Many parents have taken leadership roles and are actively involved in advocating for their children and others with disabilities. They serve as representatives on panels, they have leadership roles on boards, and they work in non-profit organizations and government agencies. They have testified before school boards, legislative bodies and at public hearings. Here are some of their stories.
Mitzi Proffitt, a Director at Parent to Parent of Georgia shares the story of how she has achieved a leadership role with the Georgia Council on Developmental Disabilities (GCDD).
Patricia Lanaspa, a staff member at Parent to Parent of Georgia, tells her story of how she came into a leadership role in the through her work at P2P and as Chair of the Community Advisory Council for the Center for Leadership in Disability (CLD) at Georgia State.
“It takes a village to raise a child.” I have heard that phrase since I was a little girl. I was raised in a community where my neighbors and my relatives are one and the same. For that reason, I always assumed that “village” meant my aunts, uncles, grandparents, and cousins. They loved me, taught me, and shaped me. When I became a parent, I assumed I would be able to turn to my family for support and guidance. When my youngest son was born and we discovered he wasn’t the picture of health, my village started to dwindle. They were afraid. They were unsure of how to talk to me, terrified of offering to help care for my son, and hesitant to build a bond with a beautiful baby that may not be here much longer. I knew this because I had the same feelings for a while there. So here I was, two children; one on the spectrum and the other a medical enigma, working with a skeleton crew. To say I set out on a quest to find my village seems a little dramatic, but that’s exactly what I had to do if I had any hope of surviving parenthood!
Small towns are notorious for not having much, and that certainly rang true for special needs organizations. There were no “support groups” when my boys were little. My first shot at finding my village was an adaptive baseball team. I still remember our first game, even though it was over ten years ago. I timidly walked my boys up to the field as if I was afraid they would take one look at us and turn us away like a pack of stray dogs. Imagine my surprise when they greeted us like they had known us for years! It was such a great relief. Our village grew a whole baseball team bigger that day…and that was just the beginning! Since then I have grown stronger as a mom, as a friend, and as an advocate. My village opened doors for me that helped me find my voice in a world that sometimes feels hidden.
A few years after meeting those wonderful women on that baseball field, I was sitting in a doctor’s office with my youngest son and struck up a conversation with a mom who was just starting her journey. Our children did not share diagnoses, but I saw myself in the uncertainty in her eyes. I think that was my “aha moment.” I could make a difference in her world! I instantly took on the role of the diplomat for the special needs community; the person that would show her that she has a huge village, just waiting for her to show up! It is hard to explain the feeling you get when you help someone who feels helpless. It’s almost addictive. I often overwhelm myself with volunteer opportunities, not because I cannot say “no”, but because helping others helps me. I have learned so much about myself, my children, and my community.
Growing up, I always dreamed of becoming a mother. It’s all I have ever wanted. Never once in those dreams did my children have special needs. Now, I won’t sit here and tell you that raising two kids with special needs is an easy peasy dream come true, because I would be lying! However, being their mom has opened doors that I never would have even known about. Thanks to my boys, I am a supporting parent volunteer with Parent to Parent. I am an educational advocate. I am working towards becoming an educational surrogate, and I have a passion for connecting new parents to the resources they need. Thanks to my boys, I can go to that new mom at the therapy office, the young parents in the specialist’s waiting room, or the worn out mom in the grocery store who looks like she’s about to break and say “Hello, my name is Donna. Let me introduce you to your village.”