What it’s like to be a ‘glass child’

Alicia Meneses Maples is seen on Monday, April 22.

(CNN) — 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.

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.

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.

As she listened to Meneses Maples’ story, Shelley Cook, an adult glass child herself, began to feel a mix of emotions, she said recently — sad, angry and robbed of a childhood she never had.

On the day Cook was born in 1979, her 2-year-old sister, Andrea, was diagnosed with leukemia. The treatment that saved Andrea’s life would leave her intellectually stunted, according to Cook.

Andrea loved Disney Princesses, coloring with her little sister and brother, and would often repeat her phrases to have the last word. The sisters would play together, and they would fight, as sisters do.

“My sister would put me in my place quite a bit,” Cook recalled. While her parents both had work to do, Cook would bring Andrea to outings with her friends after school and give her the most “normal” experience that she could, she said.

As a teenager, Cook said it was hard to accept when her sister would do things that weren’t age-appropriate. Often, a trip to the store would end in her sister having a fit because she couldn’t get something she wanted. At school, Cook said she felt responsible for helping her sister and for protecting her from unkind remarks from their peers.

Andrea passed away in March 2020 at age 42 due to colorectal cancer. Cook didn’t have kids of her own, always planning on taking care of her sister when their parents died, she said.

“I had this fantasy of an older sister who would teach me everything I needed to know, and who would kind of protect me,” Cook said. “I wanted her to have a full life. But it seemed like the world was not built for her to have a full life.”

As Cook sat in the audience of the TEDx presentation, she thought of her own childhood. When the program was over, she met Meneses Maples outside. “Now I know why I am the way I am,” she recalled telling Meneses Maples.

Being a parent to a glass child

Dr. Al Freedman met Meneses Maples in November, when she spoke to a group of people ages 25 to 66 whose siblings had fibromyalgia. Freedman, a licensed psychologist, had a son, Jack, who died in 2021 at 26 from the rare disease spinal muscular atrophy. Freedman also has a healthy daughter, Cara, who is 24.

With their age difference of almost five years, Cara learned how to walk via the help of Jack’s wheelchair. Jack didn’t have the strength and abilities to play in certain ways, but Cara enjoyed sitting with him for a computer game in which he used his eye movement to control the mouse, Freedman said.

Jack’s medical needs required innumerable hospital visits and in-home nurses. Sometimes, friends and neighbors would step in to bring Cara to tennis practice or choir concerts. “Cara’s life was disrupted often,” Freedman said, “and she wasn’t attended to in ways that Mom and Dad would have chosen because we had to have our eyes on Jack every second.”

Careful not to put his daughter in any caretaker roles, Freedman said, he knew she liked to help Jack when she could, often assisting a nurse or her parents in getting her brother ready for bed. At 7 or 8, she started to volunteer with her dad at conferences for Cure SMA, an organization that helps families of spinal muscular atrophy.

“When a family like mine goes anywhere, everybody notices that child in the wheelchair, but not everybody pays the same amount of attention to the child that is next to the child in a wheelchair,” Freedman said. He described his daughter and other glass children as flexible, independent and compassionate due to their childhoods.

Freedman specializes in counseling the families of a person with a rare disease, with recent work tailored to the experiences of the other siblings, he said. He draws on how he always kept communication open with his daughter and would ask for her patience while he had to tend to Jack, he said.

It is important not to assume what the needs of a glass child are, said Missud, the New York psychotherapist. “Ask them, open a dialog and have that conversation,” she said. Missud also recommends giving the child more agency by providing opportunities to make decisions around the house, such as what to eat for dinner or what film to watch on movie night.

Parents need to know that kids are always watching, Freedman said, and will likely try to refrain adding to their parents’ full plates with their own problems. “Your parents may have come up short at times; I came up short at times,” he said. “But everybody was doing their best under difficult conditions.”

The mental health of a glass child

Meneses Maples’ brother David was 5 when he died. Meneses Maples, then 11, started to have thoughts of suicide, she said. But when adults asked if she were OK, she would tell them she was fine, she recalled.

“Well-meaning adults would see me when I was 6 or 7, and they’d say to me, ‘Alicia, you need to be a good girl for Mommy and Daddy. They’re taking care of Mario; they’re taking care of David. So, you do whatever you can to make Mommy and Daddy happy,’” Meneses Maples said during her TEDx talk.

“If I could travel back in time, and visit young Alicia, in those moments, I would whisper in her ear, ‘Tell them that’s not your job,’” she said recently.

More than a decade after her TEDx presentation, Meneses Maples receives messages from parents of glass children seeking her advice. Meneses Maples said she hopes to inspire research on glass children by spreading the word through presentations and workshops.

“I thought perhaps by sharing my story with many people, many children’s lives will be forever changed — many glass children’s lives,” Meneses Maples said. “This is my passion. … It’s very emotional. It’s taxing, but it’s what I’m supposed to be doing.”