There is only 42 other boys/young men here in AK that have Duchenne and we all live an hour or more away. Or transportation is only by plane or boat. Which leads my son alone or playing with his younger sibs which are all under the age of 9, he is now 16 and becoming bored.

My son has friends at school but they aren't lining up at the door for after school studying or just hanging out. Anyone have any ideas??

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I wish I had some answers for you. Even though we live in Southern California we are experiencing the same thing. Jon is 17 has really isolated himself which is made even worse since he is doing his schooling through an Independent Study program. He only has one friend that occasionally comes over, but their lives are taking different paths as they get older. Jon has two older sisters and except for watching the occasional movie or episode of Stargate they don't really spend much time together. He doesn't really want to go anywhere except for the movies once in a while. He spends way too much time playing his x-box. It is hard to tell what is the MD and what is normal for a 17 year old boy.

We were blessed to visit Alaska 5 years ago. It was Jon's dream to visit Alaska and we took him on a 10 day adventure. Jon was able to do everything he wanted to do, he wouldn't be able to do many of those things now. My hubby even caught a 60 pound King salmon which we had flash frozen and brought back with us.

Yes I can see independent study adding to the isolation. I will keep you in mind as to different ideas. I think I will talk to Luke's school counselor and see if there is any seniors wanting a degree in special ed or something, maybe can find someone who wants to hang out and do stuff.

I hear college is easier because older kids that aren't influenced by there peers as much want to include everyone. Here is a blog that I find very inspiring hope you enjoy it too.

Alaska is wonderful, I can't imagine living anywhere else. Maybe as I get older being a snow bird or something. We will have to see. I like to travel so we will just have to see.

I'm really sorry your son is becoming bored.
Is there type of summer activities that your son could take part in to make friends, and be around others?
I wish I had good news for you Misty, but we have found this to be true time and time again. We even have family and they don't even come and visit us that much. We all have to help each other out with this topic. Just let them do what they find pleasure in. We take bike rides or walks. That is why us parents need to try and get together with each other to share our journey and in us getting together we get our kids together. The last outing we took with my oldest son was to see Spiderman 3 here we were going through the mall, with three power wheelchairs, and people just stared at us, I would just smile and say hi to them. We took up the whole row of handicapped seating it was great.

You do have to make them get outside even if it is for a couple minutes to check the mail with you. Just be creative. As my oldest got worse and worse we could just watch TV together and hold hands or listen to music with each other, I would dance around real crazy for him ya know anything to get a smile out of him. He didn't have much at all, but he thought he had it all!!! He knew he had my heart no matter what. Sorry if this isn't what you wanted to hear.
Hi Misty,

What can and does your son like to do? Can you fabricate some of his favorite things to do and invite some friends? Keep inviting them, connect with the moms. What do the other 16 year olds do in your area for fun? I understand it gets harder as they get older but what about having a DMD party BBQ for all the 42 guys (or just the teenage ones) in Ak? It seems the price for one hour of travel is worth keeping spirits up, can you arrange to visit them while doing something else in their town? Are there MDA functions where you all can see each other regularly? Can you start up a group of DMD teenagers and let them meet for dinner or something? Could they go camping (with assistance of course)?

Staying together is key even if it's only with one other guy once in awhile.
I hope something works out
all the best,
Thanks everyone, lots of good ideas. There is only two other boy with DMD in our area, the others are more than 5 hrs away and the other are all spread out around AK only acessible by plane or boat. Not easy. I really think having a get together for Luke and keep inviting friends and connecting with their moms is the best bet. I will keep everyone informed!! : ) We are a very outdoors family and spend tons of time with our HUGE family here. But it still would be neat for Luke to have friends his own age.

Thanks again, keep the ideas coming.

Tanya you really did have tons to say, when I look at pictures of Luke and ask him, he would say he has it all too..., thank you for pointing out the simple beauty that makes life so special.


Here is another idea that you could do. My son really couldn't go outside and camp, so since I sew scrubs for people I had all this extra dark gray fabric that no one seemed to like so I took all the material about 16 yards of it. and lined his room with it even the ceiling. I made him and indoor tent, it was alot of work, but his brothers and sister camped out with him in his room. We even gave them all flash lights. I bought a dvd with outdoor sound on it too. They had such a blast!!! You maybe could do something like this and invite his 2 friends over I think they would enjoy it. I just took the material and a staple gun and went to hanging material the nurses loved it. Just another idea. I think sometimes we know more what they are missing then they do, so we want to make sure they enjoy things. But like you said Misty they just are so happy with the simple things, too. I have always had the attitude I am going to try and cram 80 years into 20 or 30 years.
Misty - Since it is probably hard in winter to go places, you could start a web site for all the DMD boys to talk about life and what they like to do.
Other things I have thought of - maybe having a barbeque or movie night - charge admission and donate some proceeds to PPMD and some to your son's account for medical down the line. You could just do movies at your house and invite friends....
There is voice activated software and there is an electronic device that can put the picture of the person using the pc on line.
What about a swimming weekly lessons with some of the other DMD boys?
I can't think of anything else right now...
Char Burke
We also have a special baseball league here, everyone that is on it is special needs, some physical, most are children that are in the special ed program at schools. It is a great thing for them to get involved in. The games go liike this, we only have two innings, because, each child get to swing until they hit the ball with or without help from the coach. They all make a home run, noone gets out, and each game is tied so that noone with uncontrolled behavior gets mad. It is great each child has a smile on their face from ear to ear. They actually feel like " HEY I CAN DO THIS"
You could get together with the teachers or another parent of a special needs child and organize it even.

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