Trust

When your kid is young, the teachers look dead serious when they tell you his IEP goals are designed for achieving “independence.”

You think “Independent? He’s in 3rd grade!! You think I’m letting this kid outta my sight? You’re insane, Miss Cutthroat! He’d run away with a predator.”

You think I’m letting this kid outta my sight? You’re insane, Miss Cutthroat!

But what you say is “Mmm-hmm” as you stare at page five of a 26-page document. Elementary school is the beginning of the disconnect between Special Ed teachers & parents who just want their kid to come home from school alive — not almost-strangled on the playground (true story from a dad I know), not wandered away at lunch (possible for many kids I know).

Flash forward to the spring of 8th grade and you see a need for independence getting real pretty quick.

Our incredible BT Jeannie has started to plan some forays into the community with Jack, getting him used to riding the bus and preparing him for more independence.

They made a list of things to do on Saturday mornings: go grocery shopping, go to Bryant Park, go to Top Pot. Today was the first journey out, and the weather cooperated. We had gotten him his Reduced Fare Orca Card this week, and he was psyched. His picture’s on it!

They headed to Fred Meyer for Larabars & Gatorade. Jeannie suggested they also look for a brown wallet to carry his Orca card in. They just got back and Jeannie said, “Excellent. He did great on the bus. I sat across from him the whole time. He self-corrected his posture, and kept looking up at the stops — 110th Street, 115th. He knew exactly where to get off.”

“He did great on the bus. I sat across from him the whole time. He self-corrected his posture, and kept looking up at the stops — 110th Street, 115th. He knew exactly where to get off.”

Jack’s sitting on the couch pulling out a box of Peanut Butter Banana Larabars, three loose ones and two bottles of Gatorade. “Lemon-Lime. Icy Charge,” he informs me. And? A brown wallet.

“Jackster!” I say. “Congratulations! Sounds like a great trip out!”

They have other ideas too — volunteering at an animal shelter and taking a class at the community center. Maybe martial arts or hip hop dance.

I can bide my time while they’re gone without freaking out because I have 100% trust in Jeannie. She’s a superstar and Jack is learning a ton from her. For me, it’s like a slow reeling out of Jack into a larger circle of activities.

I wish all kids with epilepsy could have BTs like Jeannie. God knows they need it for their impulse control and executive functioning. It’s not fair that insurance only covers it for kids with autism. The way I see that? Autism parents are mightily mobilized. We epilepsy parents? We’re just trying to piece together the day. But we need to rise up, and our day is coming.

 

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I Can Do Anything on an 8-Hour Sleep

So I know the rest of the country is under a foot of snow with some crazy polar vortex today, but here in Seattle — remember, this is the hinterlands and we have our OWN weather pattern — it’s 100% sunny and mid-40s all weekend. And after enduring another Seattle winter, well, we are much obliged.

So I wake up, and me and Jack make a list: Breakfast, Read 30, Write down Spirit Week clothes, Free Time. I make him French Toast with peanut butter and syrup.

The sun is already streaming into the dining room. There are two big windows in there that meet at the corner. I don’t keep curtains on them because I like looking out at the trees and backyard. Lots of green. But I’ve been needing to clean them and the big mirror next to them — big time. So after breakfast, while he’s reading, I boil water.

These windows don’t need a grab-the-Windex-and-paper-towel kind of clean. I’ve neglected them. They need: boil water, get out the Dobie and throw an old towel on the floor because this is real grime!

These windows don’t need a grab-the-Windex-and-paper-towel kind of clean. I’ve neglected them. They need: boil water, get out the Dobie and throw an old towel on the floor because this is real grime! I take the screens off and start scrubbing. I’m still in my nightgown…going outside and reaching up the back stairs so I can get the outsides. Reach, reach!

That’s the moment I miss my apartment windows. In one of my NYC pads (Long Island City?), we had gotten new windows and they had this cool latch that made the window open on a total diagonal. You just leaned over to clean the outsides. Brilliant.

Anyway, I clean them, scrub the green mossy residue off the ledge, and man, those things are looking good in the sun. Then I clean the mirror and move on to my kitchen window and back door. You know, classic Seattle kitchen with a back door.

After that I do my regular cleaning which is two bathrooms, the kitchen floor and Murphy’s Oil Soap the stairs. Meanwhile, I’m getting the laundry done. Vacuuming comes later (or else there’s dog hair all over the rug all week). Jack has done his reading and moved into Free Time which means video games on his phone. I wrangle him off the phone and tell him he has to help wash the dog.

He gets the dog into the downstairs bath and runs the water. I have to get in there pronto to make sure the water’s not scalding hot. The dog looks up at me like “This again, Woman??”

“This again, Woman??”

“Yes. Such a good dog!” I say, grabbing the plastic lemonade cup and pouring water all over his back. Jack exits to go play Hot Wheels. He has little patience for bathing Hunter.

After H is clean, I iron the kitchen curtain and hang it back up. Man, my kitchen looks good! Then it’s time for MY Free Time so I head to the pool to hit my favorite lap swim. I swim for an hour, and I don’t mean just meandering down the lane. It’s crowded today, and I attack it. Evidently two of the other city pools are closed, so we’ve got a bunch of spillover swimmers plus some swim team swimmers with us today but we’re all handling it quite well. I think I have 7 swimmers in lane 5 with me. And I feel great. Dag!

This is all because I got 8 hours of sleep. It’s so easy to get less than that. But self care! Self care!

This is all because I got 8 hours of sleep. It’s so easy to get less than that. But self care! Self care!

I mean it’s just after lunch and I’ve made a dent in my spring cleaning, worked out, talked to my mom and bathed the dog! We’ll head back to the pool at 4:30 since Jack has his swim team on Sundays. Yup, Sundays is two trips to the pool for me.

Grateful. Grateful. Grateful for this place, my humble house and my kid who is growing leaps and bounds and is so excited for his life right now. His favorite activity? Unified Bowling after school on Tuesdays at the UW HUB. Yeah, that’s his thing. His behavior therapist taught him how to tie laces, so he’s totally independent with the bowling shoes now. Milestone. I’m grateful for even the dog — shakeshake! Water all over.

March in Seattle is just my favorite. The birds come out, the trees start to bloom and you feel like a new person. March is also my anniversary of arriving here. Weirdly, it’s also the anniversary of Jack’s first seizure. There’s always good and bad to any place but for today, I’m glad.

Jacinto Crushing

Jacinto got a 94% on his Spanish midterm. Whaaaaaat?!?!?!

Why is this huge? Ahh — because he’s never taken a midterm before. He studied hard, with the help of our awesome behavior therapist who made him the longest Quizlet ever and who’s determined he succeeds — alongside the 32 other kids in there! We studied at home too: the vocab, verbs and phrases.

He answered 70 multiple choices, wrote an essay and did the extra credit to go from 84% to 94%. Am I proud? Por supuesto, Cowboy! Igualmente!

This is his one big 8th grade mainstreamed class where he’s just another student. And due to Senora Sophia’s unflinching positivity and the fact that she really sees him, it’s been great. Really, the surprise of the season. After the test she said to me, “I’m sorry to have to tell you this but you’re going to have to plan some trips to Mexico because Jacinto is a Spanish speaker :)”

“I’m sorry to have to tell you this but you’re going to have to plan some trips to Mexico because Jacinto is a Spanish speaker :)”

Our Spec Ed teacher? She said, “He not only did well on his exam score-wise, he had excellent student skills throughout, quiet and focused. He stuck with the long test and seemed confident throughout the process. Super proud of him!”

Yes, his behavior therapist sat right next to him, but she didn’t give him any answers. He did this himself. He was so happy too. That was the best thing. To see his confidence grow. Fourteen is an amazing age. I knew it when I was 14 and it’s so clear to me now.

Immediately I thought: we’ve underestimated him. All of us. The school system. Me. But interestingly, not his BT.

What does it all mean? Immediately I thought: we’ve underestimated him. All of us. The school system. Me. But interestingly, not his BT.

I’ll need to try and keep this up in high school. I mean, Seattle Schools should be falling all over themselves to make this available to a kid like Jack. I’ll seek out a Spanish class that will allow him to have his BT with him, and then we’ll be guaranteed for another mainstreamed experience. I’m sure he’s sick of being in the little class. I am too. He just broke that cocoon. Ba-BAM!

Ring Out, Ring In

Bring on 2019. This year I had to leave a job I really didn’t like and get back to working with normal people, which I’ve done. But it was a slog. (Age discrimination is real.)

I’m starting 2019 by taking a mindfulness class I’m really psyched for. I even applied for the scholarship money and got it, so I think it’s meant to be. It’s just 6 weeks but the teacher looks great, and it’s a circle I need to be around with time to reflect and strengthen.

I always read a self-help book this time of year and I found one called No Sweat about motivation & fitness that’s on hold for me at the library. It’ll be a good Go, Girl, Go book as I’ve been swimming more, feeling really strong and it’ll keep me in the pool (where I belong, as my mom says).

Next year, my work advocating for Jack moves to the next level as we’ll introduce ourselves to our legislators and tell them he’ll be looking for a good job in the coming years. We’ll ask them to please keep expanding opportunities. We’ll also finish middle school and decide on which high school to go to. I’ve learned about the program choices and I gotta have faith we’ll choose the right one.

Oh, and maybe Jack will win Best Hair at graduation. It’s a thing. A thing he deserves. And yes, I’m competitive about it!

Highlights for him this year have been Spanish class where he sits as a mainstreamed kid with 32 others, doing the skits, getting 100% on the Friday quizzes and dancing at the party the day before Winter Break. All at his own pace, but he’s in there. Go, Jacinto, go! He calls me Madre now.

He’s also added a sport so we look forward to being on two or even three teams this year. His world just continues to open up. From his eyes, the future is possibility-rich. Let’s keep it this way. Major progress. Takes major faith.

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.