Normal. A word we don't use around here. Ever. Here, there is just no such thing. It is a concept of a mold that we neither fit into or acknowledge as something we should fit into. We are who we are and for the most part we are OK with that so we are not bound by the demands and disappointments of "normal". Unfortunately the world and the folks in it, still have a pretty firm grasp on their idea of "normal". Whatever that may mean to them. I understand it. I really do. I get "normal" as an idea that holds a community to a standard that brings together its members in a peaceful and functional way. In a way, part of our (mostly Ben's) problem is that our appearance fit's this idea of normal.
When Ben used his walker more regularly or when he wears shorts and others can see his knee high braces, he is given a bit of leeway. Don't get me wrong, this is often not a good thing. People see the hardware and jump to all sorts of conclusions; can he hear? (yelled in his face), can he see? (those are his feet you are looking at crazy lady, not his eyes), you been drinkin? (we get this a lot), not to mention all of the "sensitive" people who won't let their children get within 5 feet of the walker and assure their children that "he might not understand you" so "lets just give him some space". But it can be a buffer for the behavior that steps outside of this norm. If he bumps into folks, they accept the apology. If he trips, falls, runs over your toes, jerks his head or arms, takes a while to answer, is in the way, talks too loud, talks to slow, doesn't play "by the rules", won't eat the food, cries when he hears loud bursts of noise AND his is showing a bit of assistive equipment, people pause before they react. They just do. BUT if they react before they see the gear, then see the gear, red faces and back peddling are sure to clear them from our view in a wink.
In the absence of obvious assistance, we face anger. Anger, judgement, exasperation, fear, frustration, impatience, annoyance and invisibility. Words that should never be pressed on a child. As much as I don't like that I have to explain the bad behavior of children to Ben, I do it because it is what it is and we can pretend that children know how to deal but that won't make it true. I shouldn't have to explain the bad behavior of adults though. I shouldn't have to say things like "they didn't know you were losing your balance, try to reach out to me next time." A grown woman should know better than to yell "OUCH" at a 42 pound kid who tripped into her. Grown ups should take responsibility for the fact that they are the adult and have the ability to hurt or have compassion. It shouldn't make my heart rate rise to take my kids to Target for fear that some a$$ will provide me yet another opportunity to clean up a potential emotional scar. I shouldn't have to thicken my skin against the stares and the whispers. I shouldn't have to put on my cheerleader hat every time I leave the house so that Ben is protected by a playful approachable mom. But if I don't, at best (and worst) Ben is ignored. If I am not in the trenches paving the road with folks who understand a bit more then the average joe, I hear things like "Socially he is doing great this year. Such an improvement!" then watch as my happy playful boy goes to almost every child he passes on the playground only to be backed away from, run away from and excluded in play. And he keeps trying, with a smile, while my heart breaks at how hard he is working to be a part of things. Yeah, he is doing great. But "normal" gets in the way every time.
