Plinth Blog Special Needs Parenting

13Aug/174

Having a Child with Down Syndrome, Part CXXX: Comic Con Success

One day recently when I was in my local Comic Book Store, Modern Myths, I saw a flyer for Boston Comic Con. I knew that E and Stuart would be out of town on that week, but I thought it might be a good end of week event for Alice and me. I bought tickets and started to make plans for how to best manage this with Alice. There's a lot to unpack here, so bear with me.

First, if you're looking for how to do this with your child with disabilities, then your best guide is is how well you know your child. Alice is a very social child with a deep love of fantasy and movies. She also has only so much stamina and can get easily overwhelmed from excess stimuli and can have difficulty overriding her desire to touch things and people. A week before the con, I talked to her about what we were going to do and when and what we would see there. A day before, I reminded her of it and we talked about what we would be likely to see: artists, their pictures, people in costumes, sessions and so on. We talked about how it was OK to look, but if we wanted to take pictures we had to ask. We practiced a simple script for asking politely. We talked about not walking off. We talked about listening. We talked about using words. We talked about that the event was going to be crowded and noisy.

The next morning, we got up and had breakfast and got ready to go. First parenting trick, I took from E, have sharpie, will travel:

I wrote my phone number on her arm just in case we got separated. Next, packing. Con food can be problematic and expensive, so I packed a snack, a bottle of water, and some gluten-free hamburger buns. Alice decided that she wanted to bring some magazines with her in the car, so she grabbed a stack and we headed off. In the car, we reiterated the talk we had the night before. Alice remembered a lot of it.

When we got there, we talked about lines and waiting, and patience. We looked at the schedule and talked about what we would do. I wanted to meet with some of the artists, Alice wanted to go to a cosplay makeup session, and we had a photo op scheduled around midday. I titrated the snacks into Alice so she would make it after the photo op and we enjoyed seeing all the people in costumes.

Alice was terrific. She told me when she wanted to look at something or someone in costume. When she wanted a picture, she asked and the cosplayers were very kind in that regard. Most of them were very taken with her like Aquaman:

He gave her his trident to hold. And then there was Thor:

This man was huge - probably 6'5" and we took a couple pictures and when I suggested that Alice might be worthy to wield Mjolnir, he acted completely surprised that she was.

We scheduled down time. We went to some sessions about makeup and cosplay body image. Alice listened, but probably didn't get much out of them other than the opportunity to be in a much quieter room and to sit for a while and quite honestly, that's not nothing.

We also did a meet and greet with Felicia Day. I explained what would happen. I showed Alice pictures of her. Alice said, "She's so pretty and she's smart and she likes to wear costumes."  Felicia Day, who is an actress, runs Geek and Sundry, which is an online presence for entertainment productions for and by geeks. One thing that stands out in her organization is the large number of women in prominent roles. While I'm sure I don't know all the detail, what I see is someone who actively opens doors for women who are more likely than not to have had doors shut. This is a great thing.

When it was our turn, Alice ran in and went for a hug. I stepped to the other side of her and expressed my thanks and the reasoning that when she opens doors for other women, she is likely indirectly opening doors for people like Alice. Think about it, if someone creates an opportunity for you where culturally and historically you've had them taken away, wouldn't you be more likely to pass that on? Alice started to bolt off, but Ms. Day said, "Oh my God! That's so nice!" as I was catching up with Alice. As I caught her, I turned around Ms. Day was setting up for the next group, but she caught my eye and we exchanged brief smiles of, I think understanding.

(Mental note, Steve, when you put your arm behind your back it makes your stomach pooch out)

As the day went into afternoon, Alice was clearly tired and I suggested we go. She agreed and we started our long walk back to the car. We stopped for water and looking ahead at the distance (it was about 1/4 mile), I set landmarks for places where we could stop. At one point Alice said, "I need to take a break. I sit down and drink water and enjoy the air." She told me one foot was bothering her, I took off her shoe, orthotic and sock. The sock had bunched up a little bit, but her foot looked pretty good, so I had her put her sock back on and after some water, we moved on.

During the day, I applied near-constant specific praise to Alice: good using words, good big voice, good following directions, and so on. Lots of high-fives and fist bumps. Lots of hugs. I let her pick where we went and what we looked at. I gave her a fair amount of leeway while still setting appropriate bounds.

I don't know your child, but you do. With that knowledge, planning, consideration and understanding you can have a successful trip.

Comments (4) Trackbacks (0)
  1. Sounds like a great day, Steve! And wonderful advise for all parents planning a trip or outing with their children!! Love your pictures!!

  2. This is good advice for traveling with any children. I’m still working on the patience and kindness. Thank you for sharing

  3. Way to go Steve and the amazing Alice!!!


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