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 6:Your Child's Emotional Needs
In Chapter 6:
photo: boy and mom
Talking With Your Child | Your Child's Emotions | Overprotection & Discipline 
Enjoyment and Fulfillment | MDA HELPS: MDA Art Collection | Adolescence | Independence 
MDA HELPS: Summer Camp | Relationships 
Resources for this chapter | General MDA Resources 

ADOLESCENCE

photo: young man

The teen years are a difficult time for most people. Feelings are intensified and moods change rapidly. Puberty and the following few years may be one of the toughest times of your son's life. He'll be dealing with all the problems of having a disability and all the dilemmas of adolescence at the same time. Sometimes a kid who's seemed to be well adjusted will undergo a personality shift and become very difficult in the teen years.

Some of the issues that will face your teen-age son with DMD are:

  • The needs for peer acceptance and interaction are all-important in adolescence. To enter this phase just as he's becoming physically weaker may make this time in his life a lot more difficult.

  • He'll have the same social and sexual feelings as any other boy his age. Because of his disability, he may believe he's unattractive, or be convinced he'll never have a girlfriend, or feel frustrated by lack of sexual outlet.

  • As a teen he'll want greater independence from you.

  • And he'll be thinking about the future.

The following pages address these topics in detail.

Some adolescents, and even younger children, with disabilities withdraw emotionally and refuse to talk about their feelings. Some take their anger out on those closest to them. If this happens, don't take it personally. Give your son some time and space, but don't let him indulge in self-pity.

photo: two men in the mall

This young man does his shopping with the help of a personal assistant.

To keep the communication channels open, gently ask your son how he feels. Ask: Do you feel angry, do you feel sad? What are you most afraid about? Briefly tell him how you feel when you see other kids driving or dating and he isn't, and ask how he feels about the same thing. Respect those feelings. As the emotions and social dilemmas become more complicated, it'll be harder to actually solve the problems. Talking about them may be all that you can do for him, but it'll mean a great deal to your son to know you care and are trying to understand.

Adolescents usually need close confidants besides their parents. If your son doesn't want to talk with you, help him find someone else to talk with. He may benefit from an MDA support group or talking with peers or slightly older young men with his disease. With his peers, he'll probably speak more frankly about his concerns about freedom, sex and death than he would with you.

Psychotherapy may also give your son an outlet for talking about his feelings. Professional counselors have techniques for getting even the most withdrawn teens to say what's on their minds. Adolescent medicine specialists in chronic disease are trained to treat their patients' emotional and physical symptoms together. (See Chapter 3.)

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