By Mai Ling Chan
It seems like there’s never enough time in a day to accomplish everything. I can barely get through all of the mundane tasks of life, let alone all of the “change the world” ideas in my head. Now, imagine if this was compounded by the challenges of having a disability or caring for someone with special needs?
As a speech-language pathologist and disability-focused business strategist, I have had the honor of working alongside fantastic leaders in the disability community, who are changing the world. These leaders are typically your everyday hard-working individual, parent, teacher, therapist, etc. However, they are guided by a passion that provides them with extraordinary vision and unwavering commitment to truly affecting people’s lives in a positive way.
In the Xceptional Leaders podcast episode Autism Parent Takes Advocacy to the Next Level with Catherine Hughes, I had the opportunity to connect with Hughes to discuss her mission to educate and encourage more families to share their stories as parents of children with autism.
“I was scared to share my story . . . but I became more confident . . . knowing that my story was going to truly change one life, five families’ lives, tens, hundreds, and know that the more I share, the more people I’m impacting.”
Like many parents of children with autism, Hughes was not fully prepared for the path following her son’s initial diagnosis. In addition to navigating new challenges and unexpected emotions, Catherine also found herself embracing the opportunity to support her child through education, community, and activism. This was personally daunting as it called for a skill which she didn’t feel she had fully developed: public speaking.
In this intimate interview, Hughes openly shares how her experiences with “palm sweating and paper-shaking” during her first presentations eventually led to inner-strength and centering. This grew from her understanding that the information she was sharing about her family’s experiences were so helpful to the families who had come to hear her speak. The positive feedback she received from parents provided her with the foundation she needed to continue presenting on a more consistent and larger scale.
As the founder of The Caffeinated Advocate blog, Hughes offers an intimate look at daily life with a child with autism from her perspective. Her story begins with the traumatic incident that led to her son’s diagnosis and continues today as her family attempts to navigate teenage and adult life with autism.
Hughes is the director of Family Support and Community Engagement at Achieving True Self, serving families in Maryland, Pennsylvania, and West Virginia. In addition to consulting and connecting directly with colleagues and parents of children with disabilities, Hughes is also very active on a larger scale through state-wide activism. She openly shares her family’s challenges and needs with lawmakers in the hopes of personalizing and ultimately, increasing financial and educational support.
She also strongly encourages and educates parents to find ways to share their stories and advocate at the state level. Offering transparency and clarity, Hughes encourages parents to bring their family members with them to events with lawmakers. “They need to see and hear what your life is like as a parent of someone . . . they need to see it real-time.”
Hughes explains that providing lawmakers with direct contact and first-hand experiences ultimately empowers them to better serve their constituents. She further attests that in all reported instances, parents have felt welcomed and encouraged to share their family’s story in a more meaningful way.
As a parent with an adult with autism, Hughes insists that the story goes far beyond high school graduation. Unlike typical teenagers, parents of adults with autism face different challenges when considering adult life and independence. She shares that, even though her child is 21 years old, she is still learning how to navigate her role as a parent to support him.
Ultimately, Catherine encourages all parents interested in advocacy to begin by telling their personal stories and ignore any insecurities they may have related to public speaking or writing because, in the end, the power of their story is so much greater and more impactful than they could ever imagine.
Mai Ling Chan
Mai Ling Chan, MS, CCC-SLP, is a speech-language pathologist, podcast host, and disability-focused business strategist. She works with parents, professionals, advocates, and people with disabilities to find their voice and create inclusive and accessible opportunities. Connect with her at mailingchan.com and listen to inspiring interviews of disability-focused leaders on her Xceptional Leaders podcast.