Guest columnist Elsa Warren is communications manager at I Am Boundless. For many people, the first introduction to the world of intellectual and developmental disabilities (I/DD) is hearing the words, “Your child has a disability.” It can feel like the scariest thing in the world for many parents. But not for others, as they may feel like the long-awaited answer finally explains what they already suspected. It can be overwhelming being new to the I/DD world. What does your child’s diagnosis mean for the future? What can you do to help them? What should you be feeling? Unfortunately, there is no sole source for answers. However, three parents of newly adult children with I/DD share insights and advice that may put your mind at ease as you navigate what a new diagnosis means for your family. Melissa Engle, workforce and community services manager at Boundless, has a 28-year-old son who was diagnosed with autism spectrum disorder (ASD) at 18 months old. Even though she had challenges with coming to terms with Josh’s diagnosis, she did not stay in denial long. Through research and education, she realized that her son did not need to be “fixed.” His ASD is just one aspect of who he is. Engle credits Applied Behavioral Analysis (ABA) therapy for the advances Josh has made. It is important to not compare your child to anyone else. Every parent must learn the best ways to advocate for their child as an individual. Realize that there will be missteps, and it is OK to not know everything. According to Engle, who changed careers to care for her son, there is no right way to do life. She suggests finding a pediatrician who has a relative with I/DD, as they truly understand the challenges. Jennifer Corcoran’s 22-year-old son Matthew was diagnosed with Dandy-Walker malformation during her pregnancy, and she was told there was a limited chance that he would survive. “We were stunned, but I vividly remember pulling out a pen and paper from my purse,” Corcoran says. “We went into the discovery phase. “Then I remember walking out of the building and looking around, thinking that the world is still going, but it had just stopped for us.” Corcoran’s biggest challenge was caring for her two older sons because, while she quickly accepted Matthew’s diagnosis, she did not want them to have to adjust their lives. She wanted Matthew to have the typical school experience, so she enrolled him in the same classes at the same Catholic school with her other sons. However, Matthew wasn’t typical, so physical therapy, occupational therapy and speech therapy were supplemental interventions. Corcoran wishes she would have valued friendships and time away from the constant pressure of “being a mom” more. “Sometimes you must slow down and breathe,” she says. It is completely normal to get stuck in the denial phase. “There is a process of acceptance that ranges from denial to peace,” Boundless board member and fellow parent Sue Ralph says. “I was once told that the heart accepts what the mind has a hard time grasping.” She advises parents to give themselves some grace. “Time and love for your child will help you navigate this new and sometimes uncertain diagnosis,” Ralph says. The common theme is simple: Everything is going to be OK. These moms acknowledge that the early days are the most overwhelming, but as you learn about your child’s needs, it gets easier. “Spend time with your child,” Ralph says. “Have fun. Find joy. Focus on their beautiful uniqueness.” Readers are invited to submit Opinion page essays on topics of regional or general interest. Send your 500-word essay for consideration to Ann Norman at [email protected]. Essays must include a brief bio and headshot of the writer. Essays rebutting today’s topics are also welcome.
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