Do you need more sleep than a koala?
Having a muscle disease can make you feel tired a lot. Doctors call this fatigue. Fatigue can be caused by many things, which is why it’s important to get regular checkups of your heart and breathing. One simple cause of fatigue is that weak muscles have to work harder just to do everyday jobs.
You can fight fatigue by saving energy. Some ways include resting after you’ve been active, using assistive devices (like wheelchairs) for long distances, and getting a good night’s sleep.
To fully charge their energy tanks, kids between the ages of 5 and 12 need at least 10 hours of sleep a night.
Do kids need more sleep than other animals? See if you can guess. Put a plus next to animals you think need more sleep each day than kids, and a minus next to ones who need less sleep. (The answers are at the bottom of the page.)
Create a story
Directions: Create a “personalized” story by filling in words in the list below. Then read the story, inserting the words from your list into the blanks with the same numbers. Warning: Don’t read the story first or you’ll spoil the fun!
Remember: A noun is a person, place or thing (like book). An adjective describes a noun (like big). A verb is an action (like run). Plural means more than one. A location is a place to go and an exclamation is something you say when surprised, happy or upset (like wow!).
|1. A location ______________||8. A liquid ______________||15. Exclamation ________________________|
|2. Adjective ______________||9. A body part __________||16. Adjective ______________|
|3. Adjective ______________||10. Plural noun __________||17. Something to wear, plural ________________________|
|4. Adjective ______________||11. Noun _______________||18. Adjective ______________|
|5. Plural noun _____________||12. Person’s name ________________________||19. Verb __________________|
|6. Plural noun _____________||13. Adjective ____________||20. Number _______________|
|7. Verb ending in “ed” _________________________||14. Noun _______________||
|I love camp!|
School is almost over and I can’t wait to go to MDA summer camp in 1.___________. Camp is so 2.___________! All the counselors are very 3.___________ and 4.___________. Last year, we played a joke on another cabin and put 5.____________ on their 6.___________. We 7.___________ so hard I squirted 8.___________ out my 9.____________! In arts and 10.___________ I made a 11.___________ and 12.___________ said it was 13.___________.
I won a prize for being the best 14.___________. 15.___________! My favorite part of camp is the 16.___________ dance. Everybody wears 17.___________ and looks so 18.___________.
I can’t wait to 19.___________ to camp. Only 20.___________ more days to go!
Vroom! My power wheelchair is one of the things that’s significant to me. I got it in 2002, two days after my 10th birthday.
When David, a wheelchair technician from the MDA clinic, brought my power wheelchair inside the house, I was thinking, “Put me in the power wheelchair this instant and let me cruise around a little bit.”
Instead, when my mom put me in the chair, David lectured me about how the power wheelchair isn’t a toy or a weapon and not to go too fast. While he was talking I was thinking, “Yes, I now am free and in control. I can go wherever I want; I can be independent.”
Later that week I saw my friends and you could see their jaws drop. Then I decided to speed around the gym and they joined in. After that I figured out that they accepted me. I felt like the coolest kid there.
I found out that a power wheelchair helps you get friendly allies and also deal with evil enemies. In fifth grade there was a girl, Shani (not her real name), who picked on me for years.
One day at Bates Elementary, when everybody was getting up from the carpet, Shani decided to lie down right in my way, so I couldn’t turn around to get to my desk. I asked her to move and she didn’t. Then the teacher asked her to move and she didn’t. So I just turned around anyway and a small back caster wheel ran into her. She got mad but the teacher told her, ”You didn’t move.”
I learned then that I could defend myself against bullies.
Another thing I found out is that power chairs sometimes can cause more barriers. An example is when some of my classmates were going to St. Louis for an optional field trip. I couldn’t go on the commercial bus because it wasn’t accessible for my power chair, so I wasn’t able to ride with my friends on the five-hour trip. After that I learned that I had to try and avoid barriers, and try to live with it if I couldn’t avoid them. I felt mad over that.
When I was 10, my family and I went up to Chicago to an Abilities Expo. While we were there, I learned that there’s a sport called power wheelchair hockey.
In this sport there are two teams in power wheelchairs. They play with a Wiffle Ball instead of a puck and use plastic hockey sticks. Some players have the hockey sticks strapped to their chairs.
The team at the expo let me practice with them and I learned that I was good at it. I now do this as a hobby in our driveway. Having a sport out there for kids in power wheelchairs makes me feel really happy.
In sixth grade, I found that making friends was a piece of cake. Other boys wanted to be around me.
Some boys hitched rides on my power wheelchair by standing on the plastic cover for the battery connections, but I stopped them from breaking it by making a fast severe turn, throwing them into the lockers. Then the other boys would cheer. This made me feel good, and fitting in made me feel like I wasn’t in a power wheelchair anymore. They were treating me like a normal kid.
These are some of my memories of why my power wheelchair is significant to me and how it’s changed my life. It’s given me independence, protection, hobbies and acceptance.
Drew McPheron, who was born in 1992, lives in Louisville, Ky. He wrote this article when he was 12, as a personal memoir for his middle school writing portfolio. The article later was read at a Kentucky state hearing on Medicaid funding for customized wheelchairs.
Drew, who has Duchenne muscular dystrophy, enjoys playing street hockey with friends and making PowerPoint presentations on the computer. Although he’s right-handed, he drives with his left hand, so he can keep his right free to do things. He found that playing video games helped make his left hand more coordinated.
SLEEP Answers: 1. Lion: + (20 hours a day) 2. Elephant: - (4-6 hours) 3. Mouse: + (12 hours) 4. Chimp: + (12 hours) 5. Sloth: + (20 hours) 6. Koala: + (18-20 hours) 7. Pig: - (8 hours) 8. Cat: + (16 hours) 9. Giraffe: - (30 minutes a day, in six 5-minute naps)