My experience with Athletes Serving Athletes

Two years ago I decided to get involved in a special running program called Athletes Serving Athletes because it provides an excellent opportunity for many great runners and kids with disabilities.  They use a wheelchair for racing called a “jogger”.  It is a chair that has three wheels that ride down the paths and walkways much better than a manual chair.  People who are amazing athletic runners volunteer to push others with physical disabilities strapped in the joggers.  There is a giant handle for them to use to help them hold on.  My father and I trained as a team so that we could be prepared for races through our community where we live. I am really impressed that my dad is strong enough to run behind and push me.  The most important reason why I chose to become part of ASA is that I enjoy running and participating with other people.  My teammates have been doing such a wonderful job learning how to run with the jogger. It is always great exercise and it would of course be a reasonable way to improve overall fitness.  Lots of teenagers and younger adults who are fantastic at running are welcome to join this club so they can train on how to push disabled kids in wheelchairs who wouldn’t otherwise be able to participate in races like people without disabilities do.  This makes us happy and helps maintain more focus on our strengths instead of weaknesses.  The leader of my big group, Stephanie Blades, indicates that we’re hoping to have numerous people get into the Howard County group.  Therefore, there are applications available for new Wingmen to complete.  My dad and I have a great time together enjoying athletic events, including football, biking, and swimming besides running.  It helps me to stay busy and make new friends in my life. I am obviously hoping to have my peers who are successful runners sign up to be on my team since it is one of the most popular programs in Maryland that includes individuals with and without physical impairments.  

I remember seeing a famous team named Team Hoyt, which is similar to what my dad and I’ve done.  There is a man named Dick Hoyt who spends most of the time with his son, Rick Hoyt, who has cerebral palsy and can’t talk in a normal way.  Their story inspired me because my dad and I like to run together.  Running together has been the best part of my life, just like Dick and Rick Hoyt.

Book Review - "Say What You Will"

Here is a summary of a novel I just read called “Say What You Will” by Camilie McDover, published in 2014:

There is a girl who has cerebral palsy. Her name is Amy Van Dorn, and she is the narrator of the book. She has a best friend named Matthew who she knew from elementary school. She keeps sending emails to him and is fascinated about whether or not he eventually has applied for a job. When Amy is in school, she uses a walker but can’t talk. She uses a computer to communicate by pushing buttons and some typing. She wants to make friends, but she doesn’t seem to have any because of her aide and her communication skills. She is good at reading and writing except math. She makes messes on many things and she needs bibs to wear for eating lunches so she could be kept clean. Lots of people in her school make bad choices her and say things that aren’t true. She had to make new friends to sit with at lunch, but she still likes Matthew very much. They both walk together between classes everyday unless Amy has a helper with her. Her other friend Nicole babysits her in bed at night. Unfortunately, Amy is not great at  reading so she has to read the same page more than once.

Amy and Matthew have great conversations together about all their stuff that they have in common. He does a good job helping Amy because he likes her. He is also her boyfriend and peer helper. She asks lots of questions about himself more often to discuss his rituals and washing hands. Matthew decided to get Amy a video about many people with cerebral palsy who have problems. But Amy’s doesn’t seem to be the same because the people in the video are more disabled than she is. Amy trusts Matthew because they are good friends in high school. He is definitely handsome enough for her because he has curly hair, blue eyes, and a beautiful smile. Since Matthew doesn’t have anything important after school, he agrees to join clubs with Amy if she asks him to. She knows less about other kids, but she had an old friend from preschool who she doesn’t know at all because he got interested in girls and property.

Amy knows a girl named Sarah who talked about sex and love with other people.  She is interested in whether or not people love others but she isn’t exactly sure if she loves Matthew.  Amy has a special place for his heart because they are good friends but she isn't sure its love.   

Matthew and Amy play jokes and make each other laugh all the time.  They also talk about reading books and they figure out the solutions to making meeting easier and serious.

When Amy is a senior, she was told by Matthew about taking AP classes for college. She thought Matthew was making a joke about public speaking in classes that most people take.  She isn’t brave enough to be prepared for the speech she and Matthew had done.  Some other friends, Sarah and Chloe, thought that everyone who did their speeches on stage were talking about the same person.  Amy used her computer to announce what she had written instead of using her voice because of her speech problems.  She stopped talking to Matthew until the next day of school.  She didn’t think he may be called a mild case because she doesn’t think he is getting better if he reads books about doctors or anything like medication. Before that, he began having a crush on another girl named Sarah Heffeman, who he is scared of asking her on a date but they did it.  Matthew does not know Amy has a crush on him but he thinks she might get mad at him if she hears about Sarah because Amy is also friends with Sarah.  So  it made Amy very upset when Matthew told her the news about Sarah.

 Matthew tried to check on the water faucet in the sink over and over again.  Amy’s mother asked him to stop and study for his test, but he wasn’t listening. So she probably got angry and told Matthew to immediately go and do something for himself. If he checked the faucet before the test, he would get sick and uncomfortable; he thinks it will make everyone else sick too. When he turns to Amy, they both have a conflict about not washing his hands at school because of his pants getting dirty and the germs that make people very ill. Amy feels anxious and decides that she could help him, but she hasn’t even done that before. At the end of Amy’s conversation, Matthew calms down and understands all she just said so far. He promises to follow all her directions and wait until he gets home to wash his hands thoroughly. This shows that Matthew had strange creatures of his body. He had sweaty betties and blood stains so he needed to get cleaned up. He also has other major problems with his health so he may need Amy or go see the doctor for help.

Amy focused on college and the future. She made some applications to several schools but is planning to attend Stanford University and study for something she may do. Matthew had a stereotype on her that she needs to do some things really important instead of talking about college. But Amy still made an application to attend Stanford University after she got her own scooter. Before she left home to start college, she cried a lot about Matthew because he has been her best friend for many years and she loved him very much.

Several months after Amy entered Stanford, many people were concerned that she looked very sick when they came to her bedroom. She got pregnant and she had to go to the hospital for her baby named Taylor to be born. At the end of the book, Amy was involved for her drama program and did the funny play called “Alone Together” which is a final part of it. Amy pretended to be a bubbly girl who tried to ask a boy with agoraphobia out to dinner with her.

I really enjoyed this book.  Its not not very easy to find novels where the main character is very disabled but also very successful.  I wish there were more books like this.

Do you have any books with disabled characters to recommend?

  

My running life

My dad and I are athletic partners who run together in many races. It is one of my favorite sports in life besides football and basketball. Running and track are really fun and it helps maintain good health. I always sit on a jogger that my dad uses to push me. My brother, Ryan (he is much younger than I am) sometimes joins us too. My dad and I have some evening trainings at the park that is closer to where I live. I enjoy training with him because he has been such an awesome father to me. I’m also in a special club called “Athletes Serving Athletes” (ASA). It is a running team that registers people who are in wheelchairs like me. I like it very much and my teammates do a great job pushing me super fast! This fall I am running in several races like the Howard County 5k, the Baltimore Ravens Run, and the Turkey Chase. Here’s a photo of me in a running chair with my dad next to me:

Are there people you know who are runners? Do you like to run?  Leave me a comment below!

My Interesting Diet

I recently learned that people with BVVL might benefit from special foods to eat most of the time without phytanic acid.  I am going to change my diet to see if it helps with my impairments.  There are health food stores that people can go to buy special foods without the ingredients that raise levels of phytanic acid in the body.  Phytanic acid can cause certain neurological and metabolic disorders to get worse.  I am excited about trying the new diet to see if it will help, but I will also miss eating some of my favorite foods all the time.  The changes that I have to make for my diet are not eating so much dairy foods like cheese, ice cream, and milk.  Also, I need to avoid red meat, fatty fish and chocolate.  These foods might cause health problems for people with certain metabolic disorders like BVVL.  It is important to note that the information about how phytanic acid affects those with BVVL is just a theory.  Time will tell if it will help, but I am looking forward to the possibility of improvements. 

What kinds of foods do you avoid?  Would you be willing to give up some of your favorite foods with only the possibility that it may help your disorder, but no guarantee if it will?

My Exciting Summer Vacation

My family and I always go to the beach for summer vacations every year.  I visit my grandmother who has a very nice house in Delaware.  My family likes hanging out and enjoying  special occasions together.  We drive across the Chesapeake Bay Bridge on Route 50 back and forth every time we go to Grandma’s beach.  My Aunt and Uncle and Grandfather always come too.  It is really fun and it is absolutely an important part of summertime for me and my family. 

My favorite thing to do at the beach is swimming in the ocean and going on the canoe ride with my Dad.  My family gets to sleep at the beach house and it is very nice of my grandmother to include a few bedrooms for more than a few family members to stay.  I like to play music too.  I play the piano at the beach house because I know how to write songs by using beats when I play an instrument.  If you want to see what my grandma’s beach house looks like, you can see it at my store.  It is the best part of my life and my family joins together on vacation all the time.  My grandmother’s house is big with 3 floors.  It has a garage below the house where two cars can be kept inside.  
 

My family likes to eat special food and go out to restaurants when we are on vacation.  My favorite food to eat there is pizza with pepperoni on top and it makes me hungry just thinking about it.  My favorite restaurant is Miltonian Pizzeria & Wing House near the beach.  My family gets special breakfasts and coffee every morning on vacation.  My favorite breakfast there is eggs with bacon and sausages.  My grandmother is an excellent cook!  She makes delicious food and that makes the whole family happy.

I love to watch fireworks on the 4^th of July when I am at the beach.  My grandmother has a roof top deck located on the right side of the house, which gives us a great view of the fireworks!  It is hard for me to get up the roof, but I do it by having an adult help me walk up and down the stairs inside, but she also has a chair lift attached to the railing outside the house that gets me up to the second floor from the ground.  It is very cool that she installed it for me because it is hard for me to climb too many steps. 

 I like to listen to music on the radio and watch television with great tv shows they offer on vacation.  It is so much fun to sit on the sand and make sandcastles and have picnics with sandwiches, chips, and other yummy food.  My grandfather uses a kayak with a giant paddle that allows it to move around on the water.  Last year it was too windy and too rough for me to go on the kayak, but I hope this year the water will be smoother so I can go kayaking.  I also like to swim because it is good exercise for lots of people. 

Are you wondering how I get on the beach?  A few adults have to carry me down the front steps and onto the beach because my wheelchair can not go on the sand.  So, I usually have to sit in a wagon that someone pulls with a handle.  I also sit on a trailer attached to a bike that my Dad pulls me with.  He takes me for a bike ride down the street and it always makes me happy with joy.  On the 4^th of July weekend my Dad pulls me on the bike in the neighborhood parade with lots of people and other vehicles like bikes, tractors, fire trucks and different cars and trucks.  The coolest thing about the parade is the fire trucks driving down the streets with their horns blowing very loudly.  It has been a very good vacation for me and my family every year.  It is fun and something I look forward to all year long. 

What is your favorite vacation spot?  Do you ever go to the beach?  

-Alex