If anyone knows the right publisher I’d love to see this story come to life in a picture book. Enjoy going inside my head!
“Okay everybody here’s your GPS. Try to follow directions and don’t got lost. We got a lot of messages to deliver “Now let’s hit the road. Everyone “
“Hi, I’ I’m the Motor Cortex but you can call me Mr. MC for short. This is my wife Mrs. Up..She manages a group called the upper motor neurons I’m the part of the brain that plans and controls voluntary movements. I live inside Rachael’s Benson’s head. I work for a mail company called Rocky Road Tucking We don’t call ourselves Rocky Road Trucking for nothing. Let me tell you. Managing brain activity is a tough job but somebody’s got to do it. It’s especially difficult being inside Rachael Benson’s head because she has cerebral palsy. I was damaged as a result of lack of oxygen while Rachael was in her mother’s womb. Rachael can do a lot bet everything takes time and effort. Often I got damaged messages from the upper motor neurons who are supposed to communicate different messages to make different muscles work. With cerebral palsy because I’ve been damaged everyday tasks like walking and getting dressed are difficult. Often the messages that are supposed to go to certain parts of the body get misplaced and it takes me a while to find them. The messages have to take a detour and find another way around making it take longer for Rachael to do everyday tasks like walking and getting dressed, but let me tell you. Rachael is amazing. She doesn’t let anything stop her. When Rachael is determined she always finds a way to do something. The problem is making sure I know which way to go. I can’t always help Rachael control the movements of her muscles. If I hear a loud horn on the road more than likely I’m going to make Rachael jump. I can’t always control what happens. With CP the movements are involuntary. If I get the message to jump because I heard a loud noise I jump. The problem is the upper motor neurons don’t always send me the right message and then I have to the find the right truck route to take so that Rachael can accomplish a daily task. We’ll get Rachael where she wants to go even if we have to deliver a message snail mail. It will get there. Better snail mail than no mail at all. Right dear.”
“That’s right.’These days the mail moves a lot quicker. I remember when Rachael was really little. Her body was so stiff the upper motor neurons could hardly get the mail to move at all. Her muscles were so tight. There was so much traffic it took forever to get the messages delivered to the right place. Because I’m part of the brain my job is never done. My job is to figure out how to re-route certain parts in the brain so Rachael can learn how to do the everyday tasks she needs to do. Once Rachael learns how to do something repetition is the key. If she doesn’t do something for a while the directions I received from the upper motor neurons gets erased from my GPS and Rachael has to start all over and I have to find another route.
One of the first things Rachael learned to do was roll over. She went to something the humans call physical therapy which they say is designed to help the muscles learn how to relax. We tried to relax but the highways were crazy and traffic just would not move. Finally, the day came when she was rolling all over the place and giggling. I love hearing Rachael laugh. She’s always such a happy person!
After that the next message that came through was to figure out how to get Rachael up on her hands and knees. They had her lay over a pillow and pick up toys on a mat. Rachael also played with white things called widgets. The purpose was to help Rachael learn how to grab things. They made a funny sound. Again she was laughing. I don’t think Rachael realized she was working.
Finally my wife and her group sent me a message that said: “Up on hands and knees.” The key with cerebral palsy is sending out those messages to the muscles and making sure they’re not forgotten.
Some people who have CP are very independent. They don’t need a walker, wheelchair, or any kind of device to help them get around but they do have a limp in their step. Rachael’s parents hoped that would be her case, so at a year old the upper motor neurons tried to find the right message so we could make that happen but it never did. There was a huge bridge that collapsed and we could never get passed it. Rachael started with a private physical therapist named Gary whom Rachael saw twice a week. He was trying to help her strengthen her trunk muscles. He did things like have her sit on a big round orange ball and sit in the center. She had to stay in the center or she’d fall off. Boy was that a challenge. As I was driving down the road I remember thinking, “Please don’t push the truck off the road. Stay! Stay!” But Rachael’s body would go back and forth. Despite all the physical therapy she was getting her body was still very wobbly and the muscles were still very stiff. Many times the right messages could not get up to the upper motor neurons because of the stiffness in Rachael’s body. She had what doctors called spasticity which means muscle tightness. The messages couldn’t even get through so we could deliver them. We were stuck! All the roads were closed and we could not get anywhere. It was so frustrating! It seemed like it took forever to get through.
Things stayed pretty much the same. Life was pretty hard until the day her doctor told her parents about a surgery called Selective Dorsal Rhizotomy. The doctor said, “There’s a good chance that this will help Rachael walk independently but there’s no guarantee.” When they did the surgery they cut the nerve fibers that were causing the spasticity so that maybe the muscles in Rachael’s legs would loosen and she would be able to walk independently but it never happened.
The doctors did the surgery and we looked and looked for the right message that we could send to Rachael’s legs to tell them to walk, but we still never found it. However, the surgery did loosen her muscles enough that we were finally able to send the message to the part of the brain that says, “Hold your head up.” For the first time Rachael was finally able to sit straight up and focus on the teacher. Then she was able to be mainstreamed into a regular class with the help of a one on one aide to keep her up with the class. She managed A’s and B’s only a few C’s in the real tough subjects like math or science. Once Rachael could hold head her up, the neurons and I celebrated what adventures we would now take her on.
“BRRRRRING!” It’s Monday morning at Andasol Elementary School. It’s time to start another day. Her first grade teacher Miss. Wolf walked to the front of the room and faced the class. She had long curly black hair, white skin and green eyes.
“Good morning class.”
“Good morning Miss. Wolf.”
“Today we’re going to learn how to write our names. Everyone please get out a yellow sharpened number two pencil and write the capital letter of your first name.”
Usually Rachael just pecks at the black keyboard with one finger but wouldn’t that be great if she could write her own name? “Let’s see if we can help her do this.” The upper motor neurons tried to send me the right message but the letters would come out very sloppy. We practiced for a month and guess what? We finally found the right mail connection was finally able to help her write the name RACHAEL in all capital letters. YAY! Rachael was finally able to write her name in all capital letters. YAY RACHAEL! Now the next step is to learn to write a capital R at the beginning and a lowercase letter for all the other letters in her name. Unfortunately, even though Rachael has learned to write name I still wasn’t able to help her learn to write quick enough to keep up with the class. Bummer! I’ll have to work hard to help Rachael get her muscles up to speed. Maybe she needs to learn how to isolate her fingers first. .Rachael’s got determination. She can do it! Just not right now.
One of the biggest things Tammy tried to work with Rachael on was dressing skills.. She was trying help Rachael to be as independent as possible. Rachael never had any trouble getting her shoes off but getting them on was another story.
Through the years Tammy tried to teach Rachael to use many things that were supposed to help her such as a shoehorn. It’s supposed to help her slide the shoe on but it seemed nothing helped. First, Tammy put powder on the shoehorn and then Rachael would pick it up and slide her foot and then pick up the shoe and put it in the shoehorn, and then slide the shoe on other foot. The problem is Rachael has very little feeling in the bottom of her feet. It’s one of the side effects of the surgery. We lost a mail connection there. That makes it hard for us to help Rachael push her own feet in the bottom of a shoe. A piece of plastic didn’t help much. It ended being just one more frustrating obstacle. She also tried to teach Rachael to pull her own pants up and down. She had Rachael get down on the ground and roll side to side to get her pants down. Every time Rachael did that the pants would go all the way down past her knees and then she couldn’t get the pants back on. How frustrating!
A lot of times Rachael’s mom would leave the pants off when she was around the house by herself. We were never able to find the right mail connection in therapy but the upper motor neurons found it many years later when I was searching through old the piles of mail. Rachael was standing in the bathroom with her walker by herself. She took her right hand and put behind her and slowly pulled down her right pant leg. Then she did the same thing on the left. She did it! She finally did it! Do you know what this means? If we found that connection, maybe we can find other mail connections. Maybe we will find the connection so that Rachael can put on her own shoe. Maybe we can find the connections that would help her dressed herself instead of having someone do it for her Maybe it’s just a matter of time. You never know what’s hidden in the mail at Rocky Road Trucking! This place is full of surprises! I can’t to see what we help Rachael do next!