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.

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.

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.

Having a Child with Down Syndrome, Part CXXXI: Oh, She’s a Teen

There’s no doubt that Alice is 15. Yes, there are a number of her behaviors that are not age appropriate, but there are a lot that are. For example, she will ask permission for something and then if she doesn’t like the answer tries to go ahead with what she wanted anyway. And then she’ll dig in her heels and still try. Again. And Again. Sometimes all it takes is a little bit of, “Remember Alice, it’s a school day so you don’t get TV, right?” “Oh yeah, daddy! You right. You Right!” Sometimes it’s not so simple.

Recently, Alice has been taking to demanding attention close to bedtime. It’s been frustrating because she’s been ultra persistent. I’ve taken to candy coating my response and being firm about it.

“Daddy – there’s a fly in my room.”

“Is it bigger than you?”


“Then don’t worry about it. Good night! I love you.”

“But daddy there’s a-”

“Good night! I love you.”

“But daddy I can’t go to sleep. There’s a-”

“Good night! I love you.”


“Good night! I love you.”

“Stop saying that!”

“Good night! I love you.”


Having a Child with Down Syndrome, Part CXXX: Birthdays

We have three birthdays pretty close to each other here, Alice and Evie especially close. For Stuart and Alice, we try to let them have completely separate “friend” parties. In other words, Stuart has his party with his friends and Alice is nowhere to be found and vice versa. We also try to have a bigger party for one and a lesser party for the other and alternate years. Stuart, I think gets this. I don’t think Alice does, but from her point of view, it’s still a party. This year was Alice’s small party and we asked her to pick 3 friends for a trip to Herell’s for ice cream.

She picked three friends and two were able to make it for the party: Luna and Jaq, and Alice was super happy that they both could make it. It was busy downtown with the March for Our lives protests, but that’s a very small price to pay for living in a liberal, politically active area.

Luna was very happy to be there and had a special present for Alice, which was a friendship necklace. Alice got one half of the necklace and Luna had the other. Luna was so excited and sneaky – she had her necklace hidden under her bandana and so badly wanted to show it, but waited for Alice to open her present first.

It was very sweet and I was very close to crying.

I’m glad that Alice picked these friends. It was nice that they came out for her.

Earlier in the day we did the shopping and because today was E’s birthday, we went to pick out a birthday card for her. For times like this, I try to give Alice a pretty free rein. I pointed her at the ‘Birthday for Mom’ section and set her loose. She looked over a half dozen or so before settling on one. I had to encourage her to read all the words to make sure that the card was really what she wanted, and then we were all set.

All in all, while it was a very busy day, I think everything worked out very well.

The Lion and the Beast

There’s a local organization called Whole Children that Alice is involved with. It’s an organization that provides enrichment programs that are geared with children/young adults with disabilities. Every year they do one program to put on a play, which is usually a mashup between two or more other stories. This year, it was the Lion and the Beast. Alice was cast as Babette, the feather duster. Alice had a great time and nailed all her lines.

And every play every year ends with a dance party, because why not?

Having a Child with Down Syndrome, Part CXXIX: Lab Work

Alice has Grave’s disease which messes with her thyroid. To check to see if the medication she’s taking is working, she needs periodic blood tests. Alice doesn’t like blood tests and I had to take her. When she got home from school, I immediately ushered her into my car and headed to the hospital and explained what was going on. Alice said, “I’m afraid of needles.” I praised her for using her words and told her that she could tell the nurse that too. I also promised her that if she was brave and did a good job we would go to the comic book store and she could pick out a comic book at the local comic book store, Modern Myths. I don’t like food as a reward, so a visit to a comic book store seemed like a good alternative.

We got there and checked in. Alice told the nurse she was afraid of needles and the nurse let her know that she would use the smallest needle that she had. That was nice. I was going to ask her to use a butterfly needle, but she was already on it. Nice. She came back with another nurse to help.


This smile didn’t last long. The next 15 minutes were spent talking and trying to calm Alice. They had a hard time finding her vein in the right arm and took several stabs before they gave up and switched. Alice addressed each nurse by name and was very assertive. “Hands off, Jenna!” I don’t have any pictures of the during or immediately after. I was too busy being dad. Alice needed kind words and reminders to be brave and hugs at the end.

And here we are. Alice picked out a Disney Princess comic book and we went home much happier than we were before.

Having a Child with Down Syndrome, Part CXXVIII: Looking for Inspiration

Without a doubt, it’s difficult to be a parent of a child with disabilities. It’s a difficult to be good parent any day, but throw in disabilities and things get so much more complicated and so much harder. Some days are easy and rewarding and some days are…well.

I am not perfect by any means. I make mistakes. I get frustrated. I get angry. I lose hope. At times like that, I reflect and I look for inspiration. Sometimes inspiration comes from Alice herself. Sometimes it comes from seeing her interacting with her friends. Sometimes it comes from seeing other parents. Other times, I look for ways to create inspiration.

Last summer, Alice and I went to a couple comic conventions. I had an ulterior motive in going besides the actual convention. There is typically a section in the convention called “Artists Alley” which is several rows of tables of artists showing off their work. Many of the artists are there to sell their work and many of them offer commission work as well. I decided that I wanted to see if I could arrange a commission from one or more artists.

What I was looking for was a piece that met a theme of “how would a super hero treat Alice or how would Alice treat a super hero”. Describing this to artists was difficult in that I found myself choking up. The artists I spoke with were all very patient and kind, but few were willing to take this commission, and I understand. It’s scary. It’s personal. It’s exposed.

One artist I spoke with that day was Tana Ford. I didn’t broach a commission, but I liked her work and got her contact information and sent her an email. She seemed willing and excited to approach the idea. We went back and forth about some of the broad ideas and cost and she went to work. She sent me a scan of a pencil sketch and I was in tears. It was spot on. She inked and colored it and sent it off to me.

What does this mean? Mjolnir is the hammer that Thor wields. Only those who are worthy are able to do so. Nobody unworthy can even move it. But Alice can.

I have the work framed and it is on the wall over my desk. I look up at it frequently as a reminder that even on days when Alice is regressing in behavior or even on days when Alice is being stubborn that she is still worthy. Worthy of kindness. Worthy of care. Worthy of patience. Worthy of love. And this piece helps me. Not perfectly. Not absolutely, but it’s better than a pat on the back. I hope that I can arrange this with other artists as well.

“Steve”, you ask, “do you have any handy tips on how I can do this too?”

Why yes, yes I do.

  1. Be clear about your wants and expectations –¬†communicate to the artist what you want and what you don’t want. In my case, I wanted to leave a lot of the specifics intentionally vague, but I tried to communicate my reasoning: I’m not hiring the artist to be micromanaged. In fact, I feel that I’m hiring an artist for their imagination and skill and I don’t want to taint that.
  2. When negotiating price, look at the price and try to figure the hourly rate and if you think a skilled artist should be paid more and you can afford it, offer more. Yes, this is opposite of what our capitalistic society promotes, but keep the phrase “starving artist” in your mind.
  3. If the work is being done outside of a convention and the piece needs to be shipped, offer to pay for both packaging and shipping.
  4. Be sure to thank the artist and to say good things about them to others.

I had a wonderful experience with Tana and and I’m grateful that she not only accepted the challenge, but ran with it and I’m grateful to have a reminder and an inspiration when I need it.

Having a Child with Down Syndrome, Part CXXVII: Contrition

Alice makes lots of mistakes. Who doesn’t? Alice is fairly quick to apologize, but her apologies are hollow because they rarely inform her future behavior. This is frustrating for everyone. Inevitably, she gets into some else’s belongings, gets handed a punishment and Alice apologizes, but we know that she is just going to do it again because it’s her.

Not too long ago, Alice got into something of E’s. I honestly don’t remember what, but it wasn’t hers and therefore not OK. Alice and I had a discussion about it and she seemed to understand that she was going to be in trouble when mom found out, so she grabbed a notebook and some pencils and got to work:

She was, in the moment, honestly sorry for what she did and wanted to make things right. She made a card and put in a lot of effort in the messaging and the penmanship. Did it help? Ehh? Probably not, but as a parent I like to see that she did all this on her own.

Having a Child with Down Syndrome, Part CXXVI: It Takes a Village to Perform in the Nutcracker

Alice and I returned to the Pioneer Valley Ballet‘s annual Nutcracker production this year. Alice and I were both cast in the party scene as “Party Adults”. This was a new part for her and and a returning part for me. We started rehearsals in October with discussion and questions back and forth with the directors. Should we front load choreography? How many performances should Alice do? Most of these were answered with “let’s presume competence and be ready to change if we need to.”

On the way to the first rehearsal, Alice was chewing me out the whole way there. You know, like a typical 14 year old. When we arrived, all that went away and she got into the process of learning and the joy of dancing. She was smiling and having the time of her life. Once we changed and got back in the car, she immediately started ripping into me again. And I enjoyed that because I could see that she knew that there was an appropriate context for each behavior and that she loved dancing so much that it was OK to even have to dance with me, such a horrible person.

Rehearsals progressed and Alice refined her dancing and it was clear that she had learned her part, even correcting some other people. If she was confused, she asked appropriate questions.

I knew there was something special here, so I connected with the MDSC and went through the process of putting together a press release about this. I was contacted by Lindsay Kalter from the Boston Herald and talked to her at some length about Alice. The Herald sent out a photographer who showed up for a costumed rehearsal at the theater and took some wonderful pictures.

Ms. Kalter wrote a wonderful article about Alice.

This past Thursday, we had dress rehearsal. Alice was getting anxious about the process and started perseverating about it. She couldn’t get her head around the entirety of what was going on and was stuck. I grabbed a piece of paper, sat down with her and wrote out everything that was going to happen, even though it was pretty much that same every day:

  • Thursday
    • Arrive at the theater
    • Put on costume
    • Put on makeup
    • Performance
    • Take off makup
    • Take off costume

She took the schedule to her room and read it to herself several times to make sure it would all work.

The wig was a new thing for her. The standard ballet hairstyle is hair pulled back in a bun. The costumes often involve things attached to it –in this case, a sack of curls. Alice has short hair so a bun is impossible. At home, we slicked back her hair with a product called Gorilla Snot. It’s a hair gel that has two great features: it dries super hard and washes out pretty easily. We used this on my son when he decided that he wanted a mohawk several years ago. Turns out to work well for making Alice’s short hair into a helmet. E and I were both at a loss for how to put the wig on so we enlisted the expertise of people backstage.

The performances all went well for Alice. We had a couple things that we could have done better, but what show doesn’t have those moments? As Alice did more shows (7 in total including the dress rehearsal), she got better and better about stage acting and getting into her role. I had to give her whispered instructions at points as reminders, but all the majors things she did on her own.

Since the performances were all 2 times per day and because Alice and I were in the first act early, I tried to establish a rhythm following our schedule that would involve leaving the theater between shows. When Alice gets bored, she starts getting into anything that looks interesting and that is usually not hers. This is not cool. The first show had a funny schedule, so it would have been hard to leave, so instead we stayed. I sat Alice down and let her burn the battery in my phone looking at all my pictures. She still got into something in the dressing room later because I let her stay in there too long after the second show. My bad. I made a simple change. I made it clear to Alice that she wasn’t staying in the dressing room. Once she did her job, she needed to come out. I also repeated the instructions to her so that every responsible adult in earshot knew that was the expectation and they could help her meet that goal. The timing worked out well. In the time it took her to put on her costume, I could get most of mine on and then we could sit down for makeup together. In the time it took to get her wig on, I could get the rest of my costume together. That left us with a 10-15 minute window for surprises. For example, on the last show, she got poked with a hairpin when her wig went on and tears followed. That’s manageable, but it took time to settle her back down. Before each show, we went up to the stage and looked around and then I put on our lipstick. Every time we stepped off stage, a high five and a compliment from me and a lot of unsolicited support from the other kids in the production and parents.

On the last performance, we did our show and while Alice was getting her things together, I jogged upstairs and found one of the directors in the wings. She complimented Alice and I told her how proud I was of her work. I gave her a thank you card signed by Alice and me and a hug. As we parted, she said “we’ll see you next year.” Yes. I think you will.

E, my son, my folks, my brother (who took the better production photos here) and his wife, and E’s mom and a family friend were all in the audience for the Saturday show. It was wonderful for the support and for Alice to be able to share something she really loves and is meaningful to her. It was so heartwarming to get stopped by people downtown when we were between shows to be told how much they liked it (Alice is known by so many people in town, it’s astonishing). The backstage help was priceless, between makeup and costuming and wig.

On top of that, there was the whole rest of the production that went on without us.

I do not consider myself a dancer or an actor, nor do I have a great deal of experience with ballet, but from the participation in this show, I have a much greater appreciation for what goes into the show and how much hard work the PVB does to make a quality production.

I will always be grateful for PVB’s efforts to include Alice in a significant way in this production.