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 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

Lisa M. Monge, MSN, RN

can make sure they do not get out in the middle of the night. Working in the emergency room, my hours are not typical 9-5, so, of course, I need early childcare and late childcare. How am I able to manage this lifestyle? By no means do I live in a home with a white picket fence. I do, however, have an amazing support system: my care providers, my ex-husband, my teenagers, and my current employer.

The Autism Society of Indiana provides access to Respite Care and Participant Assistance & Care (PAC) services throughout all 92 counties in Indiana to support families and ER nurses – Lisa Monge and Cindy individuals affected by autism. This care is delivered by our Direct Care Providers (DCPs). To meet the demanding needs of my family, I have three DCPs, all of whom are college students rotating their school schedule to meet my needs. Sami Jo Hart has been with the boys for over four years and is getting ready to move to Colorado. Allie Watson is our newest DCP but has known the boys since we moved to Indiana in 2016. Though all these ladies are extraordinary, Logan Moss spends the most time with the boys and loves them like her own. Logan has become a second mother to Brock and Brody. She knows their doctors, medications, likes and dislikes, has cared for them through illness, bought them clothes on her day off and even welcomed them to her own home on many, many occasions! Logan has also been a comforting shoulder when this overworked, stressed, and overly emotional momma needed a shoulder to cry on!

The Autism Society of Indiana workers at their birthday party September 2020. Brock is 7, Sept. 30; Brody 8, Oct. 20 Left: Sami, Allie, middle, Logan, right, Brody, left, Brock, right

As mentioned, I am a single parent through all this. I have full custody, and three of my four children are still at home. My oldest and only daughter, Livvy, is a junior at IUPUI and studying elementary education with an emphasis in special education. She has chosen this plan of study because of Brock and Brody. Livvy believes they need teachers like her to help them grow and learn at their own pace. Livvy has a special bond with Brody. Brody’s behaviors can be difficult to work with sometimes but he relates to his sister in an incredibly special way. Brock and Brody have an amazing big brother, Quincy at home. Although he is still a senior in high school, plays football, and works a part-time job, he always has time to play with his brothers. Quincy makes sure they are tucked in at night and has not missed a single Christmas play at their autism school!

The most difficult task was learning to co-parent. The boys visit their dad every other weekend and we did not When Brody fell 20 feet out of the window … This kid never left his side get along for a long time. We have in the emergency room. vastly different lifestyles and had dif- Quincy will FOREVER look out ... ferent views on everything you could an angel for these kids imagine. Then very recently a life-threatening accident occurred, and it all changed! Brody managed to push out the screen on a second-story window and fell nearly 20 feet to the ground, landing on grass and concrete. Everything changed. Our differences no longer mattered. Our focus and priorities completely changed. Brody managed to escape the fall completely unscathed. I can only believe it was divine intervention. From that day on, the health and wellbeing of our children became our priority at all costs. My children’s father and I put their needs and health above our motives, feelings, and agendas. We CHOOSE to communicate, collaborate and co-parent to give our children what every parent wants! Our children have enough barriers already. We, as co-parents, will work to maximize their future and potential by any means possible!

When Brody fell 20 feet out of the window … This kid never left his side in the emergency room. Quincy will FOREVER look out ... an angel for these kids

Having this amazing village in my corner is the only way I can live. For a long time, I felt like I was in a mode of survival and barely able to keep moving forward. Although I am extremely grateful to have a supportive management team at my place of employment (I’m a full-time ER nurse), I would not “live” without the whole village behind me. Having the ability to live and truly enjoy life, means I have the opportunity to take my children and enjoy the lake, go to a swimming pool or even have a fun evening at Chuck E. Cheese. I also have the opportunity to have respite, which is so important in my situation. Self-care is even more vital to the parent or guardian of a person with special needs. Caregiver burnout affects the individual and the whole family. With that said, I would like to send my gratitude to the Hoosiers in my village: Sami Jo, Allie, Logan, Quincy, Livvy, Juan, Deb, Cindy and Michelle.

Do you have a caregiver that you would like to nominate to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com.

ER nurses – Lisa Monge and Cindy