I needed to get my strength back before I wrote this.
Jack did well in the play. It was just a super busy final week, and he was tired going into the Friday & Saturday performances.
It started like this. As expected, Sunday night, the director’s final email came. The call was for full cast Monday – Thursday (of course). I quickly realized we’d need to fit some naps in to keep Jack’s fatigue away, so I changed my schedule at work to make naps happen on Tuesday & Thursday. We’d already taken Friday off, knowing it was the day of performance, and he’d need to rest.
All week, the details flew — costumes, makeup, cast party, ticket delivery, volunteers, t-shirts, making plans for friends & family to come to the show. And making sure Jack’s aide would be meeting him at call time and sticking by him backstage.
I have to say I’m super grateful to Ms. Lloyd for going to so many of the rehearsals with him (when she was sick, a sub went), but she kind of flaked out on me at the end. On Thursday, she sent an email saying for the two shows she thought she’d sit in the hallway to not risk Jack feeling “babysat” backstage. I quickly put the kibosh on that because, as you know, I didn’t want Jack to do some impulsive racing onto stage when he wasn’t supposed to, even though I trusted him not to do that. The play was just not the time to dream of independence for him.
Then she overthought Jack’s costume and added drama when I didn’t need it. She told me she had a pirate hat for him. I know she meant well, but it forced me to talk to the director, relaying my feelings — I built a quality costume, I don’t want Jack in a hat no one’s seen. The truth is, I’d been learning to trust her less than in the beginning. Later on, I did catch a glimpse of it — something a heavy metal stoner would wear — totally inappropriate.
Then, 10 minutes before show time on Saturday night, me, my mom, sister & brother-in-law are sitting in the premier seats, and out comes Jack from stage left, down the short staircase and into the aisle, just ambling into the audience, a full house. I stood up immediately and went over to him. I’m like, Hey Bud! Whatcha doin’ out here? So we go back up the hallway steps, to backstage where Ms. Lloyd is sitting in the corner looking at her phone, its tiny glare a contrast in the dark wings. I told her Jack wandered out; she seemed surprised. Of course I’m thinking, What the heck! You’re supposed to be watching him not reading your feed!
So, the play. It was really interesting. In Act I, he’s back by the mast of the pirate ship, on the right. On Friday night he just kinda stood there, taking it all in, watching the pirate queen sing and carry on. Definitely forgetting to do his swabbing of the deck and all. I’m in my seat thinking, C’mon Jack! Do your pirate stuff!
He did do the crouching when the queen swings her sword around in a big circle. As for singing, he more mouthed the lyrics than really sang them. Jack just doesn’t belt it out like the trained kids do.
A sad thing for me to see Friday night was at the end, the whole line of pirates went up to take a bow but Jack was behind them. He bowed but he was alone in a second row doing it. See, that’s why I wanted him to have a peer mentor who could’ve just made sure he was in the right spot at the right time. But Teacher had said no to that.
Another sad thing for me is I couldn’t see him at all for the big anthem at the end. My friend, who was in back of us to the right, could see him, though. She told me he was singing and bowing. So good on ya, Jack.
On Saturday night, he did all his pirate stuff! He swabbed the deck, he said Hoorah!, he poked his head into the porthole and sang his lines. A little behind in timing, but still.
On Saturday night, he did all his pirate stuff! He swabbed the deck, he said Hoorah!, he poked his head in the porthole and sang his lines. A little behind in timing, but still. I realized by Saturday, he didn’t need to watch the action like he had on Friday. He was ready to be a pirate. And that’s just him being him. Also, due to his fatigue, my sister had the good idea that maybe he could just act in Act I and sit with us and watch Act II. At intermission, he did decide to do that, and that was fine with us.
The best part was this: on Friday night, three of Jack’s classmates came to see him perform. They have Down Syndrome and they’re pretty tight. At the end of the night, in the back parking lot, Jack and I were walking to our car, saying goodbye to our friends. We noticed an SUV needed to get by so we stood aside. Suddenly, all the windows open and it’s his three friends, all lurching towards him, stretching out their arms saying, Jack! Great job! Jack! You did really well. Congratulations, Jack!
And oh jeez — Saturday night, the cast party. I chaperoned. Of course I did. He hasn’t been to any teenage parties like that and of course I wanted him to go. But you have to realize I started Saturday night at 6:00 concerned about his fatigue level, hoping he wouldn’t seize onstage. The party of course is a huge celebration and I really didn’t want him to have a seizure here especially as it got towards 10:30, way past bedtime.
It was in the auditorium. As it started, a dad hooked up a laptop and was setting up karaoke. Onstage, down came a gigantic screen. On came YouTube and Bruno Mars’ Uptown Funk. And up goes Jack with a mob of kids singing and dancing. If you haven’t seen it, this video is all in-your-face dance moves and flashing lights.
Now Bruno Mars, you are one sharp cat. You’re larger than life before us and just ultra hip in your shades, creepers and pink jacket.
I’m looking up at this from the front row, thinking, Lord Almighty, Bruno Mars, too much stimulation makes my kid fall down into a seizure. You sure can dance, Bruno Mars, but Lord, Lord have mercy. Please don’t let him seize now.
You sure can dance, Bruno Mars, but Lord, Lord have mercy. Please don’t let him seize now.
Good parts of the party: When the theme song to last year’s play came on (most of the kids knew it) — seeing Jack in the middle of the crowd next to the stars of the show. It was all just an innocent teenage mosh pit (but I eventually had to go grab him since he was smiling up to kids too close and they were turning away). And, during Uptown Funk, seeing Jack interact with the kids — a girl appeared with a stack of party hats. He got one — yes! He also got passed the mic at one point and said Break it down! into it. Yes!
Bad parts of the party: Me having to keep my eye on him/trail him for his safety. And me avoiding the mom whose dagger eyes she could not conceal. Ugh!
Last Sunday, it was all over. Abruptly. No more emails, no more schedules. We were wiped out. Emotionally and physically. I mean, we didn’t even go to swim team Sunday afternoon — that’s how shot we were.
Sometimes the contrast of what General Ed kids can do and what Jack can do is slammed up into my face. That’s what the cast party was for me.
I’m super proud of him. He did it — he put in the time, he learned it, acted the pirate parts. Maybe an overreach on my part, but an inclusion opportunity which is what I am always seeking. Now, we turn to summer.