Spooky Good Win

As you may know, Jack’s been kinda obsessed with Halloween in years past. As soon as the back-to-school hoopla ends, he starts the mental countdown to trick or treating. Many times he’s asked, just before bed: When is it? And I say Oh in about six weeks.

But now that he’s older, the Halloween obsession was much, much better. He only talked about it about three weeks prior. And this year, I had a goal: make solid plans for trick or treating so that it’s not just me and Jack out there. He doesn’t notice but I wanted to avoid seeing: a) our next-door neighbor/basketball buddy leaving to trick or treat with his Catholic school friend or b) the gang of neighborhood kids that know us, roaming our block, with all the parents in the background talking and laughing, and I realize they didn’t invite us. I really want to get out of that business.

He doesn’t notice but I wanted to avoid seeing: a) our next-door neighbor/basketball buddy leaving to trick or treat with his Catholic school friend or b) the gang of neighborhood kids that know us, roaming our block, with all the parents in the background talking and laughing, and I realize they didn’t invite us. I really want to get out of that business.

I mean, how hard would it be for the two girls across the street to invite Jack? Does it occur to the parents that families like us can really really struggle on this particular night? Anyway, I decided I was getting rid of all that this year.

So first I asked our go-to mom friend of the two brothers who’ve been our best friends since kindergarten. She said she’d be traveling for work. Their plans were too complicated, and it wasn’t going to work. So I emailed two other moms from those years. I said Let’s keep it simple, do you want to trick or treat in either your nabe or ours for just an hour? Richie’s mom said yes. God bless her.

And then, enter loquacious Nate, who we got to know in 6th grade Robotics. Nate and Jack ride the bus together. In the afternoons, when he sees me coming to greet Jack, he always shoves down the window, sticks his head halfway out and shoots off some report from their day. His mouthful of braces and rubber bands are what I see in that rectangular space — a fleeting picture frame of a 15-year-old boy stopped at our curb, then blasting into the rest of his life. Nate talks really fast. A boy after my own heart!

His mouthful of braces and rubber bands are what I see in that rectangular space — a fleeting picture frame of a 15-year-old boy stopped at our curb, then blasting into the rest of his life.

In one of those exchanges I ask him Are you trick or treating? I don’t know! You should come with us! And he did. So my Halloween win was Jack trick or treating with TWO friends. Major! We started on the dead end street down the hill that’s packed with houses, a real safe choice. Jack was first to ring the doorbell almost every time. In fact I had to tell him to let Nate or Richie ring it! He peers into the candy bowls, taking his time, and not one person at the door rushed him. He said Thank you most of the time. I was grateful.

Sure, we had a slip on a slick sidewalk grate since it’d rained, and a short fall off a stair because we’re not all so sure on our feet. Plus the excitement is so ratcheted up and it’s dark out. But we all had fun. And personally I was glad I got three special needs kids out there to be seen. It’s mission we’re on to be seen.

Major progress. And Richie’s mom wants to have a hangout with us over at their place. I said If we aim for doing it before Christmas, I know we’ll make it happen!


Jacinto Rising

Jack started 8th grade. Wa-hoo! Last year of middle school. Next year, it’s high school, here we come! (Oh boy.)

Since Jack is in the small Special Ed class (called self-contained), he only gets one class per semester with the General Ed kids, either Tech, Art or Gym. He loves Tech of course but Gym is a joke for him. He hates it. It’s too chaotic and unstructured and they seldom accommodate the Special Ed kids — for instance, bring the games down to a smaller scale. I mean, my kid can’t throw a frisbee, ok? And being on a team of eight gets confusing. So he hates Gym.

Last year our teacher, Ms. G, suggested he take Spanish this year, to give him another chance to be with the Gen Ed kids. I, of course, am all for any kind of inclusion, so I was psyched when she helped him kick-start his Spanish by having him make some powerpoints of Spanish colors, numbers, months. He likes making powerpoints, so he was really engaged.

His Spanish teacher, Senora Sophia, is really energetic and enthusiastic. I liked her a lot when I met her this week. She had the students pick their Spanish names on the second day of class. Jack picked Jacinto. That is SO Jack, I thought. It has flair, rhythm. It’s on the cool side. Yeah, that’s Jack at age 14.

A very neat thing is that his behavior tech, Jeannie, is with him at school three days a week, four hours a day, and she’s in Spanish with him. His behavior therapy goes really well, by the way. We did a lot this summer, and I really recommend it for other kids like Jack. I had to get a little creative to make it happen, and we were on a waiting list for some time (some people are on lists for years), but it came through pretty fast and we just love our BTs. They come to our house too!

Jack has all these sayings that he lays on pretty thick with Jeannie. She has a few too. She’s always saying, “You’re killing me, Smalls.” He answers, “You’re killing me, Bigs.”

They also do a lot of “Hel-LO-ooo!” after one of them says something that’s just TOO obvious. It’s pretty funny. But now, because of Spanish, it’s “O-LA-aaa!” so that’s been properly translated! I hear all this from the kitchen when I’m making dinner. Jeannie knows exactly how to make learning fun, and I love her for it.

Ms. G’s getting into the Spanish swing of things too. Now when she emails me about modifying the Spanish quizzes it’s all “Hola! Jacinto will have a quiz tomorrow on the names of all the kids in his class. Instead of him learning 31 first & last names, though, Senora Sophia will give him 15…”

I’m not sure how we’ll do when we have to start conjugating a bunch of verbs, but right now, we’re on the upswing at school, Spanish is fun and we really hope Jack makes new friends this year. I’ve been asking Ms. G to get some kids at Jack’s table at lunch, maybe tap a couple of the Leadership kids. It can’t be that hard for this to happen. I mean, I love Frankie, another Spec Ed kid who sits next to Jack, but Frankie likes to say “Pizza!” over and over as he rocks back and forth, then “Jack!” Then he points to Jack’s hamburger, saying “Hamburger!” And around it goes. Not a lot of socialization going on there for Jack. Ms. G just told me they’re starting a Lunch Club on Wednesdays, a mix of Gen Ed and Spec Ed kids. I nearly fell off my chair! I didn’t have to beg for it! So happy.

It’s tiempo! Amigos por Jacinto, no? We’re psyched.

Meditation, with Dog

Jack and his dad are off at camp for three nights so I made a plan of what I’ll do to take care of myself with three and a half days free. Free! Well, after work I’m free!

I write it down. If I don’t, my plans fade into the ether and I don’t do what I wanted to. So: Swim. Read a novel. Start a daily reflection book. Get a movie from the library. Meditate. Ah, meditate.

I know I was happiest when I meditated regularly. It was when lived on East 7th. I was newly sober, I had a long-distance boyfriend, Ginsberg had taught us how to “sit” in poetry class…things just aligned for me to quiet down. I have that same need now.

So, check! I’ve hit the pool and already read a novel. Somerset Maugham’s The Painted Veil. Loved it! The story really pulls you along. Reading really is a spiritual act. You’re just sitting with yourself, and with imagination.

And check! Watch a movie. I’m on a Daniel Day-Lewis kick, so In the Name of the Father. One of my favorites. I love when 1) the riot starts and they blast Jimi Hendrix on the same downbeat, and 2) DDL is all “And I wrote Giuseppe in the sand (sond). And I pissed on it! I pissed on it!” Oh man it’s classic.

And I meditate before work. In the silence of my room, I hear the dog breathing behind me, a plane aching through the sky and cars flooring it up the hill on 65th to my right. I remember my mantra and I repeat it in my mind.

Somehow the dog helps me meditate-! He’s always calm, he’s always taking deep breaths. Good, good dog.

This is what makes me happy in my quiet time. So off I go. I had to turn this summer around before it was over. For me, to stay quiet, it’s keep reading, keep mediating and yes, keep praying.

I Am

Do any of you ever find yourself wondering Who am I? And How long will I be on the planet? What am I leaving here?

My answers to those two last two are: 1. Hopefully ’til I’m a burly 90 because Jack needs me! 2. My book — better awareness in society for kids like Jack and help for the parents.

As I’m wondering, I do know I’m the sum of it all. I know deep down I’m the same girl I was when I rode to Cold Spring Harbor that early fall day with Hillary Zimmerman and we stopped to buy licorice whips on Main Street. Answering Who am I brings a compendium of images from the places I’ve called home. And the most grounding ones are from just before adolescence. Isn’t that funny?

Growing up:
I’m a dancer/sailor/flute player.
I’m Pete’s sister.
I’m Dee Dee’s best friend.
I’m Nick’s crew.
I’m a pothead.

In New York:
I’m an Irish girl living in Brooklyn with a giant poster of Taxi Driver on my wall.
I’m a rider on a red Raleigh crossing the Brooklyn Bridge or looping around Prospect any old day.
I’m a fan of the Del Fuegos, Pogues and Ramones.
I am Melinda’s student; I am a poet at Hunter College.
I’m a waiter at Cafe Greco.
I am Paris’ girlfriend.
I’m a self-taught student of Buddhism.
I’m a thief but I won’t steal the Kerouac photo from the New York Public Library because I’m in recovery now.
I’m staying sober with the help of my home group, 2nd Avenue Clean & Dry.

In Sag Harbor:
I’m less angry now.
I’m a friend of Kevin & Mary.
I’m a salt water girl who swims at sundown with Wheeler the shaggy dog from NYC.

In Seattle:
I’m an Amazonian.
I’m a working mother.
I’m a celebrator of Jack and an advocate for disability rights.
I’m a fighter. That’s never changed.

I still am these things. I guess I’m kind of amazed at how many things I’ve been, all in the stages of my life. It’s the same for you. We are what we’ve done.

What will I leave here, though, is a big question for me now. It’s the manuscript I’m working on. That’s gotta be it. That’s what I’m leaving.

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.

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!