Our Sons, DMD and Communication to the World

Pat Furlong wrote a wonderful blog posting of which I whole-heartily agree! http://community.parentprojectmd.org/profiles/blogs/words-mean-something DMD/BMD may break our hearts and make us feel like we are suffering, but our sons do not have to be labeled as dying or suffering - none of us are promised tomorrow anyway! So how do we treat our sons, talk to our sons, talk to family and friends, or even strangers who may notice or ask questions. What would I say? How would I react?

I'm a huge believer in letting my son participate in whatever he wants to do and encourage his adventurous nature. There is no huge fuss over the AFO he sleeps with at night. There were no big parties to make the AFO seem fun and interesting. The AFO's and his shoe inserts (orthotics) are just a part of his normal routine. Most everything he does is meant to encourage his independence life, even when there are times when we do help him up and down stairs or hills. But this is a natural part of our instinct now, and it genuinely feels like a special bonding moment for both him and I. We always respect his need and declaration for "I want to do it myself!" So in many ways, it's a matter of fact for me. It's part of our lives and there is nothing I can do right now to change it. So why fuss over it? Why cry over it? Why make him feel any more out of sorts by my actions and reactions? Most of the time, it's just not worth the anguish nor the energy. It's so much easier to just be aware and understand DMD and not make it into a huge, horrific ordeal.

On the other hand, I often contemplate how much do I communicate about my son having DMD to those outside of our family inner circle - the "Need to Know" circle. Most times, it's no one's business but ours- not to be rude, but to just not make any bigger deal of DMD for my son's sake, then it needs to be. He's too young to be really aware of why he has some limitations. He just does not care that he cannot jump as high or run as fast as his friends or his brother, so why bring this to anyone else's attention needless? The answer is I just do my best to not do this. I'll help him through the realization of DMD as the situation presents itself. He's a smart and vivacious child with such imagination and spirit that DMD is absolutely no hindrance to who he is and his wonderful personality. In other words, it does not define him nor define our family.

So why is that I continue to contemplate how much I should communicate about him having DMD? I know that when I hear stories in the news that would cause me to pause, such as the Swine Flu, I want to throw up that force field around him and tell every parent in his preschool that they need to keep their sick kids home which some people will find very offensive. I do not mean any offense, but it amazes me how many parents won't think twice about dosing their child with a fever reducer and send their child off to school. This is not really my point, I digress.

What I mean to understand is how can I or when should I speak to those outside of the "Need to Know" circle? Using the Swine Flu as an example, I almost sent my oldest son's (he does not have DMD) friends' parents to inform me of any possible flu/upper respiratory colds my oldest son's friends have. I did not send the email because I asked myself, do these parents who I don't even really know very well need to know why I need to know this information? Should I really worry about this? I finally decided that I can stick with the "Need to Know" circle because all reports say this is no more detectable than any other variation of the Flu.

I think the best thing I can do for my son is to ensure I keep an eye out for any potential situations where he may be more susceptible and teach him about how he can protect himself. Of course, as a boy there seems to be a natural instinct to wipe his nose on his arm or sleeve ;-) So, I just keep reminding him about using tissues LOL!

In any case, my "method of madness" here comes down to protecting him from the world of "labeling" rather then protecting him from DMD, so that he can have as normal of a life as anyone can expect. By the way, I giggle here because normal is so subjective! Since this seems to be the bottom line, then it should be easy to come to the conclusion that anyone outside of the "Need to Know" circle just does not really need to know. I can monitor situations like the Swine Flu without shouting to the world why I need to know.

How do some of you feel or handle communications about your child's DMD challenges? I'm curious ...


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Comment by jenn on April 29, 2009 at 12:35pm
we have been very open with our boys (ages 10 and 7) since the very beginning. they know the name of their disease and are able ( if they chose) to educate friends and even strangers.i have not told them anything about their life expectancy , when austin asked if he was going to die from duchennes ( some helpful person had asked me the same question when austin was standing there) i answered honestly, none of us know how or when we will die, and we do everything in our power to help him have a long healthy life. i think the more we talk about it, the less complicated life will be for us. as for the issue of school exposure i think it is very important to inform the staff and parents of the immune system issues (if on steroids) many parents wouln't think twice about sending a sick kid to school, but if they know the potential harm they will at least be able to inform the school nurse of illness so you can chose what your plan of action is ( i once had a classmates parent call me at home to tell me of a chicken pox outbreak, and i chose to not send my son to school until we had talked to our doctor) we have had strangers ridicule my son (who looks fine some days but gets tired) for riding in a grocery cart, or not helping carry shopping bags. i chose to thank them for there concern, but i also think it is important to let them know that austin is very helpful, but has muscular dystrophy . i want him to know that he doesn't need to be embarassed of duchenne, or to think he is lazy or not helpful because of his physical issues.recently a woman actually pushed max (7) our of her way at a gas station store, when i confronted her she said he wasn't moving fast enough. she seemed mortified when i pointed to our van, in a handicapped parking space and said, he has a hard time moving fast or far due to his muscular dystrophy. i am willing to bet she wont make a comment like that again, to anyone. part of our jobs as these boys parents is to protect them, but also to help them have the tools they need to get along without us. we try not to dwell on the issues, and i refuse to let anyone pity or coddle my boys, the fact is, everyone has their weakness in life, boys with duchenne just happen to have a physical one. the more open we are as a family the less likely people are to treat the boys differently
Comment by Liisa Underwood on April 29, 2009 at 12:15pm
Wow, I just love hearing all of your perspectives. This means so much to me.

Please know that my Need to Know circle is not meant to imply a secretive nature of my approach. I am right there with many of you about educating the public at hand and find ways to encourage others to help us fight DMD/BMD or other MD issues. I am not interested in educating as a response to something like the Swine Flu. In fact, I have my children's teachers keeping an eye out for me about any possible issues at their respective schools. I am also working on presenting an informational meeting to my son's public school - difference being that I'm looking to educate without trying to get my son caught too much in the middle of this - if that makes any sense.

Ian - you are a strong man and so proud of you for courage, as well as your willingness to explain how frustrating life can feel for you some, most or all of the time. It's certainly not a fair "cross to bare." I will always continue to fight for improvements to the quality of life for the boys and men with DMD. I am so thankful we have strong people like Pat Furlong, as a leader, teacher and guide to the rest of parents to aide and support our convictions towards a cure.

With much love and respect to all families dealing with Muscular Dystrophy.

Comment by Brian Denger on April 29, 2009 at 9:25am
Thank you for expressing your thoughts Liisa. I enjoyed reading your post and have taken the same stance with my sons. Our lives are complicated enough without adding unnecessary “baggage” and I believe the approach you describe is more balanced.

I do not think that being selective with who you share information about your son's diagnosis is the same as being secretive. There is a great need to raise awareness about the disorder, yet how effective can one be with casual acquaintances or strangers? There are better ways to educate the public than trying to bring people up to speed about this complex multi-system disorder in a five minute conversation. And let me add that it is imperative that this educating of the public and/or professionals be accomplished in a factual manner.

Creating a frank dialogue about DMD paints a compelling image without the need of embellishing the facts. Whether intentional or not, excluding details about the improvements made over the years is not only disingenuous, it may create the illusion that nothing can be done to improve the course of this disorder. Over the past several years adults with neuromuscular disorders have protested what they see is exploitation of children with the same disorders for fund raising purposes. Using the term "genetic killer of children" not only ignores the fact that more individuals are living longer with DMD, but also is a form of exploitation. Sticking to the facts provides a credible and compelling story making the case for expanded funding for DMD research.
You have no argument from me that DMD is a terrible disorder and more needs to be done to help affected individuals and families. Focusing our energy on just the negatives is draining and ineffective. Each day is precious and should not be wasted. Telling our stories can be productive when we consider our goals and audience and tailor that discussion to elicit support and hope.

Brian Denger
Comment by Ofelia Marin on April 28, 2009 at 6:18pm
I do not think "look - we're trying to cure this disease that's robbing children of their future." sounds manipulative at all. This is the truth; it does rob them of their future. They might not die in childhood (a number of them at least) but as long as their quality of life is low, as long as they are suffering, as long as basic things like breathing, feeding, toileting, bathing etc. are as they are, as long as they cannot live independently, in my books, the average age of death is meaningless. When I think about my son's future the first thing that comes to my mind is that I do not want him to suffer.
Comment by Mindy on April 28, 2009 at 4:13pm
I should have said men with DMD, not boys. Sorry about that.
Comment by Mindy on April 28, 2009 at 4:09pm
Ian - I really appreciate hearing from boys with DMD, so thank you for your post. I always wonder how my son will feel about all of this, but he's still so young that it's just speculation for now. I would love to hear more from you about what helped you deal with it, what has made it harder, etc, if you're willing to share. Basically, just some advice for those of us with younger kids.

On not using dire language to talk about Duchenne in the public. I completely see everyone's points on giving our sons the best attitudes for dealing with the disease, however, I also believe that using language like "genetic killer of children" is very effective when you're trying to get people to open their wallets. If you tell them things like - oh, it's just a condition that has to be managed - it doesn't have near the urgency of saying, "look - we're trying to cure this disease that's robbing children of their future." I know that probably sounds manipulative, but I will do what it takes to get as much money as I can into the hands of researchers, and sometimes, being stark about describing the condition is effective.
Comment by Ian Anthony Griffiths on April 28, 2009 at 12:22pm
I agree with some of the sentiments, namely not adding to the stress of having DMD at a young age and not making a big deal of things. I can understand not telling people, but keeping it secret isn't helping us get treatments or cures, for too long in this country at least, you have medical professionals who know nothing and encourage you to keep it quiet and that means suffering in silence! I think we need to tell the world about DMD, raise the funds and bring a treatment today and not in 10-20 years.

At a young age the aspects of DMD can be dealt with alot easier, (i know this, i've been there, ive got DMD), but when you get older you really can be suffering, some days its so hard just to sit there and breathe, impossible to eat "normal" food, without blending it or needing the tubes. The other aspect I hate is not having friends, not having a girlfriend being stuck in this house. I'm not saying this for pity or to make people feel terrible, this is just how it is. Why keeping it secret isnt always best.
Comment by Ofelia Marin on April 28, 2009 at 9:48am
I agree with you completely. Very well said!

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