Friday, February 8, 2019

Snow City

Most people think pre-snow hysteria in Portland is ridiculous and I totally disagree. I think it is one of the best things about Portland.

All day today, everyone was buzzing. How much snow will we get? When will it come? How many days will the kids get off from school? How mad will we be if it just rains!?!  There was a current of excitement that went beyond usual Friday levels.

Biking home from work, I spotted people outside salting down their sidewalks while chatting with neighbors. Another man was awkwardly lying on the ground trying to put chains on his car. I stopped by the library to pick up some reading provisions to get us through the potential of consecutive homebound days. Packing up the books and getting back on my bike, an older woman, a complete stranger, approached me and gave me a hug for being out on a bike in this kind of weather, all to help our planet. I didn't have the heart to tell her that I love to bike so much, I might still do it if it increased greenhouse emissions. It's just a lucky twist of fate that biking helps me look like a heroine of the planet.

And I'm pretty sure people who live in the Midwest don't empty out their grocery stores at the threat of 2-4 inches.  It's all a part of the hysteria that makes Portland quirky. While pre-storm grocery shopping isn't exactly fun, it's definitely a memorable experience and a great reminder that our food isn't necessary limitless. I went into Trader Joes with a quick exit plan, but there was less food and longer lines than during my visit to Ruble Crisis Russia in 1999. 

I came out of Trader Joe's with frozen vegetables, soup, spaghetti noodles and sauce and frozen orange chicken. None of it on my original list, but it will get us through the weekend. I also came out of Trader Joe's to....RAIN. Not a single flake in the sky.












Monday, February 4, 2019

Sitting with my grandma at the hospital

I'm just sitting here,
holding grandma's
hand, watching her die. (Jan 22 text to Ed)

I walked into her room that night a little ill-prepared. She looked fine, good actually, for someone so close to death. But I did recognize the death, and hadn't experienced it in-person since my dad passed away. I immediately wanted to run far away from it.

But I sat down and held her hand. And thought of the million ways she's loved me over the years. And I looked at her sweet face, still full of color. And I felt her soft, warm, wrinkled skin, and hoped I could pass a little of that love back to her.


Sunday, December 23, 2018

2018

2018 is cooking dinner in my kitchen with my earbuds plugged into Pod Save America - raging at DT in my head along with the Pod boys. It is going about my regular day, smiling at regular people, working a regular job, while the world might be crumbling around me. It is a state of constant helplessness with occasional commercial breaks of action  - a protest here, election canvassing there, donating to a cause over here. It is utter guilt for the ease of my uninterrupted life while so many others suffer. 2018 is sipping my morning chai and looking out my front window at my beautiful neighborhood, and beyond that - a dream city, and feeling peaceful and happy and lucky but also the slightest bit empty.

Friday, December 14, 2018

Autism in Photos




I've been working on a photo project: Familia Guzman, the New York City Days. I have photos from that time period scattered in boxes, on my external hard drive, in random emails, and I wanted to put them all together into a book with some creative order so we could enjoy looking at it. I imagined us all snuggled together on the couch as a family, the glow from our fireplace lighting our faces as we laugh and reminisce. Or something like that.

So last week, I started compiling photos on blurb.com in hopes that I could create a family photo book in time to wrap up and put under the Christmas tree.

Spoiler alert: Due to a minor emotional breakdown, I did not make my deadline. It's gonna be a Valentine's Day gift now.

Instead of creating a cute family photo book of memories and nostalgia, I've had a week-long flashback to the hardest couple years of my life.

Because I gave birth to Noé six months after we landed in NYC, and Asher was born two years later, and we were only there a total of four years, much of the book is Noé-centric. We collected hundreds of photos of Noé from ages 0-3. I began to pick through all of his earliest moments with a fine-tooth comb.

I'd always wondered if I had given him enough love and attention during those earliest years. Maybe I was a frigid mom? I wasn't ready for kids. I was finishing up my MBA when I discovered I was pregnant. The reality of my pregnancy surfaced after I ran out of a class presentation just seconds before throwing up outside the University of Oregon Business Administration building. A blood test confirmed it soon after. Noé was kind-of dropped on us, like an Amazon package arriving on your doorstep that you were sure you hadn't ordered.

I wondered if he smiled. I wondered if he was disinterested in me and in his surroundings and had other obvious autism markers, but I was too absorbed in my own life to see this reality. I just couldn't seem to remember anything with exact certainty from that time period.

It was a huge relief to unearth a happy baby from those pictures. And, for the most part, a baby that interacted normally with the outside world. I held him and he liked being held. He smiled, laughed, pointed and played. He looked at his board books, stacked his blocks and played peek-a-boo like a boss. Sure, looking back, there were some obvious differences. He was obsessed with certain things: watching the ceiling fan in our apartment, putting his hands in running water. He was the worst sleeper in the history of babies. He didn't babble nearly as much as other babies his age.

I now have photo evidence of when everything changed for him - shortly before his second birthday. He no longer looks at the camera and smiles for pictures. He looks slightly disheveled and confused.

I remember taking him to an easter egg hunt with many of his little pals from church when he was 2 years old. All of the other toddlers are running around filling their baskets with bright, plastic eggs, but there is Noé, alone in the corner, peering through the wrought-iron fence, mesmerized by the cars racing past on the adjoining street. I hand him a plastic egg and he throws it down. Then he picks it up and throws it down again. I show him how to put the egg inside his basket and how to pull it apart to discover the treat inside. He toddles away.

It is now time to take group photos. All of the kids smile brightly at the camera and show off their overflowing baskets. Noé has turned himself away from the camera, his basket hastily discarded in the grass.

It was so easy to dismiss his strange behaviors and ever-growing developmental deficits. Oh, his world was just rocked with a new baby brother. Oh, he was premature, he's still catching up. Oh, his father was a late talker.

By age 3, our new reality has set in. Most of the photos of Noé are taken during his many therapies.

There is Noé with his morning ABA therapist matching letters!

There is Noé with his afternoon ABA therapist imitating with playdough!

There we are on the subway, headed to Occupational Therapy!

And nothing about our lives has been normal since. Look right here, the photos tell it all.

Monday, November 19, 2018

Mom....






When Noé calls for me, the sound echos from deep inside himself. It's a plea that stops me cold. It is also a call of affection and love.

We fought many years for verbal communication. We had some talented, optimistic teachers and therapists dedicated to making it happen for him. We made Noé repeat his words over and over, from morning until night, hoping that initial sounds would morph into full words and then into sentences and life would suddenly click and we would have a verbal child!

After years of watching him fight and struggle for every sound with really no marked progress, and growing increasingly frustrated by not being able to truly communicate with him, we looked for new answers.

When we moved to Seattle five years ago, his new school team pushed for augmentative and alternative communication (AAC) delivered from an iPad. The iPad would be his voice.

We'd always shied away from this - we were told previously it was not implemented well in the schools. Teachers weren't properly trained on it. AAC became a crutch rather than a tool for true communication.

We were also warned that he would likely lose the few words that he had learned to say.

BUT WE NEEDED TO ABLE TO COMMUNICATE WITH OUR CHILD.

So we handed him an iPad, secured training for his teachers, found a speech therapist who specialized in kids like Noé, and hoped for the best. It wasn't a magic bullet. He was still lacking some of the fundamental skills of communication. But slowly, he started making independent requests using his iPad. Soon, he was doing much of his school work and greeting others using his iPad as his new voice.

And he lost all of his spoken words.

Except 'Mom'.

Usually he calls for me when he needs something and he's frustrated. Or when he's hungry. Sometimes, just before he goes to sleep and I'm giving him goodnight kisses, he'll look at me and mouth the words.

Mom....

I have recurrent nightmares. Noé is lost in a forest and he's pleading for me to come to him! We are in a large crowd and someone is taking him away from me! He is struggling in the water and I can't reach him! It is always dark and murky, like a bad made-for-TV movie. I fight and struggle but I can't reach him. I jolt upright from my sleep, that three letter utterance pounding in my head.

MOM!!!


So many people have asked. How does it feel to have a child who can't talk to you?

It must be lonely.
It must be frustrating.
It must be heartbreaking.

Being non-verbal was often described to us as the worst-possible outcome of an autism diagnosis, and it become our reality.

Today, I don't understand the question.

Of course he talks to me.

He talks to me with his eyes, his body language, his actions and behaviors, if not with his iPad. We've learned to listen to him in the silence. To talk to him in the silence. To love him in the silence.

When we were moving down to Portland this past summer and Noé gathered all of his most prized possessions and put them in a box and carried the box around with him everywhere we went for an entire month, we knew exactly what he was telling us.

We tried to calm his fears with soothing words, but also with as much immediate stability as possible. We put together his bedroom before our own, and even before we unpacked our kitchen. We toured his new school and met his new teachers. We took bike rides and walks around our new neighborhood and visited all of the local parks and shops.

THIS IS YOUR NEW HOME. YOU ALWAYS HAVE A SAFE PLACE HERE WITH US.


It can be frustrating.

When Noé won't sleep, for example. Is he sick or in pain? Is he anxious? Is he just being a jerk and refusing to go to bed? Sometimes I'm not sure. Sometimes I guess wrong.

But it is not any less frustrating than when my other son has a bad day and won't tell me what is wrong.


I hear from so many fellow moms who get tired of hearing their children call for them all day long. I get it. There is a lot of mundane, thankless work (and lost shoes) in the frayed edges of parenthood.

But will I ever tire of hearing both of their voices call for me? Never. It's complicated bliss.

Mom....






























Thursday, September 13, 2018

Portland

Ramona, Grant Park


We've lived in Portland for a month now. It feels both strange and wondrous.

When we get on the freeway after visiting my mom, it is still weird to exit back into Portland onto I-84 rather than continue on towards Seattle on I-205. It was eerie to take Noé to school on his first day to the school building my dad attended. I, of course, have no memories of his high school years, but I always try to picture him walking those hallways circa 1969.

A lifetime full of memories in the city that has always had my heart. I was at the post office a couple weeks ago and I had this instant flash bulb memory of waiting in line as a 21 year old at that same post office on no sleep and sporting sweats. I had just finished my Washington Seminars DC internship and I was mailing off final papers in exchange for a college diploma. I was so relieved. BYU was hard for me and I was glad to be done.

We pass Blind Onion Pizza and I remember that first impromptu lunch with Ed when we both worked for The Oregonian. We discovered we were both reading Phil Jackson's Sacred Hoops and both followed women's basketball religiously. It's amazing where one slice of above-average pepperoni and sausage pizza can take you in life.

We take the boys on a bike ride down to Saturday Market for elephant ears and I am once again a little girl and my Grandpa Razz is handing me my very first taste of the cinnamon sugar and doughy goodness wrapped in wax paper and only found in Portland.

I feel relief because the boys are settling well. Noé has been doing really well since school began and Ed arrived from Seattle. The special ed department at his school seems well-organized and the activities they have done, like making slime for science class, keep him engaged. Asher, although he misses his friends in Seattle, is enjoying his new school and all the activities. He made friends from the first day and he likes most of his teachers and classes. It isn't perfect - they didn't have a Spanish class to accommodate him and his core teacher sounds like she is working overtime to instill a hatred of reading in her students. But other things are really outstanding - such as the music program. He is playing in two jazz bands as well as the symphonic band and running cross country and loving it all. He will thrive and I think he will make even better friends here who will take him through high school.

After a hot, smoky beginning couple of weeks, the weather has been glorious. Sunny during the day, cool at night, with hints of autumn in the air.

Ed and I sit and stare at each other across the table and then laugh at our ridiculous life. We go to bed and we wake up together as a family. That itself feels magical after years of uneven, grueling work schedules and swapping childcare responsibilities. We both work from home. No commute, one aging Honda CRV that lies dormant on the street, an arsenal of bikes in the garage. A tiny charming home in the coveted Grant Park neighborhood. We're making less money than we have in the past, but we cover the bills just fine. We bike up to Alberta Street for warm croissants and raspberry jam at Petit Provence and ice cream at Salt and Straw.

A bus whisks Noé away to school and brings him home late each afternoon. Asher rides his bike the mile to his middle school early in the morning with his sheet music and stick kit for early morning jazz band. Next year, the renovations for the high school around the corner from us will be complete and they can walk to school, through Grant Park and past the bronze statues of Ramona and Henry and Ribsy (this is Beverly Cleary's neighborhood after all), for their final years of public education. The symbolism of my kids trudging past their childhood book heroes each day and entering the doors of the large, historic high school will not be lost on me.

I feel the pull of my kids, the waning years of intimacy with them and any remaining influence on their world view. This is our final sanctuary. I aim to regret nothing.

Wednesday, August 29, 2018

HTC

Beginning of my second leg, Hawthorne Bridge at dusk.

Last Friday and Saturday I ran the Hood to Coast.

At one point, sometime in the dark, blurry-eyed hours of Saturday morning, my team sat in our van and declared, "We discovered hell. A HTC race that never ends." And then it ended and it was the best thing we had ever done.

On Sunday, I rested. I rested because it felt like someone had violently beat my legs and back and feet with a rolling pin, nonstop, for an entire year.

On Sunday, Asher said, "This is the last day of summer and of my freedom. LET'S DO SOMETHING FUN!"

I said, "Asher. If you can find something fun to do in this house, I'm all in."

Asher said, "Well, how about a board game."

I said, "PERFECT!"

He walks back into his room and brings out ... Twister.