A brother's communication breakdown

Oct. 3, 2008, midnight | By Lily Alexander | 15 years, 8 months ago

Kids bound around on the plastic McDonald's indoor playland, shouting in excitement. A few feet away, one little boy stands completely alone, watching the commotion from a distance. He takes a timid step toward the other children, wanting desperately to join in on the fun, but they dash to the other side of the playground, yelling "you're weird" at him and whispering to one another "he's different."

Senior Jessica Johnson no longer has the patience to watch her six-year-old brother Jackson being tormented by other children. She marches over and confronts them, telling them that he's like any other kid - they just need to get to know him. But her pleas are met with blank stares, and Johnson sighs and turns away, realizing that her brother will never be welcomed into their games.

Johnson's brother has autism, a complex developmental disability that affects an individual's ability to communicate and interact with others. According to the Sibling Support Project, a non-profit organization dedicated to the concerns of brothers and sisters of people with disabilities, over six million individuals in the U.S. have a sibling with autism or other mental and developmental challenges. Although they themselves are not afflicted with a disability, they suffer in ways that are often overlooked.

Even so, according to Mary McHugh, author of Special Siblings: Growing up With Someone with a Disability, the hardships of these circumstances are balanced by the life-shaping lessons they teach, lessons that many siblings say strengthen their ability to see beyond an individual's exterior.

'That lady's fat'

For Johnson and her family, seeing past her brother's conditions has not always been easy. Johnson's six-year-old brother Jackson, who was diagnosed with autism at the age of one, is often unable to express his feelings. Like many autistic children, Jackson is out of place in social situations, and Johnson says his difficulty with communicating can result in a temper tantrum. During these outbursts, Johnson's brother often says things that can be hurtful, even though Johnson knows not to take them personally. "During his meltdowns, he says things like 'I don't love you,' and 'you don't live here,' and it's hard to think back about those things," she says.

Anne Guthrie, a volunteer for the Sibling Support Project, says that having a child with special needs forever alters family dynamics. "It really shakes up a family from the get-go," Guthrie says.

This was the case for senior Anna Snapp, who has continually struggled to connect with her brother. His condition is known as Nonverbal Learning Disorder (NLD), which causes a lack of coordination and social judgment, as well as an inability to comprehend nonverbal communication, according to the Nonverbal Learning Disorder Association. Snapp says that although her brother is academically bright, he cannot recognize obvious social cues and often is unaware of other people's reactions, including her own. And so tension arises between Snapp and her brother. "Even though I understand his differences, it's really hard," she says. "We're really different people and it's hard to communicate and be social and relaxed. I remember that when he was in high school it would be constant fight after fight."

In public, this tension can be amplified for adolescents, who are already struggling to fit in, according to Guthrie. She says that as she was growing up she frequently felt ashamed of her mentally handicapped older brother. One evening in high school, when a friend of Guthrie's arrived at the door, her brother peeked his head around the door and said, "Wow, look at that fat guy." Guthrie says she was mortified and ducked quickly back into the safety of her home, not wanting to show her face.

Guthrie stresses that feeling embarrassed by a sibling is a universal experience that is simply made worse when the sibling cannot understand social situations. "Everywhere you go, you have a sibling that's dorky and loud, points at people and says 'boy, that lady's fat,'" Guthrie says, laughing.

Second place sibling

Instead of receiving unwanted attention in public, Snapp says that she sometimes feels ignored by her parents, and that her needs are often overlooked even though she has Attention Deficit Hyperactivity Disorder. "…It took me a long time to convince my parents that I needed to get tested," Snapp says. "My parents thought that since one of their children had a problem, the other child couldn't." When Snapp does enter the family spotlight, she says, it is often to receive blame. "He is very sensitive and takes offense easily, so even if he provoked it, I would get in trouble," Snapp says.

According to Guthrie, siblings of those with special needs often experience such feelings of frustration; while they understand that their brother or sister is faced with many challenges, they too need their parents' care and attention. Sandra Harris, founder of the Douglass Developmental Disabilities Center at Rutgers University, says a lack of attention often burdens siblings. "It places a lot of demands on siblings to assume responsibility, to develop compassion and to cope with less time and attention from parents than their brother or sister with autism gets," she says.

But the reaction of the sibling is not the same for every family. Junior Xinyi Zhou, who has an autistic 12-year-old brother, says she does not feel disadvantaged by any kind of neglect from her parents. "I don't [feel jealous], because I always feel like if I'm not getting something, at least someone else should get it," she says. "So even though he definitely gets a lot more attention and more of what he wants, I'm okay with it."

Junior parents

Zhou has also learned to accept the parental responsibilities she must assume. Zhou says that her brother often looks to her for emotional and domestic support. "He knows I'm the one who'll fix him up something if my mom won't," she says. According to Guthrie, siblings of those with special needs are drafted into parenting early on. "Children with special needs siblings end up being junior parents and take on adult responsibilities they wouldn't usually have to take on," she says.

For Johnson, parenting means having to accommodate the needs of her brother on a daily basis. Although she describes herself as a spontaneous person, Johnson must adjust to the strict routine that governs her younger brother's life. Each day, she says, must be planned carefully in advance to eliminate any unexpected events, which could trigger one of her brother's tantrums. "One deviation from his world can cause a 'melt-down day,' where he'll melt down at a moment's notice," she says. "I'm a very spontaneous person, so we just have to work hard to make sure we are less spontaneous when it involves my little brother."

Learning compassion

Despite the frustrations of caretaking, Zhou says that the time she devotes to her brother brings a deeper sense of compassion. "In the more meaningful moments with him he doesn't have the capacity for it to be verbal, but the shared moments are what bring us closer. I see him as my brother and my responsibility," Zhou says.

And these feelings can deepen as siblings age, according to Harris, who explains that siblings of those with disabilities develop a greater sense of tolerance and compassion. For her part, Zhou has learned to appreciate her brother's disability as a part of who he is, and not let it interfere with their relationship. "It seems really silly to be embarrassed by someone you love, and I'm really proud of [him]," she says.

In some cases, siblings of persons with mental disabilities translate their experiences into a career. According to Harris, more siblings of those with a disability go into helping professions, such as education or medicine, than those without disabled siblings. "I think that says a lot about how people learn to feel respect and compassion for people who have tough lives," she says.
Johnson - who says she has come to appreciate her brother for who he is - wishes the other children on the McDonald's playland would show Jackson that same respect. But she has learned that people with disabilities have a great deal to offer, and that their disability is an integral part of who they are. "He has his meltdowns, but underneath he is a loveable person," she says. Through the eyes of his big sister, Jackson's disability is what makes him unique.

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Lily Alexander. Loves El Salvador, James Franco, "Freaks and Geeks" (best show EVER), Mint chip ice cream, softball and field hockey. She is OBSESSED with gmail and adores "Dirty Dancing Havana Nights" (and aspires to dance with Diego Luna). More »

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