Telling Your Son About Duchenne Muscular Dystrophy

One of the most difficult things for a parent of a child with Duchenne is finding the words to explain the condition to a child who has it.  Maybe you’ve asked yourself, “how do I tell my son he has Duchenne muscular dystrophy?”  Below, we have compiled a few responses to the following question: “Families – Please share, how old was your child when you gave them the ‘words’ for their disorder??What were the key words that you used?? I have some friends that are struggling with this – I need your help…”

Below are the responses to that question. We hope they help you as you try to find the words to tell your child about DMD.

Mindy- Aidan was four or five. We called it “MD” because we thought it sounded less threatening. We told him that it just made his muscles more tired than other kids. We slowly added other informaiton as he’s asked for it – the fact that steroids keep him from growing, etc. But only when he brings it up…

Cori- I have always been very open with Trey regarding this, he is 6, so in reality it means little to nothing to him, however we do tons of fundraising, and DMD awareness stuff, and docs mention it all the time, that I can’t see how you can hide it…I don’t know how many times we have been at our hospital here and an intern comes in to watch Trey’s appointment, as they have never seen a DMD boy, but since we have pushed for awareness in the hospital (NMCSD) that we use, they are proadvocating with us, making sure everyone is aware (but never mention life-expectency)…we really haven’t been able to hide it, and so I guess we haven’t really tried, but he doesn’t seem to care at this point, I think we will, however have a huge hurdle to cross when he gets a little older and can google search it though…not sure how we will handle that one.

Susan- Christine, Jon was 9 when he was diagnosed so he knew right away there in the office. Of course we’ve never been given a definite Becker’s or Duchenne’s diagnosis and he clings to the Becker’s possibility. When we asked him if he understood he said something like — Yea I know I have a disease, I’m not slow, not clumsy, not stupid I have Muscular Dystrophy, it’s not my fault. Can I have my cheeseburger now. He seemed relieved at he time that there was a name for it, a cause for it all. I am not sure he still feels that way, but that’s how it was 9 1/2 years ago.

Angie- I believe my son, Derek, was about 6 or 7. I didn’t quite understand when I told him his muscles were weak so I told him that his muscles were “sick”. He seemed to understand that better & that is how he explained to to other kids at school too.

Jay- We used a book – “Everybody’s Different, Nobody’s Perfect”

Ian- Only answer the specific question, don’t go too far into the progression, until asked. Always tell the truth, it is far better in the long run, personally I was told it was Duchenne Muscular Dystrophy. Also just that my muscles weren’t working properly. Do ask some other parents to but never bury your head. Ian, 26 with DMD.

Lora- when our son was diagnosed at age 6 1/2 we talked him that we were going to see why his legs didn’t want to run and climb like the other kids and then after the drs. appts. we talked him that it was something called muscular dystrophy and that now we knew why his legs didn’t want to do what he wanted them to do. And that now that the drs. knew what it was they would do their best to help him. As he got a little older than we added the word Duchenne, didn’t want him being confused about what it is so gave him the more common words that other people would understand, too.

I truly believe that it depends on the age of the child and to make sure it’s age appropriate. Little ones don’t need to know all the details of this disease right away and I didn’t even use the word disease until I was comfortable that he wouldn’t get even more upset about it. I have always been guided by the questions that AJ asks me (he’s now 14) and now we are having to tackle more of the more difficult aspects of things and it’s not always easy but I have always told him that no matter what it will be ok because we are a family and we will figure it out together. It’s not ever easy talking about it to our sons but tell them to trust their instincts about what they think their son is ready to hear.

Thanks for helping them!

Debbie- aww jay i remember this book it was like a leaflet book over here explaining xxxxx

Sally- I don’t remember exactly how old Phil was, but I told him his muscles weren’t like everyone elses. I brought it down to his level and told him that they were being poops and didn’t want to grow right. But being poker players, I told him that even though he had a crummy hand, he’s still in the game. I’ve made a point of minimizing it – there is nothing sadder than a kid seeing what a heartbreak their condition is to his parents. He needs to see, know and feel how much positive he bring into our lives, and how loved he is in spite of it.

Jenn- both my boys have grown up knowing the real name for their disease, max was a baby, austin 3 when diagnosed. they almost never say duchenne muscular dystrophy, but i have heard them use those words when telling someone about themselves. they are 8 and 12 now. i also make a point of telling them that dmd may be to blame for their learning difficulties, tiredness, and feeling emotional (due to steroids). i never want them to find out dmd facts from anyone else, and if i am ashamed of their disease, and opted not to talk about it i feel they may feel badly about it too. i talk openly to them, and others in front of them about dmd

Rhiannon- Carter was 6. We explained that he has DMD and gave him a very basic overview of it, watched the brain pop video, and have left ourselves open to questions. He has only had a few so far, and doesn’t know anything about the life expectancy, but we try to be as honest as possible. We did ‘the talk’ right around the time we got his first manual wheelchair and before a trip to Cincinnati. The anticipation of the talk was hard for us, but it went so easy. I think he was relieved to finally have a name for it.

Leeandra- Nick was diagnosed at 3 and we kinda compare it to his adoption story, it’s a daily word”DMD”, it’s a household name and some families have an some don’t, we are still learning on the HOW to explain. One of us needs to write a children’s book!

Susan- The “How will this affect my life span?” question was the first question Jon asked a couple of months after the diagnosis. He was actually more afraid of the wheelchair possibility than dying. He was afraid of the teasing, he got quite a bit of it before and after he was diagnosed. I think that having faith gives you some answers about death that makes it easier to understand and deal with.

Char- I have introduced the idea to Will, age 8 about at 7 yrs. old that he has different muscles than others. I heard one of the speakers at PPMD conference say that you don’t want your sons to take it in that it’s their fault for the disease….so you need to say it’s this….I even tell other friends that his muscles are different so he really should not climb up to the upper bunk bed – not safe for him. His friend understood. I have yet to introduce it to his entire school class but I would like to but want to run it by Will 1st.

Jeff – We basically told Dakota the week we found out, thought it would be best if he was somewhat informed so that he would better understand all the visits to the doctors and such.

Stefanie- We told Sam he had Duchenne muscular dystrophy shortly after his dx when he was 3. We told him we had to take special care of his muscles. At 9 he is quite comfortable telling other kids and adults about DMD (usually because someone says something about his large calf muscles). He is never offended and just shares what he knows about DMD. We wanted to make sure that Sam had the info we wanted him to have and would not be caught off guard by someone else sharing info with him that he did not know.

Sabrina- is three and we just tell him he has poorly muscles for now and will add more as his understanding develops

Brian- I’m happy to read there is much consensus in that most have begun using the term muscular dystrophy early and also used age appropriate statements indicating there is muscle weakness. The key is giving information when asked and like adults young boys deserve the truth. It goes beyond being honest, it allows these guys as young boys to learn why they aren’t able to keep up. When left to wonder why, the potential to think the worst is greatest without accurate information.

I see two issues for parents who are compelled to avoid using the correct words describing the condition and don’t give their sons information. First, in a possible effort to “protect” their son they instead lose credibility once he learns the truth, especially in today’s connected society (Kids use the internet too.). It may eventually turn into a situation where the boy doesn’t let on that he knows about the disorder in an effort to also be protective, yet as they get older may question why their parents were unable to be truthful (And yes, I am aware of this happening in specific situations.).

The second aspect is that families failing to answer their sons’ questions and avoiding the subject may be an indication of their inability to adequately cope. The boys and adults with DMD who cope well do so because their parents are coping and providing information to their son’s satisfaction. For some families it may be necessary to seek outside assistance which may be as simple as speaking to someone about the best way to talk about DMD with their sons. In other cases parents may need some counseling to help themselves in dealing with the circumstances. That does not indicate parental failure as there are many reasons why some have more trouble dealing with the gravity of DMD, yet to raise a child who is also able to understand and deal with this disorder it is important for a parent to be able to speak with them in an honest and age appropriate manner.

Ultimately DMD personally affects these boys and young men who deserve the truth.

Joanne- Wyatt was diagnosed at 3 yrs. and we told him that he had ‘weak’ muscles mostly because he was noticing that he couldn’t do what the others in the playground OR his brother (20 mo younger) were doing. When he asked ‘why?’, I told him that he had muscular dystrophy and that the dystrophy meant that the dystrophin that would help his muscles wasn’t being released in his body enough to help his muscles. I guess the reveal happened around 7 or 8 yrs. Somehow he heard the Becker/Duchenne words and he knew the distinction- all he heard was 100% fatal for Duchenne. We told him the truth- he’s never had a biopsy and we will never be completely sure until that point. Duchenne=death in his book and treating him as an individual I know and love now for 13 yrs., I can tell you that he would be devastated right now to hear any definite on Duchenne.

Naomi- Joshua was diagnosed a when he was 6 weeks old so it was never really introduced, it was common language and information from then on. He started trying to say “Duchenne Muscular Dystrophy” at around the age of 2. He is almost 8 now and helped me do the presentation at his school.

Lori- We have always used the term MD or Duchenne MD. One day in the car, it hit Seph that there was a specific MD name and asked what Duchenne is. I just told him that it is the kind of MD that he has and he was cool with that and now uses Duchenne as his way of talking about it. We orginally told him that his muscles didn’t work like most boys and will get tired quicker. He has been fine with that all along and will tell others.

Lelia- We started right away after Dale was diagnosed explaining that his muscles were “different”. About 2 months after he was diagnosed we attended our first PPMD conference. When we returned we talked to he and his brother and gave them the words Duchenne Muscular Dystrophy. Now it is part of our vocabulary.

Lori- I agree wholeheartedly with Brian, Ben and Sam are almost 13 and 15 now and we have always told them the truth, they have even attended a funeral or two of some friends who lost their battle with DMD. They know their bodies don’t work like everyone else’s early on, let’s give them the truth in love!