Lio and his family: The long fight to leave behind lifelong isolation
Born too soon, by caesarean section and not breathing: Lio’s start in life was anything but rosy. When he was diagnosed with “autism accompanied by moderate mental and physical disabilities” the small family simply folded.They completely withdrew from social life. Today one thing is clear: The decision to withdraw from society was worth it. Lio is doing better than ever.
What do parents, friends, family, neighbors and potential playmates remember about Lio’s first two years of life? His constant crying. “The only time he stopped was to eat or sleep,” recalls his mother, Melanie. “The rest of the day all he did was bawl.” The family’s first attempts to get to know other mothers with children failed miserably. Regardless of whether it was a private playdate or a playgroup for babies his age, Lio never stopped crying and made the situation unbearable for everyone involved.
“At that point, it was clear to us that our son is a very special child,” says his mother, Melanie. The complications during childbirth, the months spent at the neonatology clinic, his large head, flat nose and eyes spaced widely apart indicated that he had various deficits. When he was eight months old, he was diagnosed with muscle weakness.
Sixteen months later, a diagnosis followed that devastated the parents: severe autism spectrum disorder with moderate mental and physical disabilities. In addition, the doctors found two cysts in Lio’s cerebellum, which, among other things, exerted pressure on the nerve responsible for balance. “Until now, others in the vicinity – like neighbors or friends – simply saw us as ‘those people with the crybaby,’” says mom Melanie, describing her experience at the time. “But that was a temporary condition which would surely end soon. The diagnosis changed everything. Now that our son was ‘permanently disabled,’ these people all turned away from us.”
“Every activity had its place. Whether it was getting up, eating, playing, sleeping, or going to therapy: Everything had its time and its rhythm.”
Melanie, who at the time was 32, felt completely isolated and misunderstood. Her husband Peter reacted to the situation by social withdrawal. She did not feel that the pediatricians took her seriously. Melanie changed pediatricians several times before deciding to become an expert herself to care for her son. Trained as a pharmacist, she began to read up on all kinds of autism therapies, acquired in-depth knowledge of the subject and dared to take a radical step. “I began to structure Lio’s everyday life: Every activity had its place. Whether it was getting up, eating, playing, sleeping, or going to therapy: Everything had its time and its rhythm,” says Melanie, describing the way she completely ritualized her everyday life. The only social contacts they had to the outside world were to Melanie’s mother Elsbeth and the therapists and doctors treating Lio. Melanie spent the rest of her time at home with her son, totally isolated and focusing solely on his needs.
Father and partner Peter was now also “on board.” He realized that “we needed him and that he would only remain part of the family if he gave Lio and me the support we needed,” recalls Melanie. It is clear to her from the start that she is going against the grain with her own isolation-based therapy. But she won’t stray from her plan – and her strategy seems to pay off: After months of isolation and ritualization, Lio makes eye contact with his mother for the first time. Reluctantly, he learns to communicate using gestures. After a year of full isolation, the family slowly begins to open up again to the outside world.
The way out? Extreme retreat within.
“For me personally, this self-imposed exile from the world was the only way to do justice to my child and to not let the situation devastate me,” says Lio’s mother today. This rigorous step did not result in any additional major losses.
At 42 years old now, Melanie has meanwhile realized that their isolation had already begun with Lio’s birth in June 2011 and those many months he spent in the neonatology department. This was a time when the parents barely had enough energy to care for themselves and their newborn son. Social activities were out of the question – and it stayed that way. Lio’s constant crying and the doctors’ diagnoses sent the family down a big black hole. Her former job at an export company, contact with friends or neighbors, excursions or trips: This was all off the table. The way out? Extreme retreat within. By focusing on herself and her son, Melanie set a lot into motion. “Through my involvement in Lio’s therapies, I realized that I, too, suffer from Asperger’s Syndrome,” says Melanie, explaining her experience. “This realization not only helped me to better understand myself and my behavior, but it also made me feel closer to Lio in his world.”
“Fall down, stand up, put your crown back on, keep going. Because staying on the ground is not an option.”
Caring for a child with multiple disabilities on your own, mainly in isolation and thereby learning that you yourself are autistic: How did Melanie get the strength to bear such burdens? “My rock was and is still my mother Elsbeth,” she says. “She has always given us her unconditional support.” To this day, Melanie has refrained from psychological help, a coach or spiritual support. She believes neither in fate nor in God, but only in herself and her family. Her life is purely an act of willpower. She succinctly clarifies what she means by that: “Fall down, stand up, put your crown back on, keep going. Because staying on the ground is not an option.” Melanie emphasizes the importance of never forgetting to take care of yourself – even if it all it means is taking the time every day to take a deep breath or in the evening to consciously perceive how good it feels to lie in bed.
When Lio is four years old, the family moves. His new home is in a small rural village within greater Zurich. The 856 residents quickly get to know and like the small family. The family lives directly in the civic center building itself. This way Melanie can go back to work. She oversees the tenants who rent the communal hall located in the basement. Lio attends a special needs kindergarten in the region, can fully communicate using gestures and speaks his first word at age six.
“We feel at home here in the village,” Melanie sums it up. Everyone knows everyone. However, the family isn’t yet fully integrated because they can’t “actively participate and have a say.” Lio cannot attend the local kindergarten or a gymnastics club, so he and his family are still “outsiders.” Although they are present in the village, they aren’t fully “moored” yet. Melanie is convinced that this will not take long, because they have been a family of four since May 17, 2018. Lio’s little brother Bent was born healthy with no complications. He will grow up in the village and thus act as a bridge builder for the entire family. Covid-19 and the associated measures have delayed the family’s efforts to get to know the community, while also casting a different light on their practice of self-isolation. “Because who isn’t socially isolating these days?” asks Melanie with a shrug. For once, the family’s secluded lifestyle seems perfectly normal.
The internet and language as a way out of isolation
“I am now comfortable in my role as mother to Lio and his little brother Bent,” says Melanie. This includes accepting that everyday life with a disabled child does not fit into the simple “image of life” dreamed up by younger mothers who often seem somewhat clueless. “I can count on a few, good friendships in my immediate vicinity,” admits the mother of two. “Otherwise, I do most of my social networking on the internet. Exchanging ideas with families in similar situations is extremely valuable. Not having to explain yourself all the time helps a lot.”
For the first time in a long time, a family assailed by difficult challenges can finally experience a bit of levity. Nobody knows whether or how long it will last. The two cysts in Lio’s cerebellum are still there. To date, the doctors say it’s inoperable
Lio’s life also took a decisive turn in the past few months. The 10-year-old has made great strides and is able to communicate verbally. He speaks fluent standard German. Lio used to need his mother Melanie to translate his various gestures for outsiders and to make his concerns or needs understandable to others. Thanks to his language skills, he now speaks and interacts directly with the people around him. Lio has not only overcome his complete self-isolation but also taken the professionals treating him by surprise. He is now thought to have learning disabilities without any form of intellectual disability. Since August, he has attended third grade at a day school for children with behavioral issues and learning difficulties. A teaching assistant helps him cope with everyday school life. The third-grader is a warm-hearted boy, still quite shy, but liked and respected by his classmates. He is learning, step by step, to use language as a means to connect with others and to interact.
What does Lio dream of? He likes the idea of learning English and having a real friend who understands him and whom he can invite home to play. His mother Melanie shares this dream and adds her own dreams to this: “The doctors never thought that Lio would be able to talk at some point or that he would be able to independently manage large portions of his daily life by himself,” says Melanie. “We now know what is possible.” For the first time in a long time, a family assailed by difficult challenges can finally experience a bit of levity. Nobody knows whether or how long it will last. The two cysts in Lio’s cerebellum are still there. To date, the doctors say it’s inoperable. But things can change. Lio and Melanie firmly believe in change.
Published in October 2021 in “KMSK-Wissensbuch” (www.kmsk.ch)