The daily tasks of raising a medically complex and neurodiverse child can be an isolating experience. Besides the direct hands-on care, the challenges of navigating the educational, medical, and insurance systems, seeking services, and researching resources for funding, left me feeling helpless. Family and friends provided loving support but were unable to assist us in finding solutions and laying the groundwork to plan for a future where our son could lead a full and dignified life.
The Family Leadership Series gave me a framework within which I was able to find hope, plan, and advocate for my son’s future. Learning how landmark decisions and disability rights were initiated by families just like mine gave me a sense of empowerment. Also, connecting with other families who had similar concerns was extremely helpful. Every member of the group had a perspective that expanded my horizons. I learned something from every single one of them.
Our trip to the State House was especially impactful. I brought my son with me. Witnessing my classmates connect with their representatives was inspirational and seeing my son read his vision statement to State Representative Joe McGonagle and Sean Garballey was immensely moving. Additionally, I want to thank my State Representative James Arciero, and State Senator John Cronin for supporting Bills and Budgets that matter to Michale, our family, and all families like ours!
I cannot overstate how much this program has impacted my outlook and given me the ability to plan an enviable life for my son.
-Stacy Limperis, Michael’s mom
Michael is an 18-year-old boy with Hypoplastic Left Heart Syndrome, Kabuki Syndrome, and Autism.
Michael came to our Statehouse Visit and read his Vision to five legislators and aides who came to speak with us!
Michael’s Vision In His Own Words
I am funny. When I tell jokes, people laugh and they are happy. I am kind and caring. I am a good friend. I am a great writer. I am good at math. I am a great speller. I like to watch videos like The Boy Who Cried Wolf and Sesame Street. I like to copy stories from other people’s words. I like to go to school and see my classmates. My mom picks me up at 2:50 pm. I liked when I had Boys Club and Art Club, and liked getting home at 5:00 pm. I liked to go to Martial Arts class. Things that are easy for me are typing, alphabetizing, and retyping stories from someone else’s words to my
notepad. I am also good at word search, dot to dots and video games. Other things I am good at are dusting, folding laundry, and getting my breakfast on weekdays. Things that I need help doing are making pancakes and making grilled cheese sandwiches on a hot stove. I ask Mom and Dad to help me with brushing my teeth and taking a bath. I need help climbing into the car. I want to go to college so I can learn Spanish and learn computer skills to work in a hotel. When I am done with college, I want to work in a hotel during the day because I want to check people in. I
want to live in a house with a wife and three daughters of my own names Angelica, Cassidy, and Elizabeth. I also want to have a dog named Mars.