She quit her job to care for her daughter. Her income barely covers necessities
Amanda Oropesa sat quietly at a desk in her small living room as she played a game on her laptop computer. Her mother Bessie, sitting nearby on a dark brown couch, gazed at her, smiled and said, “The computer is her connection to the world.”
Amanda was diagnosed with autism when she was about 4 years old. “I was devastated when the doctor told me,” said Bessie. “I asked, ‘how can we fix this?’”
Very quickly, Bessie learned there is no cure for autism, that it is a lifelong condition. “In time,” Bessie said, “the conversation went from ‘she may never’ to ‘she will never be’” like other kids.
Bessie quit her full-time job as an IT support specialist to care for her daughter. Immersing herself in the world of autism, she learned everything she could about the diverse neurodevelopment spectrum. “There is so much to know and so many acronyms to remember, like SP (sensory processing), OT (occupational therapy), PT (physical therapy),” Bessie said. “I had no idea.”
Unike Support Services in West Kendall provides services for people with developmental disabilities. It has helped Amanda enroll in Florida’s Medicaid Developmental Disabilities iBudget Waiver program, which provides support and services to low-income people living at home or in a home-like setting. A Unike support coordinator periodically visits Amanda to make sure she is receiving the care she needs.
Rene Gomez, executive director at Unike, nominated Amanda for the Miami Herald/el Nuevo Herald Wish Book. “Amanda’s mother is unable to work because she is constantly caring for her daughter. They have a special bond and despite their struggles, they should be valued, especially during the holiday season,” he said.
Amanda, now 30, and her mother, live in a small apartment in the Olympia Heights area of Miami-Dade County. Bessie has devoted her life to caring for Amanda’s every need, including bathing and feeding. They live on a limited income that barely covers necessities. New clothing, groceries, bed linens and a new laptop computer would ease their burden and bring a sense of dignity and joy to this family.
It’s unlikely that Amanda will ever be able to live on her own. One of her older siblings, who is not autistic, has promised Bessie that she will look after Amanda when Bessie is gone.
Amanda attends adult day care weekdays and receives behavioral therapy and physical therapy, all of which is part of her continual education programming. For many people with autism, fear is a big part of their emotional state. They also have trouble dealing with anxiety, depth perception and pain.
Bessie can’t always tell when Amanda wants or needs something. “Sometimes, she’ll have a stomachache, or maybe she bumped into something and she won’t say anything. She doesn’t know how to express the pain.”
Amanda receives physical therapy at Baptist Hospital and has been making strides. “She has a very good therapist there who is trained in sensory-friendly approaches,” Bessie said, “and we’ve discovered that Amanda loves hip-hop music. She often listens to Eminem, MC Hammer and Biggie Smalls.”
In addition to using a computer, Amanda has also connected with certain foods, such as mac and cheese. “She has to have mac and cheese several times a week,” Bessie said.
Despite their daily struggles, Amanda’s laughter keeps Bessie going. “She’s funny when we’re together.”
As a photographer takes photos of Amanda and Bessie, Amanda repeatedly says, “Una, dos — cheese!” And there is laughter in the room. “See?” said Bessie, “This makes me happy.”
HOW TO HELP
To help this Wish Book nominee and more than 150 others who are in need this year:
▪ To donate, use the coupon found in the newspaper or pay securely online through www.MiamiHerald.com/wishbook
▪ For more information, call 305-376-2906 or email Wishbook@MiamiHerald.com
▪ The most requested items are often laptops and tablets for school, furniture, and accessible vans
▪ Read all Wish Book stories on www.MiamiHerald.com/wishbook