Replies to This Discussion

Permalink Reply by Lori Ware on September 4, 2010 at 10:23pm

I don't know of any 'books', other than the book of wealth from parents who read this.....I would recommend Josh Winheld's book, "DMD, Worth the Ride" if you haven't read it. Josh was very honest about his feelings of living with DMD and how he encountered the tough questions. Good Luck!

• ▶ Reply

Permalink Reply by donna on September 5, 2010 at 1:21am

our son is the same age as yours and has started asking some touch questions. Especially after coming back from camp and seeing so many boys at different stages of DM. we try to answer them as honestly as we can to answer his specific question without giving out too much information . He asked me if he was going to have to use a ventilator. I said welll everyone is different so you might or might not, but if you do it will be okay,I told him it isn't something he needs to worry about, if that time comes we will deal with it then. Then he asked me if those boys would not be alive right now without the ventilators and i said, well probably not. he said well then its a good thing they have them. And that was that. Alot of times he just wants to know that it will be okay, or that what he is feeling is okay too. I told him we don't always have the answers but he can always talk to us about anything.

• ▶ Reply

Permalink Reply by Cinni on September 5, 2010 at 8:36am

Lori Ware said:

I don't know of any 'books', other than the book of wealth from parents who read this.....I would recommend Josh Winheld's book, "DMD, Worth the Ride" if you haven't read it. Josh was very honest about his feelings of living with DMD and how he encountered the tough questions. Good Luck!

• ▶ Reply

Permalink Reply by Cinni on September 5, 2010 at 8:37am

Yes we have always answered his questions very honestly there just getting to be tougher questions :(

Thank you for your reply
Cinni

donna said:

our son is the same age as yours and has started asking some touch questions. Especially after coming back from camp and seeing so many boys at different stages of DM. we try to answer them as honestly as we can to answer his specific question without giving out too much information . He asked me if he was going to have to use a ventilator. I said welll everyone is different so you might or might not, but if you do it will be okay,I told him it isn't something he needs to worry about, if that time comes we will deal with it then. Then he asked me if those boys would not be alive right now without the ventilators and i said, well probably not. he said well then its a good thing they have them. And that was that. Alot of times he just wants to know that it will be okay, or that what he is feeling is okay too. I told him we don't always have the answers but he can always talk to us about anything.

• ▶ Reply

Permalink Reply by James Poysky on October 2, 2010 at 4:51am

Hi Cinni,

I have some things that I can send you regarding how to talk to kids about DMD. It is geared more toward younger kids, but some of it may be applicable. Send me an email and I'll email it to you: jamespoysky(at)gmail

I would recommend that you don't wait for him to ask questions. Be proactive about it. Try to initiate the discussion, because if you don't you are probably only getting part of what is going on in his head. For example, he may have already reached a bunch of assumptoms that you are unaware of, and is only asking about the stuff he thinks he is unsure about. But the other assumptoms he is not bringing up may not be accurate! The best way to start the conversation is to ask him what he knows about DMD. This can give you a chance to correct any inaccuracies, but also gives you a starting point so you can adapt the conversation to where he is at.

• ▶ Reply

Permalink Reply by Kim S on March 28, 2014 at 3:25pm

HI James,

I loved the way you answered your sons questions. I know the feelings that well up in our hearts when our beautiful boys ask these questions but you handled it so well. I hope I can do the same.  

donna said:

our son is the same age as yours and has started asking some touch questions. Especially after coming back from camp and seng so many boys at different stages of DM. we try to answer them as honestly as we can to answer his specific question without giving out too much information . He asked me if he was going to have to use a ventilator. I said welll everyone is different so you might or might not, but if you do it will be okay,I told him it isn't something he needs to worry about, if that time comes we will deal with it then. Then he asked me if those boys would not be alive right now without the ventilators and i said, well probably not. he said well then its a good thing they have them. And that was that. Alot of times he just wants to know that it will be okay, or that what he is feeling is okay too. I told him we don't always have the answers but he can always talk to us about anything.

• ▶ Reply

▶ Reply to Discussion