So Then There Was Yesterday…

Copyright © 2014 Stephen Hawley, all rights reserved.

Alice has many good days. By and large, she’s a very friendly, sweet, loving girl. So then there was yesterday.

Alice, as mentioned before, had a stroke when she was born that lodged in her frontal and parietal lobes as well as her pons. The parietal damage explains her difficulties with her right side, especially her right hand. The frontal damage is likely causing problems with executive function. In her case, there is a huge set of gaps between “I could do it”, “should I do it?” and “damn the torpedoes, full speed ahead.”

This has always been problematic. For example, in grocery shopping, she had a tendency to grab everything. This took years of repetition and a list to sort out. Still, every day I see her reaching for something in the house that is clearly not hers for which someone (likely her brother) would be unhappy with and we run through this litany:

“Alice, is that yours?”


“Did you ask?”


“Should you be touching it?”


“What should you do?”

“Leave it ALONE.”

Yet, even though we go through this, there is still the gap where “should I?” doesn’t seem to ever enter into play. It’s the reason why we have a lock on our bedroom door, after getting woken up so many mornings. It’s why our entertainment system is controlled by a smart switch after finding her watching “Mirror, Mirror” at 4:00AM with the volume up. It’s why our thermostat is locked through software. It’s why i lose a lot of sleep wondering if she will ever be able to live independently when these simple gaps exist. Another example is when we have house guests, Alice is so excited that she unpacks for them. Nobody has much privacy under those circumstances.

Yesterday, I caught her with her hand in the proverbial cookie jar several times for things that she’s be asked/warned/told several times not to do, resulting in time outs which in turn led to much indignant screaming at the apparent injustice.

There were bright spots. We (as a family) took advantage of the mild December weather and built some raised beds for our garden next year. Alice helped nicely. She carried wood for us and when she wasn’t helping directly she was (mostly) playing with her brother nicely.

At the end of the day, E was setting up a Chromecast device on our entertainment center and I could tell it was a little frustrating. Even with direct words to wait and not touch, Alice started to monkey with remotes. After the second time, I came down to intervene.

“Alice, what did mommy say?”

“No touching.”

“Did you touch that?”

“Nnn…o.: (at this point her brother was about to answer that for her, but I gave her The +3 Serious Raised Eyebrow of Bullshit Detection) “Yyy…es.”

“Ok, Up to your room.”

After a half hour of yelling, I heard her calling, “Daddy! I stuck!” Although her words weren’t intense, she was repeating them. I went upstairs and saw that she had removed the heating register and jammed her foot into the duct in the floor. “Daddy, I stuck.”

“Alice, I am so angry at your behavior.”


“Alice, is this yours?”


“Is it a toy?”


“Should you be touching it?”


“You know all these things, but still you do.”

Yes, I lost my temper. Who wouldn’t?


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.