Luke loves playing with water. He loves swimming pools, spraying water out of spray bottles and especially splashing in the fountains at Janss Marketplace. Like many 8-year-olds, he is fascinated with LEGO’s, horses, climbing, exploring the neighborhood, and jumping at Dojo Boom. For Luke and his family, play is a big part of their communication.
“I feel it a great privilege to be able to express some thoughts and emotions that come with raising Luke, my 8-year-old child with Autism Spectrum Disorder,” explains Joyce Shen. “I am aware within the autistic spectrum there lies such an array of uniquely extraordinary individuals, families, and circumstances. At the same time, it feels daunting to express in words the trials, joys, love, and heartache that come with being Luke’s mom.”
Because Luke is nonverbal, he struggles to express even his most basic needs. Luke began receiving speech therapy as a 2-year-old, but the countless hours of speech therapy over the past 6 years seemed to make little difference. As an example of his current speaking ability, Joyce explained that if she is with him at a playground and asks him, “Do you want to play more, or go home?” he might softly utter an approximation of both options: “puh muh… go hote” as he strives to verbalize “play more, go home.” While Joyce might not truly know what Luke prefers to do, she says, “I find endearing his genuine effort to at least imitate the words modeled.”
When Luke was 2 years old, he suffered a traumatic brain injury when he fell head-first from a window that did not have its security bars properly bolted. “It’s realistic to expect that Luke’s disability, exacerbated by the freak accident, will plague him all his life,” Joyce explained.
Joyce relies on her faith for strength quoting a favorite Bible verse she feels applies to both she and Luke. “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:8-9). “On my own, I don’t have what it takes to be a good mom for Luke. Without God’s help, I would not have the wisdom to respond helpfully to frightening and unexplainable tantrums, nor the strength to arouse my panicking son from deep sleep to clean up leaked feces. Without the hope that God supplies,” Joyce continued, “I could not patiently persevere despite multiple failed attempts at potty-training, endless appointments and therapies, and days where Luke’s behavior and performance regress.”
Joyce expressed that she is not alone in caring for Luke. Her husband and Luke’s grandma also spend time helping to meet Luke’s needs. Joyce shared, “My twin sister is another individual who offers moral support as I deal with parenting challenges. She sees that the daily struggle I face is worth the priceless moments shared with Luke – moments like when he affectionately nudges his head toward me, or when he bursts out in a bubbly laughter that brightens people’s mood.”
Joyce also voiced appreciation for other important people in Luke’s life. “He loves it when his therapist, Sara, wraps him into a ‘burrito’ with a soft blanket.” Waving goodbye to Sara after a long productive day at school and therapy is one of Luke’s favorite parts of his daily routine. Luke also has an occupational therapist, Ellen, who challenges him with a variety of activities and works especially hard to teach him communication via an iPad app.
“Luke has a special caretaker, Yana,” Joyce shared, “who buys him toys and is always cheerful and playful with him. He always lights up when Yana comes over.”
Gina, Adam, May and others who volunteer at Calvary Community Church’s Special Needs Ministry are also important people in Luke’s life. “These caring teachers,” explained Joyce, “always greet Luke with such warmth and they love him for who he is, while also seeing his potential.”
Luke is a wonderful blessing in the lives of his mom and other family members. “My sister and others (including Luke himself) remind me that just as God enabled me to give birth to Luke, God calls and empowers me to be the special mom that Luke needs.”