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Lily LaChance speaks slowly but carefully, choosing her words. “We made this picture of things I like,” she says, referring to a vision board filled with photos of water sports, the outdoors, and tastefully decorated living spaces.
At age 19, Lily is on the verge of adulthood. She’s a high school graduate, a daughter, the little sister to two brothers. She volunteers at a hospital, participates in work experiences, and has a social group she likes. But like any young adult, Lily is still learning–still figuring out her strengths, her goals, and what she wants in her life.
Adopted as infants, Lily and her brothers Nick and Jack are all very close in age. “It was almost like having triplets when they were little,” recalls her mom, Lynn. When Lily was almost 2, she was diagnosed with profound deafness in both ears. It was a shock to her parents, Lynn and Tim. “There was so much we didn’t know,” says Lynn. “What would her life be like? Developmentally, there was a lot of catch up.”
Lily received cochlear implants in both ears, and began to experience all the sound exposure she had missed as a baby. She made strides in her development, but it wasn’t without challenges. “Sensory-wise, it was a lot of overload,” says Lynn. “It was difficult for her. When you’re the parent of a young child, they can’t tell you this works, this doesn’t. You have to figure it out.”
Around this time, Lynn and Tim were connected with St. Louis Arc’s Capable Kids and Families program. The program loaned therapeutic equipment, including a swing and developmental toys that helped them manage Lily’s sensory needs. It also provided information, resources and support. “Our Family Resource Specialist was really a lifeline,” Lynn says. “I am pretty resourceful myself, but I was like, somebody’s got to help me with this. And they did. They helped us build this whole network.”
Lynn and Tim used Arc’s family-driven ARCH Respite program to engage caregivers who knew Lily well, and who understood how to communicate with her. This allowed them time to focus on their other children, and to get a break when needed. And they soaked up information from Arc’s wide range of family workshops, learning about resources and figuring out how best to meet the needs of Lily and their family. “There was this concept of having a network,” says Lynn. “Having this whole list of people who are involved in your life, who can help along the way.” Because of those relationships, Lynn says they felt comfortable reaching out to Arc again now that Lily is older.
Lily has been meeting one-on-one with Arc Family Navigator Hannah Satterwhite, who helped her use the Charting the LifeCourse tools to think about various aspects of her life, make plans, and take steps for her future. Just like her parents were once empowered to advocate for their child, now Lily is being empowered to set and attain goals for herself.
“Through this process, Lily can identify a path she wants to try,” explains Hannah. “While she and her family won’t need us for everything, Arc is here if they do, with advice and connection.”
With Hannah’s support, Lily is investigating college programs and preparing an application. She also signed up for a continuing education class at the community college and worked with the school’s Access Office on accommodations. Lily and her family also consulted with Arc to identify assistive technologies that Lily may use to live more independently, now and in the future.
“To know all these kinds of supports are out there is huge,” says Lynn. “It means Lily can dream — she can dream about what she wants her life to be like.”
With your support for St. Louis Arc, young adults like Lily can find the services and resources they need to succeed and plan for their future.
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