Sisters and Brothers

Family Together - Parents and Kids, WheelchairBrothers and sisters  growing up with sibling with severe and multiple disabilities often are required to make sacrifices that most other children do not have to make. Parents often feel guilty about neglecting their other children when they are overwhelmed with the urgent demands of a child with ongoing urgent needs.

Before going on with this discussion, I need to issue a disclaimer and apology. Writing about this topic, it is tempting to present it like I have it all figured out, like everything is and always was under control, and like I always handled things perfectly. Unfortunately, that is not the case, and I am sorry for those times that I fell short as a dad. Nevertheless, I do think there are a some thoughts that are worth sharing, and I am passing them along for what they are worth.

At times. it is hard on siblings growing up with a brother or sister with intensive needs. It is also difficult for parents who want to be fair to all their children, when one has needs that are so much more frequent and urgent than the other. flask There has been a lot of research on the effect on siblings, and the results indicate some risks but also some potential benefits. Overall measures of well-being comparing siblings of children with disabilities to children without disabilities indicate little or no significant difference between the groups. In addition, when differences are detected, they often disappear when controls are put in place to consider differences in family income and other social factors.

Many siblings felt that other people were unaware of the challenges they face and some reported that they were teased about their sibling’s disability. Some reported feeling isolated from their peers and other family members. Some studies have suggested an increased risk for depression and loneliness in siblings, but other studies have found no evidence for increased risk.Similarly studies that look at the frequency or severity of behavior problems in siblings have been mixed. Some report a small but measurable risk for behavior problems, but other report no increase.

Several studies have looked at self-concept in siblings, and have found no evidence of siblings of brothers or sisters with disability being at increased risk for a negative self-concept.

Sisters of siblings with developmental disabilities as a group have been found to marry later in life than women in the general population, and they were less likely to divorce. Sisters were more likely than brothers to report beneficial effects of having a sibling with a developmental disabilities. As a group, siblings of children with developmental disabilities show greater emotional maturity than other children of the same age. As a group, they are also more likely to go into helping professions as adults. Some research has also found that siblings have an increased sense of self-efficacy and psuchological strength as adults.

Siblings who take some responsibility in providing care for a brother or sister with a disability appear to show greater maturity, resilience, and life satisfaction. When excessive demands are placed on siblings for their brother or sister, however, it can result in isolation from peers, frustration, and depression.

Overall, the impact of having a brother or sister with a developmental disability is mixed, but it appears to be less of a risk than many parents worry it might be. It is simply a fact of life in many families, but there are somethings that appear to help to make the experience a better one for these siblings. Researcher Zolinda Stoneman summarized it like this:

Examination of psychological findings from many studies leads to the conclusion that most siblings of children with disabilities are indistinguishable from their peers who live in families not affected by disability. Simply stated, having a brother or sister with a disability does not cause maladaption or pathology in children. In their meta-analysis, Rossiter and Sharpe (2001) concluded that the differences between siblings of individuals with mental retardation/autism and comparison siblings is ‘‘small at best’’. Many siblings thrive and benefit from having a sibling with a disability . It is also true that a few children seem to be harmed by the experience.Zolinda Stoneman (2005)

lightbulbSo, what are some things that families can do to try to make sure that their nondisabled children will be the ones that benefit and not among the few that seem to be harmed? There is no easy answer, but here are some things to consider:

It is important to recognize that every child is a different, and helping siblings adjust needs to be individualized to each child’s needs.

While having a brother or sister with a severe  disability and intensive needs does have an impact on siblings, it is only one of many circumstances that influence them. Overemphasizing the impact of this fact in trying to understand the sibling or respond to the sibling’s needs is not helpful.

Parents, typically are role models for how siblings respond. If parents act like having a child with a disability is wrecking their lives, the siblings will likely view their experience with equal negativity. If parents acknowledge the challenges they face but respond positively, siblings are much more likely to respond positively.

Acknowledging and talking about the siblings feelings can be very helpful.

Carving out some time for the sibling is helpful.

Encouraging the sibling to participate in care while acknowledging this contribution is generally helpful. Pushing the sibling to take on more responsibilities than he or she can comfortably handle is likely be harmful.

Workshops and other programs for siblings of children with disabilities exist in some communities. While I am not sure that every sibling needs these special programs, there is some evidence that these are useful, and many the participants are happy to meet and share feelings with other kids who have siblings with disabilities. If the sibling is open to attending this kind of program, it may be useful.

Further Reading:

Barr, J., & McLeod, S. (2010). They never see how hard it is to be me: siblings’ observations of strangers, peers and family. Int J Speech Lang Pathol, 12(2), 162-171.
Cassidy, T., Giles, M., & McLaughlin, M. (2014). Benefit finding and resilience in child caregivers. British Journal of Health Psychology, 19, 606-618.Emerson, E., & Giallo, R. (2014). The wellbeing of siblings of children with disabilities. Res Dev Disabil, 35(9), 2085-2092.
Dauz Williams, P., Piamjariyakul, U., Graff, J. C., Stanton, A., Guthrie, A. C., Hafeman, C., et al. (2010). Developmental disabilities: effects on well siblings. Issues Compr Pediatr Nurs, 33(1), 39-55.
Dyke, P., Mulroy, S., & Leonard, H. (2009). Siblings of children with disabilities: challenges and opportunities. Acta Paediatr, 98(1), 23-24.
Frank, J., & Slatcher, C. (2009). Supporting young carers and their families using a whole family approach. J Fam Health Care, 19(3), 86-89.
Gettings, S., Franco, F., & Santosh, P. J. (2015). Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: a longitudinal feasibility study. Child Adolesc Psychiatry Ment Health, 9, 8.
Hodapp, R. M., Urbano, R. C., & Burke, M. M. (2010). Adult female and male siblings of persons with disabilities: findings from a national survey. Intellect Dev Disabil, 48(1), 52-62.
Manor-Binyamini, I., & Abu-Ajaj, O. (2012). Coping of siblings of children with developmental disabilities in the Bedouin community. Res Dev Disabil, 33(3), 825-831.
Opperman, S., & Alant, E. (2003). The coping responses of the adolescent siblings of children with severe disabilities. Disabil Rehabil, 25(9), 441-454.
Puttick, N. (2011). Siblings of children with disabilities: improving health well-being through creativity. J Fam Health Care, 21(1), 25-28.
Roberts, R. M., Ejova, A., Giallo, R., Strohm, K., Lillie, M., & Fuss, B. (2015). A controlled trial of the SibworkS group program for siblings of children with special needs. Res Dev Disabil, 43-44, 21-31.
Schuntermann, P. (2009). Growing up with a developmentally challenged brother or sister: a model for engaging siblings based on mentalizing. Harv Rev Psychiatry, 17(5), 297-314.
Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., & Lounds, J. (2005). Life course studies of siblings of individuals with developmental disabilities. Ment Retard, 43(5), 354-359.
Stoneman, Z. (2005). Siblings of Children With Disabilities: Research Themes. Mental Retardation. 43(5), 339–350.
Unal, N., & Baran, G. (2011). Behaviors and attitudes of normally developing children toward their intellectually disabled siblings. Psychol Rep, 108(2), 553-562.
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