At just seven months old, Elena Humiston was diagnosed with an underdeveloped brain, and it was made clear to her mother Rose that Elena would need daily support throughout her lifetime. This is alarming for any parent to hear, especially when Elena’s diagnosis was incredibly rare. In addition to providing her daughter with support, Rose would have to become an educator and advocate for her daughter for the rest of her life. As she grew older, Elena was able to gain support and services throughout school programs, but the question of what would happen after she graduated remained a concern for her family.
The Humiston’s were living in Chicago, and many of the resources Rose was familiar with were targeted at children. As Elena aged out of programs, it became important for Rose to find services for her daughter, but identifying what was available was difficult. Even more difficult was the wait list in Illinois for services, which was 5-10 year estimates to receive support in a day program. Feeling unguided and unsure of what to do next, the Humiston’s moved to St. Louis, where the wait lists were significantly shorter.
Overcoming the wait time, however, only solved one of their problems. Most programs advertised a specific diagnosis, like autism, that they would be able to support. Because her diagnosis was so rare, Elena and her family struggled to identify which programming would be a good fit for her. It was unclear who was equipped to support Elena without doing research, education, and advocacy. Many organizations suggested full residential support, which was not the ideal for the Humiston’s or Elena. On top of this, when they were matched with a day program that seemed promising, they were met with disdain and negativity. Rose’s concerns and questions about the program were dismissed, and she did not feel she could trust this program with her daughter.
After struggling to match with services, Rose ran into an old co-worker who connected her to Easterseals. Elena and Rose were able to shadow the Meaningful Day Program, where they dropped off food for Meals on Wheels. They met Trish, who listened to Rose’s concerns and was receptive to Elena’s needs. Elena enrolled in the program for three days a week, and then after deciding she enjoyed it a lot, she attended four days a week. Her ability to go out into the community through the program has made her more open to visiting places she previously did not want to go. Now, she and her family travel frequently, and Elena is trying more and more new things. She has a group of friends she is able to socialize with in the program and knows her routines. Rose knows that as a parent, she is always going to be scared for her child in some way, but at Easterseals, she knows the people truly care about her daughter and her well-being.
