RELATIONSHIPS

Friends

Friends and close relationships are important at every stage in life. Most people benefit from having a variety of friends from different backgrounds. Your son with DMD will probably enjoy having some friends with similar disabilities and some without any disability.

In early childhood, many youngsters will accept your son unconditionally and view his wheelchair as just a part of his identity, much as they see another child's red hair or blue bicycle. If he attends the same school and has many of the same classmates year after year, he can grow comfortable and secure with these reliable friends. As he develops a more individual identity, he'll gravitate toward friends who have similar interests.

In school, be sure your Individualized Education Plan covers his social needs, especially if your son is moving to a new school or is shy. (See Chapter 7.)

If you're concerned that he may be becoming isolated, suggest that he have a game night or movie night at your home every couple of weeks for several of his friends. In cold climates, this can enhance his social life at times when it's difficult for him to go out.

Peers with similar disabilities can be a great support and make a child feel less alone. He can meet same-age kids through MDA summer camp and other programs.

Another way for your son to socialize with boys his own age is through Scouting. The Boy Scouts of America believes that youngsters with disabilities are fully entitled to participate in Scouting, and supports a policy of mainstreaming in which disabled Scouts are included with nondisabled Scouts.

Although a boy with muscular dystrophy may not be able to participate in all Scouting activities -- including the more rugged ones such as hiking -- there may be many other activities that are fine for him. Scouting can be a great way to make friends and build self-esteem. Many boys and young men with disabilities have gone on to attain their eagle badge, the top rank in Scouting.

It's also important to help your son identify some male role models, especially if you're a single mother and most of his caregivers are women. Getting to know a slightly older male who's already dealt with the issues he faces can be invaluable for him. You can ask the health care service coordinator at your local MDA office to help him meet other young men with neuromuscular diseases.

As in so many areas, adolescence presents a tough turning point in social relationships. While his DMD worsens, the affected teen sees his friends' independence growing. In the teen years, social and romantic acceptance are based largely on physical appearance, cool cars and clothes, and other superficial values. Teens can judge each other harshly, and these experiences can trigger emotional crises.

Another difficult transition occurs when kids with disabilities move into new social circles, such as a new school or starting college. Though everyone faces the challenge of making new friends at some time, it can be a little harder for the person with a disability because others may be unsure of how to approach him or may even avoid him.

If you've brought your son up to have self-confidence and be prepared for these obstacles, he'll handle them pretty well. Give him plenty of support for his efforts. One young man with muscular dystrophy who went away to college took the initiative and introduced himself to new friends in his classes and dorm. He joined a social group in his academic interest area, and before long he had a whole new set of friends.

Dating

Puberty and sexual development for boys with DMD occur at the same age and in the same way as they do for other boys their age. Young men with this form of dystrophy have normal sexual abilities and hormonal changes. They need sexual education, including information about safe sex and pregnancy, and reassurance that their feelings and fantasies are normal.

There's no need to tell your son as he grows up that he won't date, or he'll never marry, or he should just forget about girls because he has muscular dystrophy. In this as in other areas of life, he needs the same encouragement you'd give any boy his age.

But just as independence may come later for teens with disabilities than for others, dating may also be postponed until a young person feels confident enough to enter this arena. If your son wants to do so, encourage him to ask a girl out. If he doesn't want to, don't push him. As long as your son is comfortable with his decision, any age is OK to begin dating.

There are some special problems for people with disabilities when it comes to dating, especially in the young adult years. Some able-bodied young people simply won't consider dating a person who uses a wheelchair. Others may be attracted to someone with a disability but be concerned about friends' or parents' reactions. Others don't understand the individual's disability and are afraid to ask questions.

You can help build your son's confidence in facing these obstacles by encouraging him to talk with other young men with disabilities about these problems. Also, point out his positive qualities and urge him to be as interesting, friendly and attractive as possible. By socializing with groups of friends of both sexes, he'll become more comfortable with young women, and they'll be more relaxed around him.

But even a young man who has a strong self-image, lots of friends and good looks may find it hard to get girls interested in him if he has a disability. The fact is that many teens and young adults are simply too immature to see past the superficial or to know what's important in a relationship.

You'll have to counsel patience in this area. One reason people with disabilities start dating at a later age isn't because they lack maturity -- it's because their potential partners need to grow up a little more!

Next... CHAPTER 7: Your Child's Education and Future