Church Sign

Do you ever drive by a church sign whose message stops you in your tracks?

Well, not literally. That’d be dangerous.

You know, it’s in black lettering and sometimes they use an upside-down W for an M or flip the 3 for an E.

So I drive by this sign on my way to work every day and it says Listen As If Love Matters.

Uh-huh. And there’s a little rainbow square in the corner.

Listen As If Love Matters

Isn’t that just so simple and right for right now? With the buckets and buckets of noise and discord raining down?

I wonder who writes the messages. Is it the same person who goes out and slowly pins in the letters? I’m connected to them even though I can’t see them.

And what if we just bent our head and listened to each other? That’s what I aim for with my stories of Jack. The thing is, in society and in school, kids like him are still 3rd class citizens in so many ways. Understanding and including them is a civil rights issue which needs a spotlight. So I’m shining it. Me and a lot of other people. I’m not going to sit by while my kid isn’t offered the opportunities he deserves. I’m not gonna let school get away with NOT having him feel a sense of belonging into the full life of the place. This is uphill for us, yes it is.

I’ll keep focusing and this requires me to listen to others as well. I’m asking others to listen and I have to listen in return. That’s all right with me.

So amen to all the church signs out there resonating with truth. In these hectic lives, we take our inspiration where it comes, don’t we? For me, that jolt comes at 8:30 in the morning at the corner of 50th & 16th.

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He Did It

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.

Forget Worrying

We’re five days away from opening night and now I know — this kid’s got it.

During the performances, he won’t go off-script. When we talk about the importance of staying with his group/staying in his blocking spots, I know he gets it. 100%. It’s taken:

  • my belief in him
  • 2 teachers
  • 1 aide at rehearsals
  • 2 behavior therapists: 1 at rehearsals 2x a week, 1 masterminding a daily rewards strategy
  • 2 social stories
  • his grandma who made him pantaloons from thrift shop curtains
  • our amazing director who cast a special needs kid in the first place
  • the principal who made it possible — way back in August — by funding the aide

It’s taken a village? More like a small medieval farming community!

Characters! Dialogue! Scenes! Fairies! Pirates! I just can’t resist any of it.

We’re re-reading the script. It’s about our third time through, and he’s so into it. When it came home, it was like opening a Christmas present. Characters! Dialogue! Scenes! Fairies! Pirates! I just can’t resist any of it.

Now that he’s practiced his own scenes and watched the rest develop, he’s so alert to the reading. I can see the wheels turning in his head as he pictures it. I can almost see what he sees. I’m so happy for him. He’s so invested.

Tonight, the director will send his final email. The subject will be “Treasures of Neverland – Week 12!” It always comes on Sundays. I’m sure it will be “Full Cast” Monday – Thursday. Then Friday: opening night!

I can’t wait to hear about what makeup he should wear, what time to get him to school on performance nights and cast party info! I know, I’m goofy. Family & friends are coming. I love the whole process. It’s creativity at its finest, isn’t it?

My money’s on Jack, boy-o. To Neverland!

For me, I will walk into that auditorium on Friday & Saturday night, dressed for the occasion and feel Zen about it instead of being a nervous wreck with a handicap. I’m not apologizing. I will feel proud that my kid, with his energy and all he can do, made it happen. For himself. He did the work, he learned the lines.

My money’s on Jack, boy-o. To Neverland!

Stepping Up

We’re two weeks away from the play. That means I’m vacillating between What the hell was I thinking? & He always rises to the occasion.

He always rises goes like this – he knows when it’s time to step up. At Discover Dance he did, when the 4th graders danced onstage at McCaw Hall. His classmates, the setting, the music, lights all conveyed: it’s time to do what we practiced. Every summer he steps up when he shows his dog in front of the judges. Every March he steps it up at Public Presentation in front of another judge. Beneath his go-to No is him knowing it’s time.

And the performance is definitely time to stick with his group…of pirates! In some rehearsals, he’s gotten bored and wandered over to the main action. Evidently the Pirate Queen is enticing. Also, the lead pirates have swords. The day those came out was tricky in that a bunch of other kids wanted swords. Jack was not alone in that. But overall, he just needs to stick to his blocking.

We’re all a bit nervous about this. Me, the director, his teacher who wrote him two social stories which go like: I need to tell my part of the story and the main characters have to tell theirs. I have to stay in my blocking so I can tell my part of the story.

What the hell was I thinking? goes like this – he’s a special needs kid. He’s impulsive. What if he darts out center stage when the Pirate Queen sings her big song? What if he gets lost or trips in the dark, cluttered wings? The other kids could do this blindfolded. Did I overreach this time? Is this what it takes to find more inclusion for him at school? Why did I do it?

Did I overreach this time? Is this what it takes to find more inclusion for him at school? Why did I do it?

Because it’s necessary. Jack loves the stage. Plus I’m reacting to last year’s play seeing no kids with disabilities in it. Seems unfair. This is our school too, so why can’t we be in the play? Why aren’t we represented? So I stepped up.

Yeah, it’s a lonely road. But maybe in 10 years, the directors will know all the tricks necessary to direct a play of blended kids — they’ll even write new shows with this in mind. The principal will actively convey the message that all are welcome to audition. You know, actually walk the talk.

Until then, I bite the bullet until the last performance. Ask me about 10:00 on May 19 how I am. Ahhhhhhh.

Neverland Forever!

Today the door was open.

Well, one door. Wide open. It’s a double door, actually, the color of oak. Black lettering above reads 101. It leads to diagonal steps down to the auditorium, stage right.

These are the steps Jack comes back up after rehearsal to meet me. Ms. Lloyd follows and I always know if it went well from their body language as they come up.

See, parents stay in the hallway, they don’t wander in to pick up their kid. The director had clarified this in the beginning at the parent meeting — the auditorium is the teenager’s space and please don’t come in as rehearsals wrap up. Another reason, he said, is that he wants the performance to be a surprise for us, too. I get this and respect it.

And really, I’m one of only a few parents that pick up their kid. Most of the students walk home from school at 5:30. It’s week 5 of rehearsals, and today’s call was for full cast, running through Act 1 for the first time.

Alone in the hallway, I checked my phone. 5:25. I leaned up against the row of lockers, and settled between two locks at my elbows.

Alone, I realized, except for the janitor silently approaching along the opposite wall of lockers. He pushed a wide duster that picked up scraps from the hallway floor. I nodded to him.

Inside, they were practicing the show’s anthem, Neverland Forever! The piano was banging it out. That must’ve been Anne, the musical director, playing.

They ran through it three times and let me just say — it sounded really good. I mean really, really good. This was a group of kids just showing everything they were worth, everything they’ve worked for. Not that I could see them. And already, I’m a basketful of emotion. I totally teared up as they sang about sapphire streams and silvery night skies.

This was a group of kids just showing everything they were worth, everything they’ve worked for. Not that I could see them. And already, I’m a basketful of emotion.

Can you imagine the waterworks I’ll have on May 18 & 19, the nights of the show? Besides being petrified that he’ll have a seizure on stage, I’ll be reminded how far he’s come — through so much and his condition is not a mild one. Some kids don’t make it through this — always in the back of my mind and sometimes it just pours out.

I couldn’t see him but he was in there, onstage, belting it out with all the other kids. Their voices filled the entire space. This is what I’ve been waiting for. For Jack to be a part of something. For him to belong.

As they sung, something clicked in me and I know that Jack will make it through. Even as rehearsals now increase for weeks 6-12 and his fatigue will become an issue. I couldn’t see him but he was in there, onstage, belting it out with all the other kids. Their voices filled the entire space. This is what I’ve been waiting for. For Jack to be a part of something. For him to belong. Even though he sings off-key and insists “sapp-hire,” as written on the song sheet, is pronounced “sap-hire.”

And he DOES belong. He belongs to the crew of Treasures of Neverland and he will be putting it on, part of the cast. Part of the show. This is it.

Yes, we are surviving this. AMEN!

Wild Spring Ride

Things don’t just happen.

He practiced for the audition. He had to prepare a short monologue and a song. He needed to bring the sheet music, a picture of himself and the audition paperwork.

He already knows the “Shark Head” monologue from Moana that opens with Moana’s “We’re alive! We’re aliii—ugggh!” Maui tries to thank her for her bravery in front of the crab but his shape-shifting magic has changed his face into a shark. She has a hard time not cracking up. Jack’s been acting this one out since we bought the movie. He has the whole tone and all the moves down. I wanted it on paper so he could practice with his caregivers. We found the video clip on YouTube–here’s how it went.

Me: (scribbles words down) Stop!
Jack: (stops the video)
Me: (keeps scribbling) OK go!
Jack: (starts the video, looks over)
repeat

Monologue memorized? Check!

He picked the song “You’re Welcome,” another favorite he’s been singing and dancing to. I found the sheet music online and completed the audition paperwork. He practiced. Song? Check! Audition? Ready!

This is the part where, in a movie, the calendar pages back to last August. That’s when I met with his Special Ed teacher and the school principal. I know most folks are off on vacation in August, but I was managing the conversation: “With Jack not brand new in this school this year, I want to increase his opportunities for inclusion. How can we do that?” I had my list:

  • After-school YMCA classes – which one appropriate?
  • Unified Robotics – happening again?
  • School play – I didn’t see Spec Ed kids in it last spring
  • Assemblies – are we represented?

At that meeting, there was lots of agreement which I knew would take some follow-up. The principal agreed to staff school play rehearsals with an aide. I wrote that down. My perspective is: my kid is allowed to attend this school (thank you, Individuals with Disabilities in Education Act) and he deserves to be part of the full social fabric too.

A very wise woman I know here in Seattle who works on the front lines of this says it comes down to: our kids need to find a sense of belonging at school. So here we are in February, and…

Enter Ms. Lloyd.

She’s the aide that will come to audition and rehearsals if he gets in. I wish Jack didn’t need behavior support but he tends to go off script and it’s a long story with all the seizures and the frontal lobe and we just need this.

In the meantime, our teacher had talked to the director telling him some of her kids were auditioning. That conversation happened on a hectic day when the director was taking questions at lunch. See, he’s not a school employee, he’s on contract for the play. So I emailed him asking if he’s aware that some Spec Ed kids are auditioning and that they have different abilities than their Gen Ed peers. I got a friendly response saying yes, he’s aware.

Me to You: I know I risk you calling me a controlling Stage Mom.
You to Me: Yeah, but I know you and you don’t have that in you. But why did you have to email the director?
Me: Because — things don’t just happen. All of it needs follow-up, even when our teacher says she talked to him. Even when the principal promises an aide.
You: I guess…
Me: It’s true. I was going on my gut when I wrote the director. Put it this way. Let’s say he will have…Maddie, a typically developing 7th grader auditioning. She’s been taking dance since 1st grade and voice since 3rd. She’s acted in three plays already. Then he’ll see Jack, who’s had three seizures a month, starting at 7 months of age until we got them under semi-control as he started school. It would be unfair, right, to only cast the Maddies and cut all the Jacks.

I see the school musical as an incredible opportunity for Jack to make friends with the drama kids who are artistic and may be more tolerant of differences.

On audition day, Jack put the big white envelope in his backpack: sheet music, photo, paperwork and typed-out monologue for last-minute practicing with Ms. Lloyd who told me she’d call when Jack’s ready for pick up. She called about 5:00.

I pulled into the back parking lot of school. Lo and behold, here they come out of a side door, bouncing happily toward me, chatting and engaged. I could tell it went well.

So guess what? The musical’s a spin-off of Peter Pan, and Jack’s been cast in the “pirate ensemble.”

Can you say AAAAARRRRR?!?!

So avast and shiver me timbers, mateys. Bring on the kerchiefs and eye patches. Bring on the swagger and spit. There will be fairies and magic and Tinkerbell too. Here we go. It’s gonna be a wild spring ride.

Fire

Today I built a fire. A fire to burn off last year and burn in the new. I’ve been meaning to light this fire.

Look around. People are burning with issues. My issue is getting the rights for Jack that he deserves. Because as a society we are not there yet.

Check out Malcolm Jenkins, the Eagles’ safety on the Players Coalition. Great article in the Times about him today. His issue is fighting for the rights, for instance, of 15-year-olds serving life sentences. Could that possibly be a good idea? No. I sure wasn’t ready to make good decisions at 15 and I’m sure adults, who are handing children life sentences, need to be more empathetic. And less racist.

Late yesterday I walked the dog around Gasworks Park. I parked at Gasworks, walked up the famous hill overlooking the city and Lake Union. It was overcast and windy. A young family with a small girl flew a long-tailed blue and green kite.

I walked across the sundial. Its mosaic, with lettered months and sun signs across a gold ellipse, such a talismanic part of this town. Small puddles stirred in the breeze. January, February, March. What will happen in spring, I wondered. Change is coming.

Then I walked down, took the dog on a long walk on the Burke-Gilman and took this picture. I’ve noticed this sign before, appreciated it. Because I’m the eastern girl out in the Pacific.

Eastern Pacific sign

When we got back to Gasworks, it was getting dark. The city lights shone more brightly. I wanted to go up the hill again. Being dusk, the thought crossed my mind — I’m a woman alone with this dog in this dodgy broken glass park. Am I safe? Yeah, I saw, there’s still people, in pockets, strolling around.

I walked back up the famous hill. It was dark now. I stared at the city lights, the docks below. Incessant freeway noise to the left, Aurora Bridge traffic to the right. The wheels of the world racing south, north. But silence.

A single sailboat, its metaphor never lost on me, slowly sailed west. Just its jib was up. One green light on the bow. I didn’t see any people, they must’ve been below. They weren’t in a rush, otherwise their main would be up too. Who’s steering? Where are they going? West, a single direction, was the only definer.

Beyond, a red beam on the western shore reflected a triangle on black water. The boat sailed into the reflection. I turned to go.

What’s your issue? What’s burning in you that you’re standing on top of a hill for?