Tuesday, July 26, 2016

Autism's Summer

When Noé was 2 1/2 years old, and newly diagnosed with autism, I sat down at my little table in my little apartment in big New York City and wrote out an action plan, because that is how I deal with my problems. I "list" them away.  That summer day back in 2005, I wrote down every deficit and unreached milestone. And then I stamped a future date next to each bullet point. These dates were target goals for Noé to overcome each individual problem related to his autism.

I had him completely cured of his autism by age 6 and I was such a fool.

A naive young mother who loved her child and wanted desperately to help him navigate this disorder.

But nevertheless a fool.

Autism doesn't respond to timelines or targeted goals. For sure, progress can happen, even in the worst cases. We've had too many mini miracles for me to doubt that. But progress rarely, if ever, happens in a linear or tidy way.

Noé is now 13 1/2 years old. Each morning I drag myself out of bed early and finish my 'paid work' as quickly as possible. And then I sit down and work with Noé. I've given up on district-sponsored summer school. He spends more time on the bus than at the school site. And we've known for a long time that he really only learns in one-on-one situations that are highly motivating and fun for him.

We work together in 15 minute increments, while I dole out M&Ms and fruit snacks to keep him engaged. We practice writing his name, a skill he has learned and forgotten a half-dozen times over the years. I know he will rely on assistive technology and typing to communicate throughout his life, but I want him to be able to sign his name. I want him to have that one bit of freedom and ownership over his life. Noé could care less, but I press on.

We do simple addition with manipulatives, while in earshot, his little brother masters pre-Algebra via Kahn Academy. I model how to use adjectives on his communication device. "Do you want a BIG cookie or a LITTLE cookie?" We share how we are feeling in the moment, also using his magical talking device. Despite his blank face, Noé always FEELS GREAT!!!

I am skeptical.

This summer, we are conquering puberty. But probably puberty is conquering us. I show him how to put on deodorant. He applies it correctly under each arm, but does not bother to take the lid off.  We spend a lot of time practicing "quiet hands" and discussing things you can do in the bathroom or your bedroom but not at, say, THE SWIMMING AREA AT THE LAKE!!!

This particular summer has unleashed a fresh new fear. With his latest growth spurt and dark summer skin, I find myself looking at him and worrying throughout the day …. does he look more latino or white? Would it matter?  I know it might. How would he respond in a confrontation? I know he would never comply; he would never understand the expectations of such a stressful encounter. I know he could be in serious danger given the most star-crossed situation. And I know it can't be left to chance, that Ed and I must never leave his side.

It is all exhausting, terribly lonely, and I never really know if I'm doing things right by Noé. So many well-meaning people, yet never an offer of real help, never a break. And the ever-stark realization that autism will be in our lives forever.

We plug along each summer day with September and the promise of another school year on the horizon. We practice our sight word flash cards, sort the laundry, master the art of making chocolate milk from a mix, because time will pass anyway.

Autism's Summer

When Noé was 2 1/2 years old, and newly diagnosed with autism, I sat down at my little table in my little apartment in big New York City and wrote out an action plan, because that is how I deal with my problems. I "list" them away.  That summer day back in 2005, I wrote down every deficit and unreached milestone. And then I stamped a future date next to each bullet point. These dates were target goals for Noé to overcome each individual problem related to his autism.

I had him completely cured of his autism by age 6 and I was such a fool.

A naive young mother who loved her child and wanted desperately to help him navigate this disorder.

But nevertheless a fool.

Autism doesn't respond to timelines or targeted goals. For sure, progress can happen, even in the worst cases. We've had too many mini miracles for me to doubt that. But progress rarely, if ever, happens in a linear or tidy way.

Noé is now 13 1/2 years old. Each morning I drag myself out of bed early and finish my 'paid work' as quickly as possible. And then I sit down and work with Noé. I've given up on district-sponsored summer school. He spends more time on the bus than at the school site. And we've known for a long time that he really only learns in one-on-one situations that are highly motivating and fun for him.

We work together in 15 minute increments, while I dole out M&Ms and fruit snacks to keep him engaged. We practice writing his name, a skill he has learned and forgotten a half-dozen times over the years. I know he will rely on assistive technology and typing to communicate throughout his life, but I want him to be able to sign his name. I want him to have that one bit of freedom and ownership over his life. Noé could care less, but I press on.

We do simple addition with manipulatives, while in earshot, his little brother masters pre-Algebra via Kahn Academy. I model how to use adjectives on his communication device. "Do you want a BIG cookie or a LITTLE cookie?" We share how we are feeling in the moment, also using his magical talking device. Despite his blank face, Noé always FEELS GREAT!!!

I am skeptical.

This summer, we are conquering puberty. But probably puberty is conquering us. I show him how to put on deodorant. He applies it correctly under each arm, but does not bother to take the lid off.  We spend a lot of time practicing "quiet hands" and discussing things you can do in the bathroom or your bedroom but not at, say, THE SWIMMING AREA AT THE LAKE!!!

This particular summer has unleashed a fresh new fear. With his latest growth spurt and dark summer skin, I find myself looking at him and worrying throughout the day …. does he look more latino or white? Would it matter?  I know it might. How would he respond in a confrontation? I know he would never comply; he would never understand the expectations of such a stressful encounter. I know he could be in serious danger given the most star-crossed situation. And I know it can't be left to chance, that Ed and I must never leave his side.

It is all exhausting, terribly lonely, and I never really know if I'm doing things right by Noé. So many well-meaning people, yet never an offer of real help, never a break. And the ever-stark realization that autism will be in our lives forever.

We plug along each summer day with September and the promise of another school year on the horizon. We practice our sight word flash cards, sort the laundry, master the art of making chocolate milk from a mix, because time will pass anyway.

Sunday, May 22, 2016

End of School Year Wrap-Up

Since I am doing a lot of end of year wrap-ups for my job, I thought I would write one for our little family as well. This is always a weird time of the school year. Most of our extra activities have ended (soccer, swimming, Ultimate Frisbee, etc.) but there is still over a month left of school! We won't see summer vacation until nearly July this year thanks to the teacher's strike last fall.

When we all come home for the day now, we are often really HOME FOR THE DAY. Which is nice. But also gives me more time to think. Which is sort of a mixed-bag of good and bad. Sometimes it's easier not to THINK too hard but rather just DO.

Looking Back. Overall this school year has been a good one.  Noé's initial transition to middle school was difficult. New school, new teachers, new expectations and a new really early wakeup call was a pretty volatile mix. There were some weeks last fall that I wasn't sure we would all survive. I desperately wanted to find a better school situation, but instead, I dug in and made school better for him. It took me and another parent in the class a full two months of calls, meetings, angry emails to the district, to get his class size down to an acceptable level. Then I worked on getting him switched over to an elective he enjoyed (rather than the one that was easiest for an IA to take him to), made sure his teachers knew how to motivate him, reworked his IEP. It was a PROCESS and I can't say I had the best attitude about it. Sometimes I just wish it would all just happen like it should for once rather than resorting to lengthy measures and subtle threats. I am collaborative by nature. I don't like being the parent that teachers fear when I walk into their classroom. But I've learned how to be that parent when necessary. I hate that he is in a school that does not value inclusion or… honestly… special education. Unfortunately, alternative middle school options are few and far between right now.

I have discovered some upsides to Noé's current school situation. His lead teacher, although not proactive, does have a good base of special ed knowledge and is pretty effective with using data and various teaching techniques in the classroom. Noé has made solid progress on most all of his IEP goals. I truly feel like she cares for him. The specialists in the classroom are also solid and I've had a lot of one-on-one time with the school SLP, who also lives in our neighborhood. There is one wonderful IA in the classroom who gets it all. The classroom is large and has a kitchen (I think it is a former home ec classroom). The kids cook every Friday!

Noé went from a boy to a teenager in the stretch of this school year. It is hard to get used to his deep laugh, his chiseled face, strong shoulders and man-sized hands. He walks into my room at night and reaches for me and I jump to the ceiling because I think he is a stranger about to attack me. He seems to be taking these changes in stride these days. Last fall, he would come to me and start crying for no apparent reason. It must be so hard to have all of these weird changes happening to you and no way to communicate them.

His TouchChat iPad app continues to be a life line for communicate with us. We are starting to work beyond requests and on expressing emotions, thoughts, etc. It will take some time for sure. When I ask Noé how he is feeling, he almost always types in….I feel AWESOME!

We took the long road to AWESOME is all I can really say.

Asher's year was pretty non-memorable in a spectacular way. We set some goals for his school year at the beginning of the year after some 4th grade challenges with friends and the social layout of tweendom and he had achieved them all before Thanksgiving. Once he was truly happy at school again, he thrived in every way….academically, socially, in soccer, and especially in piano. He has gone from your average 10 year old piano student to a total star! I can't even help him anymore…he has mostly surpassed my piano abilities.

The end of this school year also marks the end of our time at our beloved little urban neighborhood primary school. I think this needs it's own separate blog post. So many tears every day.  (mine)

Looking Ahead. Noé will stay at his current middle school. He is stable and it's just not worth the potential downsides of uprooting him.  Asher will likely spend 6th grade at a nearby K-8. The middle schools here are in total flux as they struggle to find space for students while they build new schools, so there is no true "neighborhood middle school" or traditional elementary-to-middle school pipeline in our area. Asher's classmates are fleeing to all parts of North Seattle for middle school, both public and private schools. We have a place at a nearby public K-8 which I think will be a good fit for him. I am not a fan of the middle school concept and think most 6th graders are far better served in an elementary school setting. Perhaps my opinions will change this next school year. For 7th grade, we will have the option of sending him to the new comprehensive neighborhood middle school or keeping him at the K-8. Both schools will be located just five blocks from our house in the same new school complex. I will likely move Noé over to the new middle school for 8th grade. There are just too many advantages to having both kids in the same school just blocks from your house!

I am excited for Asher's K-8 adventure for many reasons. When we visited the school we found a place with a truly diverse student body (economically and ethnically), super small class sizes, some really impressive curricula and teachers. A few things give me pause, mostly to do with the culture of the school. Students call teachers by their first name which I find a little disrespectful and also confusing. I read the school newsletters and I can't figure out who is a student, who is a parent and who is a teacher. There is also a lot of decisions made at the school through "student consensus." Hmmm….  (I know it…my liberal shelf is cracking and I'm becoming a grumpy old traditionalist!)  It will be interesting to see where we are next year in our middle school journey. It is nice to have the convenience of the new neighborhood middle school opening up if alternative K-8 education is just not our thing.

Meanwhile, this summer we have some fun trips planned at the beginning of the summer and will likely hang loose in Seattle for August. I'm looking forward to working on some skills with Noé that we just don't have time to tackle during the school year when Mom is working full-time and Dad is hijacked by Seahawks coverage. Both kids are doing some local camps as well…Noé will be at Outdoors For All swimming and boating and biking and hiking the city and surrounding areas. Asher will do a triathlon camp and crew camp on the lake. And maybe a soccer camp stuck somewhere in there as well.

Summer is always spectacular in Seattle…I can't wait!


Sunday, April 24, 2016

Checking his race




Asher came home from school and mentioned he had taken a standardized test that day.  And before he began filling in rows of scantron bubbles with his ever-reliable Number 2 pencil, he told me he was asked to check his race and ethnicity in a box.  Slightly startled, I asked him which box he chose.  He admitted he was really confused because he knew I was white and his "papi" was Latino.  He felt badly filling in either one because he was afraid he would hurt one of us.  I asked him what he ultimately decided to do.  He said he looked down at the back of his hand and filled in white because his skin looked more "peach" that day (It was winter in Seattle.  His "Mexican" comes out more in the sun).  He cringed when he told me this, fearful he had offended his father and a long line of anonymous Mexican ancestors.

It is easy to forget that Asher hasn't been here from the beginning days of Familia Guzman.  When Ed and I started dating and we would hold each other close, the contrast between our skin tones was striking to me, my skin being on the fair side of fair and his complexion being on the darker side of Mexican American. When we were out together, I often wondered how other people perceived our difference in skin color.  It was upsetting when we would go to a restaurant and the host or hostess would assume we were not together, even as we stood together.  

However, after fifteen years of marriage, what was once glaring has become familiar. You forget the very first thing that others see when they initially meet your family is your cross section of skin color, laid out like paint chips at a hardware store. You forget that your children might have questions or confusions.

Asher has never heard his father speak in accented English.  Ed lost his accent while attending his East Coast boarding school, an attempt to duck the constant ethnic jabs from his majority white upper class peers. Today, his speech seamlessly flows between English and Spanish.  (My Spanish, unfortunately, also sounds too much like my English.)

For better or for worse, our family has blended into middle-class America. We spend Saturday mornings at soccer and swimming lessons, pay our mortgage every month, take a vacation or two every year. Asher doesn't know any other life.  But our different ethnic and socioeconomic backgrounds initially took a lot of working out.  Ed did not understand why I never discussed money, why I strived so hard to be thin, how my family could argue without yelling.

I didn't understand Ed's paralyzing fear of cops, the general lack of trust he had of strangers, why his eyes were always drawn down, while mine were drawn up, when we were out and something was happening on the street.

And let's just say, nothing makes you feel your full WASP-iness more than joining a clan of noisy, rambunctious, and acutely affectionate Mexicans.

And after fifteen years of living in pleasant neighborhoods in large and diverse American cities, we don't deal with ugly people on a daily basis. But we do have stories.  Maybe, someday, when the time is right, we will share these stories with Asher…..

We had recently moved to New York City and while getting to know a coworker, she asks me why someone "like me" would marry a "dirty Mexican."

It was horrifying to move to New York City, the cauldron of all melting pots, and hear 'dirty' and 'Mexican' used together as if they constituted a single word.   

We even had our moments in our multi-cultural Northern Virginia Shangri-La ….

Ed is loading groceries into our Honda CRV at our neighborhood Safeway. An older lady, feeling entitled to his parking space, yells into his face, "Do you even speak English?"    

We are headed for a rare …  our first ever…. anniversary weekend away, waiting to board a bus into the District.  Ed coughs into his elbow.  A woman turns around and shouts at Ed to "go back to where (he) came from" and spits towards him.

Sometimes we laugh these and other experiences off.  They become inside joke fodder.  We hold up our noses, knowing that we have more education, more resources, we are BETTER than these ignorant people.  Coping strategies to dull the pain.

There will always be people who will reduce you to an ugly stereotype, no matter the contrary evidence. This we have learned.

At the end of the day, and before his next standardized test, this is what I want Asher to know….

Ashercito,

Your Mormon/Mexican/Oregon Trail pioneer heritage is rich and dense and vastly beautiful. Your abuelo, the same man who rolls tortillas for you like magic, calls you 'Achercito' because there is no "sh" sound in Spanish. Your abuelito. He was plucked off the fields of the Central Valley and deported twice before receiving his green card and with it, a tiny slice of security and hope.  Your abuela and tias labored in downtown Los Angeles garment factories, shoulders haunched over sewing machines in dark rooms choking with heat.   

That Mormon handcart company, those early Oregon settlers, and your abuelos in Mexico all forged separate trails of opportunity. They walked poised and penniless across great plains and across country borders, aided by coyótes and handcarts and companions making similar journeys. With faith and resolution and endless sweat they built new lives of integrity and modest means. All of these trails have intersected at this very point in time for you, Ashercito. They constitute your present life filled with joy, choice and privilege.   

Keep your family close to your heart always.  But then check the box or boxes that feel right to you, or check none at all, and don't think another thing about it.

And even as you are asked to fit yourself into tidy boxes, avoid putting other people in them.  Listen to others and give value to their experiences, especially those coming from different backgrounds than your own.   And most especially those who have been traditionally put into narrow boxes of hate rather than given voice or true opportunity.  Never forget there are many who don't have the luxury of deciding how to label their shade of skin on any given day.

 If you do these things, you will never let down your family or yourself.

We love you always,

Your Mom and Papi

Sunday, March 6, 2016

The holiday letter I never wrote

A quick update on all four of us:

Ed….still works for the Seattle Times. Will this be his final year in the newspaper business? We shall see.  Earning a batch of APSE awards has renewed his energy for things like waking up at 4am every Monday to write a Seahawks column (even in the offseason!) and returning phone calls to elderly readers who want to know what channel the Huskies game will be broadcasted. The very best thing is when he returns their call and they don't remember calling him in the first place. Ed is very into podcasts these days and we are officially the old married couple barking at each other over his earbuds. He is also the token dad at hiking club (a group of mom friends and kids who hike a local spot every Monday afternoon).

Noé…is finally accepting his fate as a middle school student. The transition last fall to a new school with older kids and new expectations was pretty rough. He continues to love his Adele and Amy Winehouse and spends a lot of time after school playing their records on his record player. In his 'History of Rock and Roll' elective class at school, he introduced the class to Miles Davis after he requested Miles Davis on his iPad when the class was listening to music. His teacher found an album to play for the class and was pretty amazed that a 13 year old with severe autism knew 'Kind of Blue'. After a period of boredom and non-participation in his Keyboarding class (his other inclusion class), I emailed his teacher lyrics to all of his favorite Adele songs for him to practice typing out and Noé has eagerly attended class ever since. I just signed him up for three weeks at his favorite outdoor day camp this summer, which I tell myself is all for him, but it really is all about my own summer break sanity.

Asher…discovered a hidden passion for Star Wars when the last movie came out, after previously claiming to be "the type of kid who just isn't into Star Wars." When Asher likes something, he likes it ALL the way. We have known this since he was two years old and fell in love with trains and our lives were hijacked by Thomas the Tank Engine. He watched all the Star Wars movies in short succession, read the books, including the Origami Yoda series. His bedroom has now been transformed into a Star Wars origami production factory. He also just started another season of Ultimate Frisbee, the official spring sport in Seattle, and will start spring soccer soon as well.  At his piano recital last month, he played his song beautifully, but after he finished the song, his piano teacher, who was sitting next to me, looked over with a look of bemused shock and said, "that's not the one we practiced for tonight!"I guess you could say he's the type of kid who isn't afraid to go off script a little….

Me (Jen)… is still working at the same job I tried to quit three years ago when we moved to Seattle.  Every time I think about finding something else, I remember what I love most about it…zero commute time, the scaled-back summer hours, and the East Coast schedule which means I'm done early and can justify working in my pajamas. So basically I'm lazy. I've even figured out how to adjust the camera on my laptop so that I can video conference and no one has any idea I am wearing pajamas, as long as I remember to brush my hair. I am still also a small business owner as well, peddling LEGO robots to 2nd graders like crack cocaine. I meant to have reached a decision at this point - whether or not to grow the business into something full time and legitimate, keep it as a side gig, or let it die, but I really haven't decided its fate. The economics say go full-on, but I am tired of being up to my eyeballs in LEGOs. Plus, my heart tells me that I was truly meant to be a poor, unknown writer, and I have officially written four paragraphs of my very first book to prove it.

I think I speak for all of us when I say we continue to love the Seattle life. The city sustains us all in different ways. Noé loves hiking through the streets of the city and in its forest corridors, along with the ubiquitous water. Asher loves studying the city and figuring out ways to make it run better. Ed loves his return to urban living, and the role he has been able to play in building up a very fine sports team at the Times. For me, I love everything about PNW life and there isn't much that could tear me away from it.






Wednesday, March 2, 2016

A Sunday afternoon in January

We were all recovering from viruses, had been stuck in the house all day. Ed was in the office, sorting through the rubble of the Seahawks playoff loss.

Tired of being inside, I lifted our house arrest. I fumbled through a drawer to find a Starbucks gift card left over from the holidays. We climbed into our rain gear.

The outside air felt heavy. We trudged out the door through the layer of gray and gloom. It was three o'clock in the afternoon, which meant dusk on a rainy, winter PNW day. We headed down to the lake and then walked the familiar and calming half mile along the shore to the Starbucks. Noé avoided dogs as usual. When two giant huskies came toward him on the trail he backed himself up to the edge of the lake to avoid them, almost falling in.

Entering the Starbucks, we let ourselves absorb the warmth and coffee goodness. I quickly found a corner table. Asher instinctively let Noé sit down ahead of him so he was trapped between the table and his chair, and thus unable to wander the restaurant or sample food and drinks off other people's tables. I got up to order our hot chocolates and baked goods, keeping half an eye on our table. I noticed the guy seated across from the boys, giving Noé a one up and then looking at me. I gave him my involuntary, don't-mess-with-us side glance. I couldn't decide if it was warranted….if he was just figuring out Noé and his constant rocking and his hand full of ribbon, or if he was annoyed we had sat next to him and messed up his laptop-on-the-table-and-iPod-in-the-ears zen.

I set the food and drinks down on the table and immediately noticed Noe's hands, which had turned black somewhere between home and Starbucks. I smuggled him into the women's restroom to clean up and we sat back down.  Two sips of hot chocolate later, half of Noé's hot chocolate was on his vest. Feeling thankful we went with the waterproof outerwear, I ran over to grab napkins. All wiped up, we settled back down into our snack, and I then noticed the photo above us.

It was an oversized black and white photo of the swimming area at Green Lake, located right across the street from where we sat. The photo was dated 1936. The focal point of the photo was a wooden diving platform. Teenagers swarmed it like honeybees, a few frozen mid-dive off the highest platform. The boys wore European-style swim bottoms and the girls were in modest one-pieces and frilly swim caps. All looked really thin, perhaps the Depression showing on their bones.

I pointed out the photo to Asher and told him that when it was taken, his great-grandpa (aka grandpa-by-the-train) was also a teenager, living in Portland, skiing Mt Hood and taking day trips to Seaside. The photo felt full of youth and energy. I tried to picture my own grandparents in that photo. Eighty years later, my grandparents are well into their nineties, feeling their age, and writing the final paragraphs of their well-lived lives. Most likely, many of the teenagers in that photo have already passed away.

We finished our treats and headed back toward the lake for our walk home. I pictured the teenagers in that photo swimming on the lake, just as we do each summer. We've only lived in this neighborhood for three years, but the boys have grown considerably under the watchful eye of the lake and the protective canopy of the trees surrounding it. I feel so blessed to have this beautiful place as the static and dependable background of their formidable years.

(Click here for the 1936 Green Lake photo we saw at our neighborhood Starbucks)

Thursday, January 14, 2016

Monday evening

It was the end of a long Monday for both Ed and I. Noé had just done something that had created a huge mess. Something he definitely knew better than to do. Ed and I let our anger get the best of us. We both raised our voices at him and then sent him straight to bed so we could begin to deal with the cleanup.

Ed happened to walk by the boys' darkened bedroom and noticed a shadow climbing down from the top bunk. He peered into the room just in time to see Asher sit himself down on the lower bunk, next to a sad-faced Noé. Asher put his arms around his brother, an offering of comfort and love. Noé accepted the hug and they held each other for a few moments. Ed and I were both humbled to tears.

We continually learn how to love from this kid.