I have been chided for sharing too much information about my son and his needs. There are people who say, “This is his story to share. That is, should he choose to do so.” Little do they know, our stories are tied pretty tightly.
Then there is the flip side. There are those that want to know the whole scoop. Anything and everything. They think I’m not sharing enough. I keep too many things to myself. I am too private. They just need to know to need to know. You now the ones. I used to get so worried
still kinda do about am I giving away too much or am I sharing too little?
But these days I’ve decided it isn’t really about pleasing everyone else and their need to know. It’s about what is right for our family. How about you? Where do you fall in this? Sharing is caring? Or do you keep it close to the vest? I’ve decided whatever is right for you is probably right. We need each other in this special needs world; building one another up in Christ. You do you, Special Needs Parents!
The truth of the matter is, there aren’t many of us out there in our communities to whom we can reach out. We are an island. Or a beacon. Or an island with a beacon! At times it can feel like we are by ourselves out here with a spotlight shining on our differences. Our differences are quite noticeable whether we like it or not. If we leave the house we get noticed. If we go to church, Target, a restaurant; we get noticed. (Notice: these are the only places we go.) Once in a while we find a family across the room that is similar to us. Or a face in the crowd that ‘gets it.’ When this happens? “Laaaah!” It’s like angels singing. Our family all says, “Loooook!” It’s even difficult for us to not stare at a special needs family. I bet it’s even more difficult for us than for others. We are so drawn to families that have special needs because we aren’t seen out in public often. We can’t stop looking at this rare sighting! We want to feel the solidarity, the togetherness another special needs family can offer. (By the way, we totally get why y’all aren’t out in public much!)
When my son was younger it seemed the information and support was easier to find. But as he has grown into more of a man these have dwindled. When we found ourselves in a real pickle with his behavior, the help had all but dried up. We found ourselves holed up in the house for most of the time without any direction.
I decided then that I would share our story. Because I couldn’t find any one else’s stories or solutions, I would share mine. About that time I came across a book; someone sharing his family’s disability story. “Laaaah!” Someone who “gets it.” Here was someone who finally said what we felt. Disability wasn’t easy. But God wasn’t going to leave us alone in it either. I am so thankful he shared his story. Sharing was caring! That story led me to a whole network of families who are each living out special needs in different ways, yet helping each other in their walk. God is using these stories to help us through difficult times. You do you, Special Needs Parents!
I don’t know your story or how God is leading you. In my case, I hope I can help just one person by sharing a piece of our story like others have helped me. I’m trying to find a balance. Somewhere between shutting ourselves off/not helping anyone with what we have experienced and being too loose-lipped with our life is where I want to be. Being a special needs parent can be a tough road at times. We need each other as a source for support and guidance. I love hearing how Christ is leading other families touched by disability. I want you in my club, my tribe, my squad, my <insert trendy group name here>! I want to hear how God is leading your family. Whatever that may be, you do you, Special Needs Parents.