I was wondering if anyone could provide any advice or share their experiences talking with their sons about DMD issues….particularly at a younger age.

My son, Jake, is four, and I want to be more prepared in talking with him about it as he seems to becoming more aware of how he differs from others. The other night at bedtime, he was telling me how two of his friends at school wouldn’t listen when he told him he was strong. Evidently, they had been playing some game and the other two maybe said Jake wasn't strong. I think Jake thinks he is strong as most four-year-old boys do, and I don't want to "burst his bubble" by telling him he isn't as strong. In past conversations, we have shared with him that his muscles are tighter than other peoples and stressed how everyone is different, etc. I have never told him that his muscles aren’t as strong as others or that his muscles prevent him from jumping as high or running as fast as other kids. I so want to say the “right” thing to him and tell him the best way to respond to people who may make comments about him. He has also recently told me how tired he is at preschool. I’m glad he has told me this so we can make some changes. However, I also wondering if I should be telling him why he is so tired?

We are heading to Cincinnati next week for Jake’s next appointments with Dr. Wong, and I really feel like more questions are going to arise. I didn’t realize how uncomfortable I would be in these situations. I really fear making him feel different, inferior or limited in what he is capable of. I just want to shield him from it, but I know I need to more open and comfortable discussing it. I would really love to hear how other parents have approached these types of discussions if anyone is willing is share.

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We knew Joshua had DMD when he was 6 weeks old. We never kept it a secret from him all the way along. You've already told Jake his muscles are tighter, so you can explain to him that with his muscles being tight, they aren't as strong either. He might not be able to run as fast his friends because the muscles in his legs don't let him; he might not be able to climb as well as his friends because his legs aren't as strong; he may tire more easily during gym because his legs will get sore so he has to tell his teacher he needs to sit down for a few minutes; when sitting on the carpet at story time he may have to move his legs or get up and sit in a chair because his legs may get stiff. We went over it all with Joshua's kindergarten teacher. Joshua knows though how to read his own body. Everything he feels we explain why and every medication and supplement he takes, he know what part of his body it helps. If any of his friends ask him a why question, he can answer and explain. His teacher often asks him things and he can answer her with descriptions and she can do what she has to. Kids are like sponges. If Jake knows what is going on with his body, he can learn to listen to it and adapt what he is doing to make himself more comfortable and feel better. I hope any of what I said helps. Good luck.

Naomi
Like Naomi, we were also very open with our son about DMD. After talking with him about DMD and his muscles I would always follow up with.... but you know you're very smart and your brain is very strong.... you can do anything with that. Adding a positive always seemed to help him see a brighter side. He used to say... it's not so bad... it could be worse... there are people with stuff worse then me.

At the beginning of every school year I would ask him if he wanted the teacher to talk to the class with him there or would he like for her to talk to them separate. He said he wanted to be there. I would give the teacher some ideas on what she could say to the class. The kids were always very excepting, helpful and protective. I wish you all the best.

Mary
Hi Emily,

I don't think there is a "perfect" way to talk to your son about this...no one ever feels "comfortable" doing this. But I think that it is a good sign that you are thinking about these things. Everyone is different, and you have to go with your gut on this one, but I can give you some general advice that we have found helpful (in addition to what has been previously described by others here).

I have always been a believer that it is better for our sons to hear from their parents that their muscles are different than to hear it from someone else. Talking to him now gives him the words that he needs to explain it to others, helps him understand that it is DMD (not HIM) that is the problem, ensures that he gets the right information, and helps him understand that the family is not keeping secrets from him. He probably already knows that something is different.

Don't feel like you have to have a big "family discussion" about this with your son. Often times, especially for the younger ones, it makes the most sense to them when you bring it up in circumstances when it will make the most immediate connection for them. For example, when he gets tired, when he brings up what his friends say, if he is having a hard time climbing at the playground, etc.

You can mention that he has Duchenne, which makes his muscles different. Sometimes this means that he can't run as fast, or climb as much, he has to go see the doctor, etc. It doesn't have to be real complex or anything, just enough so he can understand what is happening in the moment. And remember, this should not be a one time conversation. You should continue to check in and make sure his understanding is accurate, etc. I have run across some kids who will argue with their parents that their muscles are fine. That is OK. You don't have to "win" the argument, just start the discussion. They will come around eventually.

I strongly agree that educating the other kids in class and the teacher about DMD can be really helpful. Simple words at their level, etc. They tend to be really protective and inclusive.

I have found that most parents are much more fearful and anxious about this discussion than is warranted. Most kids are like, "OK, I have DMD, so what's for dinner?" when the parents have been absolutely dreading it.

So I would say do what your instinct tells you, but don't be afraid to bring it up.

You'll do fine!

JP
Hi Emily,

I can follow on to James comments. My son is now 15 and we were always honest with him. But we tried to explain what he had with age appropriate descriptions. The discussion around DMD was never a huge family discussion. It was usually came up as a question while he and I were driving someplace. The trigger was always that he noticed that he could not do something the other kids were doing. When he was about 5, he asked me why he could not run as fast as his friend Billy at day care. I explained that his muscles where different from the other kids and that he might not be able to do things the same way that they did. He accepted that answer. When one his friends asked "Why can't you run fast?" He said: "My muscles don't work the same as yours." They accepted that answer and moved on. My advice is to always probe a little to find out what triggered the question. Because sometimes what your son is thinking could be totally different from what you are thinking.

I agree with James, this is never easy, and follow your instincts. You will do fine.

Christine P.
Wow, thank you all for all of your wonderful replies. It's extremely helpful to know how others approach this! I imagine my worry and fretting over it is probably a little worse than how our actual conversations will go. I definitely like the idea of him hearing this from us before his peers....very, very good point. Even though he may not think he is different, his peers are starting to notice, so it's best that we prepare him for that. Thank you again for all of your insight!

I have another slightly related question if any of you have time. We have a two story house, and Jake has just recently started wanting to go up and down the stairs quite a bit. In the past, he just never did. If he wanted something, he would just ask us for it, and he didn't really have an interest in going up the stairs himself. But, recently he has started wanting to go upstairs to find a toy, go see his brother or his dad or something. I don't want to limit his independence, but I was thinking I just need to explain why it's not good for him and ask him to go down on his bottom or something. Anyone else have any good solutions? Do you just keep reminding them that it's not good for their muscles to go up and down the stairs? Have they been OK with this?

Thank you again! It has been so helpful to hear from others who have gone through this!
We too live in a two-story house. The stairs were a huge thing here too. Josh started to crawl up the stairs on all fours; went to one step at a time with both feet; alternating steps; then he was flying! No worry, once he's got his balance, his legs will strengthen, and he is still young enough that he will be doing it in no time. It's the coming down that we always pay attention to. Not so much the tripping, but the falling, or the over stepping. You probably have a handle or railing so you can remind him to keep using it. He can even go down on his bum slowly at first if it's too fast.

Naomi

Dear Emily

My advice is to sell and buy a house on one level or put a lift in the house for him to get up and down. My understanding is that stairs are one of the worst things these boys are subjected too. Up is bad, but the sudden jolt and impact going down is worst. I am absolutly non negotiable on stairs, let them live as normal a life as possble, I have got everyone carrying them up and down stairs, seems crazy and you get strange looks from people who do not know. I can imagine them thinking, look at that bot with the huge calves being carried by his Dad.

As for keeping him informed, I feel it is very important, as he needs to know he has a limitation and also that he shoud not do things like stairs and long walks, so he too can protect the muscles from deterioation. We have given him some infomation on his weak muscles, and the importance of looking after them by not exerting himself, the other issues we will discuss when he asks. Honesty with the relevant facts around his milestones are our stratergy.

Good luck and don't forget to make each day count.

Colin

J's mom said:

Wow, thank you all for all of your wonderful replies. It's extremely helpful to know how others approach this! I imagine my worry and fretting over it is probably a little worse than how our actual conversations will go. I definitely like the idea of him hearing this from us before his peers....very, very good point. Even though he may not think he is different, his peers are starting to notice, so it's best that we prepare him for that. Thank you again for all of your insight!

I have another slightly related question if any of you have time. We have a two story house, and Jake has just recently started wanting to go up and down the stairs quite a bit. In the past, he just never did. If he wanted something, he would just ask us for it, and he didn't really have an interest in going up the stairs himself. But, recently he has started wanting to go upstairs to find a toy, go see his brother or his dad or something. I don't want to limit his independence, but I was thinking I just need to explain why it's not good for him and ask him to go down on his bottom or something. Anyone else have any good solutions? Do you just keep reminding them that it's not good for their muscles to go up and down the stairs? Have they been OK with this?

Thank you again! It has been so helpful to hear from others who have gone through this!
I really know how hard it is, with how to talk with your child. I've been in that position many times, and it doesn't get easier as life goes on. There are always things that are hard to tackle but ultimately only you will know what to say and when to say it. We've had professionals saying to us that they thought we were protecting our child, but actually part of them needs protecting (to a point - and that point is different with each case). All I can say is, 'that point' should be guided by what your child needs (rather than what you need, or what you're scared of). There will be times when what you're saying will be upsetting, and we as parents have to be strong with that, and as long as you're there with open arms and with love, and teach them from a young age that what's important is what's inside, then that's the protection they need (support with the hard things, rather than not saying them). Hearing the hard things, aren't so hard with love in the background and when that child feels loved (which all of our children do), it will make dealing with the hard things easier. The incremental steps in which you choose to go, are dependent on when he's ready to hear more (it sounds like he might be). With our boy, we said to him from the beginning 'you've got muscular dystrophy' which meant if anyone asked him things or picked on him (they didn't often at all) but if they did, he could say it's my muscular dystrophy. Having a name made it much easier for him. He didn't mind having muscular dystrophy, as it made him 'special'. We also explained how some people are better at maths, some people are better at sports and that everyone has things they are good at. Our boy was really good with computers and maths, so any time he felt he wasn't as strong as the other boys, we'd say 'but look what you are good at' I don't know if that helps at all? Good luck with everything
Be honest! My son is 23 yrs. old and I have always been honest with him, how can you not be, they are right there in the room during clinic visits. One friend I know wasn't honest with her son, when he was getting closer to his teenage years and started asking questions when he noticed the weaknesses setting in ( wrong age for a child to find out his parents haven't been truthful )......now he is so mean to his mom, disrespectful etc.. My son is happy, strong, my strength and deals with having Duchenne very well. Another way to help you look at the picture of what to tell your son.....children who have cancer know the truth, how can they not when they are amongst all the Dr.'s, nurses, other hospital staff and other children having their chemo treatments and their families at Children Cancer Treatments Hospital Centers. Young children do not understand dying in the same concept that we adults do. Be honest, as it will benefit your child to hear it from you then from someone else that may blurt out what he has and what happens with the disease. Adam has been in tune with his body and the weaknesses when they happen and he has been the one to direct me and his Dr.'s what he needs next to help him as far as adaptive devices. Also, don't over protect, keep him busy, allow him to do as other boys do his age, if he falls allow him to brush himself off and start all over again, as Adam taught me this as you will need this advice in the roller coaster ride you all have ahead of you......emotions, isolation, disrupted sleep, the list goes. Adam just eats a healthy menu everyday ( none of this Royal Bee Jelly stuff, herbal remedies.....think it is a genetic chromosone disease...the biggest chromosone in the body....think if it worked everyone would be cured ), he isn't much of a junk food eater, keep shoes on them as this helps promote their ankles and feet turning inward or outward ( he never wore leg braces, tried them, he didn't like them ), keep him out in the public everyday, laugh everyday, don't think you are whacked you will cry, you will be afraid and scared.....it isn't a easy road but, our boys make it worthwhile!!! Notice most of the families on here have younger boys than my son.

Check me out on Facebook and MySpace as I support our cause on both sites...using any avenue I can to spread awareness and help raise funds for our boys!
Adam's mom Cheryl Markey
Hi Danielle
You have such a way with words and you are so wise. We have also told Ross that he had Duchenne Muscular Dystrophy from a very early age and feel that it has helped him come to terms with his condition. I do not know if Frankie talked much about his condition but Ross makes it easier for us by not wanting to know much. However I do feel he knows more than he lets on but does not want to upset me by talking about it. This is why our boys are so so special, Ross is more concerned about how much he will upset me so does not like to talk about the future much. Hope to chat with you soon
Always thinking of you
Love Lynne xxx



Danielle said:
I really know how hard it is, with how to talk with your child. I've been in that position many times, and it doesn't get easier as life goes on. There are always things that are hard to tackle but ultimately only you will know what to say and when to say it. We've had professionals saying to us that they thought we were protecting our child, but actually part of them needs protecting (to a point - and that point is different with each case). All I can say is, 'that point' should be guided by what your child needs (rather than what you need, or what you're scared of). There will be times when what you're saying will be upsetting, and we as parents have to be strong with that, and as long as you're there with open arms and with love, and teach them from a young age that what's important is what's inside, then that's the protection they need (support with the hard things, rather than not saying them). Hearing the hard things, aren't so hard with love in the background and when that child feels loved (which all of our children do), it will make dealing with the hard things easier. The incremental steps in which you choose to go, are dependent on when he's ready to hear more (it sounds like he might be). With our boy, we said to him from the beginning 'you've got muscular dystrophy' which meant if anyone asked him things or picked on him (they didn't often at all) but if they did, he could say it's my muscular dystrophy. Having a name made it much easier for him. He didn't mind having muscular dystrophy, as it made him 'special'. We also explained how some people are better at maths, some people are better at sports and that everyone has things they are good at. Our boy was really good with computers and maths, so any time he felt he wasn't as strong as the other boys, we'd say 'but look what you are good at' I don't know if that helps at all? Good luck with everything
Hi Cheryl
I have always answered Ross's questions as honestly as i can and I have always told him the truth. The only problem is that he has never asked about whats going to happen to him when he is older. I wish he would as I dread him finding out from someone else. Sometimes I think he knows but does not want to talk to me about it because it would upset me too much. He is 14 years old now and also eats a healthy diet and has only taken calcium supplements. He enjoys life to the full and we are always laughing together.
best wishes
Lynne



Cheryl Markey said:
Be honest! My son is 23 yrs. old and I have always been honest with him, how can you not be, they are right there in the room during clinic visits. One friend I know wasn't honest with her son, when he was getting closer to his teenage years and started asking questions when he noticed the weaknesses setting in ( wrong age for a child to find out his parents haven't been truthful )......now he is so mean to his mom, disrespectful etc.. My son is happy, strong, my strength and deals with having Duchenne very well. Another way to help you look at the picture of what to tell your son.....children who have cancer know the truth, how can they not when they are amongst all the Dr.'s, nurses, other hospital staff and other children having their chemo treatments and their families at Children Cancer Treatments Hospital Centers. Young children do not understand dying in the same concept that we adults do. Be honest, as it will benefit your child to hear it from you then from someone else that may blurt out what he has and what happens with the disease. Adam has been in tune with his body and the weaknesses when they happen and he has been the one to direct me and his Dr.'s what he needs next to help him as far as adaptive devices. Also, don't over protect, keep him busy, allow him to do as other boys do his age, if he falls allow him to brush himself off and start all over again, as Adam taught me this as you will need this advice in the roller coaster ride you all have ahead of you......emotions, isolation, disrupted sleep, the list goes. Adam just eats a healthy menu everyday ( none of this Royal Bee Jelly stuff, herbal remedies.....think it is a genetic chromosone disease...the biggest chromosone in the body....think if it worked everyone would be cured ), he isn't much of a junk food eater, keep shoes on them as this helps promote their ankles and feet turning inward or outward ( he never wore leg braces, tried them, he didn't like them ), keep him out in the public everyday, laugh everyday, don't think you are whacked you will cry, you will be afraid and scared.....it isn't a easy road but, our boys make it worthwhile!!! Notice most of the families on here have younger boys than my son.

Check me out on Facebook and MySpace as I support our cause on both sites...using any avenue I can to spread awareness and help raise funds for our boys!
Adam's mom Cheryl Markey
Thank you for your wonderful insight and advice Cheryl. This question has been on my mind (and my husband's) alot lately, as my son has been starting to ask me why he can't run as fast or jump as high as other boys in his class. He is on Deflazacort and has been wearing night splints for almost a year. So far, we have explained that his muscles are "sick" and the medicine and night splints help to keep him well and strong. Tonight he told me that his little white pills STILL don't make him run as fast as the other boys and after I put him to bed, I came looking here for answers. Your post has really make me think more about the road ahead and what we need to do now to insure that our sweet, joyful little boy continues to love life as much as he does now.

Cheryl Markey said:
Be honest! My son is 23 yrs. old and I have always been honest with him, how can you not be, they are right there in the room during clinic visits. One friend I know wasn't honest with her son, when he was getting closer to his teenage years and started asking questions when he noticed the weaknesses setting in ( wrong age for a child to find out his parents haven't been truthful )......now he is so mean to his mom, disrespectful etc.. My son is happy, strong, my strength and deals with having Duchenne very well. Another way to help you look at the picture of what to tell your son.....children who have cancer know the truth, how can they not when they are amongst all the Dr.'s, nurses, other hospital staff and other children having their chemo treatments and their families at Children Cancer Treatments Hospital Centers. Young children do not understand dying in the same concept that we adults do. Be honest, as it will benefit your child to hear it from you then from someone else that may blurt out what he has and what happens with the disease. Adam has been in tune with his body and the weaknesses when they happen and he has been the one to direct me and his Dr.'s what he needs next to help him as far as adaptive devices. Also, don't over protect, keep him busy, allow him to do as other boys do his age, if he falls allow him to brush himself off and start all over again, as Adam taught me this as you will need this advice in the roller coaster ride you all have ahead of you......emotions, isolation, disrupted sleep, the list goes. Adam just eats a healthy menu everyday ( none of this Royal Bee Jelly stuff, herbal remedies.....think it is a genetic chromosone disease...the biggest chromosone in the body....think if it worked everyone would be cured ), he isn't much of a junk food eater, keep shoes on them as this helps promote their ankles and feet turning inward or outward ( he never wore leg braces, tried them, he didn't like them ), keep him out in the public everyday, laugh everyday, don't think you are whacked you will cry, you will be afraid and scared.....it isn't a easy road but, our boys make it worthwhile!!! Notice most of the families on here have younger boys than my son.

Check me out on Facebook and MySpace as I support our cause on both sites...using any avenue I can to spread awareness and help raise funds for our boys!
Adam's mom Cheryl Markey

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