AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MISHA GAREY, DDS
Parents must never lose sight of the dynamics of the family with a child(ren) with disabilities and continue to emphasize the potential impact on siblings while considering the current and long term plans for the youngster(s) with special needs.
In the United States, there are millions of brothers and sisters of people with disabilities. We will become care givers for our siblings when our parents die.” 1 “Siblings who have brothers or sisters with mental health conditions, with autism, or with other severe behavior problems associated with their disability are more likely to report problems in the early relationship and to exhibit symptoms of depression or less positive adjustment in later life.” 2
In 2010 there were more than 56 million people with disabilities in the United States. In 2013, there were more than 39 million people with severe disabilities in the country, including almost 3 million children less than 18 years of age. (Notes: Among children less than five years of age, only those with severe hearing and/or vision difficulties –161 thousand children–were included in the report by the Census Bureau. In addition, individuals who were reported to have disabilities may have had more than one disability.) 3.4
CONSEQUENCES
“The impact of disability in the family varies considerably from person to person… For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her
achieve even the smallest gain in learning or development.” 5
“In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs.” 5
As the sibling of a sister with a severe disability expressed his thoughts to one of us, “After all these years, I’ve had it. I want to have a life. I told my parents that when they would be too old to care for my sister or when they died, don’t expect me to take over the responsibility. I want a normal life for my own family.”
It is a concern to any family that the non-disabled sibling adjusts to the sibling with a disability. It is important because the non-disabled child’s reactions to a sibling with a disability, over an extended period of time, can affect the overall adjustment and development of self-esteem in both children.6
• Siblings as young as two and three years of age are aware of the environment of their brothers and sister with disabilities “… and want to be like them whether this involved being carried, having splints or having Down syndrome.”7 By school age, siblings are aware of behavioral and development differences between themselves
and their older brother and sister with disabilities.7
• The effects of having a brother or sister with intellectual disabilities often are shared equally amongst the other children in the family. The brunt of the burden often appears to be borne by the sister – particularly when physical care is needed.8
• Siblings of children with disabilities often have decreased time to be with their friends and participating in out-of-home activities. Some researchers suggest that these younger siblings do not resent assuming the dominant role and engaging in caregiving activities with their older siblings with disabilities.9
• Sisters in lower socioeconomic groups (compared to higher income groups) have reported greater problems when they are involved with the physical care of the child with more severe intellectual disabilities and the child could do fewer things for themselves.10
• The proliferation of services for children with intellectual disabilities and other disabling conditions in special classes and day-care centers may lead to less stress for siblings.11 An extended series of reviews of studies relating the impact on sibling of children with disabilities document a wide range of outcomes:
• “… support the general findings of recent research in that there was little indication of clinically meaningful elevations in behavioral and emotional problems in siblings of children with autism spectrum disorder.” 12
• Raise concerns in later years as, “…siblings of individuals with autism spectrum disorder (ASD) may face difficulty when their parents are no longer able to be the primary caregivers for their brother or sister with ASD, as they tend to have less emotional closeness and are more pessimistic about their brother or sister’s future than siblings of individuals with Down syndrome.” 13
• “Among older siblings, 88 percent felt that they were better people because of their siblings with Down syndrome (DS), and more than 90 percent plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.” 14
• “The current study indicated that siblings of children with ASD are at increased risk of developing internalizing behavior problems.”15
From the perspective of the whole family, the practical day-today needs of the child with cerebral palsy (CP) create challenges for parents and siblings. “The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver physical and psychological health include supports for behavioral management and daily functional activities as well as stress management….”16 These issues face all segments of the population, including members of the many minority groups.17
HOW TO HELP
The University of Michigan’s “Guide for Siblings of Kids with Special Needs” provides a set of directions for siblings and parents.18
1. What kinds of difficult feelings might a sibling have?
A child may, at times, have trouble coping with being the sibling of a child with special needs. They may have many different and even conflicting feelings. For example, they may feel:
• “worried about their sibling
• jealous of the attention their brother/sister receives
• scared that they will lose their sibling
• angry that no one pays attention to them
• resentful of having to explain, support, and/or take care of their brother/sister
• resentful that they are unable to do things or go places because of their sibling
• embarrassed about their sibling’s differences • pressure to be or do what their sibling cannot
• guilty for negative feelings they have toward their sibling or guilty for not having the same problems.” 18
2. What are the red flags, or signs that a child needs more help?
Sometimes the feelings can be so intense or disruptive, that a sibling may need professional counseling to help them cope. Meeting and talking with other children going through the same thing can also be very helpful – even if it’s just online.
• Changes in eating or sleeping (too much or too little)
• physical symptoms like headaches or stomachaches
• hopelessness
• perfectionism
• poor concentration
• poor self-esteem
• talk of hurting themselves
• difficulty separating from parents
• loss of interest in activities
• frequent crying or worrying
• withdrawal. 18
Parents can expect some degree of sibling rivalry, even when one child has an illness or developmental disability. But sometimes the rivalry crosses the line into abuse. If there is a chance the sibling relationship has become abusive, parents should seek professional help. Some possible signs of sibling abuse are:
• “One child always avoids their sibling
• A child has changes in behavior, sleep patterns, eating habits, or has nightmares
• A child acts out abuse in play
• A child acts out sexually in inappropriate ways
• The children’s roles are rigid: one child is always the aggressor, the other, the victim
• The roughness or violence between siblings is increasing over time.”18
3. Parenting tips for the family concerning siblings of a child with disabilities.
The University of Michigan’s website for the guide for parents to assist siblings of children with disabilities (http://www.med.umich.edu/yourchild/topics/specneed.htm) provides an extensive set of strategies in dealing with the many issues that may arise between the children and their parents. For example: What is Sibling Rivalry?
“Sibling rivalry is the jealousy, competition and fighting between brothers and sisters. It is a concern for almost all parents of two or more children. Problems often start right after the birth of the second child. Sibling rivalry usually continues throughout childhood and can be very frustrating and stressful to parents.”18
• Each child is competing to define who they are as an individual.
• Children feel they are getting unequal amounts of their parent’s attention, discipline, and responsiveness.
• Children may feel the relationship with their parents is threatened by the arrival of a new baby.
• Children may not know positive ways to get attention from or start playful activities with a brother or sister, so
they pick fights instead.
• Stress in the parents’ lives can decrease the amount of time and attention parents can give the children and increase sibling rivalry. 18
SOME ANSWERS
• Don’t play favorites. This one is important!
• Try not to compare your children to one another. For example, don’t say things like,”Your brother gets good grades in math – why can’t you?”
• Let each child be who they are. Don’t try to label them.
• Enjoy each of your children’s individual talents and successes.
• Set your children up to cooperate rather than compete.
• Pay attention to the time of day or other patterns when conflicts usually occur. Perhaps a change in the routine, an earlier meal or snack, or a well-planned quiet activity when the children are at loose ends could help avert the conflicts.
• Being fair is very important, but it is not the same as being equal. Older and younger children may have different privileges due to their age. Be prepared to explain the decisions that have been made.
• Plan family activities that are fun for everyone.
• Make sure each child has enough time and space of their own.18
THE CHALLENGES OF A CHANGING LANDSCAPE
Worldwide deinstitutionalization has made it possible for people with intellectual and developmental disorder (IDD) to live within their communities and integrate with the general population. The emphasis in the media on the longevity of these individuals has made caring for older adults with IDD a priority concern among health planning
officials.19 But is the increasing awareness of the needs of older populations with IDD overshadowing the concerns for youngsters with a wide range of disabilities, their families and in particular their siblings?
While the issues faced by each family are centered on the immediacy of its personal needs for their children with disabilities and the siblings, it is essential to maintain an appreciation of the increasing pressures upon legislative bodies, community resources and health and social service agencies to meet the demands of the evolving
population. For example, the older population, which includes persons 65 years plus, numbered 40 million in 2010. They represented 13 percent of the U.S. population, or about one in every eight residents. By 2030, there will be about 72.1 million older persons, (one in every five residents and in some states one in four residents) more than twice their number in 2000.20
Despite the reality of these developments, parents must never lose sight of the dynamics of the family with a child(ren) with disabilities and continue to emphasize the potential impact on siblings while considering the current and long term plans for the youngster(s) with special needs. •
ABOUT THE AUTHORS:
H. Barry Waldman, DDS, MPH, PhD – Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; Email:h.waldman@stonybrook.edu
Steven P. Perlman, DDS, MScD, DHL (Hon) – Global Clinical Director, Special Olympics, Special Smiles and
Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA.
Misha Garey, DDS is Director of Dental Services at the Orange Grove Center.
References
1. Sibling leadership network.SLN white paper. Web site:http://siblingleadership.org/?s=white+paper Accessed January 14, 2015.
2. Orsmond G I, Seltzer MM. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews, 2007;13:313-320.
3. Census Bureau: American Community Survey. Web site:http://factfinder2 census.gov. Accessed January 15, 2015.
4. Brault MW. Americans with disabilities, 2010. Web site:http://www.census.gov/prod/2012pubs/p70-131.pdf Accessed January 15, 2015.
5. Center for Parent Information and Resources. Sibling Issues. Web site: http://www.parentcenterhub.org/repository/siblings/Accessed January 13, 2015.
6. National Dissemination Center for Children with Disabilities Understanding Sibling Issues. Web site: http://www.ldonline.org/article/6054/ Accessed January 10, 2015.
7. Hames A. Do the younger siblings of learning disabled children see them as similar or different. Child Care, Health and Development, 1998;24:157-168.
8. Stoneman Z. Common theme and divergent paths; in Stoneman Z, Brody GH, Davis CH, et al. Ascribed role relations between children with mental retardation and younger siblings. American Journal Mental Retardation, 1991;95:537-550.
9. Brody GH, Stoneman , Davis CH, et al. Observations of the role relations and behavior between older children with mental retardation and their younger siblings. American Journal Mental Retardation, 1991;95:527-536.
10. Boyce GC, Barnett WS. Siblings of persons with mental retardation. A historical perspective and recent findings. Pp 145-184; in Stonemand Z, Berman PW. The effects of mental retardation, disability and illnesson sibling relationships; research issues, and challenges. Baltimore MD: Paul H. Brooks, 1993.
11. Bagenholm A, Gillberg C. Psychosocial effects on siblings of children with autism and mental retardation: a population based study. Journal Mental Deficit Research 1991;35:291-307.
12. Hastings RP, Petalas MA. Self-reported behaviour problems and sibling relationship quality by siblings of children with autism spectrum disorder. Child Care Health Development, 2014;40(6):833-9.
13. Orsmond GL, Seltzer MM. Siblings of individuals with autism or Down syndrome: effects on adult lives. Journal Intellectual Disability Research, 2007;(Pt 9):682-96.
14. Skotko BG, Levine SP, Goldstein R. Having a brother or sister with Down syndrome: perspectives from siblings. American Journal of Medical Genetics Part A. 2011;155A(10):2348-59.
15. Ross P, Cuskelly M.J Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Intellectual Development Disability. 2006;31(2):77-86.
16. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 2005;115(6):e626-36.
17. Kao B1, Romero-Bosch L, Plante W, Lobato D. The experiences of Latino siblings of children with developmental disabilities. Child Care Health Development. 2012;38(4):545-52.
18. University of Michigan. Your child development behavior and resources. Siblings of children with special needs. Web site:http://www.med.umich.edu/yourchild/topics/specneed.htm Accessed January 15, 2015.
19. Wang KY. The care burden of families with members having intellectual and developmental disorder: a review of the recent literature. Current Opinion in Psychiatry. 2012;25(5):348-52.
20. Aging Statistics – Administration on Aging. Web site:http://www.aoa.acl.gov/Aging_Statistics/index.aspx Accessed January 16, 2015. eparent.
