It is very hard to come to terms with the diagnosis of BMD in your family. It is likely that your son, your family, friends and support system will have questions.
Tips for interacting with your son, family and friends about BMD.
Although there is no right or wrong way to deal with these interactions, the experts recommend the following:
- When a child asks questions about BMD, answer them as honestly as you can, in terms that will be easy for them to understand.
- Never forget that your son is an individual, made up of more than just a BMD diagnosis.
- Do not blame yourself. The fact that your son has been diagnosed with BMD is not your fault.
- Lay heavy emphasis on activities and hobbies that the child can do and encourage him to do the things he wants to do. Children with BMD often find creative and alternate ways to participate in activities they’re interested in.
- Treat your child the same as you would your other children, by providing love, support, discipline, responsibility and love (it bears mentioning twice).
- Encourage him to maintain a level of independence by not overprotecting him.
- Create an open forum for discussions within your family so no one is afraid to ask questions or talk about what’s on their mind.
- Plan family vacations and other normal and healthy family activities. Remember ‘where there’s a will there’s a way’: you can do just about anything.
- Exercise patience when dealing with family issues related to the disorder and respect one another’s way of coping with these issues.
- Try to break up the responsibilities of caring for your son so you have some time for yourself.
- Live for the day by not letting the future control your lives.
- Rely on friends, family and your support system. That’s what they’re there for and they want to help. Realize that you are not alone in this.
- Don’t be too hard on yourself. You should give yourself credit for being able to handle things as well as you do.
- There will be good days and bad days. Enjoy the good while it’s happening and deal with the bad as it comes up.