I mentioned last month that our home was spared from a horrendous fire that destroyed and damaged over 450 homes in our neighborhood. We lost our barn, our detached garage, and many trees, but having replaced some electrical wires we are able to live in our house. It took us three weeks to get back in, but we are glad to be home. Since returning I have watched our neighbors deal with devastating loss, as they sift through all that remains of their own houses. Most are in good spirits, talking about how they are coping and how dealing with insurance and contractors can be slow and unsure. I see large trucks rolling down our street taking away what remains of homes and barns and trees. Utility vehicles come and go, mixed in with heavy machinery that is on its way to help one or more of my neighbors.
Some days it seems like we are living in a fish bowl. People drive down our street, slowing down in front of every home, standing or not. They stare or take some pictures.
What struck me was how similar this is to being a parent of a child with special needs. The biggest difference is that no one is calling those dealing with the fire “special.”
Has anybody ever tried to console you by saying that you must be special? You know, because you’re a parent of someone with special needs? I have always hated that trite comment, because I don’t feel special. I feel like a guy who is trying to do the best he can with the circumstances he has been given. Those dealing with the loss of their homes aren’t thought of as somehow blessed by God because of what happened. People are seeing the fire victims’ difficulties as a life-changing event and rallying to help. Groups are coming into town to help them recover, and food and water are being delivered to those affected. The outpouring of help and assistance is overwhelming. We had the Red Cross stop by with a couple of councilors and a pastor to ask us how we were doing. Our church called us to see if there was anything they could do to help. Many of our friends have offered help, and have come over to help us sift and sort through the rubble. Our county officials are waving fees for rebuilding and replacing official papers lost. Everyone is being generous and helpful. Why is it not the same when we get the diagnosis of a special need?
Really, other than the fact that fire damage involves the question of having a roof over our heads, there are amazing similarities. What I don’t see is the outpouring of support, the rally of all those groups to aid those affected. Our individual difficulties aren’t on the scale of an enormous fire, but to a family in the initial stages of dealing with a disability the emotional and physical impact is much the same. Our state and local governments need to see the trauma, challenges, and uncertainties inflicted by a disability in this manner, and respond in the appropriate fashion. The Church and para-church organizations need to rally like they do in a disaster. The problem is that they often lack this urgent understanding of the situation. Disability is something always with us, and so it's difficult to grasp the full extent of its impact. Not so with a dramatic disaster, where the massive effects are impossible to ignore. So, most of the time, churches fumble around not knowing how to help, and we as the affected family often don’t ask for help. As I look at the houses down my street I see people cleaning up, others who are already rebuilding, and some who haven’t even started doing anything. We parents are in much the same stages.
I wish I could explain disability issues to my church, city and state in this way so they would understand the real extent of the problems we face. Special families are families in need, just as much as fire victims, and those needs demand a response. Hopefully we all get the chance to connect with various groups, working to make changes in the way they respond. That’s why Need Project exists, and why we continue to do what we do.