Plinth Blog Special Needs Parenting

9Aug/194

Every Tool’s A Hammer – A Review Through A Cosplay Project

I've not written many book reviews, but I felt it appropriate to write a book review for Adam Savage's recent work, Every Tool's A Hammer: Life Is What You Make It. Savage is a prop maker, special effects tech, co-host of Mythbusters, and general advocate for science education and making. I could go on, but his curriculum vitae is long. I felt it appropriate to write this review in the form of a project how-to.

A year ago, I took my daughter to ConnectiCon to cosplay. We went as Captain America and Peggy Carter. This was our second time going to a convention in cosplay.

 

Being short on time, I opted not to make the costumes, but instead was happy to make the shield. It started from a plastic sled. We had a great deal of fun and when we were there, we saw this Captain America Cosplay:

 

I loved how he set Captain America in another time period and this stuck with me and I thought it would be cool to set Captain America in the Colonial era. I have a number of challenges in my life, not the least is that I'm super busy and play time/making time is a precious rarity compared with other things. Adam addresses this in a chapter about how he uses a particular list technique for doing this. Super useful. Not as much for me though, as I'm fairly good at compartmentalizing projects and remembering the compartment contents on demand. It does, however, serve another goal: to show you visually that you are making progress. This is something I really love for huge projects that seem intractable. For example, in the early 90's I made an implementation of Java interop for VRML: Virtual Reality Markup Language. It was a huge spec. I filled a huge whiteboard with the names of each Java class  with check boxes and checked them off as I completed them. My manager also used my white board instead of interrupting me for status updates.

Back to the project. My next step was to get patterns. I saw some patterns on a vacation to Colonial Williamsburg and picked up a few that were in the right sizes and used the power of the internet to find the vendors of the patterns in order to buy the appropriate size. At this point in the project, Adam would have you draw pictures of what you wanted and how it should look. I agree with that in that it is easier to communicate it to others, which is vital if you're working on a team. It's also good if you can't picture it on your own and need to get a visual. It's also important for projects that take a long time to have your plans done on their own so that you can come back up to speed after a few weeks of being away. I didn't draw pictures. Instead, for the waist coat, I needed to modify the pattern, so I needed to see how it would really look. Since time is a premium, I photographed the pattern. Made it square and page-sized in PhotoShop, then printed it out. I now have a scaled version of the pattern. It is far quicker to cut out something small in paper than it is full size. I taped the pieces together and sketched out how I wanted the waistcoat to look in 3D on the scale model. I took apart the model and measured my markings, then scaled everything up for pieces. This was exciting and I wanted to do more and more, but time doesn't allow that. Adam talks about his inclination to do things as fast as he can. Part of it is because he's enjoying it so much and part of it is because he gets a kick from completing stuff. It's a great motivator, but it also is a kick in the teeth when things go awry because of going to fast. More on that later.

I took the pattern's estimates for fabric and worked in estimates for the unique pieces. I wrote all of this down in a notebook to keep with me for fabric shopping. This is where I love lists. I make a list of each fabric with color/pattern, weight, material and quantity for different bolt sizes. I went to my favorite fabric store, Osgoods, which has wonderful staff and really nice quality fabrics. Although it was not period, I bought a fairly heavy weight cotton duck for all the outer facing fabric. For linings, I chose linen. While I could've used cheaper fabrics not even close to the period, I wanted some level of detail and accuracy. For this, I'm not as detail-oriented as Adam is, but I get it. He likes to immerse himself in the project and the details matter, because even if nobody notices, you know. I draw a line as to how much I want to sweat the small stuff and a cleave to that fairly closely. I noted that each of the patterns included sections for contemporary construction as well as period construction. For example, for the shirt, the pattern described how to do period construction, you pull a thread out of the weave across the fabric to make the cutting line and included all the hand stitches. I did very little hand stitching, although linings needed to be stitched in by hand, something I could do while streaming a show on TV. In picking out cotton and linen, I had a lucky benefit. At the convention, there was a photo shoot for Marvel cosplayers, so Alice and I went. The temperature outside was in the upper 80's and I was wearing a heavy 3 piece suit, as was my daughter. Oddly enough, I was not getting overheated. In fact, I was hardly sweating! All the fabric breathed very well. I've worn suits with synthetic fibers under similar condition and sweated buckets. This was a welcome surprise benefit.

After buying the fabric, I ordered up some buttons online. I did this because buttons bought from a craft store or other chain fabric stores are brutally expensive and Osgood's doesn't carry much in the way of notions (but boy do they have fabric). I was going to need a lot of buttons. I think it came out to a couple dozen of each. I'm super happy with the buttons that I got.

Doesn't that just scream 'Captain America'? They're noticeable only if you look closely. It was a detail I wanted to offer to people who were taking the time to scrutinize the costume in order to delight the delightful.

I made the breeches first. They were the nearly the least complicated of the patterns. There were some tricky bits - these are fall-front breeches and the instructions weren't the best. They came out pretty well and I find the cut particularly charming. Unlike modern cuts, when you're standing up, there is a lot of room in the seat. It's pretty baggy, but all of this goes away when you bend over. This is because the colonial people didn't have stretchy fabric and because when you bend over with this cut, it doesn't yank down on the waistband, so that means that your pants don't drop from repeated bending and standing. These were breeches for a working person.

 

Then I made a linen shirt. This was the easiest pattern since all the pieces were either rectangular or triangular. It came out really well, but it has some problems, which I will talk about later.

 

For the waistcoat, I made split the pattern for a top portion in blue and a bottom portion in white. I cut red stripes and top stitched them down to the white, then stitched the blue on top. I trimmed the red to match the white bottom and then stitched in the lining. Throughout all of this, I did a lot of ironing. I really wanted the seams to be straight. Then I worked on the star. This is a point that I had been dreading because (1) this is new and hard (2) I have no quilting experience. I made the star out of 5 kites. I used Illustrator to draw them out in various sizes then picked the one that looked best to use as a pattern. I was worried about fraying, but I bought plenty of white, so I planned to fail. Failure for these projects doesn't have to be abject failure. Setbacks should be expected. Adam understands that screwing something up is an awful bugbear for him and after the swearing subsides, he tries  to learn from his mistakes and do it better next time. This is also where inevitable setbacks meets his desire to go fast. I liked how honest he was about the emotionality of setbacks. I made 5 stars in total and used 2. I tried backing the pieces with interfacing, but that made them hard to work with and  much harder to get flat and even. I screwed up another one and threw it out. The last two worked. I sewed one on the upper half and trimmed it to the edge. I estimated out the waistcoat would button and sewed the other onto the lower side. I ended up using zig zag stitches as the points to contain/hide the fraying. That worked pretty well. I was very happy with this level of setback planned in. I then did the lining in linen and finished it up.

 

The jacket was next and it was extremely straight forward after doing the rest. I did most of the jacket in blue, but used white for the cuffs and collar. When I modeled it, my wife commented on what a good cut the jacket was. I say I have to agree.

 

 

Why do I sew? It started in first grade. We had an art project where the art teacher taught us to do simple embroidery using heavy burlap squares, yarn and blunt needles. We learned chain stitch and filler stitch. I taught myself to sew on patches by hand. All of it was making and I enjoyed it so much as a kid. For example, I was looking at the geometry of a softball and wondering how the shapes fit together, so I best guessed them and cut them out of some olive felt and stitched them together with red thread. When I was done, I had a ball and it worked. I think I was in 2nd grade when I did this. Three years later, in 5th grade, the math book had a section in the back about geometry. Our math class was largely self-paced and some students finished the math book. Some didn't get to the geometry. When I got to the section on geometry, there were projects to make various platonic solids out of construction paper. I learned out to make tetrahedrons, cubes, and dodecahedrons from a single flat sheet of paper. It involved drawing out the pattern (using a protractor and ruler), cutting and gluing them together. I can't tell you how much I loved this. It was like putting together a Revell or Monogram plastic model when I was a kid. This is where Adam's tendency to rush and mine are very different. I usually start slowly and then speed up. For building models as a kid, when I sped up, it usually meant that I was going to botch the paint job at the end because I was going so fast. For me when the reality of the project and image I have in my head start to coincide, it's an accelerant. It like a jigsaw puzzle with fewer and fewer pieces to put in.

Regarding model making, I would take the piece of cardboard from the bottom of a writing pad and use that to make my own models. I made a tank, space ships, etc all out of cardboard that I cut out with scissors. I learned to put tabs onto pieces for glue and learned how to see a 3D shape and turn it into 2D paper parts. When I was in my first job out of college, I was working at Adobe on PostScript printers. I wrote a PostScript program that printed out a kit to make an icosahedron. It included tabs and slots for assembling it without glue. Adam talks a lot about building things in cardboard to visualize. I agree whole-heartedly.

Back to sewing - in 6th grade, my art teacher had us make soft sculpture gnomes with hand-embroidered faces. While the faces were hand-embroidered, the rest of it was machine sewn. I remembered that and as an adult, I bought a sewing machine and made some shirts and vests. I also tried to make a hot air balloon, but that ended up not flying. I did make several kites that worked quite well. At the time that I started sewing as an adult, I had been doing woodworking for several years. I found something out in the process of doing both: the people who claim there is a difference in male and female thinking are full of shit. Both woodworking and sewing clothing use exactly the same part of my brain. They are equivalent. If your daughter wants to do woodworking, teach her woodworking. If your son wants to sew, teach him to sew. They're both making. They both have visualization challenges. They both have their own particular vocabulary. And this touches on one of the central reasons behind Adam's book: to encourage people to create and to find ways to remove barriers from people making things.

Back to the shirt. I had made the shirt and tried it on. It is cut like an Ebenezer Scrooge night shirt. I get that - again practical - it serves as a shirt and sleep wear if you want. I just figured it would work out. The problem happened in getting dressed for the con. The cut of the shirt really wasn't working with everything else. It was too baggy and really wasn't working. I think it needs to be shorter and trimmer to work. Also, while putting it on, I popped a button off a cuff. And this is another aspect of setbacks that's worthy of considering: what do you do when things go wrong? Using 20/20 hindsight, I could have spent more time fitting the costume and making adjustments. In the moment I didn't just have the shirt problem. I had lost a fair amount of weight and had gone from a 36 waist to a 34. The breeches no longer fit me. They have laces to tighten or loosen them in the back, but that wasn't enough. I ended up removing all the buttons on the center line and moving them to snug up the waist. This used all my last minute time and I decided to opt for a dress shirt instead of the period shirt since it works and is not especially noticeable in the finished outfit. As it turned out, I still needed a visit from the Cosplay Fairy (this was a guy walking around with all kinds of sewing tools to help people out) for some safety pins to tighten up the waist on the breeches some more. The point here is that if/when things go wrong, use the same creativity that got you here to figure out if/how you can work with what you have. The first several times something like this happens, it's maddening, but as you make more things, you learn how to avoid the more egregious setbacks and how to handle the others in the moment. Adam also talks about that when he discusses a set project that he didn't plan well enough that he did early in his career.

Another example for me is a project I've been working on for close to 16 years now. I had an idea for a digital clock that used a single LED for each second/minute/hour and would be able to mechanically strike chimes on the hour. I kept getting stuck and put the project away. Four years ago, a number of things happened to make this project easier, including components from SparkFun and Adafruit, so I was able to pick it back up and I had a working prototype on breadboards running on an SparkFun Red Board (an Arduino, essentially). Still not done, I wanted the finished clock to be on proper circuit boards since breadboards get flaky over time. I made up a schematic and sent that off to get fabbed. I made all kinds of mistakes in the process that I didn't see in the design. When the boards came in, I did some checks and found a few. There are sets of majors functionality on the board: power, neopixel interfacing, real time clock interfacing, and solenoid drivers. I was able to bring the board on line section by section. The errors affected everything except power. I fixed the neopixels and the RTC using an X-Acto knife and bodge wires. I put off fixing the solenoid drivers because the traces that were affected were closer together and my circuit bodge skills aren't good enough. I realized that I was afraid of screwing it up. I have years invested in this project. When I realized that, I just sat down and did it. Sure enough, I screwed it up. This time, I had some clarity: I have been tinkering with this on and off for years. Getting new circuit boards made is a little money hit and a little time hit, but both of those are a drop in the bucket compared to the length of this project already. And this is the same with the cosplay project. Yes, there are little errors here and there which I see when I scrutinize the project, but in the greater context it's fantastic. and I'm happy about that.

This is me and my daughter at ConnectiCon in our finished costumes (yes, I made hers too).

The goal of Adam's book is this: think of the major barriers to doing a project:

  • I don't know how
  • I don't manage time
  • I don't organize
  • I don't visualize
  • I make mistakes

He shows how these don't have to be barriers and that there are ways to adjust your process to get knock down these barriers. This is a big lesson.

The next big lesson is managing emotional conflicts. He doesn't draw this together like this, but the pieces are there. Making things is an emotional process. There are a number of aspects that are in play: excitement, perfectionism, perseveration. In proper balance, all of these are good things. Out of balance they get in your way. Excitement leads to going too fast. Perfectionism leads to magnifying mistakes to the point of hatred. Perseveration leads to not letting things go. When you have all of these running together, you've got a recipe for disaster. Again, Adam shows how to work well with these things instead of being dominated by them. And when they cause setbacks, you can look at the problems and figure out how to recover and improve. This may include redoing a project entirely and that's OK.

If you are an aspiring maker looking for inspiration or if you are a consummate maker looking for ways to get better, this is a fine book. It is peppered with anecdotes are relateable, awe-inspiring, and/or hilarious. The writing is engaging and has some real gems in terms of word choice that sparkle rather than detract from the overall. If you've heard Adam speak, you will also hear it reading the book: his voice comes through.

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16Jul/194

Having a Child with Down Syndrome, Part CXXXIX: ConnectiCon

Last year, Alice and I went to ConnectiCon for a day, which worked out pretty well. This year, we decided to try an overnight. The day before, I talked to her about expectations what we were going to do. Alice lit up when I mentioned a hotel, because she loves hotels and thinks it's the lap of luxury to lie in bed and watch a hotel TV. I made it clear that hotel was for sleeping. On the drive down, I repeated the expectations and we arrived with perfect timing to check in, drop off our bags and catch a shuttle to the convention center right before opening.

This year we again went as Captain America and Peggy Carter, but as a version cast in the 18th century: Colonial America and Red Coat Peggy Carter. In the late summer of last year, I started seeking out clothing patterns for this. We had taken a vacation in Colonial Williamsburg and I found a men's pattern that I could make work and online I found a pattern for a women's riding outfit that could get cast into a red coat uniform quite well. I took me the better part of the year to make everything, picking up some sewing time here and there.

When we got there, our first stop was a photo booth set up by Eric Dinnen. He did great work with us last year and I was happy to work with him again, but I wanted to do it early while we still were fresh.

He took a few pictures of Alice, then of us together and then just me. I can't wait to see the proofs.

We looked at people in costume and went to a session about cosplay materials before walking the dealer room for a bit. Alice was pretty good about asking people permission, although from time to time she'd forget to tell me and start wandering off towards someone, so we had to practice that a bit.

What do you do when you see more Captain Americas? You get them to pose with you, that's what!

Lots of people stopped us for photographs. This one was taken by Christopher Robin Wetherell, posted with his permission.

There was a scheduled photo shoot for Marvel characters, so we did that. This is first time we participated in this kind of shoot and it went pretty well, although it was super hot outside. One thing that I found surprising was that I was not particularly sweaty, considering the heat. When I made the suit, I lined the jacket and breeches with linen and backed the vest with linen and the blue material is cotton duck. It's all very heavy, but it breathed extremely well.

One nice thing that I enjoyed is that I recognized people from the previous year and they recognized us.

The woman in the turquoise suit and the man in the doughboy uniform were familiar from the previous year.

We saw two other Peggy Carters while we were there and this one came to the shoot. Of the Marvel characters, the most represented was Spiderman, for sure.

At one point, the woman who is front and center asked for a Captain America shield for the photo. Of course I obliged.

After the shoot, Alice and I went inside and got some water and took a break for a while. We walked around a little more, but Alice was getting kind of tired and started acting out a bit.

We took the shuttle back to the hotel. I brought some street clothes for us so we changed and Alice removed her make up before heading out to dinner. The next day, we got into different costumes, checked out, stowed our bags in the car and then headed back to the convention center.

On Sunday, we went as characters from Star Trek. I had convinced E to knit a sweater to match a jacket from Star Trek: Nemesis. Since it was knit and zipper front, we dubbed it a Picardigan. I also sewed a skant for Alice. In the mid 90's I bought some Star Trek toys that were decent enough props for us to use. So we were all set.

The day was shorter than the previous, but that's OK. Over all, Alice did a great job. On the dealer floor we ran into this group of people doing Spiderverse:

They were so good - I especially liked Spider Ham. After thanking them, I turned to Olivia Octavia and said, "Oh, great. It's Liv", which made her crack up. We went to the Cosplay Chess session - a goofy live chess match with cosplay characters and lots of bad jokes. Alice loved it. When she realized that the convention was coming to an end, she was madly trying to get me to take pictures of her with other cosplayers, which is just fine as long as she was polite.

I like ConnectiCon a lot. For one, it's not too, too crowded. But what I really like is that the event encourages diversity. There were restrooms that were clearly marked as all gender; disability services were front and center; the presenters in the sessions that we went to were careful with pronouns and to adapt as needed. Alice and I were treated uniformly well. I'm sure there were issues - any event this size is going to have them - but we didn't see problems ourselves. Alice was uniformly treated well by the staff and other attendees and that's a great thing. We both had a lot of fun and the overnight experiment was a success. It was also nice to be out of reach of current politics, although I did have several people ask me about the colonial airport wars (I usually replied that it was a tough battle at the Starbucks in terminal C).

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2Jun/190

Having a Child with Down Syndrome, Part CXXXVIII: Ikea

Alice's dresser has seen better days. The design wasn't particularly good and we've fixed several drawers, replaced knobs, repaired slides and so on, but it was at the end of it's useful life. E had put together a shopping list and was intending to mail order them, but since it was one of those "we don't have anything planned days" where Alice will get stir crazy at home, I took her to Ikea to go in search of those things. This was a decision with a certain amount of risk because while we had a list of things to find, Ikea is a big store and I knew going in that there had to be some wiggle room for shenanigans. Also, Alice knows full well that Ikea has a cafeteria and would be angling for food constantly unless I put the kibosh on that hard.

Let the shenanigans begin. Because I'm crafty, I planned that we would do this in two passes. On the first pass, we'd find and buy the heavy stuff and load it, then have lunch and get the lighter stuff. That worked pretty well. After we loaded the heavy stuff, Alice insisted on heading up through the maze. I was able to show her the secret door to get right to the cafeteria instead of having to wind through the whole store again.

Fortunately, Alice had no problem getting a salad since most of the rest of the food had gluten in it. It didn't stop her from angling for fries, but they're cooked in the same fryer as things with gluten and that affects her. We got the rest of our needs and headed home with a constructive day out in the bag. This is notable because Alice is most certainly a teenager and has had quite a set of super cranky days recently.

I should interject at this point that and bring up the myth of Cassandra. Cassandra was cursed to utter prophesies that were true but no one would ever believe them. I believe that this myth was created by a parent of a teenager. When Alice's behavior starts to go off kilter, I'll offer her a choice to correct with distasteful consequences if does not. Recently, she's been denying that the consequences will/can happen, yet they do every single time. I point out how the consequences happened last time and maybe she doesn't want them to happen again. Yet somehow my prophesies come true. Weird, huh?

The pieces that we bought were in the Askvoll line:

Which is a very unfortunate name if your articulation isn't that clear, like in Down syndrome. I tried to get her to put a lot of emphasis on the 'k' and not say it too loud in the store.

The surprising part was that Alice wanted to participate in putting them together. She was happy to put in dowel pins and sort out hardware.

She also liked hammering in the plastic pins.

And yes, she's got a grip that's choked up pretty high on that hammer. That's not important here. The important part was that she was quite happy to help constructively in nearly every step of the process, which is a very nice change from the usual adolescent crankiness.

Side note: why is your hammer pink? For starters, it's not my hammer; it belongs to my spouse. Second, she used to work in a manufacturing facility and needed tools to work on molds or machinery and in that environment, tools get ruined and lost, so she decided to make it perfectly clear that these tools were hers, so she painted the tools and the toolbox Barbie pink, and I think that's awesome.

 

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25Mar/191

How To Make a Captain Marvel Cake

My daughter turned 16 this past week and we planned a party at the movie theater with friends to go watch Captain Marvel. I decided to make Captain Marvel cakes for the party. We were expecting enough people to need more than one. In the words of Carl Sagan in Contact, "why make one when you can make two for twice the price?" This was also my first foray into using fondant, so I'll pass on what I learned.

Here is what you'll need:

Software:

  • 2 - 8 inch round cakes
  • 1 recipe of frosting for an 8 inch cake
  • 1 package each red and blue fondant and EITHER 1 package yellow OR 1 package white fondant and edible gold spray
  • Corn starch or confectioners sugar
  • Clamps or weights.

Hardware:

  • Parchment paper
  • Clamps or weights to hold it down
  • Rolling pin
  • Sharp paring knife
  • Ruler
  • 8 inch round cake pan
  • Piping bag and tips
  • Pencil
  • Scissors

First, make stencils. I traced the bottom of the round pan onto parchment and cut out a circle. Very carefully, fold it into eighths. Cut out a 3/8 pie wedge from the paper. Flatten and smooth both pieces. The 3/8 portion is for blue, the 5/8 for red. For the star, I looked at a movie picture and made a 4 pointed star using the ruler and then added 4 small points to it, then cut it out.

I read that fondant can be pretty sticky and it was recommended that you use a dusting of corn starch or confectioners sugar. I wanted to avoid the mess, so I put parchment down on my counter. I used clamps to hold the paper down. You could probably use weights, but I can't imagine that would work as well. Tape doesn't stick so well to parchment, so probably don't bother with this.

To work with fondant, I found that out of the package it was stiff, but softened up with hand kneading. Some references I read suggested using a rolling pin with spacers on the ends to help roll it out evenly. I just used my old reliable tapered pin and eye-balled the thickness. Roll out the red to about 1/8" thick and cut out 5/8 of a circle using the paring knife. I flipped it over (the bottom will be smoother) and set it aside. I repeated the process with the blue and the 3/8 circle. Place the red and blue together and adjust to make a clean circle.

Repeat the process again for the star. For the stripes, I rolled the fondant by hand into a long snake and then flattened it into a wide strip using the rolling pin. Using the ruler as a guide, I cut it into long narrow strips using a pizza wheel.

Before spraying with gold, I covered up the red and blue pieces with paper towel so they wouldn't get hit with over spray. Wilton is really stingy with the amount of gold per can, so be careful not to waste it.

At this point, put the two layers together and put a crumb coat of frosting on the cake. Put the red and blue pieces on the cake. With frosting in a piping bag and a fine tip, pipe a bead on either side of the seam of the red and blue sections (you can also apply the frosting with the thin handle of a teaspoon). I mitered the strips where they join, but that gets hidden by the star so as long as they pieces don't overlap, it doesn't really matter. Lay the strips over the seam and trim at the edge of the cake. I used scissors to trim. Finally lay down a bead of frosting where the star goes and place that. Note that the gold spray flakes if you handle the fondant too much, so try to be careful.

I this point, I finished the side of the cake and piped a bead around the top to hide the edge of the fondant.

Here's my daughter - she was very happy to see the final cakes.

Higher, further, faster!

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10Dec/180

Nutcracker Roundup

This is the second year now that Alice and I have done the Party Scene in the Nutcracker, put on by Pioneer Valley Ballet. It is a commitment that begins in October with weekly rehearsals and finishes up in early December, after a whirlwind week of dress rehearsals and 6 performances.

Last year, Alice was a party adult and did all the dances except for one. This year she did them all. What was surprising to me was how much she remembered from the previous year. The choreography came back to her faster than to some of the adults. As a teenage young woman, Alice and I butt heads constantly. This is typical and expected. The Nutcracker has been an oasis of something that she and I can enjoy together.

Dance and performance in general are things that Alice absolutely loves. Me? I'm an introvert, but I'm the kind of introvert that loves performance. I'm hardly a good dancer, but this is worth it to me.

To manage the performances, Alice and I follow a pretty decent schedule. We arrive at the call time, get our make up done, get our costumes on, and I put Alice's hairpiece on. We do our performance, then change back into street clothes, take off our make up and get the heck out of the theater for the hour and a half until the second show. It's nice to take a walk and go into stores with interesting things to look at so that Alice has a constructive focus. After the second show on Friday, Alice and I go out to a celebratory dinner. On Saturday, between show, we go to Herrell's and get some ice cream. On Sunday, we do our best to cope.

Before each show, we go up on stage a little bit early to unwind and take some selfies.

When we're done with the second show, we go down into the basement of the theater and do a unison fist pump saying, "Nailed it!" before cleaning to leave.

This year, Alice was more independent and definitely more mature. In the last show, she lost her hair piece and we discreetly left the stage and had Mary Anne, one of the directors quickly reattach it in the dark (I was without my glasses, so doing it myself was near impossible). It only took a little bit of consoling to assure Alice that, yes, we were going to go back on stage to do the turkey dance (the last dance in the party scene). Last year, I think she would have lost it and it wouldn't have happened. This year, she was much more flexible.

Beyond the performances and the growth in Alice, one of the things that I very much enjoy is the community of the people involved in the ballet company. Tom and Mary Anne, the directors, were incredibly patient and supportive of Alice. There are so many people in the show who know Alice and are genuinely happy to see her. When we go one stage, she gets compliments for how wonderful she looks. When she gets off stage, she gets compliments for how well she danced. She feels welcome and loved and accepted. Like I said: a member of the community. And I'm happy to share this with her as long as she wants to participate.

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27Nov/181

Having a Child with Down Syndrome, Part CXXXVII: Patience? What Patience?

On Sunday, I took Alice skating. She seemed interested and I like a good excuse to get her away from the TV.

Since she can't manage skates, we borrow a sled hockey sled from the rink. Hauling her out on the ice is a bit harrowing since the transition is tricky. I'm on the ice, skating backwards, hauling 130 pounds from a high friction surface to a low friction surface.

A woman seeing us remarked, "I wish I could have one of those!" I replied, "well, the price is pretty high" "Oh? How much?" "You have to have a stroke at birth." And then we skated off.

After a couple laps, I made a point of apologizing for being snippy. Some days I just don't have the patience.

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19Nov/181

Having a Child with Down Syndrome, Part CXXXVI: Breaking Patterns

Alice is absolutely a teenager. She wants more independence, intentionally ignores us, has yelling fits, and so on. Exactly what you would expect from many teens. The pattern is trying because her judgement about many things is just awful and a parent has to step in. It's trying for her. It's trying for us. I've been looking for ways to break patterns and see what happens.

We were putting together a shopping list today for a trip to Costco and rather than cue her on spelling, for one item, I said, "don't you have some in the fridge? Why don't you get that and copy it?" So she got up and grabbed one and transcribed it. I had to go get something from the basement and when I came back up she said, "Dad, dad-Pop Corners! And pointed to her list. She had noted that we were running low on Pop Corners (a gluten free snack she likes) and had copied it from the package without me there. We didn't really need more right then, but this was harmless so I praised her for thinking ahead and went with it.

In Costco, we made good on the list in short order, but it was getting to be a struggle because Costco has lots of snack items out on demo and Alice would eat them all given even half a chance. I instead to break that pattern and pointed out how quickly we were going through the list saying "Alice, we are KILLING IT!" which she loved and repeated with all her Alice exuberance. Other shoppers turned heads. So what? We were killing it.

Alice is really liking her high school program and there is an activity group called best buddies that she likes to do things with. They're doing an event called 'Friendsgiving' so Alice and I made a gluten-free cranberry ginger bread sticky cake to send in. I talked to her about it earlier in the day to ensure that's what she wanted and we made it together. She put ingredients into pans, stirred some things on the stove and did a lot of reading of the instructions. It should be delicious.

KILLED IT.

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26Aug/181

Having a Child with Down Syndrome, Part CXXXV: Literacy and Love Notes

One of the things that I enjoy about Alice is that she writes me notes when she's emotional. Putting your feelings into words is a great way to temper your emotions and to communicate them to someone else. Alice does this without prompting. I put them some of them aside to save for later.

Here are a couple of examples.

The words are "Dear daddy [unknown] now cook food by Alice". She wrote this on a day that we had cooked together and she enjoyed that and (I assume) wanted to ensure that we were going to do that more. Yay!

Not everything is positive like that, but I can still see the bright side of the situation.

It says, "Daddy by[e] no TV yes TV Alice"

This happened at a point when we were on vacation and Alice wanted to spend time in the hotel just watching little kid stuff on TV, hogging it from everyone else. I imposed appropriate sharing protocols and she was not happy with that and wrote me a note.

Circumstances notwithstanding, this is a fantastic implementation of literacy. Alice felt so strongly that she decided to take the time and effort to write me a note. This is the power of literacy at work and trust me when I say that I like this far better than what Alice has been doing recently, which is yelling at me to make sure I understand how she feels.

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12Aug/183

Having a Child with Down Syndrome, Part CXXXIV: I Think We Have This Down Pat

Alice and I went to Boston Comic Con today. This is our second con this year and the 4th in 2 years. Boston is about as far as I'd like to travel for an event without overnighting.

We had a professional photo done with Evangeline Lilly, who was a good sport and agreed to hold my shield for this shot.

We followed our usual pattern: reinforce expectations and go over the schedule to pick things to do and to see and then follow that plan, leaving room to be flexible as the day progressed.

We saw Brent Spiner again, who was still terrific and I thanked him for being so kind to Alice previously.

We also went to meet with Cary Elwes and got a picture taken with him. He was so incredibly kind and patient with Alice.

He was holding Alice's hands and called her an angel. Without missing a beat, Alice said, "You're hired!" Mr. Elwes busted up laughing and came out to give Alice a hug and tell her that she just made his day. I'm going to keep what he did for Alice after between us, but I will add that he is also incredibly generous. What a sweetheart!

One of the nice things about being a frequenter is that now we're starting to see people that we've seen before. I recognized at least 3 people and we'd seen before and we were recognized once.

We ran into Ask Kaylee Frye, who I'd seen on social media. I was so happy to meet her!

We also saw Lucky Grim (no picture), who last summer we saw running a panel on cosplay and on makeup. We thanked her for the encouragement.

Again, it was fun to see other takes on the Captain America universe.

Alice and I got stopped a few times for pictures. I had a few little kids come up to me, which was nice. Lots of fist bumps. I let a couple try to hold my shield.

Alice picked people that she wanted to take pictures with and nearly all were accommodating. By around 3:00, it was clear that she was flagging a bit, which was frustrating, because I really wanted to look around. We negotiated to another tour around the perimeter before calling it quits.

Once again, we spent part of the drive home cutting each other up, which was a nice end to the day.

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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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