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Siblings with Disabilities

By Miriam Edelson, author of Battle Cries: Justice for Kids with Special Needs

Siblings experience their sister's or brother's special needs in a number of ways and at different levels.

How parents explain to their children the challenges a disabled sibling faces varies greatly but is most complex when a child's condition goes beyond a relatively obvious physical impairment. There is a qualitative difference between blindness and mobility impairment, for example, and developmental or psychological disabilities that can affect a person's capacity for decision-making. In essence, a limit to a person's ability to exercise his or her agency is a more substantial impediment to the goal of reaching autonomy. In addition, many of the latter disabilities tend to present over time, the development of an infant's or young child's capabilities being so reliant on a variety of opportunities at home and therapeutic interventions.

Of course, one always must find age-appropriate explanation for children. Young people experience their sister's or brother's impairments in a number of ways and at different levels. The relation alters over time and across various stages in their lives. Not unlike parents who initially grieve the loss of the child they expected and then hopefully, learn to embrace their child as the person she is, kids too experience a sense of lose that ebbs and flows.

Many non-disabled children, whether younger or older, tend to take on an elder sibling role. They may help with the child's physical care or, as does one young boy in the narratives that follow in my book, commit to memory the exact medication doses and schedule that this brother needs to that he can inform an auntie or babysitter when his mom can't be present. Our kids seem to learn early to defend their siblings. I doubt this varies a great deal from other sibling relationships, but the need may arise more often if a child with special needs is made fun of or otherwise castigated in public. In best-case scenarios, I have seen young children emulate their parents' level of comfort with their disabled child.

Again, I do not presume that these family relationships are necessarily substantially different from those in so-called ordinary families. But I do believe there are some qualitative differences that engender additional layers of complexity and which require parents' attention. It may take conscious effort by parents to foster the complex attachment between these siblings. When a brother does not speak and only communicates with his eyes and sounds, everyone in the family must learn to interpret what is wanted. If we imagine an English-speaking family where (for some reason) one child speaks only Cantonese, perhaps we can grasp how extra attention and effort toward communicating effectively must occur.

I also believe the knowledge that a non-disabled child is likely to accrue in the family is, on balance, enriching, notwithstanding that there may be times that she wishes for a "real" brother, as my daughter expressed at age five when we were enjoying a weekend visit with a family bursting with vocal, active kids. In short, perhaps our kids learn early that life isn't always fair and/or there are not fully scientific, rational explanations for everything that occurs. I am convinced that the way in which parents frame their explanations of disability to their children profoundly affects the nature of family relationships.

Research indicates that some non-disabled children feel a need to compensate for their siblings' limits in order to please their parents. Some mothers told me that they were conscious, in celebrating their non-disabled kids' activities at school or sports, of not wanting to put extra pressure on them to achieve. Others were aware that the non-disabled child occasionally experienced guilt because he was fine while his sister has certain challenges. Some non-disabled children feel jealous that less time (and likely less energy and/or financial resources) is available for a visit to the zoo or to go to a hockey game.

My daughter missed her brother because he lived far from our home. I think, moreover, that especially when she was between ages five and ten, she would have liked a companion to play with in our home, without having to wait for play date on the weekend. On occasion, I even wondered if she was picking a fight with me because, in the absence of a sibling nearby, she would bounce her scrappiness off me. Her friendships became increasingly important as she became older - as for many children - and she found intimacy with certain youngsters that gave her the sort of closeness one might enjoy with a sister or brother. It is quite possible that these traits are simply indicative of how only children mature.

Copyright Miriam Edelson. Excerpted from her book Battle Cries: Justice for Kids with Special Needs


Miriam Edelson is the author of Battle Cries: Justice for Kids with Special Needs, an amazing book on raising and advocating for children with special needs. She is also the author of My Journal with Jake: A Memoir of Parenting and Disability.

 

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