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.

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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?

All We Want to Do is Ride

On my birthday I feel like myself.

I listen to Fairytale of New York

and The Band Played Waltzing Matilda

I wonder when I too will get back home.

The Christmas tree smells good.

My recurring dream comes back

I’m up at the top of a slide

there’s a window where you pay entrance

and you get an orange boogie board for your son,

so he can surf it down

but we forget to order the board at the window

and then we’re down at the bottom

no one has ridden

and I’m pleading with the teen behind another window

I need a board so my kid can ride down

and there are surfers and blonde kids, golden retrievers and a big flat pool

it’s all complicated and all we want to do is ride.

On my birthday every year

I long for journaling

I remember my roots in railroad moon-in-the-desert Kerouac.

Remember at the New York Public Library

when you first got sober

there was a black and white of him in the stacks

the size of an album cover?

Gorgeous handsome Jack of the 1940s

I wanted to steal that picture for inspiration

but left it there instead.

On my birthday

I always make a wish —

Stage Lights

Jack’s upstairs practicing the workers’ song from Frozen, track 1, “Frozen Heart.”

His babysitter is sitting next to him on the couch egging him on in all the positive ways, singing with him, clapping, shouting out the “Ho! Watch your step! Let it go!” chants as he masters it.

Next Saturday, he gets to do this on stage for a fun Camp Willow night where they invite kids to do a song or scene of their choice. I thought he’d pick Moana…but he picked this. The gal from Camp Willow emailed asking what music we need, what type of background and even what kind of lighting. Jack said, Snowflakes and rainbow colors.

Why not? So I emailed his request to her. It’s original, you gotta give him that. We’ll see how it goes.

When we take him to shows, he always asks, Is it my turn? It’s hard to explain all the reasons why I can’t just let him wander up onstage at the 5th Avenue Theater or McCaw Hall.

When we take him to shows, he always asks, Is it my turn? It’s hard to explain all the reasons why I can’t just let him wander up onstage at the 5th Avenue Theater or McCaw Hall.

I hope at those times I’ve been gentle with my answer. I’m sure I don’t always get it right. But I know I’ve said, Well, hon, the stage is for the actors. They’ve practiced this a lot and now it’s their turn to be up there. If you want to be an actor, we can look into lessons.

I know last August during the week of Epilepsy Foundation camp, they had a dance party one night. I got a video clip of it. There was Jack, the first to get up on a makeshift stage and dance, while the others ran around the floor in a big circle (which I’m sure was the plan). A grown-up tried to get him to join the circle, but no. Stage was the place for Jack, in his white tee shirt, orange plaid shorts, long legs and sneakers, doing all sorts of moves in purple light — jumping up arms outstretched on the Whoo!, twirling his hands, spinning around, running in place really fast and then his crowning move, making muscles with both arms.

I like the part when he wipes the sweat from his brow and keeps on dancing.

Eventually five other kids join him. Because who really doesn’t want to dance on stage? It’s better up there. Jack knows this.

It’s all so beautiful to me, watching this kid grow up, seeing his creativity shine. Thing is, the seizures have done a number on us but as long as those who love him keep smoothing out the way to just let him be who he is and keep giving him calm direction along the way, then we’ve done well by him. He deserves to live his truth and thrive just like any other kid on the planet. I’m here to see that through.

It’s all so beautiful to me, watching this kid grow up, seeing his creativity shine. Thing is, the seizures have done a number on us but as long as those who love him keep smoothing out the way to just let him be who he is and keep giving him calm direction along the way, then we’ve done well by him. He deserves to live his truth and thrive just like any other kid on the planet. I’m here to see that through.

No Ordinary Hook

Jack is a two-pronged trick-or-treating strategist.

He has two plastic candy holders. The first one is the standard, round pumpkin with the looped black handle. Ours is purple. He calls this one Beginner.

The second one is orange, bucket-shaped, pumpkin-faced. He calls this one Advanced.

That’s because last year he and his dad spent a lot of time trick-or-treating and they actually filled the first one, came home, swapped it out for the second and pretty much filled that too. Yes, it was way too much candy and he did NOT eat it all.

Jack is big into Halloween. As soon as Back to School wears off, he turns on the imagination for Halloween. What should I be? The kid believes.

We have to make sure the costume isn’t too hot because one year in a black cat outfit, he got overheated and had a seizure down the block at the neighbor’s fence. I remember the spot he stopped in, staring into space, lifting his arm slightly and falling into bamboo.

A little while after that, a mom I like brought her kids by our house to trick-or-treat. She asked Where’s Jack? I didn’t want to say, so I just said He’s in for the night, nodding my head in a strained kind of way.

This year, with the seizures HOPEFULLY in our rear view, Jack is Maui, the demigod from Moana. You know, it’s Dwayne The Rock Johnson and his big song is You’re Welcome.

Maui carries a magical fish hook. It’s his attribute. We got one on Amazon, along with a Maui costume which is just a pair of pajamas, but that doesn’t bother Jack. On Halloween night we’ll layer up underneath so he’s not cold.

Maui carries a magical fish hook. It’s his attribute. We got one on Amazon, along with a Maui costume which is just a pair of pajamas, but that doesn’t bother Jack. On Halloween night we’ll layer up underneath so he’s not cold.

In character, Jack screws his face up and half smiles like he’s all strong and powerful, crooks his arm and makes a muscle. He knows where the strength is and he’s learning how to tap it.

Today, we headed out to Fred Meyer for a few things. He asked, Would it be ok if I bring my hook? I said sure.

Now, this is no ordinary hook. It evokes whalebone covered in brown scrimshaw tattoos. The handle is brown too, meant to look like twine wound tight for a good grip. Of course it’s all plastic, but what do you expect?

Oh and that’s not all! This is a light-up hook with a few sound effects thrown in — sssshhhhhuuu, sssshhhhhuuu. Jack’s been dressed up in the p.j.s acting out all the scenes from Moana in the house. He’s got all the moves to You’re Welcome, the dipping, the clapping, the twisting and crouching. His imagination just takes hold and you can see it illuminated right behind his eyes. It’s his power, just another kind.

Even though he’s a teen now and I’d really like him to be trick-or-treating with a group of neighborhood or school kids, his friends are limited and it’s usually just Jack and I trick-or-treating, or Jack and Dad going out. This year we’ll meet up with one friend and his little brother for a while, boys we’ve known since kindergarten.

Anyway, when we’re ready to leave for Fred Meyer, Jack appears, not only with his hook but in his Maui costume too. Full on. I smile. We get to the store, and in he goes ahead of me. I enter and I see the people waiting in line at the register. They stare and wonder why he walks that way.

To themselves, they ask What’s wrong with him? Face it, we all still say that. Even though it comes from a place of superiority and judgement, not understanding and grace. We’re just not that evolved yet. People need the label, it helps them. But there’s so many bad words on that label and I can’t live in the reminder. I need to exist in the possibility of what he can become.

To themselves, they ask What’s wrong with him? Face it, we all still say that. Even though it comes from a place of superiority and judgement, not understanding and grace. We’re just not that evolved yet. People need the label, it helps them. But there’s so many bad words on that label and I can’t live in the reminder. I need to exist in the possibility of what he can become.

So this is what I say to Jack: Walk right on in. With your hook. In your costume. With your walk. With your voice.

And that’s what we do. It’s so easy for me to believe in this kid. I’ve seen him struggle and I know what the seizures did to his brain. I believe with all my heart, especially because the stragglers at the register never will. I have to believe in him even more due to that.

So when we’re driving down Sand Point Way, heading home from our trip to Fred and the story he’s telling me comes to a nonlinear conclusion, I say Yeah! and I smile and nod my head with gusto. I know I’m acting a little myself now, but I’m here to build him up. Always. He’s strong — with or without the hook — and he knows it.