A Busy Mom Sets Her Sights on Housing Stability

Thirty-eight-year-old Janie Desir is one of those people who says, “You can sleep when you’re dead.” As the home-schooling mother of a five-year-old autistic son, she comes by her sleep deprivation honestly.   

Every Monday her day begins at 3:30 a.m. She’s out of the house with her son by 5:30. They need to make it to Orlando by 7:30 for the first of his three therapy sessions. By about 11:00 a.m., assuming no transportation glitches arise (more on that in a minute), she’s back on the road and headed home. Then lunch, and then they homeschool.  

On Wednesday, it’s Monday’s schedule all over again, with the addition of another behavioral specialist who comes for two hours in the evening. Desir can sometimes “get a break” during those few hours. By “get a break,” she means she has time to schedule doctor appointments, arrange rides, plan meals, and work on her business. 

Thursday is pretty much a repeat of Tuesday plus boxing lessons, and you don’t even want to know all the things that happen on Friday, which Desir, with a straight face, calls her “laid back” day. Suffice it to say it includes two different therapy appointments, a tutoring session in her home, and a “Fun Friday!” ritual she’s created with her son that includes things like playing outside or cooking dishes that relate to what he’s learned in school that week. Last Friday it was curried chicken; another week it was “gummy jewels” to tie into a lesson on astronauts and moon rocks. 

How does Desir describe her daunting schedule? “It’s all strategic planning,” she says. “At the end of the day, I’m just trying to stay humble.”  

Usually when someone interviews Desir (and people often do), they want to know about the books she’s written, and what it’s like to be the parent of a child with autism. Today, though, she’s talking about her ongoing journey to achieve stable housing.  

“It all started with being homeless,” she says. Desir was living at home and enrolled in Indian River State College working on an associate’s degree in graphic design in 2014 when her mother lost her home and decided to move away.  A caseworker at New Horizons helped her and her younger brother get housing through Homeless Services Council and the Permanent Supportive Housing program, where the rent she pays is based on a percentage of her income, rather than the full market rate. 

Sadly, her brother passed away shortly after they moved into their home. “That was a blow,” she says. Desir finished her associates degree, and then, unable to find a job, made plans to return to school to pursue a bachelor’s. That’s when she was diagnosed with keratoconus, a rare, progressive eye disease that affects the cornea. By 2018, she was legally blind. (This explains why a sizable portion of Desir’s hectic schedule is devoted to arranging transportation.) 

She put her school plans on hold to attend a three-month program at a blind rehabilitation center to learn to live without her eyesight. In 2019, another blow came when a fire in the apartment above hers caused flooding, and she lost everything. She was homeless for several months before finding another place to live.  

Undaunted, Desir returned to school. She worked directly with the accessibility team at Adobe to find ways to use the software she needed. In 2022, she graduated with a bachelor’s degree in graphic design. Her son, born in 2020, walked her across the stage. That’s also the year he was diagnosed with autism. 

Desir’s first book, Teaching Your Baby the Numbers in Braille, began as a school assignment. Keratoconus takes a person’s sight gradually, and Desir wanted her son to be ready should he become blind as a young adult. She also wanted to make sturdy board books to enable blind parents to read with their sighted children. The first book was followed by three more, to teach colors, shapes, and the ABCs. She is currently working to get this business off the ground, and she has just enrolled in a master’s program in community journalism and digital media. 

Desir is grateful for all the assistance she has received, especially when it comes to housing. She is determined to give back to the community that has helped her. “A lot of people don’t realize that when you are disabled and you have a child, it’s not like your disability income increases,” she says. “I had to learn how to maneuver around, use different resources, go to food pantries.” She relied on “Mommy and Me” classes and sought other community resources to help buy baby clothes, diapers, a crib and car seat.   

Now, she shares what she’s learned at community meetups. She feels good when people refer to her as a “rainbow of resources.” She hosts “Sippy-cup and Paint” gatherings in local parks, speaks to preschool classes about what it’s like to be blind, and talks to teenagers in the blind community, encouraging them to “go at it” and “try things.”  

Desir and her son moved into the duplex where she currently lives just six months ago. She is one of the 179 people on the Treasure Coast impacted when HUD failed to make payments to the Homeless Services Council last fall. She knows there is no guarantee that the program will be renewed in the next funding cycle. “I don’t really feel hopeful for the future when it comes to this,” she says. “I’m just trying to stay level-headed and think strategically and be humble through these crazy times.” 

Desir, who seems to have risen to more than her fair share of life’s challenges, understands that closed doors are made to be knocked on. Should the time come when she has to move again, let’s hope a generous community will answer.