I know the subject of sexuality is sensitive and often a Taboo subject...But sexuality is part of being human. There is also many opinions on what is "normal" sexual behavior. And being curios especially in the teen years is what is considered normal. And our boys are definitely normal when it comes to this subject. So I would like to start a discussion about how families are dealing with this issue. My son will be 17 here in Dec. and showing major signs of wanting a girlfriend, maybe going to some dances and ball games, we have been encouraging and wanting to get him active with his peers. Any thoughts out there??

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I just held a focus group of 6 young men in their 20's. When I asked them the most important thing that parents should keep in mind when parenting a son with DMD, their message was very clear. They are normal young men with normal urges, desires, angst, thoughts and dreams, and they would like to treated as such. They realize that the DMD/wheelchair may exagerate some of their experiences, but feel that their experiences are all normal experiences that everyone has. What they appreciated from their parents the most, was their encouragement to get out there and be an independent young adults. They appreciated that their parents found ways to make normal independent socialization possible (ie, giving friends keys to the van, dropping them off places where their friends were, etc.), even when it made their parents somewhat anxious. I think you're doing everything correctly with your son. Keep encouraging him to do what 17 year olds do, allow him to make mistakes and be there to help him when he needs and asks for help. As you would with any other 17 year old. Treating him like he is a normal teen who happens to also have the diagnosis of DMD is the best thing you can do for him.
Thank you very much. Great information Kathi! Glad to know I am headed down the right path with my son. You take care.

Misty

kathi said:
I just held a focus group of 6 young men in their 20's. When I asked them the most important thing that parents should keep in mind when parenting a son with DMD, their message was very clear. They are normal young men with normal urges, desires, angst, thoughts and dreams, and they would like to treated as such. They realize that the DMD/wheelchair may exagerate some of their experiences, but feel that their experiences are all normal experiences that everyone has. What they appreciated from their parents the most, was their encouragement to get out there and be an independent young adults. They appreciated that their parents found ways to make normal independent socialization possible (ie, giving friends keys to the van, dropping them off places where their friends were, etc.), even when it made their parents somewhat anxious. I think you're doing everything correctly with your son. Keep encouraging him to do what 17 year olds do, allow him to make mistakes and be there to help him when he needs and asks for help. As you would with any other 17 year old. Treating him like he is a normal teen who happens to also have the diagnosis of DMD is the best thing you can do for him.
Misty,
Our oldest son is also 17. He went to the Junior Prom last year and has had a very good "friend" since then. It has been the best thing in the world for him. He is experiencing all of the joy, love, frustration and difficulty we went through in learning to experience a relationship. He was very lucky that he found a remarkable young lady who sees past the chair. She asked him to the Prom after checking with us for not whether he would go, but could he go. They looked great together (see picture on my page). They then went together to a formal Make-A-Wish ball with us last month.
We try to give him as much freedom as possible to go places with his friends if he wants to. Sometimes you have to turn your head a little bit and try not to notice all of the stuff which goes on with older teens.
Not always easy, but it has been worth it.
Ed
Shoot, we are only at the "transition" to puberty right now.. you know the stage, smelly armpits and " suprise rise" in the morning, thinkng he knows it all ...yep, that's where we are at. ( about to turn 11) I wonder what it will be like for him at age 17...acutally, let me rephrase...I wonder what WE will be like then! Sorry, I don't have any advice to give, but I will learn from you all!
Great question. My son is 16.5 and takes steroids. I think the steroids delay puberty a bit. He is just now showing some hair on the lip and chin. Not enough to shave. So far he watches girls from a distance. He mostly hangs out with guys. He tends to be reserved (a watcher). I required him to be involved in one extra curricular activity once he started HS. He needed that expectation. Now he is a Junior and he is involved in 3 activities. At least he is out there. We talk about sexuality and good and bad choices and respect. I guess I will do what any other parent of a teenager does, follow his lead with not too much support.

I went to a ppmd conference some years ago who had a presenter from Denmark? who showed pics of dmd men who vacationed together. They showed swimming pool pics with a bikini clad gal holding the guy up. I think europe has visiting sexual assistants for guys using WC's. I think the US is behind the times on all this, but it feels awkward to me to initiate. Maybe I will learn more here.

Karen

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