Saturday, March 23, 2013
Sunday, March 17, 2013
I am just like you.
Just like you, I am not the sum of what I can’t do. Can you imagine if you were defined by all the things you couldn’t do? Would it go like this? “Meet, Jane. She’s not a rocket scientist. She’ll never go to the moon. She can’t walk on a tightrope. She’s not a Doctor or Lawyer. She’s just a caring person who loves and cries and laughs and breaths. Who hugs and plays and makes your heartache.” Who am I? I am just like you. I am Cooper Charles Stillman. I am the joy you didn’t know you needed. I am a philosopher of simplicity. I live in the moment. I know when you’re sad. I make my parents crazy. I am learning. I am the sum of my soul.
Below is a link to the International Down syndrome Coalition's new video for World Down syndrome Day (Thursday, March 21). The theme is "Who I am." I am one of the producers of this video. By that I mean, I gave a little bit of money and they put my name on the list. But I'm very proud to support this project nonetheless. Please check it out and share it and this post.
Friday, March 15, 2013
You know what a hipster is, right? We might have already been through this but just in case...According to my Momma hipsters are people who shop at Urban Outfitters and pay way too much money to look like they spent no money at all, they make their own beer and all the guys have facial hair like some weird throw back to a couple of centuries ago. Also, she says that men should definitely not wear skinny jeans. I am not a hipster (I can hear my mom say "Thank God" in the background. I think she's just mad that grunge is dead.) I am a trickster. Unlike hipsters, I bring joy and merriment where ever I go. Below is part one of my greatest tricks :
Bottles make great puddles
I start by choosing a time when Momma is obviously very busy and I begin to complain wildly about how hungry I am. Whining incessantly is my typical approach to this. If I am ignored for too long though, I will resort to full out tears. Works every time. Momma rushes around in the kitchen making a bottle while I encourage her to go even faster from the living room. It's fun to see how fast she can go! Upon her return, she puts me in my pack n play, on my little Michigan State Pillow Pet, and hands me my bottle. At this point, I often grunt and thrash for the full, "I'm starving" effect. This part is critical, I eat ravenously until Momma is satisfied that I have solid control over the bottle and she walks away. Now, if I'm actually a little hungry I might eat some but this is not the point of the trick. I learned that the hard way. The more you eat, the less funny the trick. In this case, less is not more. I wait a couple of minutes until I know that her attention is fully refocused on her activity and then I spring into action. Silence is key to this trick because if she hears me talking, she knows I'm not eating. So, I quietly sit up, turn my bottle upside down, give it a few shakes and watch the flow! There's nothing like it. I watch it run in small streams down my legs, onto the pack n play and converge into the most amazing formula puddles you have ever seen. It makes Momma so happy that for the next few days she keeps me on her lap while I eat. Tricks on her! I love sitting on her lap to eat. It's my favorite eating place and this trick works like a charm.
Chew, Chew, Spit (Or, How Much Money Can I Waste?)
As many of you know, I have been in an outpatient feeding therapy program. I hate it there. I don't even know why I have to go. I eat just fine. I love my bottles. Apparently they aren't age appropriate. Momma also says that beer and wine (love!) aren't age appropriate either. I don't get it. So, I was going to this place two times a week and it was the terrible. They sat me in a chair and made me play with food. All kinds of food: crumbs, pudding (disgusting! I don't do purees or anything slimy. That's just gross.), Cheetos, and sprinkles. They kept trying to get me to bite down on this Cheeto wrapped in gauze. I mean, would you let some strange person wearing purple gloves shove her hands, with a gauze wrapped Cheeto, into your mouth? I'm guessing no. So we would fight. There were times when I would just give up and bite the damn Cheeto because I wanted it over. But that was never enough for these people. They always wanted me to do it again! Not cool. "I did what you asked, now knock it off." For two months, twice a week, we went to this place and then almost every day at home (although, Momma didn't wear those creepy purple gloves) we went through the same exercises. It was dreadful. But I found a way to make them stop. Fighting wasn't working so I had to come up with another strategy. This was my plan: I do everything they want me to do except actually eat that stuff. I pick it up, put it in my mouth and chew the heck out of it. This brings all the wild cheering and the videos on facebook. But here's the trick, I spit it out. What I found was that after eight weeks of this, Momma said, "Enough. No more feeding therapy." I overheard long conversations about wasting money to pay to play with food, the rapid increase of power struggles not just around the food, how I have all the steps for eating but I haven't been able to organize them into actually swallowing food and how stupid (her word, NOT mine.) she was for scheduling this in the middle of winter. And then one day we quit. My trick worked! It seems as though the chewing was all she needed to see. So now I chew my food. Sometimes for old times sake, I play this game where I pretend like I don't want to anymore or like I've never done it before. That always gets a laugh. And it only cost Momma $600!
Stay tuned for Trickster Part II. Maybe I'll do it in the form of "Top 5 Things Never To Say About ___________." Those seem to be all the rage these days.