Student Voices: Chris’ Story

By Debbie Grosser, M.Ed.
May/June 2012

Chris Morgan is a senior at King George High School.  Chris has recently been involved in a number of state and regional leadership opportunities.  He has a medical disability for which he has received special education services since age two.  Chris has agreed to share his school journey, his plans for the future, and his accomplishments.

Chris has congenital muscle fiber type disproportion muscular dystrophy, a rare genetic disorder that results in weakened muscles throughout the body.  The symptoms typically appear at birth or by age one (http://rarediseases.info.nih.gov/GARD).  Affected muscles are those that control movement, facial expression, swallowing, and breathing. The severity of this condition varies from mild to severe.  In most cases, the muscle weakness remains stable and does not deteriorate further (http://ghr.nlm.nih.gov/condition/congenital-fiber-type-disproportion).

When asked about his disability and its impact on him, Chris stated, “I have never walked or eaten by mouth and I can’t breathe on my own.  I depend on others for a lot of my needs and often have to look for easier ways to do things for myself.  I have nursing care 16 hours a day.  I travel in my own handicap van.”  Chris uses an electric wheelchair that he navigates independently.  Chris began using a wheelchair when he was in kindergarten.  Chris’ nurse, Alyce Quattlebaum, shared that he has a gastronomy button in his abdomen through which he receives formula that provides all the nutrients he needs.  Chris is able to eat ice cream and to sip fluids, such as water or soda.

Chris faced many challenges in school.  He shared, “I have been in school since I was two years old.  Due to my disability, I was put into a preschool for developmentally delayed children.  In elementary and middle school, I was able to stay in regular classes.  In sixth grade, I was given a paraprofessional, Ms. Shipp, who has been with me ever since.  Also, my nurse is always with me.  I have an IEP (Individualized Education Program) that allows for special treatment at school.  For example, I can have extra time for assignments and tests.  I work at a slower pace, which means it takes me longer to complete my work.  Tests are more difficult for me, harder to study for and take.”  Chris is in general education settings for his high school classes, but he leaves the classes to take tests.  He is working toward a Standard Diploma and plans to graduate in June 2012.  Chris is currently taking three classes and has one block open to receive his therapies, including speech therapy, physical therapy, and occupational therapy. 

Chris noted that his greatest school challenge has been that it takes “longer to do my school work and comprehend new ideas.  I need a lot more support to do things that are pretty easy for others.”

When asked to identify his strengths, Chris stated, “I am nice, well mannered, fun, and self-determined.  When I take an interest in something, for example, Xbox Live, Internet, social networking, or gaming, I learn all about it.  I spend a lot of time studying things that interest me.  I am very adept at teaching myself what I am interested in.”  Alyce added that Chris is a very pleasant person with a great sense of humor and that he has a “wonderful, caring family.”

Chris uses a laptop to complete classwork and homework.  He is able to type independently.  Other technologies that he uses on a regular basis include his wheelchair and text-to-speech programs.  Chris requires supplementary aids and services, such as a paraprofessional to assist him in getting out his materials in class.  He mentioned, “Ms. Ship is the most helpful to me at school because she helps me get ready for class, take notes, write my answers, and prepare for tests.  I’m also one of the few who get to use the school elevator to get to the second floor.” 

After high school, Chris plans to attend Rappahannock Community College to study computer/information technology to prepare him for employment in this field.  He will need supports such as his laptop, personal assistance, and physical supports to succeed in college. 

In terms of his nursing care, Alyce is with him for 10 hours each day, both during and after school.  A nurse comes to the home for eight hours during the night, and his mother provides care in the evening.  Chris stated, “Having Alyce as a nurse has been the best thing to happen to me.  She’s been with me all the way through school.  She knows what I’m capable of doing, she knows all of my moods, and she encourages me to do my best.  She is my best support.” 

Chris has a long list of accomplishments.  For example, he presented at a T/TAC William and Mary workshop in December  2011, participating on a istudent panel where he shared his experiences in attending the I’m Determined Youth Summit in November 2011.  Chris began making his mark on the world at a young age.  He spent seven years as team captain of Muscular Dystrophy Association’s (MDA) Stride and Ride program, a program that raises funds to support children’s attendance at the MDA summer camp.  Chris’ team was one of the top 10 local fundraisers for four years during his tenure as captain.  Other memberships and activities have included:

  • First Virginia Grade Level Assessment (VGLA) scholar for King George County Schools, 2005
  • Three years as a DECA, Inc. member
  • MDA’s Summer Camp participant, 2002-2011
  • Disability Resource Center Youth Leadership Team member, 2011-2012
  • King George High School grade-point average: 3.44; class rank: 87 of 303
  • Certificate of A/B honor roll, May 2011
  • King George County Schools Special Education Advisory Board presentation, January 2012
  • Interview with delegates in Richmond, February 2012

Chris plans to continue participating in opportunities to expand his leadership skills and to be an advocate for people with disabilities.  He sets goals for himself and works hard to accomplish them.  Chris speaks quietly, but sends a powerful message. His advice to other students with disabilities as they face school and the future is as follows: “Just work hard and never give up so you will feel good about yourself.”  Chris is an excellent example of how to reach that goal.

References

Congenital fiber type disproportion. (2011). In National Institute of Health Office of Rare Diseases Research. Retrieved from http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&DiseaseID=6161

Congenital fiber type disproportion. (2012). In U.S. National Library of Medicine, Genetics Home Reference. Retrieved from  http://ghr.nlm.nih.gov/condition/congenital-fiber-type-disproportion,