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.


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.