“What about me?” Enhancing the lives of siblings of children with disabilities.
Posted Jun 06, 2014
A combination of societal and legislative changes have made the lives of individuals with disabilities and their families more comfortable in comparison to the way things were throughout history. From educational to industrial institutions, the accommodations and sensitivity offered to individuals with disabilities have created a less restrictive and more accessible environment. Families of individuals with disabilities have also gained attention and now have an array of services provided for their education and support.
However, there is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. As I have argued in multiple venues, sibling issues, in general, is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.
To begin shedding some light on this problem, allow me to present several common issues faced by siblings of children with disabilities:
Siblings may develop multiple difficulties
Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.
Siblings become overly responsible and independent
Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.
Siblings may feel neglected by parents
The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapyappointments for the child with the disability limits the amount of time parents can spend with the other siblings, resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability, leaving little emotional energy to support the sibling.
Siblings feel in the dark from parents and service providers
Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability, leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling, including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.
Siblings experience mixed emotions
Siblings may experience a range of emotions about their situation. They may feel guilt, wondering if they caused the disability of their sibling, or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling, considering the attention and resources expensed on their sibling. An additional common feeling is embarrassmentas a result of the behaviors and appearance of their sibling. In some cases, the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.
The situation provides opportunities for siblings
Beyond what is known as the pathogenic perspective, which highlights the difficulties associated with having a sibling with a disability, this difficult circumstance may also offer some opportunities for siblings. These siblings often develop certain positive characteristics such as self-control, cooperation, empathy, tolerance, altruism, maturity, and responsibility as a result of dealing with their family situation. They may develop loyalty and a protective attitude towards their sibling. In some cases, these siblings use someone’s attitude about special needs as a test for screening friends and mates. Their involvement with their sibling may even lead them to choose future occupations in the helping professions.
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I see firsthand at my university the great strides that have been accomplished in offering an environment that offers everyone a chance to succeed regardless of limitations. I am inspired by the great work of our university’s disability services office in caring for the needs of all students. This work is being replicated in many industries and institutions across the country. Focusing on some of the unique issues faced by siblings of individuals with disabilities is an important step in the continuous work that is being done in disability services overall. I hope to highlight this focus in future posts about variations in how siblings experience the above outcomes and some recommendations that can be used by families and service providers in helping these brave siblings.