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we had the same issue with our 11 yr old at a neighborhood bbq, sorry to say im in the same boat...we decided from now on we invite folks here and have only activities that our boys can do.
This won't work for everyone -- but I have observed my son with my grandson (DMD) (8) and here is what he does. He makes the event cool for my grandson. Some examples -- my grandson recently received a birthday invitation for a party at a water park for two very active twins. There was a note inside saying that they were unsure about my grandson's ability to participate but the twins wanted to invite him because he was a good friend. My son donned a swim suit and was my grandson's legs for the party. He carried him up the four flight of stairs to the top of the water slide countless times -- a good time was had by all. Second example, for the annual Department of Public Works (DPW) school field day at school, my son lifts my grandson into the seats of the equipment -- firetruck, rear end loader, etc. and another good time. Third example, my son is the den leader for the cub scouts, and designs activities that keep the active kids active and involved while making sure that my grandson is actively engaged. Fourth example, at their cousins house -- the one with the new trampoline --, my son is "jumping" my grandson to make sure he is safe. I could go on -- my son is trying to stay in the best shape possible to help my grandson not miss out on life. My son is missing some of the adult interaction of the events. The other kids accept him as my grandson's helper and not an adult who is there to "supervise."
Another observation, my grandson has lots of "girl" friends as well. They are not as active and play well with him. While going to the DPW field day, my son was pushing my grandson's wheelchair (he was invisible to the kids). He said that my grandson had a girl holding each hand. My son is telling my grandson that girls are not "icky" and that he would miss out on a lot if he didn't have friends with both boys and girls.
This works at this stage of the disease, but as it progresses, I am sure there will be times that my son cannot be his legs and times where my grandson may feel left out.
Terry -- I am so proud of my son and his wife. This disease is so horrible and takes such a toll on a family.
What they do is PLAN or "strategize" (as they say). When an event comes up, they will talk through what they can do to make it easier for my Grandson and even call the event holder to discuss strategy so our grandson can participate. This has translated to school and my grandson's closest friend's parents for play dates. It takes a toll on them having to anticipate so much and sometimes they get it wrong.
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