HOW DO FAMILIES AND CHILDREN ADJUST TO DMD OR BMD?
When a family member has DMD or BMD, all members of the family are affected by caregiving demands and emotional reactions. Many people find help and support from religious sources, families with similar experiences, self-help books or professional counseling. These experts usually suggest the following for the Child
Answer children's questions about the disease when they arise, with honesty and in language they understand.Always view the child as an individual, with the disease only one aspect of his life.
Emphasize what the child can do and let him find ways to do things he wants. Children often find creative ways to participate in sports and other hobbies.
Treat him as you would any other child, providing discipline, responsibility, hope and love. Don't overprotect him, and do help him become independent.
Undertake normal family activities, including vacations and recreation. With imagination and patience, you can find ways to do almost anything.
For the Family
Respect each other's emotions and stress levels; be kind and patient.
Schedule regular breaks from caregiving responsibilities.
Deal with the disease one day at a time, one crisis at a time, one year at a time. Don't focus on future complications.
Give yourself credit for the effort you expend and the difficulty of your task.
Build a support team, and ask for help when you need it.
Get information from every available source, starting with your MDA.
Facts About Duchenne and Becker Muscular Dystrophy by Mda
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About emotions
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