My son was diagnosed at 5. At the age of 6 he wanted to join cub scouts and I really wasn't big on the idea because of the camping and things they do that he may not be able to do or to keep up with.
After a few years of running to therapy and baseball....I decided to give it a try at the age of 8. Let me tell you, it's the best thing I've done for him. It's an organization that you get so much out of and you can give back as well. Last nite the boys went caroling and I had tears in my eyes. It really helps me cope knowing that we can give to others as we travel down this road...I know I'll be counting on people in the future and it is just so satisfying to know we can give back...I know down the road there will be things he may not be able to do....but there will be a bunch of things the boys can do!
My son started as a Tiger Cub at 6 and ended as an Eagle Scout at 18. His troop and his dad made sure he was right in the middle of everything. I know he taught his fellow Scouts some valuable lessons, and each guy needs to be a part of something. Some of my memories include a run-away derby car--with my son inside after the troop dads said they could easily catch and stop the car after aiming it downhill and letting go. Not. Camping out when it snowed and the large tarp canopy filled with snow and fell down on all the tents at 3 am. The boys pulling/pushing/carrying my son in his wheelchair on a hike. My son raising over $1000 to build a ramp he had designed in CAD for his Eagle project. The pride on his face, and ours, at his Eagle ceremony. So Darcy, yay for Scouts and I hope he is one of the few who stays to become an Eagle.
My son was a a cub scout. I would have liked for him to continue into Boy Scouts. When I talked to the boy scout leader he didn't give me the impression that he was really all that interested in changing anything around in order to make it possible for my son to participate.
My husband was an Eagle Scout and he is Xavier's den leader. They have a very special little den. Every boy brings something special. With my husband as the leader activites can be managed a bit around Xavier's needs and honestly, there is a boy with Asbergers, a couple boys with ADHD and one that is just special needs of unknown basis. They are their own Island of misfit toys in a way and they have been together for 3 years and they are the best of buddies. I highly recommend you start as soon as possible. They are friends to be made at a young age that will be friends as our son's progress in their illness.
Like Jennifer's husband, my son is an Eagle Scout. When my grandson with DMD became old enough to be a Cub Scout, my son volunteered to be a den leader. The boys in the den stay together while they are in cub scouts. I agree that these boys will be friends as the illness progresses. Being a den leader has its advantages in that my son can tailor activities for my grandson as well as the other boys. On the other hand, it is mentally exhausting and takes time because of leadership meetings, etc. My grandson's extracurricular activities are limited to what his parents can help with by volunteering. There are opportunities that my grandson would not get if he wasn't in cub scouts. He is learning to give back to the community with some of the charitable events. He is also learning to be a better team person. His smile when he won a ribbon for his pine wood derby car was priceless. My grandson is in his 3rd year of cub scouts. So far, there has not been any camp outs or activities that he could not attend.
Chiming her. My son is 17 with Duchenne and just completed his eagle scout project. He really enjoyed it and is glad he joined and stuck with it. We are now getting all his info ready for his Board of Review. There were somethings that he could not do, but we met with the council and the troop leader and adjusted appropriately.