Plinth Blog Special Needs Parenting

15Jul/185

Having a Child with Down Syndrome, Part CXXXIII: More ComicCon

Alice and I have gone to two comic cons together last year. Today we went to another, this time ConnectiCon in Hartford. This was nice because the drive wasn't too long. Alice and I decided that we were going to go as Captain America and Peggy Carter. Alice loves dressing up and so do I. Last time we were both Harley Quinn. This time, I decided to commit more to the CosPlay and colored my hair and got colored lenses to match Chris Evans better.

In the process, I discovered that one skill I don't have is putting in contact lenses. Fortunately, E helped out and put them in for me. She also did a great job on Alice's makeup and hair.

Like before, the trip involved a certain amount of preparation. We talked about how to ask people for pictures, how to handle when someone asks you for a picture, etc. When Alice goes somewhere, she likes to make it all about food, so we had discussions about that and that (it's about comics and costumes) and that we were going to do a lot of walking.

In getting ready, Alice burst one of the seams in her skirt--a minor crisis--but while E put on her makeup, I made a quick run to the sewing machine and patched it up. One thing different this time around was that in the past, I've worn a backpack. This time Alice wore a purse and we put snacks, seltzer, and a few other things in there for her to carry.

 

We headed out and we talked over all those points again. We got there a little early. The parking was easy and the line to get in wasn't too long.

From there, everything was pretty smooth. We attended some sessions, walked floor, and took a lot of pictures.

I loved this costume - the details aren't visible from here, but her costume was a Tard-IT, a mashup between a Tardis and It. Nice.

There were a lot of people in costume, which was nice. We also saw a number of different takes on Captain America and the Captain America universe, so of course we took pictures.

I don't know about this Loki dude, though. He seemed kind of shifty.

There were also some really funny things that happened. Alice liked a Deadpool statue that we saw and decided to pose just like it. Why? I don't know. Still funny.

It was nice getting compliments on our costumes and the people wanted to take a picture of Alice. There was one woman, for example, who said that she "collected Peggy Carters" and wanted to get a picture of Alice.

Once again, it was a terrific day. I tried to make sure that Alice had a fair amount of agency in making decisions for what we were going to do. At the end of a very long day, Alice was flagging and I suggested that we go home. "No! No dad!" At this point, I could have asserted, but instead I turned it around and asked her what she wanted to do at this point. She said she wanted to look at more people in costumes, so that's what we did and then she suggested going home.

We had a nice trip home cutting up over songs on the radio.

And because things like this don't happen in isolation, I want to thank people who helped me decide to pursue this with Alice:

CosplayParents - this is a wonderful couple who do fantastic cosplay. I love their work. Follow their twitter account - it's worth it.

Adam Savage - always an inspiration for making things and cosplays that are huge in scale.

A woman at Boston Comic Con last year who ran a panel on inclusive cosplay - she said simply, "if you have a pulse, you can cosplay"

Chris Evans - thanks for creating a character that's fun to do. One of my favorite things about being this character is to call men "son" and to call other Captains America "cap".

And of course, E who has been incredibly supportive of this.

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5Jul/180

Having a Child with Down Syndrome, Part CXXXII: Cooking and Stroke Rehabilitation

For the past 7 years or so, we've enrolled Alice in a camp that is dedicated to helping kids who have had strokes and other similar brain injuries by putting their "better" arm into a cast and then providing intensive physical and occupational therapies. The camp lasts 3 weeks and Alice loves it.

The camp is called LARC (Lefty and Righty Camp), but Alice calls it "elbow camp" which is fine. The camp is 100 miles away from us, so E and I make arrangements every year for how we handle going back and forth. I try to reinforce some of the things that she does at home by encouraging two handed activities and giving Alice gentle nudges to work both hands.

Here is Alice stripping some collard greens that we put into soup. Her right hand was perfect at holding onto the stem while she pulled the leafy bits off.

This morning, Alice and I made cheesecake using Alton Brown's recipe. We started by breaking up gluten free graham crackers before putting them into a food processor. She was using her weaker hand to stabilize the sour cream tub when scooped it out. This particular measuring cup was perfect for some hand-over-hand work. It's made for viscous ingredients. Alice held the transparent part with her good hand, and I helped her push the yellow part with her weaker hand. Nice. I also helped her hand-over-hand to gently agitate the pan to get bubbles out of the batter. And of course, there is a reward waiting for you at the end.

Our farm share provided us with a pint of sour cherries, and I had some sweet cherries and cherry jam so I made a simple cherry coulis to put over the top.

It's certainly not easy to do this. Alice has been very willful in the past few months and that makes it even more challenging to work with her constructively. Still, today's cooking experience was pretty good as far as working with her goes.

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