Guide to Other Chapters:  
Table of Contents
Introduction
1: What Is Duchenne MD?
2: Getting the Diagnosis
3: Sorting Out The White Coats
4: Your Child's Physical Needs
5: The Future—Research Points the Way
6: Your Child's Emotional Needs
7: Your Child's Education and Future
8: The Family
9: When You Need Help
10: Saying Good-Bye

General MDA Resources >
 
Chapter 7:Your Child's Education and Future
In Chapter 7:
photo: classroom scene
The Individualized Education Plan (IEP) | Adjustment to School | Learning Disabilities |
Assistive Technology | College | The Future | MDA HELPS: Telethon |
Resources for this chapter | General MDA Resources 

THE FUTURE

Many adults with neuromuscular diseases recall with gratitude that their parents always told them they could do anything they wanted, if they had the desire and were willing to put in the effort. Confidence and optimism give any child a sense of hope and possibility, which helps him be successful in reaching his goals. You can help your son examine his options.

Career

The Americans with Disabilities Act prohibits discrimination in hiring on the basis of disability, and it requires employers to provide reasonable accommodations for workers with disabilities.

Constantly developing computer technology makes it possible for someone with muscular dystrophy to perform a whole range of jobs. If his DMD makes him too fatigued to work a full day, it may be possible to combine part-time or free-lance work with disability income. (See Chapter 9.)

Career counseling is available from Vocational Rehabilitation, college offices for students with disabilities, tech centers and special services. More information about these services, as well as books and articles on job hunting and interviewing, is listed in Resources.

Family

photo: woman conversing with man in wheelchair
College is an important social, as well as educational, experience for all students, including those with muscular dystrophy.

Many men and women with muscular dystrophy have families. Although it's still unusual for men with DMD to marry or have children, it isn't unheard of.

If your son falls in love and is considering marriage, he and his prospective bride need to talk about all the implications of his disorder as they make plans. Both need to be prepared for what's involved and to be certain the other understands the effects of the disease. Some people encourage their fiancées to speak with their doctors and ask questions about what the disease means for the future.

With this information, the couple can work out caregiving needs in a way that suits them. For instance, the spouse may want to be a part-time caregiver, supplemented by hired assistants.

MDA can also help your son and his future wife determine their odds of passing his DMD or BMD on to a child so they can make the decision that's best for them. (see "DMD is Genetic, But ..." for information about genetics and DMD.) Fathers with disabilities find many ways to share with their children time and interests that don't require physical strength.

Health

There's also every reason for great optimism about your son's medical future. Constantly improving therapies are extending life expectancy, and MDA researchers believe they are on the verge of offering viable treatments to slow or stop the muscular degeneration in DMD. (See Chapter 5.)

Next... MDA HELPS: Telethon >