Wednesday, December 9, 2009


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.

Wednesday, December 2, 2009

In the minds of children

A few nights ago I put the kids down then headed back to the living room to give Lily some much needed play time. Now, I can't throw to save my life, so tossing around balls for Lily is a bit of a hazard. I have only broken one picture (so far) and if you know me that is pretty good. This particular evening I managed to wing a speaker which sent the ball clunking into Kiera's bedroom wall. My heart sank.
If you are anything like me, when the kids are down, you don't want to see them again until morning. I answer their calls, direct sleepwalkers toward the potty and pull all nighters for sick babies but these days I try to take my mama hat off at lights out and take a break. Yes, I do know how lucky I am to have this freedom. No, I don't feel bad in the least about the fact that I really need a mama break. Guilt and I have an understanding at the moment.
Anyway, about a minute later Kiera comes slowly into the living room with eyes nearly bugging out of her head. "Mom," she said "I just heard the alligators back in my room." Oh for goodness sake, one miss throw and the alligators are back? NOOOOO! We have spent many months ridding Kiera's room of "bad" alligators and making strict night time rules for the "good" alligator that remains. But here we go (don't laugh, don't laugh, don't laugh).
Me: Kiera, we have sent away all of the alligators.
Kiera: But mom, I heard them in my dresser!
Me: That noise was me Kiera. I tossed the ball for Lily and it hit your wall sweetie. I am sorry it scared you.
Kiera: No mom. It wasn't a ball. It was the alligators. Now they're in my dresser. (eyes bigger, wringing her hands, voice a very serious fear whisper)
Me: I really don't think that there is room in your dresser for any alligators.( don't laugh, don't laugh)
Kiera: I am very nervous that there is at least one.
Me: Should we check?(OK, now I'm laughing, bad mom!)
Kiera: Yes please. (barely a whisper)
We then checked every drawer, nook and cranny in her room to find the offending alligator and when nothing was found Kiera agreed that she would go back to bed with this qualification, "I hope that is just the nice alligator." She honestly just thinks that I missed something.
Today, after seeing a mom nurse at play group, Kiera explained that mom's need to drink lots and lots of milk then babies can drink it off their bodies. OK.
Kiera's favorite expression is "superty duperty" As in "I love you superty duperty much!" Love it!
Kiera has found the funniest Christmas song ever. You know the one-
We wish you a Merry Christmas,
We wish you a Merry Christmas,
We wish you a Merry Christmas,
And a Happy New Year!
Now bring me some stinky pudding,
Now bring me some stinky pudding,
Now bring me some stinky pudding,
And a cup of good cheer!
She has been singing it for two days. Constantly. It was funny yesterday.
Kiera- Ben can I please snuggle with you cause you are my bestest friend?
Gotta love this girl!