The r-Special Nation Community tells the story of overcoming the lie that our families belong hidden in isolation. To the parent living with special needs: I challenge you to renew your commitment to community.
What are your greatest fears? Mine? Watching my child suffer. Not connecting with my child. Day after day observing his differences become society’s definition of him. Feeling helpless as he lives a lonely existence, never hanging with friends. Never going to college. Never being able to be safe without me. Never getting married. Never having children. Never using the bathroom independently. Some fears I didn’t even know existed until I was faced with them: being physically overpowered by my child as he grew larger than me. Or rejection of any sort of affection, while the nurturer inside me was dying of starvation. Sitting with friends whose children are nuero-typical and hearing about parties, sports, conversations, mother’s day messages, vacations… And I will even say it. A greatest fear of mine was not fitting in anywhere because of my son. Not even in my family. All of my safe places seemed ripped from me. Not even in my place of worship, the one place everyone is supposed to belong.
But this story is one of overcoming. It’s about taking those fear labels and writing each one on an imaginary, helium balloon. A fear balloon. You see, I used to walk around gripping those fear balloons. They slowed me down. Everything I did was difficult. Constant reminders. They never let me forget the loss. The grief. Then one day, because I stumbled into the concept that my son is much more and he belongs in community, I decided to release those fears. At first I couldn’t because they had become so familiar to me. As I let each fear go I could still see it until it eventually faded away in the blue sky of my future, and the future of my once futureless child. I don’t expect you to release those fear balloons yet. And that’s ok. What I do expect is for you to begin to open your heart to the idea of an open, bright, blue sky for you and your child, too. I want you to hear these words: “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11) For me, I didn’t even highlight that scripture in my Bible because I didn’t really believe that it was meant for me, or my son. I was wrong. My child was created for relationship, even with his profound autism and awkward sounds and jarring body movements and expressionless face. None of those things are his intention or fault. He is just as worthy with the ability to contribute and capable of belonging and being part of a thriving community as the typical boy next door. Actually, I began to learn that he and those like him have more than usual to offer to society because of their daily, relentless struggle. Today as I help him walk through a crowd or as he leans into me to cover his ears when the sensory environment is overwhelming or as his need overpowers what the rest of the family had planned, I am able to consider it an honor to parent this boy. For he and those like him have so much to offer me. And you. And everyone.
So today, right now, I want you to begin to believe, even with your hands griped around the strings to those fear balloons, that the promise in that scripture is meant for you and for your future-filled child. So let’s begin belonging together in a community starting with this story and you. My hope for you is hope, because fear tries to rob us of hope. But hope empowers us to overcome fear and grief and takes what was robbed from us and fills that void with something even more beautiful.
Now, quiet your mind and begin to visualize, even journal, what the ideal community would look like for you. Don’t allow behaviors or presumed avoidance issues you believe your child to have block this. Just dream. Then commit to yourself that you will join an existing community and help make it into that incredible community you envisioned. Or, start one yourself. Oh yes you can.