Having a Child with Down Syndrome, Part LXIX: Reading Between the Lines

Copyright © 2014 Stephen Hawley, all rights reserved.

Tonight, Alice and I finished up our performances in the Pioneer Valley Ballet‘s performance of The Nutcracker. I was a Party Adult for 6 performances and Alice was a Holly Tree for two. Alice and I went to weekend rehearsals for most of the autumn and dress rehearsals for “theater week”. The Holly Tree role was new to the production this year, which meant new costumes and new choreography. In the dress rehearsal, the dressed Alice in the basement and then helped her up the stairs to the stage. Stairs are always tricky for Alice, even more so at the Academy of Music, which was built in 1891. The stairs are tight and the costume made it more challenging. At the last minute on the performance today, they decided that Alice would go up without her costume and they would dress her upstairs in the wings.

I could hear her complaining and calling for me, so I came over (my part finished) and calmed her down and tried to see if I could get her to understand what they wanted. Alice wasn’t communicating well, but my best guess was that they were asking her to do something different than the rehearsals and asking her to do something different than the other girls. I also think that she thought that she wasn’t going to dance or wasn’t going to dance in her costume. So instead of forcing her, I saw no reason not to put her in her costume and I would help her up the stairs early and we would have plenty of time to wind down. This is especially entertaining because at this point I was halfway out of my costume. I was still wearing formal trousers and shoes, but has nothing but a tank undershirt on otherwise. I also still had my stage make up on and looked comical, no doubt. However, when you are called as a parent, nobody asks you what you’re wearing. You just step up.


We waited on a riser downstage and got to watch some of the principals warming up during intermission. Alice got to see the stage when it was completely lit and got to see the dancers doing their thing. She talked to several of them, introduced me and asked them what their favorite character in the Nutcracker was and who they played. Alice really liked Mother Ginger. Mother ginger is a character (usually played by a man – bonus if he has a beard) in an enormous skirt which is hiding several children playing polichinelles. They come out from under her skirt and dance then run back under. Her skirt was in the far wing, hoisted up on ropes out of the way.

As a reward for her calming down and getting ready, I walked her down the main stairs on the riser onto center stage and danced with her for a minute while the rest of the cast gathered. We got her star prop, and I watched from the wings as she got set and did the opening dance with the gingerbreads. She did a wonderful job and I got the added bonus of having the best view in the theater. Alice’s mom thought she looked angry, but I knew from having 20 minutes of time with her that she was anything but. She was focused and intent on doing her part and doing it well.

We had a minor issue afterwards. Alice and I both had a second performance, but Alice decided that she was done and had pulled out her bun and got changed. I had her change back and took her to the makeup table and asked one of the staffers who I knew had a daughter in the company to put her hair back in a bun. Alice doesn’t like having her hair done by anyone and she went into an angry screaming fit. I reminded Alice that this was the consequence of her choice of pulling out the bun and that if she had asked me beforehand, I would have told her to keep it in. The makeup volunteer was having a lot of trouble with the bun, so I took over and let Alice focus her anger not on me (for a change) and did up her bun as best I could and got her ready for her second performance. I once again helped her upstairs and spent intermission with the principals.

Her second performance was not as good as the first. Alice was clearly tired and her concentrating was flagging. Still, she finished it well.


Afterwards, I took her out on a date to a nice restaurant for dinner and introduced her to a Shirley Temple. We ate and headed home to bed.

The really fantastic thing is the Pioneer Valley Ballet. The Nutcracker is an immense performance. The cast is a small army of people who need to get checked in, into makeup, into costume, on stage, off stage, out of makeup, out of costume, and checked out. For younger kids, this is an intense experience. Older dancers frequently have multiple parts. Dramas abound before, during, and after every show. PVB doesn’t have to make ballet accessible to Alice. Yet they do and Alice thrives in the environment. Yes, she had some trouble – had they asked, I probably could have helped prepare her better for the procedural change, but everyone was flexible and everything worked out fine in the end.

I will also note that during dress rehearsal, E was doing makeup and she finished right when Alice was on stage. We watcher her on a TV they have in the basement of the theater and we both had a moment of not knowing which Holly Tree was Alice. For parents of the girl who is so different from her peers, it was so nice to have the moment and recognizing it.


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