By Lisa M. Monge, MSN, RN
MEET THE MONGE FAMILY
Lisa, Livvy, Quincy, Brock & Brody Not Every Fence is White and Made of Pickets I am a single mother to four children, two with Autism Spectrum Disorder. Four years ago, my then-husband and I chose Indiana to be our retirement state after he completed 20 years of active duty in the military. While moving around with his military career, delivering three children through deployments, I also managed to obtain a Master of Science in Nursing and an undergraduate certificate in Nursing Care of Children with Autism Spectrum Disorder. In the fall of 2016, while I was on shift at a local pediatric emergency department, our 4-year-old had to be rescued from our community retention pond. Aside from being a nurse, graduate student, wife, and mother of four, the day my autistic child jumped into our retention pond, I became an autism momma bear on a mission to find a way to prevent another child in Indiana from drowning in a retention pond. I learned the state of Indiana does not have any regulations on retention ponds. Since this horrific experience, we enrolled in the special needs swimming lessons at a local pool near me, but they were not effective for the specialized needs our children required. The Applied Behavior Center for Autism granted us a scholarship for Brock and Brody and they had four swim lessons by a specialist dually trained in autism and swimming. Their progress was amazing! Like a majority of families with disabled children, the cost of appointments, multiple therapies, special diets, medical equipment, etc., are already financially draining, so the added cost of appropriate swim lessons (although priceless) is not feasible for the typical, working-class family. Unable to afford the costs, I began to seek opportunities not only for my children, but other children like Brock
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and Brody and other families like mine. I learned to write grants. Grants have made it possible to provide 65 children per year vital special-needs swimming lessons they otherwise would not be able to obtain. Advocacy for me has become a way of life. Networking through the special needs community allowed me the great honor of being selected to complete the Indiana Governor’s Council for People with Disabilities Partner in Policy Making (class of 2019). The council focused on leadership training and skills to create positive partnerships with elected officials to influence policy decisions and services supporting those with disabilities. I learned of so many resources at local, state, and federal levels during this program and feel compelled to keep advocating. Being a single mom, emergency room nurse, clinical nurse instructor, grant writer, and advocate … does NOT come easy with two young children at home that have disabilities. I feel frustrated at the system and the roadblocks. I am exhausted mentally and physically. I worry all the time about the future of my little boys and often feel like I am not available enough for my teenagers. Brock and Brody are not aware of their surroundings and both are an elopement risk. We have an alarm system, special locks on every single door, including the bedroom. They sleep in my room so I
