Letter from America.
Let’s face it; babies are born as selfish critters who firmly believe that the sun, moon, and stars—not to mention the entirety of their parents’ existence—revolve around them. Because the egocentric newborn diva has no other way to communicate with others, she will whimper, cry, screech, or wail until her immediate needs are met. She doesn’t give a furry fat rat’s naked skinny tail that you are occupied in the bathroom, trying to accomplish the very task that your own baby, by virtue of her normal spontaneous entry into this world, has made so terribly but temporarily difficult for you. When your little bundle of love wants your attention, she wants it pronto! Whether she is hungry, wet, gassy, too hot, too cold, or just plain bored out of her gourd, she will let you know in no uncertain loud and clear tones that she wants you to come to her aid; moreover, she will continue with increasing urgency to let you know that she is summoning you, up to and until you meet her needs.
Eventually, you will learn to distinguish one of your baby’s different cries from another and will react accordingly. But that wee one will remain self-centered until you teach her otherwise. It is a parent who teaches children to share. It is a parent who shows them, by example, to watch out for others, to be kind to others, to respect the person and property of others. Given enough time and attention to this training, most human beings acquire sufficient generosity of spirit in their relationships with others to last a lifetime (and, at the very least, to be tolerated by others during that lifetime).
Some babies, though, seem to be blessed from birth with a few extra nurturing genes. One category of children—if children can truly be categorized—is that of the caregiver. A subcategory of those tiny caregiver types comprises siblings of special-needs children. In the course of my adult professional and personal life, I have worked with children of elementary school age. Without knowing a thing about a group or class of children at first, I have often spotted a caregiver sibling; seven or eight times out of ten, I have subsequently discovered that my observation was correct. In one instance, though, it turned out that my supposition about a child was incorrect, but only partially so: The special-needs person in that particular child’s life was not a sibling but rather a first cousin with whom the child shared a two-family house.
In all cases, it was something in the eyes and body language of tiny caregivers that caught my attention and piqued my interest. Theirs were the ever-observant eyes of trained undercover operatives. As quickly as some children’s eyes can well up with tears, the eyes of a caregiving sibling can swiftly flash with an either proactive or defensive expression of readiness to intervene in situations which other children might fail to recognize or completely ignore.
In corresponding recently with a now grown-up version of the littlest caregivers I have known, I asked Janet* how her role in her special-needs brother’s life was perceived by her when she was a kid. Her written response was both predictable and surprising. She, now in her mid-70s, pointed out that “times are different now.” Janet’s special-needs brother, who would be in his early 70s now, had he lived beyond childhood, was born with Down syndrome. “Back in the 1940s, my brother was called a ‘mongoloid,’” Janet recalls in an e-mail to me. “If a ‘mongoloid’ child didn’t die at a young age from cardiac problems or pneumonia back then, he or she was often placed in a ‘home.’ My parents were encouraged to do just that to my brother but, after they visited several facilities—some nicer than others—they decided to raise Joseph* right along with the rest of us—eight kids in all. Of course, no public schools back then included special-needs children, so my school life and home life were worlds apart,” Janet continued. “That doesn’t mean that I didn’t witness some cruelty directed at my brother. Joseph couldn’t—or wouldn’t—defend himself when another child snatched a toy out of his hands at the playground or called him names when we walked to the candy store, but Mark* [Janet’s next-oldest brother] and I developed quite a repertoire of retaliatory insults and street-fighting maneuvers to protect Joseph from bullies and other ignorant people.” Joseph died from complications of a strep infection when Janet was 15. He was 12 years old.
When Janet’s grandnephew Jared* was diagnosed with autism as a toddler, Janet was surprised to see just how much things had changed for special-needs children. Her niece, Lauren,* was immediately put in touch with professionals of all types. Jared is now in a ‘regular’ public high school. He works with a special-education teacher for part of the day, and with a trained paraprofessional who serves as Jared’s “life coach” for another portion of the school day, but he spends lunch period, physical-education, art, and music classes with the same kids he sees in his neighborhood outside of school. Janet admits that Jared has encountered some bullies and ignorant people in his young life—“some things never change,” she writes—and she further admits that Jared’s brother and sister have used many of the same protective techniques that she and Mark once thought they had not only invented but also perfected when they were kids. “The difference for Jared’s siblings, though,” Janet says, “is that there are many more mainstreamed children with special needs. Jared’s brother and sister meet fairly regularly with a group of siblings of special-needs kids; they share their experiences, discover that they are not alone, and learn that all of their feelings about their role in the lives of those siblings are legitimate and worthy of discussion.”
What has not changed, however, is the fact that the siblings of children with special needs have special needs themselves. The support group that sponsors the events which Janet’s grandniece and grandnephew attend recognizes this. It is no wonder that other sibling support groups, ranging from the loosely organized to the more professionally structured, are springing up with increasing frequency throughout the U.S. What services a society provides for children with special needs has varied from country to country for centuries. Only relatively recently has there been much attention paid to the siblings of special-needs children. Is our society fully addressing their needs, too?
*Name changed to protect the privacy of the individual.
By Cara Sheridan O’Donnell.
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