool, was employed to investigate the interactions between 52 siblings (ages 1-20) with and without disabilities. Differences between nondisabled/disabled sibling pairs were found in the complexity of their sentences, the interpretation of the behaviors, and the roles they engaged in.
Descriptors: Adolescents; Children; *Disabilities; Evaluation Methods; *Interpersonal Communication; Interpersonal Competence; *Role Perception; *Sibling Relationship; *Siblings; Test Reliability; Test Validity

EJ554009 EC617908
Connecting with Siblings.
Cramer, Sharon; Erzkus, Alan; Pope, Kim; Roeder, Jean; Tone, Tracy; Mayweather, Karen
TEACHING Exceptional Children, v30 n1 p46-51 Sep-Oct 1997
ISSN: 0040-0599
Document Type: Journal articles (080); Reports--Descriptive (141)
Journal Announcement: CIJAPR1998
Discusses findings of a survey of siblings who have brothers or sisters with disabilities, and the development of support meetings, a resource library, and "Sibling Day" to help siblings. The responses of siblings to various scenarios and a staff worksheet for activities for Sibling Day are provided.
Descriptors: Adolescents; Children; *Class Activities; *Coping; *Disabilities; Elementary Secondary Education; Emotional Response; *Family Needs; *Siblings; *Student Attitudes

ED404814 EC305332
A Strong Sibling Network: Forgotten Children No More.
Gorelick, Jack
Pages: 22
Date: July 1996
Paper presented at the Annual World Congress of the International Association for the Scientific Study of Intellectual Disabilities (10th, Helsinki, Finland, July 8-13, 1996).
Available from: EDRS
Document Type: Opinion papers (120); Speeches/meeting papers (150)
Journal Announcement: RIEJUL1997
This report traces the recent recognition given to the needs and feelings of siblings of individuals with mental retardation. The development of social support groups for siblings from 1960 to the present is described, including the establishment of the landmark Brother-Sister Group, the founding of the Association for the Help of Retarded Children's (AHRC) Adult Sibling Support Group, and AHRC conferences on siblings of people with mental retardation and developmental disabilities. Literature written to address the problems of siblings of individuals with mental retardation is reviewed. The impact of several converging factors on sibling concerns is addressed, including the increased longevity of persons with mental retardation, the aging and death of parents who provided care, the closure of institutions, and the return to the community of institutionalized people. The fears and emotional conflicts of siblings of those with mental retardation are identified. Recommendations are made for a future agenda for sibling services that includes having all members of a family involved in future planning, starting services for siblings at an early age, and making genetic information and counseling available to help siblings make decisions about their own parenting.
Descriptors: Adults; *Coping; Developmental Disabilities; Emotional Response; Family Role; Long Range Planning; *Mental Retardation; Program Development; *Sibling Relationship; *Siblings; *Social Support Groups

ED404813 EC305331
The Sibling: A Lifelong Journey of Care.
Liska, Victoria D.
Pages: 14
Date: July 1996
Paper presented at the Annual World Congress of the International Association for the Scientific Study of Intellectual Disabilities (10th, Helsinki, Finland, July 8-13, 1996). Based upon an article by Anne C. Guthrie, "Lessons of Love: Listening to the 'Other Children.'"
Available from: EDRS
Document Type: Opinion papers (120); Speeches/meeting papers (150)
Journal Announcement: RIEJUL1997
This paper describes the feelings and needs of children who have siblings with disabilities from the point of view of a woman who has a brother with an intellectual disability. Eight lessons that adult siblings can teach professionals about the significant, often forgotten, family role they play are outlined, supported by descriptive quotations from people in similar situations. The lessons include: (1) having a brother or sister with special needs can stretch the sibling bond in unnatural, and troublesome ways; (2) the role of an adult sibling of a person with special needs has no clear definition; (3) communication with parents about matters related to the future for a child with special needs is often emotionally charged, if it occurs at all; (4) family caregivers face competing, often conflicting, obligations to the people and work responsibilities in their lives; (5) individuals involved in long-term family caregiving need to be able to depend on the reliability of the other support services their relative receives; (6) advocates and self-advocates require access to information that is current, comprehensive, and user-friendly; (7) siblings typically share a strong drive to maintain life-long connection with each other; and (8) siblings of persons with developmental disabilities express frustration at the lack of opportunities and accommodation society offers to their disabled brothers and sisters.
Descriptors: *Coping; *Emotional Response; Family Caregivers; *Family Role; Long Range Planning; Long Term Care; *Mental Retardation; Psychological Patterns; *Sibling Relationship; *Siblings

EJ531265 PS525515
Siblings of Hospitalized and Ill Children: The Teacher's Role in Helping These Forgotten Family Members.
Wallinga, Charlotte; Skeen, Patsy
Young Children, v51 n6 p78-83 Sep 1996
ISSN: 0044-0728
Document Type: Guides--Classroom--Teacher (052); Journal articles (080)
Journal Announcement: CIJFEB1997
Argues that teachers of children with seriously ill siblings are important as constancy figures, crisis interventionists, and support mechanisms. Details common reactions of well siblings including guilt, jealousy, rejection, isolation, and fear. Discusses responses that facilitate coping that teachers can make to behavioral and physical manifestations, and lists resources for further study.
Descriptors: Child Health; *Children; *Coping; Diseases; Early Childhood Education; Emotional Response; *Hospitalized Children; *Siblings; *Teacher Role; *Terminal Illness
Identifiers: *Sibling Care

ED386000 EC304202
What about Me?: A Practicum Addressing the Needs of Children Who Have a Preschool Sibling with Impaired Hearing.
Weston, Marsha C.
Pages: 56
Date: May 29, 1995
Ed.D. Practicum, Nova Southeastern University.
Available from: EDRS
Document Type: Dissertations/Theses--Practicum papers (043);Test/questionnaires (160)
Journal Announcement: RIEJAN1996
This practicum developed a special program to serve the elementary school child who has a preschool sibling with a hearing impairment. A special book addressing the cognitive and emotional needs of the siblings was written and distributed to 35 children whose families were enrolled in a clinic-sponsored correspondence program and to 15 children whose families participated in on-site clinic programming for preschool children, ages 2-5, with hearing impairments. The book provides information about the anatomy of the ear, hearing loss, assistive devices, communication, and methods of teaching children who have impaired hearing. Feelings which may be experienced by children whose sibling is hearing impaired are described. Games and illustrations are included in the book; additional children's reading materials are identified. A mail-in card allows the child to write to the clinic with questions or concerns. Questionnaires about the book were returned by 12 children and 6 parents from the correspondence group and by 8 children and 7 parents from the on-site group. Based on positive responses, the book is being used on-site and through distance education to include all family members in programming. The child and parent questionnaires are appended.
Descriptors: Clinics; Community Programs; *Correspondence Study; Elementary Education; Elementary School Students; Emotional Adjustment; *Family Involvement; *Hearing Impairments; Information Needs; Intervention; *Material Development; Preschool Children; Preschool Education; *Reading Materials; Sibling Relationship; *Siblings; Symptoms (Individual Disorders)

EJ484040 PS521966
Book Reviews.
Pride, John L.
Children Today, v22 n4 p39 1993-94
ISSN: 0361-4336
Document Type: Book/product reviews (072); Journal articles (080)
Journal Announcement: CIJSEP1994
Reviews "It Isn't Fair! Siblings of Children with Disabilities" (Stanley D. Klein and Maxwell J. Schleifer, Editors). The book examines the attitudes of siblings and parents of disabled children, and discusses how parents' attitudes and actions determine whether the presence of such children in the family will be a positive or negative experience.
Descriptors: Book Reviews; *Childhood Attitudes; *Disabilities; Family Environment; Family Life; Family Relationship; *Parent Attitudes; Parent Child Relationship; *Sibling Relationship; *Siblings

ED358629 EC302192
Siblings of Children with Special Health and Developmental Needs: Programs, Services and Considerations. ARCH Factsheet Number 23.
Meyer, Donald
Author Affiliation: ARCH National Resource Center for Crisis Nurseries and Respite Care Services, Chapel Hill, NC.(BBB30336)
Pages: 5
Date: May 1993
Sponsoring Agency: Children's Bureau (DHHS/OHS), Washington, DC. (BBB20726)@North Carolina State Div. of Mental Health, Raleigh. Mental Retardation and Substance Abuse Services. (BBB24514)
Contract No: 90-CN-0121
Available from: EDRS
Document Type: Information Analysis (070)
Journal Announcement: RIENOV1993
This fact sheet provides an overview of the special concerns of siblings of children with special health and developmental needs, describes one model approach addressing these concerns, and outlines considerations for respite care agencies. Special concerns of siblings include feelings of loss and isolation, an unmet need for information about the disability or illness, increased caregiving demands on older sisters, overidentification, pressure to achieve, guilt, resentment, and concerns about their and the sibling's future. Positive aspects experienced by such siblings are also noted. Characteristics of appropriate programs are suggested, including an opportunity to meet other such siblings and to discuss joys and concerns they have in common, a chance to learn more about the implications of the special needs individual, and an opportunity for parents and service providers to learn more about siblings' common concerns. A model format for 4-hour meetings held monthly or bimonthly is briefly described. Agencies are offered a checklist to facilitate the inclusion of siblings in planning and implementing family support services. Several print and organizational resources are suggested.
Descriptors: Agencies; Delivery Systems; *Developmental Disabilities; *Disabilities; Emotional Adjustment; Family Programs; Group Discussion; Information Needs; Models; Program Development; Psychological Characteristics; Psychological Needs; *Siblings; *Social Support Groups; *Special Health Problems

ED354701 EC301886
Siblings: Brothers and Sisters of People Who Have Mental Retardation. Arc Q & A Series.
Author Affiliation: Arc, Arlington, TX.(BBB30535)
Pages: 3
Date: January 1993
Sponsoring Agency: Minnesota Governor's Planning Council on Developmental Disabilities, St. Paul. (BBB22949)
Availability: The Arc, 500 E. Border St., Suite 300, Arlington, TX 76010.
Document Type: Guides--Non-classroom (055)
Journal Announcement: RIEJUL1993
Basic information about siblings of people with mental retardation is presented in a question-and-answer format. The following questions are addressed: "Is having a sibling with a disability different than having a sibling who does not have a disability?"; "What are some of the concerns of siblings of people with disabilities?"; "Are there any benefits to being the brother or sister of a person with a disability?"; "What are some positive actions parents can take with their children when there is a sibling with a disability?"; "How does family structure affect siblings?"; and "What is being done to address concerns that siblings may have about having a brother or sister with a disability?" Also provided is a list of three organizational resources and five references.
Descriptors: Child Rearing; *Disabilities; *Emotional Adjustment; *Family Relationship; *Mental Retardation; *Sibling Relationship; *Siblings

EJ475972 EC607642
Perceived Competence and Behavioral Adjustment of Siblings of Children with Autism.
Rodrigue, James R.; And Others
Journal of Autism and Developmental Disorders, v23 n4 p665-74 Dec 1993
ISSN: 0162-3257
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJMAY1994
This study found that siblings (n=19) of severely autistic children, siblings of children with Down's syndrome, and siblings of normal children did not differ on measures of perceived self-competence or parents' report of social competence. Siblings of autistic children had more internalizing and externalizing behavior problems than siblings of normal children.
Descriptors: Adjustment (to Environment); *Autism; *Behavior Patterns; Behavior Problems; Children; Downs Syndrome; Incidence; *Interpersonal Competence; Parent Attitudes; Performance Factors; Psychological Patterns; *Self Esteem; Self Evaluation (Individuals); Severe Disabilities; *Siblings

EJ441279 EC602571
Preschool Siblings of Handicapped Children: Interactions with Mothers, Brothers, and Sisters.
Lobato, Debra J.; And Others
Research in Developmental Disabilities, v12 n4 p387-99 1991
ISSN: 0891-4222
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJJUL1992
This study, involving 40 young siblings of either handicapped or nonhandicapped children, found that siblings of handicapped children engaged in more parallel and social play and were more nurturing with their siblings than were control children. Mothers were more likely to deliver commands, directives, and reprimands to siblings of handicapped children than to other children.
Descriptors: *Behavior Patterns; *Disabilities; Interaction; Interaction Process Analysis; Mothers; *Parent Child Relationship; Personality Traits; Play; *Sibling Relationship; *Siblings; Young Children

EJ434128 CG539993
Effects of a Support Group for Siblings of Children with Special Needs.
McLinden, Stacey E.; And Others
Psychology in the Schools, v28 n3 p230-37 Jul 1991
ISSN: 0033-3085
Document Type: Journal articles (080); Reports--Evaluative (142); Reports--Research (143)
Journal Announcement: CIJMAR1992
Evaluated six-week support group for six preadolescent siblings of children with mental or physical handicaps. Comparison with five nonparticipants revealed that group had significant effect on participants' perceptions of social support. Parents indicated some improvements in participants' behavior toward siblings. Found no significant differences between groups on behavior problems, self-concept, or knowledge about and attitudes toward handicapped children.
Descriptors: Attitude Change; Behavior Problems; *Disabilities; *Family Problems; Knowledge Level; Preadolescents; *Program Effectiveness; Self Concept; *Siblings; *Social Support Groups

EJ429862 EC600925
Observations of the Role Relations and Behavior between Older Children with Mental Retardation and Their Younger Siblings.
Brody, Gene H.; And Others
American Journal on Mental Retardation, v95 n5 p527-36 Mar 1991
ISSN: 0895-8017
Document Type: Journal articles (080); Reports--Research (143)
Journal Announcement: CIJDEC1991
Children with mental retardation (n=32) and their younger nonretarded siblings were observed interacting in the home setting. Interactions were characterized by accentuated role asymmetries that favored the younger sibling. Competence of the mentally retarded child reliably predicted sibling role asymmetries. Gender differences in roles and behavior were minimal.
Descriptors: Behavior Patterns; Children; Interaction; Interaction Process Analysis; Interpersonal Relationship; *Mental Retardation; Sex Differences; Sibling Relationship; Siblings

EJ427126 EC600585
Sibling Support Groups.
Summers, Marcia; And Others
Teaching Exceptional Children, v23 n4 p20-25 Sum 1991
ISSN: 0040-0599
Document Type: Guides--Non-classroom (055); Journal articles (080)
Journal Announcement: CIJOCT1991
Target Audience: Counselors; Practitioners
The article examines the value of support groups for siblings of children with disabilities, discusses their implementation and evaluation, and proposes activities for six sessions of a sibling group.
Descriptors: Counseling Services; Counseling Techniques; *Disabilities; Elementary Secondary Education; Emotional Adjustment; Group Activities; Group Counseling; *Group Discussion; Program Development; Siblings; *Social Support Groups
 

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