3 minute read
Meet Marvelous Margaux - Liz, Justun & Margaux - A Blended family
Aaron Olson – Writer and Contributor
Liz and Justun live in the Little Flower neighborhood, located on the near-east side of Indianapolis, with their daughter Margaux, four cats, and their dog, Lisa Marie. Justun and Liz are both teachers by trade and met while teaching at the same school. Margaux is Justun’s daughter from a prior relationship, but it wasn’t long before she developed a tight bond with Liz, who recently stepped away from teaching to help with her care. Liz, in addition to helping with Margaux’s care, writes a children’s book series called “Marvelous Margaux.” The book series is based on Margaux’s experiences and the challenges faced by children who have similar disorders. The book series makes no profit and any money made is put directly into creating more books. “My plan is to create a series that includes all therapies, doctor appointments, and other rare diseases to promote awareness,” Liz said. Margaux was born with Dup 15q syndrome, a genetic condition in which chromosomes 15q11.2-q13.1 are duplicated. The disease manifests itself primarily as a neurodevelopmental disorder that is often accompanied by autism spectrum disorder, epilepsy, and intellectual disability. It is the most common cause of genetic autism. Though autism through this disorder generally presents with the usual set of symptoms, people with Dup 15q syndrome are more likely to have motor impairment and impairment of daily living skills while having a lower severity of autism as measured by the Autism Diagnostic Observation Schedule (ADOS). Generally speaking, this means that people with this type of disorder may display a higher degree of social function.
There is a great deal of care dedicated to Margaux’s needs. Initially, Margaux struggled with potty training, sleeping at night, and dressing and feeding herself. Over the years and with a lot of help from Liz, Margaux has started to overcome some of these hurdles. This year Margaux has joined a T-ball league at a church and Liz decided to coach the team. Margaux’s therapy schedule is extensive. In addition to standard ABA therapy, Margaux also receives recreational therapy, feeding therapy, music therapy, and occupational therapy. (Notes from Liz: "Margaux still is not perfect with potty training, sleeping, and such. She has had help from me and improved greatly, but also with help from her therapists and doctors as well. I am very regimented and provide a strict routine, which helps her thrive. I really enjoy working on her socialization as therapies have tended for M to gravitate to adults instead. This is why we have signed up for sports (tball), and summer camps for neurotypical kiddos and I attend/coach as her 1:1. aide.") Both Justun and Liz are becoming more involved in the special needs community and welcome the opportunity to get together with others to share stories! Liz is currently a parent volunteer for ASK, a planning committee member for Noble’s Raising the Stakes event, and a chair for their church’s summer festival. She recently applied to be a board member of the Little Flower Neighborhood Association and the national Dup15Q Alliance board. Additionally, Liz is currently applying to become a notfor-profit called “Marvelous Margaux” (same name as her book series) that provides free parent advocacy and evaluates business establishments for sensory friendliness.
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