Friday, May 11, 2018

Eliza Factor on Caring for a Child with Periventricular Leukomalacia (PVL)

In this interview, Eliza Factor talks to Alexander “The Engineer” Lim, host of AuthorStory by about her book, Strange Beauty: A Portrait of My Son.

“We work better by working with other people and helping other people.” ~Eliza Factor

Although Eliza didn’t have a typical middle class life until she settled down with her husband, she describes herself as a “typical person” leading a normal life before her son, Felix, entered her life. She contracted chickenpox while she was pregnant with Felix, and this impacted Felix. He was born early and his being “floppy” after he was born was initially racked up to his being a premature baby. Eliza and her husband then began going to doctors and getting Felix tested before he was finally diagnosed with having periventricular leukomalacia, which is essentially when the brain’s white matter is damaged during fetal development. This has led to Felix’s combination of cerebral palsy and autism as the two major conditions which he has to this day.

At the time that he was diagnosed, at the age of one, nobody could tell Eliza if Felix would even walk or talk, and it was then that Eliza realized that her son wouldn’t grow up the way other children did. Eliza notes that diagnoses are the labels presently used today to access the services one needs, as even a diagnosis like “autism” is a basket terms to describe various conditions. She remarks that Felix’s conditions mean that he can’t do things for himself, although he can do such things as standing up, if he is helped. Eliza also notes that, despite the violent behavior that Felix exhibited, and despite having some limitations with communicating, such as describing things in the past tense, he is very communicative, with an ability to strongly connect with others and share with them an “infectious” sense of humor. Despite this, Felix apparently has a far more tenuous connection with his body than others, with Eliza hazarding that Felix can most likely feel pain but doesn’t know where exactly it comes from.

Felix lived at home until the age of ten, and Eliza describes life with him as “rich, full and exhausting,” as it was also during that time when Felix displayed cyclical, violent behavior, during which times he would hit himself for periods of up to three days straight. She wrote Strange Beauty after placing Felix in a residential school, where he could live in an environment where his needs could be met, and with her home now feeling empty, she had the time to reflect on her experiences with Felix. Eliza attempts to explain the process of her journey within its pages, to the point of embracing and accepting the disabilities within Felix and recognizing the disabilities in herself and in others, which was liberating for her. She also wants to use the book as a way to open up conversations about what it’s like to live with a disabled child, particularly those who can become as violent as Felix could, and points out that what is needed is more specialized education programs in public schools as well as training amongst public servants on how violence can escalate and how to de-escalate it.

Eliza also learned how to read other people’s body language after years of observing Felix. She also realized that she needed help from others, not only when dealing with Felix’s outbursts but also with other aspects of her life. She notes that public support for parents and families with children who have conditions similar to Felix’s is lacking at present. Eliza remarks that there are people who may look and act normal but who have conditions similar to Felix’s (which cause outbursts of violence and behavior) who are punished, rather than helped.

Eliza notes that there were people out in the street who would walk up to her and Felix and interact with them, with some offering to help and most just saying “hi,” which were positive experiences for her. She started a community center for families with children who had disabilities, an art and play center which runs on a volunteer basis (and which is intended to be an indoor place which was open to everyone), as well as to use disability as a way to bring people together. Eliza notes that meeting within the confines of the community center, is energizing and fun for members of families whose common thread is having a disabled child, as it brings out the best in her as well as with everyone else involved.

Eliza also notes that Felix’s younger sisters had a good relationship with him when they were younger, but were jealous of such things as needing to be able to put on their clothes by themselves while Felix was given help. Their view of disability is different from most people, which is highlighted by the story that Eliza gave - about telling her daughter about a game she played as a child, when she and other kids would ask each other about what disability they would rather have. Eliza’s daughter was confused by the story, as her daughter had never considered blindness or deafness as being a disability.

To those who would find themselves in a position similar to Eliza’s, her advice is to love the child as they are, to seek help when needed, and to follow the child’s lead, as the child will give clues to how they want to be handled, as such children shouldn’t be forced to be something they aren’t. She also believes that all of us are disabled in some way, and that there is a lot of fear about this, but that that is the way humans are and that is okay, which opens up freedom for oneself and others.

Purchase from Amazon: Strange Beauty: A Portrait of My Son by Eliza Factor

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