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Growing up in Chicago, Alicia Meneses Maples had two younger brothers who were born with disabilities. David was diagnosed with a rare genetic disorder called severe combined immunodeficiency, and Mario was eventually diagnosed with autism.
Throughout her childhood, Meneses Maples’ mom would frequently stay at the hospital with David, while her dad took care of Mario when he wasn’t at work. Her parents didn’t have much time to care for Meneses Maples, who said she often felt like she was invisible.
In many families, parents or guardians can be so consumed with caring for a special needs child that their other children often respond by trying to reduce their own needs. The children without special needs can feel like they are “see-through,” as though they are made of glass, Meneses Maples said to CNN recently.
Meneses Maples refers to herself as an adult “glass child,” the sibling of a person with a mental or physical disability. She didn’t coin the phrase, but a TEDx talk she gave in 2011 helped to define it, and the term has circulated on social media ever since.
“We’re very sensitive to the needs of our parents and our siblings. And we love our mothers and fathers and our brothers and sisters. And we know that the problems that we have, the things that we face, are insignificant compared to what our parents are dealing with, and our siblings are dealing with,” Meneses Maples told a San Antonio TEDx audience 13 years ago. “So, we’re very quiet.”
Not much research has been done on the effects of growing up with a sibling who has special needs, according to Debbie Missud, a New York City licensed mental health counselor and psychotherapist and self-described former glass child. But television series such as HBO’s “Euphoria” and Hulu’s “Suncoast” have depicted these sibling relationships.
And now people like Meneses Maples are sharing their stories to help families in similar situations and to bring awareness to children who may feel unseen but don’t have the words to express it.
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How does a glass child disappear?
Often not due to any fault of their families, glass children can have their wants and needs put on a backburner as their parents tend to the sibling with greater needs, said Emily Holl, director of the Sibling Support Project, a national program that specializes in helping the siblings of people with special health needs.
Many glass children tend to set higher standards for themselves so as not to burden their already busy parents, Missud said. These feelings in childhood can lead to a desire to overachieve and be hyper-independent in adulthood, she added.
Both types of siblings can develop a sense of guilt about the family situation that is out of their control. “The child or the person with a disability will say, ‘I feel guilty that I just sucked up so much time and attention in our family,’” Holl said. “And then the sibling who doesn’t have a disability will say, ‘I always felt guilty because you have this disability that presents some daily challenges, and also in the context of a world that isn’t very accepting of difference to begin with.’”
It is important for adults to recognize that both sets of children have needs that should be met, Holl added.
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Growing up with special needs siblings
Meneses Maples loved her two younger brothers. Her brother David couldn’t play outside due to a weakened immune system, but she remembers playing with his toy trucks as they sat in front of the television. She would go swimming with her brother Mario at a neighbor’s pool but would get embarrassed when he often used the pool as a bathroom, she said.
Meneses Maples had to help with her brothers. She ensured Mario didn’t unlock the car door and jump out. At home, she would try to stop him from putting holes in the wall or breaking things. “There wasn’t anything I owned that he did not somehow break,” she said.
She knew what to do if her brother David had a seizure or if his heart monitor went off when her parents weren’t around. She shared a room with her brothers, and at night, she knew to call her parents when David threw up.
As Meneses Maples told the TEDx audience of her childhood, some audience members laughed at the relatability, and sniffles could be heard during other parts. One audience member later said she felt as if the presentation was meant for her.