Monday, October 31, 2016

How we Trick-or-Treated with Muscular Dystrophy

Happy Halloween from the French gang!

Whew, big sigh...we are back from trick- or- treating tonight! Max was diagnosed with RYR1 Congenital Myopathy this past year, so this is the first Halloween we purposely made adaptions for his health. (vs. just saying, "he's getting tired, let's finish up" like in other years). This year we know the "why" behind why he fatigues and we better know what to do. (Thanks Doc for running the big MD genetic test!)

It's 8:20pm though as I write this and everyone is bathed and in pajamas hanging out now:) Trick- or- Treat Lancaster County, PA started at 6pm. We were home by 7:10. But it went great!

To make this year a success, it started with the costume. A big no to the Storm Trooper helmet that weighs a ton and he fell in  wearing two years ago. No to the cool E.T. costume you make with a hoodie and a milk a crate with an E.T in it is too much to tote around. No to masks in case he trips. No to Ghostbusters as the large amount of equipment is WAY too much. (You should have heard him about that one. "NO. NO. There's SO MUCH with that one. Seriously!" No to Link from Legend of Zelda as that requires carrying a sword. And a shield. Add some pre-teen indecision fickleness and we thought we'd end up as our homemade idea, "Cereal Killer." but that included buying a t-shirt, mini-cereals, and glue, and blood ...well....we just kept looking.

Both kids were managed to be outfitted for $25 at Community Aid Thrift Store (which is like our favorite place in the world). It took a few trips and some patience looking through the costume racks starting in September- but we managed to pull everything together.
 Jessie= $8. Popeye costume= $10
Hat at Party City $7. I made the pipe and a can of Popeye spinach, added a pair of my Birkenstock shoes (Max and I are the same shoe size right now!) and Mimi wore cowboy booties and Max's old cowboy hat.
But most importantly: Everyone was comfy and both outfits wore like clothes. (Except I had to cut the arms of the Popeye costume as they came with a strange amount of uncomfortable elastic- I then resewed them to the shirt sleeves.) But that's ok. This can now be a costume we can use again.

Max was unsure how this whole look would go down.  I loved the sailor look of course. LOL
But, not too many 11 year olds out there 'dressin up like vintage Popeye. I figured it would appeal to his classic cinema/cartoon interest.
So how awesome it was to start trick- or- treating and to hear people affectionately say, "Hi Popeye!", "Oh my gosh it's Popeye! I love that!" "Popeye! That's the best costume I've seen!" and "Honey, look, honey, It's Popeye!"

So, How did we do the rest?

1. We walked slowly. We took our time. No rush. We had two hours. We didn't go with friends this year. Although that would have been fun, kids his age move fast, and um. We don't move fast. Both homeschool families we hang out with have very active kids, so we held off on going with them.

2. We carried band-aids and water. (In case.)

3. He did not go up to houses on hills. He let his sister ask for something for her brother and she brought it back for him. My awesome homeschooling neighbor came out to tell me that they would stay down on their driveway for Max since he didn't have his wheelchair. Thank You!

4. We crossed the street only when there were no cars, because he can't hurry especially if he's tired.

5. He tried to avoid stairs on houses. He stayed on the sidewalk of house steps if possible if a homeowner was sitting on the top step.

6. We brought a second empty candy bag and switched him to an empty bag half way through. Then we carried both bags home for him when we were done.

7. We avoided standing and chatting for too long and kept moving.

8. We stopped at the end of the block on the second street when the steps of the row houses on the second block suddenly get longer and steeper.

9. We walked slowly and carefully home.

10. When we got in the door we took a look at the clock and realized we had done it all in just over an hour.  "Whew we got so much candy. We are done now. Yay!"Then we changed out of costumes, inspected the candy, and hung out- waiting on the last hour of trick-or-treaters.

Trick or Treating with Muscular Dystrophy can be Tricky, but just remember to take your time and go slow. We found that the right costume that was easy to wear really helped (but also was the biggest dilemma.) If you will use your wheelchair, comfort will be key too. Make sure you can see where you are driving too and that your costume doesn't get stuck in the wheels!

In the next couple years of Trick- or -Treating we may switch entirely to a development that is flat with very few steps and employ these tactics again. We may also do a Halloween party at our house-which would allow our friends to hang out with us. We shall see!

Happy Halloween 2016 to You and Yours!

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