What to say and do when?

Every family is different but when dealing with our emotions here is some advice that can guide us, sourced from both personal experiences and expert observations. Interestingly, studies have shown that it is far more common for parents to regret discussing the hard questions with our children and youths.

David Shonfeld MD has some excellent advice for us in his 2008 presentation at the US PPMD conference. You can access this information in three ways by downloading your preference below.

His presentation is called:

"Living in the present while trying to rewrite the future"

Text [.pdf]

Audio [MP3]

Video  [Part 1]  [Part 2]

NB  If you enjoyed sourcing such current and insightful multimedia information by one or all of the above methods, why not experience the rest of the 2008 conference presentations about all aspects of care and research here.

The PPMD website profiles an excellent Emotional Issues section devoted to connecting with your son, overcoming social isolation, answering his questions and daily life.

More links that may be helpful in guiding our emotional journey

Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy: April 24–25, 2008, Miami, Florida James Poysky, Kathi Kinnett

Advice from a Pioneer

Your child's Questions 

When to introduce a wheelchair   

(Why not check out more of these insightful vignettes which discuss some of these sensitive issues. In addition, the medical tutorials on the Dolan DNA Learning Centre have also been created in collaboration with PPMD and remain some of the best multimedia explanations of B/DMD.)

Bandaids & Blackboards - A colourful site about growing up with a medical problem with pages for kids, teens and adults. Here's a sample.

Please share any good links/experiences you discover as we are all seeking answers. Use our online forum or email.