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Advice on talking to son

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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Permalink Reply by Cheryl Markey on January 29, 2009 at 11:20pm

Hello, Emily and LeAnn and families,
How has your week been? Hope it has been well!
Are you guys living where you have gotten the snow this week! We are here in northern Maine and are used to the white stuff, this is where the video games and computer keep our boys active with something to do, Aam used to be able to stay out in it when younger, he would sit outside all bundled up playing with his tonka trucks and even matchbox cars, now he gets too cold, so winters are long and hard on both of us, summer we are alway out and about everyday doing something as we know we have to enjoy it as winter comes very fast after summer.
Went and saw the movie Hotel for Dogs this evening with friends after a meal at McDonalds, a couple weeks ago we went and saw Marley and Me ( what a tear jerker movie at the end even men were wiping away tears ), reminded me of our chocolate lab Maia, I am always saying Maia and me.
It is hard this Duchenne Journey, roller coaster emotions like I mentioned before, I find myself alot saying now that Adam is getting older, what am I going to do without my Adam, just last night I was looking at him while he was busy in his room on the computer crying and asking just that, " What am I going to do without my Adam", but you know God could call me home before he calls Adam home. Adam is my only child and we are very close.
I have been seeing discussions re: boys becoming depressed like about age 10 and up......gotta look at it like they are coming into their puberty years just like any other healthy boy is going into....look at it like they are healthy first and the stages all teenagers go into, peer pressure, fitting in with others, will he or she like me, the normal things that bothered us when we were teenagers, they are probably dealing with some of the same feelings we all had, then go into looking at them having DMD or any child having another disabilty, they know they are different, yes, there will be kids that are jerks just like their parents who make infront of others that are different, they learn it from their parents, we have been lucky to where Adam really has never has any issues with this during his school years, growing up with the same kids and attending school thru the years with them is a big plus, alot of parents along with the teachers and principal go an speak to the students and explain what their son has, this way the students know and they accept their classmates and help, unlike alot of adults who would turn their backs. I did this with Adam's classmates, this way they aren't walking around him or away from him wondering what is wrong with him. They are boys first, and they have the same fears and wories as any other boy whether they have a illness or are healthy, then they are boys with DMD and then we need to be aware of their feelings and our own feelings with having DMD in the family and then deal with those issues. They are apt. to be angry at times, they are apt. to be afraid, they are apt. to feel lonely ( which isolation does come into alot of our lives as the disease progresses ), Adam had a large group of buddies to hang with, well, when it ame inot high school years they slowly disappeared, dating girls, going away to college or the military, busy with a job and their own life or busy with their new families.
We will feel guilt at times, you will feel like I do " How will I go on without my.........".
You will feel like no one else knows what you are going thru, truthfully the ones that have healthy kids and say they understand, they don't! They may say they do, but how can they know, duh!!!!! But, all of us here sharing things on PPMD forums, do!

Well, Adam wants a snack, so off to get him one, he has been in his room chatting with his buddy Josh, Josh doesn't have a disability!

Hope all has been well with you and your love ones as we head into the weekend! Check out our "Scents for Duchenne" and share about it with everyone you know!

Cheryl

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Permalink Reply by Joshua's mom on January 30, 2009 at 10:43am

I just wanted to add that Joshua knows that when he gets older he will be in a wheel chair. We collect pop can tabs and each time he finds a can he tells us, 'here's another tab for my wheelchair'. He knows other people from the ages of 2 - 28 who have Duchenne and has seen many in wheelchairs. Nothing has ever been a secret and he doesn't have to ask many questions because he knows what is going to happen later in life. When he sees his doctors, they can talk to him and he can answer most all questions himself. The doctors too talk to him as we do; in his language, but candid. As for the playground play, his entire class knows of his condition. He also has older students helping him when he goes outside for recess. They pull him around in a sleigh to the top of the snow hills (a friend can ride with him too) and help him climb the play structures. He has physiotherapy during circle time so he doesn't have to sit and be uncomfortable. Open communication with the school is very important though.

Naomi