Information Awareness Report: Muscular Dystrophy

A few weeks ago I was asked to tutor a child with muscular dystrophy. I was very excited to start working with the child, but I also knew that I needed to find out more information on muscular dystrophy before we started working together. I had a basic knowledge of MD, but I wanted to know how it affected learning if at all so I knew how to best serve the child. For example, how much writing should I ask the child to do? Are there modifications I need to make? My intentions, as always, were to treat this child just like any other child, but I just wanted to make sure that I wasn't asking the child to do anything that would have a long-term effect on his body.

First, I talked to the child's mother and teacher from the previous year to find out more information. This was a great, because I got information on the individual child instead of MD in general. The first thing I learned was that the child had a specific type of MD called Duchenne Muscular Dystrophy. I learned that the child had a stool for his feet and a pad that went on his chair so he could move around. The mother and teacher told me that writing was fine unless the boy's fingers started to get tired. I learned that MD usually starts in large muscles, such as the legs, and moves to smaller muscles, such as the hands. However, for the child I was working with it was the opposite. The mother told me that he was losing muscle strength in his smaller muscles first and this is why writing should stop if he gets tired. Talking to the boy's mother and teacher helped a lot, but it also made me even more curious.

My second step in getting information was through the internet. I used Google to search for these terms: muscular dystrophy, duchenne muscualar dystrophy, and duchenne muscular dystrophy and school. I was able to find out basic information about the disease, symptoms, and treatments. I also learned that the disease can affect adults, but the more severe forms usually start in early childhood. At this time there is no cure for MD, however treatment aims to control symptoms to maximize quality of life. Here are some of the sites I looked at through these search terms:
http://www.nlm.nih.gov/medlineplus/ency/article/000705.htm

http://www.parentprojectmd.org/site/DocServer/EdMatters-TeachersGuide.pdf?docID=2403

http://specialchildren.about.com/od/musculardystrophy/a/MDschool.htm


I thought this was good information, but I wanted more information more specific to academics. Using Google again, I searched "teacher's guide to muscular dystrophy" and found this information to be exactly what I was looking for. I found reliable sites that told me about how muscle weakness affects behavior in academic settings and at home. I learned more about the adaptive equipment that are used at school or other similar settings and how teachers should respond to questions that classmates may ask. This was exactly what I needed to know! Here are some of the websites I used:

http://www.mdausa.org/publications/tchrdmd/dmd2.html

http://www.parentprojectmd.org/site//PageServer?pagename=understanding_professional_teachers

http://www.muscular-dystrophy.org/

I was lucky to have found the information I needed in such a short time. If I had not found what I was looking for my next step would have been to use a research database to find scholarly articles/studies or to go to the library and check out some books on MD. Why wasn't the library my first choice? For me it was more convenient to check on the internet first. I could do this at home with a few clicks. I was cautious in making sure that the sites I used were reliable and I checked several sites to make sure the information was the accurate. I also decided to use the internet since this was an infomational need related to medical health. I knew the latest research would be online and that there was a chance books at the library could contain information that is outdated. I learned that finding information about a subject or question is something I enjoy. It is a little like a scavenger hunt. I also learned that searching for this information was something I did automatically, without much thought. The search terms seemed obvious to me and if one didn't bring up the results then I just tried another one. Now that I am educated on the subject, I feel more confident in my tutoring sessions. Overall this experience was something that challenged and interested me. I learned a lot about the way that I go about finding information to questions and topics that come up daily!