Halloween and bringing up DMD feelings all over again

I am wondering how many parents are experiencing those DMD feelings again after the trick or treat holiday....You know, your son goes with the neighborhood gang and the gang runs from house to house as your guy is left in the dust.  It just brings up the whole bad feelings and I am interested in how others deal with this and stay positive.  Perhaps I am not at some core level accepting of the disease. Thanks Char Burke - mom to Will age 8

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Hi Char Burke

What we did when my sons were little was we went to only a few houses in our neighborhood and then drove to friends and relatives houses. Sure it took a while but Johnny could keep up. The last house was my moms and then we would have a party.

Thank you I am stilling having such a rough time today. Christopher made it to three house before going in his wagon and about 5 more before feeling upset and wanting to go home. I really hate that he feels that way and I hate DMD sight now for taking the joy out of this day for him he was so excited and after about 30 minutes he was miserable.
next year try a halloween alternative at a local church. They have carnival type games, candy and food. It is a safe place to go and they can do it at their own pace. We would do a few houses around the neighborhood then go to the church. Ryan always had TONS of candy and really enjoyed it. As far as feeling like you have not accepted the disease yet. I am not sure we ever really except it. I feel like it is a continual grieving and mourning process. You just get to where you except where they are at and then they decline and you have to go through the process all over again. It took me a long time to figure that out. I just thought i was on an emotional roller coaster. When i heard my Pastor speak about when you have a death your grieve and mourn. We as dmd parents go through the same type of process . The first time when they are diagnosed and then whenever they decline or as you have stated at times when they just can't do what the other kids do you feel the lose again and again. it is okay and it is normal.
Our son is "older", 12. This year he still wanted to dress up and go out so we took him with a friend that understands he requires assistance and can't run from house to house. Yea, it diminishes the amount of friends he went with but didn't diminish the fun. Plus, he incorporated his wheelchair into the costume so it wasn't as embarassing.

Previously, when we dressed up his scooter he was a huge sensation. Having a costume with wheels was enough of an attention getter ALL his friends stuck like glue. It was loads of work, not cheap, and took us weeks to come up with a costume that could roll but in our neighborhood we found extravagant homemade costumes earn better/more candy. Something his buddies loved too!

Duchenne is never, ever to be accepted. By stretching the imagination parents can teach kids, DMD or not, duchenne won't win. We fight it with every fiber of our being, in every aspect of our lives, together. You are a great duchenne fighter Char, I know you've been at this for quite some time.
Sorry halloween got you guys down.
sending hugs
Last year, Halloween pretty much stunk. We had originally gone out without Sam's scooter, but had to go back to the house to get it. This year was so much better, especially since we incorporated his scooter. I can't tell you the number of complements we got from people in the neighborhood (most of which we didn't know). All the kids/teens that saw him loved it. The only downside is he still can't take it up to doorways. Most driveways were full of cars and then there's the issue of steps to the doors. Sam had no problems with getting out and walking this year, but I can see it being an issue in years to come.

I agree with trying to find a church or some place that hosts a trunk-or-treat or other fall festival. That's our plan for the future.
One alternative would be to trick or treat at the mall. I know our local malls participate. You don't have to worry about the weather or steps. Plus, if you bring along siblings, cousins or friends, everyone would stick together. (For safety reasons, no one should run ahead at a mall.) All malls are handicap accessible, so wheelchairs, power chairs, scooters, etc. would be no problem.
Yes, tough for us too. We ended up hanging with our neighborhood kids and moms. The boys just run like crazy and Alex gets frustrated. They did better this year staying with alex, but I know it wasn't easy for them. Little depressing. I will be glad when Alex just wants to stay home and give out candy with me or his dad. And I agree, church carnivals are a great idea too. Thanks for sharing....I have been in a funk all morning.
Its horrible like the dreaded Field Day. But remarkably, this year everyone came home happy including my 2 with DMD. We fortunately live in a golf course community which is the place to be on Halloween so all of my boys friends were here. My 15 year old was picked up by a few of his friends and they cruised around the neighborhood (he in his wheelchair). My 12 yr. old is still walking but there is no running house to house. He got invited to a neighborhood party then I drove him around in our golf cart..and it was fun for his friends as I let them hold on to the golf cart with their skateboards.(ok so I know that's probably not smart)but....they all had fun including my son.. we focus on the houses with the best decorations and then at the end of the night, I give them their own candy in buckets I put together for them..BTW my 8 year old without DMD was having more fun pretending to be a Jason statue with his friend and jumping out behind the wall to scare teenagers..somehow take the emphasis off trick or treating and do some different halloween fun..like scaring teenagers maybe?..I HATE that we have to always over think and get creative when the rest of the world just puts a costume on their kids, hands them a bag and says have fun..

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