Recommendations on how to help siblings of disabled children

(Part 4 of 4)

Abrams (2009) offered several suggestions to health care professionals on how they can help protect the normal siblings of disabled children from the negative impact of having disabled siblings, as well as help them flourish in their unique family environment. It is imperative that parents and the support communities pay special attention to the needs of the normal siblings of the disabled (p. 316).  

Counselors and health care professionals must make sure that they include the entire family when assessing the disability, the amount and quality of care and attention required, and the overall impact of the disability on the family as a whole including their future. This is important as, “Much of the research suggests that children’s negative experiences come about because of the negative experiences that happen to the family as a whole” (Phillips, 1999, p. 1).  The helping professionals can help ensure that the normal children are heard, and their needs discussed even if the children themselves, or the parents do not bring the subject up (Abrams, 2009, p. 316).

Oftentimes, in their effort to protect their normal children from the impact of disability, parents unnecessarily isolate the normal children from their disabled siblings and the caring process. Jeanne Safer (2002) relates how her parents isolated Steve, her disabled brother, from her so much so that although she spent her entire childhood in the same house with him, she does not remember “any shared moment” with him.  She continues: “I never looked up to him, never mentioned him in any of the voluminous diaries I’ve kept or in either of the books I’ve written. I own no photograph of him, no keepsake. Having a sibling has been an abstract, oddly detached concept for me rather than a real experience” (p. 3).

It is important to help children establish some kind of relationship with their disabled siblings, although it may never be in any way similar to that of normal siblings. For sure, their relationship will be one-sided, with the normal child on the giving side at all times, This is alright, because it is through this that the normal sibling  learns to be more tolerant, sensitive, sharing  in the joys and excitement of every triumphs and  milestones reached by their disabled siblings. 

Although Jeanne Safer’s experience of isolation from her disabled sibling may seem a little bit more extreme, other normal children, who have not been entirely isolated, experience some degree of isolation and confusion. For example, when they are left behind when their parents go to therapy with their disabled sibling without them, a young normal child may think: “Why can’t I go? Why can’t I be sick too?”  Since most of the normal children end up contributing to the care of their disable siblings, it is important that they be educated and informed about their sibling’s disability. The information should be communicated in a way that they are able to process and understand. Even the younger siblings need to be included in the informational process. After all, some of them worry that they caused the disability, and they fear that it is a kind of illness they can catch (Abrams, 2009, p. 312).

The health care community, including social workers, counselors, and even primary providers should assist the whole family as they go through their grieving process. They need help in mourning their shattered dreams, and the, “loss of possibilities” (Abrams, 2009, p. 316). There is also a need to encourage normal children to express some of their frustrations, so that their feelings can be validated. Health care professionals and counselors should also help connect families of disabled children to some kind of support system within the community. Groups like Association for Retarded Citizens (ARC), the Easter Seal Society, and disorder-specific societies such as the Autism Society of America and the Muscular Dystrophy Association, to name a few,  provide families with literature, seminars, and support groups. Sometimes, counseling and family therapy should be encouraged (Siegel & Silverstein, 1994, p. 200).

There are many things parents themselves can do to help their normal children not feel isolated and overly burdened to care for their problem siblings. Parents need to limit normal children’s caring responsibilities so that they can have time to, “pursue developmentally appropriate activities” (Siegel & Silverstein, 1994, p. 190). Feelings of neglect can be alleviated if parents spend quality time with their normal children, without the disabled sibling, as many times as possible. Parents can use at least some of the times spent with normal children, to encourage their normal children to talk about how they feel about their home environment and their relationship with their disabled siblings. Providing and protecting their normal children’s space where they can keep their own things safe from the intrusions and destructive behavior of their disabled siblings can help them feel safe and validated.

It is also important for parents to plan for their children’s future. One of the questions often asked by a normal sibling is, “Will I have to take care of my brother/sister when something happens to my parents?” “The legal and financial responsibilities associated with the care of a disabled person are difficult to communicate, but extremely powerful to experience” (Siegel & Silverstein, 1994, p. 205). The best is for parents to consult with a lawyer to help them assess the need to set up legal documents such as trusts, living wills, conservatorship, guardianship, and power of attorney. Parents need to decide ahead of time, rather than wait until the normal children have turned into adults with families of their own, which would make any kinds of dialogue about caring for the disabled sibling so much more complicated and difficult. 

One difficult decision that confronts families is whether to place the disabled child in a group home, where disabled individuals live together with others who have the same problem.  Caregivers and health providers who look after them are specially trained to meet their special needs. Placing these children in a home is not an easy decision for parents to make. For many, placing their special needs child in a home is tantamount to abandoning the child. 

Silverstein (1994), who personally experienced living with a disabled sibling, says that his brother Marc probably would have done better had he been placed in a group home at age 13 or 14 rather than when he was a lot older. He sincerely believed that the group home would have given Marc the kind of discipline and boundaries he needed, which he thought were almost impossible for their parents to provide (Siegel & Silverstein, p. 202). When parents get too old to care for the disabled child, and the normal siblings too wrapped up in their own families, parents often wind up placing disabled children in a home anyway. This is why parents need community support in determining if perhaps, placing the disabled child in a home while the child is still young may be beneficial for everybody in the long run.