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The Sibling Challenge

One of the ongoing struggles for me, as a parent of a child with special needs, is the unique combination of stresses and pressures that our other kids face.[distance1]

Maybe it’s because I’m certain I’m scarring my children at every possible turn (and not just by insisting that they witness my awesome dance moves), but I’m always curious about how other families handle the sibling relationship, and how adult siblings view their family relationships. I’ve asked for some input from friends and readers about their family and sibling experiences.[distance1]

When I asked my friend Scott about what it was like growing up with his brother Joseph, he explained that Joseph “was my only sibling so there is nothing to compare.” Joseph was born premature with cerebral palsy (and blind from birth) when Scott was 13. While the exact diagnosis was not immediately clear, Scott’s parents told him everything that was going on. As he said, “there was no sugar coating.”[distance1]

Scott shares that he was aware that his parents “constantly struggled with the day to day care” of his brother. He acknowledges, however, that though his parents dealt with huge pressures, “the thing my family did well was using humor as a coping mechanism.” Regardless, he understood from an early age that his brother’s needs occupied most of his parents’ focus, “unless I did something spectacularly good or, in most cases, spectacularly bad.”[distance1]

Lisa is in the very early stages of coping with a new diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, an Autism Spectrum Diagnosis) for her daughter, Ava. As a three year old who also battles epilepsy, Ava’s symptoms were initially masked by her anti-seizure medication. And while Lisa resisted comparing Ava’s development and early progress to that of their son Kyle, “the signals got to be too many to ignore.”[distance1]

Because Kyle was only five when the family began the testing process for Ava, his parents have refrained from sharing many details with him other than explaining that “her brain doesn’t work the same way that his does.”[distance1]

In many regards, Kyle and Ava have a very typical sibling relationship; the siblings share a bedroom and enjoy playing together as well as getting into trouble together. “He treats her like an obstacle, like a hindrance, like a best friend, like a confidant, like a partner in crime.”[distance1]

Lisa admits that she does expect a lot of flexibility of Kyle when dealing with his younger sister. “I know it’s not fair,” she says, “but I try to take the path of least resistance while I am struggling without support.”[distance1]

Looking toward the future, Lisa admits that the thought of managing her children’s ongoing relationship can be daunting and believes that some support groups or counseling could be helpful. However, she feels “overwhelmed” at the idea of fitting such activities into the family’s schedule.[distance1]

Beth is an adult who grew up as the second of three children in a family whose youngest child, and only son, had a variety of developmental disabilities caused by complications during childbirth. David struggled with various health problems, and Beth recalls a childhood of therapists and surgeries for her little brother, as well as ongoing educational challenges.[distance1]

Beth recalls being very fond of her brother when they were children, and taking on more of a protective role as they grew older. She credits this experience with her interest in advocacy. As an adult, she says, “I have assumed the role of second mom.”[distance1]

Looking back on their childhood together, Beth recalls the most difficult part being seeing David struggle. However, she credits David with having been a “uniting force” for her family. Additionally, she feels that her parents served as role models for David of how to have morals and a work ethic, as well as providing an example for the rest of the family through their dedication to David. While she knows her brother would love to live independently, she hopes that one day he will come to live with her and her husband.[distance1]

Listening to these stories gives me hope. I remember being in Lisa’s position and I marvel at how far our family has come. My children have come so far in their mutual understanding and in developing their relationships with each other. While I’ll always worry for their future, I’m inspired by the fondness with which Scott and Beth speak of their experiences, and I’m hopeful that my own children will grow to be similarly respectful and loving toward their brother as they all become adults.[distance1]

Posted in : Blog, Siblings
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