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My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could play soccer and swim...his words. ( I didn't know why we were getting bloodwork done at all...Ignorance is bliss?)   He knows we have been going to the doctor to "help his muscles."  He has splints and does stretching at night.  Beyond that, I will ask him if I can carry him up the stairs so he can "save his muscles for fun."

He has been acting out a little bit lately and saying things that are out of character.  He doesn't want to go anywhere or do anything and everything that we do is boring. I'm concerned about depression.

Anyway,  I think we need to lay it on the line for him so he understands that his muscles just don't work like other people's. 

How have you talked to your little boys?

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Hi Claire,

Hayden is about 6.5 and so far we just tell him that his muscles are different than other kids.  We do encourage him to ride in the wagon when we go for walks.  He often insists on walking for a while, but when we notice him slowing down (usually after a block or so) we can usually convince him to ride.

We obviously haven't gone into the full extent of the condition, but he does know that his muscles don't work as well.  The best advice I've heard/read about talking to your kids is to answer their questions honestly as they ask them.  

Hi Claire,

When Simon got older (8-9) and he was finally reading well, we realized that he could look up anything and everything he wanted on the internet or in a book, so it was time for a more in-depth talk than the little boy "weak muscles" thing. And we wanted to be open and honest with him, and not have him find out some devastating detail from an insensitive person or think we had tried to hide something. But nor do you want to take away any hope either. As Andrew said, answer honestly as they ask. One man I know with DMD said he found out what he had by accident while watching a telethon! I didn't want that to happen.

Before we had our "bigger boy talk" (using real words, a sense of personal responsibility over what is happening to his body {that he is the expert about his bod}, sort of like the birds and the bees talk) I consulted a therapist. She helped guide me through the steps, but also pointed out something that no book or anyone else had: that sometimes kids don't ask any questions because they want to protect us from pain (they may have seen us cry, or over heard a parent/couple discussion, over heard a well meaning friend or family member or terms we had to use for future needs planning, etc, and don't want to upset us further). So let him know he can ask you (or his doctors, therapists) anything, and you will answer any questions he has as well as you can, and will find out when you don't know.

I've been hit by a few tough ones, out of the blue, usually while we are driving. ("Do I have the worst kind?", and "will I die from this?" and I answered as best I could, on the spot. But I have also learned that you can always come back later, even weeks later, with more info or to put another spin on it. 

I'm hoping to hear from the DMD men on this site, how they think we should handle the situation, what to avoid, etc. What have your experiences been and what if anything would you change about your leaning of Duchenne?

Good luck Claire, it's not as bad as you think. Just keep the lines of communication open, with your son and with us too.

;-)

A.

Thanks, Andrew and Andrea.  We talked to Henry tonight.  It was a short discussion. :)  We stuck to the basics.  He cut us off after about 2 minutes. I learned that he doesn't want to talk about this and I made sure to reiterate that he can always ask or tell us anything on his mind.  Then we moved on to enjoying a little time alone together.  Thank you so much for your guidance and thoughts.  It helps!

My son will be 4 this summer and is starting to ask questions like "why did I fall Mommy?" If anyone else can add their experience with how to explain this, I would greatly appreciate it, especially from people who have Duchenne themselves. Thanks!

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