Friday, February 19, 2010


Ewww! What a funky time of year it is for me. There are things missing from this time of year for me and things that are being accomplished as well. It seems that I am simply not as good at covering my bases during the winter. For example; I can get the ball rolling on improving Ben's current school situation BUT can't plan swim lessons at the same time or I can initiate cool activities BUT can't remember to take pictures to capture the evens or I can talk on Ben's behalf BUT can't keep up with my friends. The list may or may not be longer (I don't know because I keep losing it :)) but it sure seems to require singular focus. Is multitasking easier for me when the sun is shining or is my winter list just that much more complex? Don't know, but it was 39 degrees yesterday, so I have hope! Some cool things: Ben and I sat down with the Kindergartners at his school and talked to them about CP. We were invited to do so when it became clear that a number of children thought that Ben had broken legs that were not being fixed. ("Mom, can we just bring in an x-ray machine and then fix Ben's legs for him?") I read a letter to the groups, then Ben fielded questions. It was pretty cool to hear the questions they had (How old were you when your brain got hurt?, Will CP get worse for you?, Can you run without your walker?, Does it hurt?, What do you like to play outside?, Can you play tag with me?) and even more cool to hear how Ben answered these questions. After the first group Ben said "Thanks so much for coming mom. I did it!" Yay! Another cool thing is that I was able to meet with some folks at school (speech path, social worker, psychologist and teacher) to talk about the teasing and unhealthy interactions that are happening in and out of school with school kids. Good news is that I have been there a lot lately (happy side effect of my work hours feeling the financial crisis) and shared my observations with folks so they came to the meeting with some observations of there own. We all agree that the dynamic in the room needs a boost so we are working together on a school wide positive school program that will address these issues AND they are bringing folks into the room for large and small group activities to work on a positive environment for everyone. You can already feel the attitude shift. Fantastic! (I am leaving out a really ugly side of this 'cause it is not meant to be that kind of post :)) Among the greater things to come out of the hubbub with school building move (we are moving, it is not good), is that I have connected with a mom who is fighting for her little guy too. We are dealing with some different issues but we have each others back on the issues and she is not afraid to squeak, as loud as she needs to and she is all about squeaking for both of our boys. Nice to have her next to me when the pressure is on. There are all sorts of good things that are happening that have nothing to do with changing school climate but that will have to wait for another post. I will leave you with the letter that we read to the children (not sure how this hasn't made it here yet). This letter was passed to me (with some modification of course) from a CP mom who got it from a CP mom get the picture. The child that this "Kindergarten letter" originated from is in high school now. If you can use it, please do. Hi! I’m Ben **** and so far I’m really enjoying being in Mr. ******* Kindergarten/First Grade class with you. Sometimes when I first meet people they wonder why I use a walker to get around, so I wanted to see if I could answer some questions that you or your parents might have. I’m a kid living with cerebral palsy, or “CP” for short. I was born with cerebral palsy. When I was born part of my brain got hurt. The part that was hurt is connected to my muscles. So the muscles in my legs and arms don’t get the right messages or get mixed-up messages and it makes it hard for me to control my muscles the way that you can when you walk and play. CP isn’t a disease. I’m not sick, and you can’t catch CP from playing with me or being my friend. CP is something that “happened” to me when I was born. I hope that you’ll feel comfortable asking me or my parents questions if you have them. Here are some things that kids have asked before: Will you always have CP? Right now, there isn’t a cure for cerebral palsy. This means my doctors and nurses can’t “make it go away”. But my whole family, together with my doctors, nurses, physical and occupational therapists help me to learn as much as I can to manage it. I’m learning how to control my muscles better and better every day. What does a physical and occupational therapist do? A physical therapist helps me to use my muscles better. They help me do exercises to make my muscles get stronger. The physical therapist I see at school is named Mrs. *****. I also see Ms. ******, an occupational therapist, who helps me learn to use the muscles in my arms and hands. I feel really lucky to have them help me! What else do you use to help you? You’ve probably noticed my foot braces. They help keep my feet in a good position for walking and moving. My walker helps me to get from place to place when I have far to walk. Sometimes I even use crutches. Sometimes I use special devices to help me do things, like different scissors or a chair during circle time. People help me sometimes, too. Mrs. ****** helps me a lot. Everyone is learning really fast when I need help and when I can do things myself. I really appreciate it when people help me, but sometimes it’s frustrating when people do things for me that I know how to do myself. Usually I just ask when I need help. Do you want to be treated any differently because you live with CP? No! If you’ll just try to be patient and understanding with me, that will be great. Living with cerebral palsy is really just a very small part of who I am. On the inside, I’m a lot like everyone else. Thanks for taking some time to learn about CP! Your friend, Ben