Monthly Archives: December 2017

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.

Having a Child with Down Syndrome, Part CXXXV: Independence

We so very much want Alice to be independent. The problem with that is that her judgement is often not so good. The funny thing about all our work for independence is that the fruits of it pop up in the oddest ways. To wit:

This is today’s entry on the calendar we have on the fridge. Alice wrote in, “ELLA ME TO THEATER”. At least, I think that’s what she wrote. It was a good idea. It didn’t happen, but it was still a good idea.