Sunday, June 29, 2014

Autism's Second Mourning

A new friend shared this term with me.  She is a BCBA and has worked with kids on the autism spectrum.  I've pondered our own 'Second Mourning' a lot since she mentioned it offhand while helping me diffuse Noe's very public meltdown.  I've decided that if I ever write a book, this will be the title.  It will be the anti-miracle autism book.

The First Mourning occurs after the initial autism diagnosis.  You immediately realize that your child's path is going to be different.   But there is hope!  Autism therapies, special diets, brain studies.  You read the miracle books.  You convince yourself that once you can get your child the proper help, he will come out of this relatively unscathed.

So you devote all of your time, money, and patience to this pursuit.  Uproot your family's entire life by finding new jobs and moving to a place with better services and schools and the hope of an insurance mandate. You lure the best therapists to your home ABA program, make sure his IEP goals are carried over at home.  You analyze daily data from therapy sessions, laminate PECs and visual schedules at ungodly hours.  Even a quick outing to the neighborhood grocery store becomes a targeted learning experience.

While I don't want to belittle the progress Noe has made and the amazing work of his therapists and teachers, I think all can agree that we haven't had the outcome we hoped for nine years after his diagnosis.

And as a result, a dark gloom lingers over our family life.  The knowledge that we failed to save Noe from his autism, lurking in every shadow.  That maybe if we'd worked harder, spent more money, tried a more unconventional approach to his therapies, we would be looking forward to college prep rather than life skills, varsity sports rather than Special Olympics.

This Second Mourning is keeping expectations high for Noe, maintaining his therapies and constantly looking for ways to increase his skills and quality of life, while trying to preserve our finances, our sanity, our family.  Remembering that we have another typically developing son who has spent his summers as a "peer model" at autism socialization camps, and way too many afternoons sitting in appointment rooms.  My baby boy, who learned to both walk and read in the waiting room of Noe's speech therapist.  Second Mourning means making sure Asher has room to spread his own wings and is not defined by his brother's autism.

Second Mourning is also worrying incessantly about the future.  Where will Noe live?  What will he do when he ages out of the school system?  Will anyone hire him?  Who will care for him when we pass away?

This Second Mourning has been long, drawn out, and unpredictably painful.  One day I think I've made it to Acceptance, that I've cried my last autism tears, and then something happens… Noe throws a tantrum on the city bus and we have to get off, or he tosses his iPad into his bath, or a stranger comes up and asks if he's a "retard"... that catapults me back into the painful realization of our situation.

I remember the day I transferred the money we had saved in Noe's college fund to Asher.  Despite all of our other Noe-related expenses, we stashed away a very small amount each month for this fund.  It was our Hope Fund. My voice cracked over the phone as I explained the transfer of funds to the college fund account manager guy.  He was sympathetic and helpful, probably assuming that Noe had died.  Noe was not dead but we were holding a funeral for our own dreams and anticipating a more realistic future for him.   That was a Second Mourning.

Life is complex, nuanced, beautiful and terrible all at a once, and that lurking black shadow is just one layer of our lives.  Along with the constant worry is constant joy.

Last night I found Noe snuggled between my bed sheets, hiding from his bedtime.  When I had told him earlier to get into his pajamas, he had stripped to his underwear and promptly forgot the second half of the request.  Instead of scolding him, I giggled with him under the covers, wrapping my arms around his soft brown skin, tracing his sharp angles and bony contours with my fingers and whispering sillies into his ear.  He grabbed for my hand just before he fell asleep.

Before I had children, I recall wondering what it would be like to raise a disabled child.  I knew that I would love any child of mine, disabled or not, but my focus was so narrow, and my life experience so limited, that I couldn't completely comprehend how that would come to be.  But it is not hard to love Noe.  I love Noe because he is.  Because he is mine.  Because he loves me and needs me.

I see such emotional maturity and compassion in Asher, surely an unintended consequence of his life beside Noe.  A life lesson that Ed and I could have never instilled on our own. Noe's teacher told me that Asher comes up to Noe's lunch table every day to say hello to his brother and to give him a hug.  I am so proud of him.

Ed and I have not won, but are fighting the autism war together.  We are old autism war buddies with stories and battle wounds, true partners, confidantes, and through it all….still madly in love with one another.  If I am Noe's advocate in the community and his teacher, Ed is his peaceful beacon.  When Ed is home there is a calm in Noe and in our home.  One that I have never been able to replicate on my own.

The thing to remember amidst the fear of the Second Mourning:  Everything has always worked out.  When Noe was first diagnosed and I read about kids on the spectrum, I feared Noe's autism would keep our lives permanently trapped within the walls of our home. Now we are barely home.  I couldn't envision preschool, elementary school, moving cross-country before they happened.  And Noe has always adapted, and even thrived in new situations in his very own way.

There will always be mourning and there will always be joy….and we will continue to move forward.

Monday, May 12, 2014

mother's day 2014

Sunday afternoon at Casa Guzman.  Ed is working, so it's just me and the kiddos….

Asher: Mom, I have to give you the Mother's Day present I made at school for you.

Me:  Ok

Asher:  It's in my backpack.  Where did you put my backpack?  (Looking frantically)  Help me find my backpack!

We look for the backpack and I find it….in the closet where it typically lives on non-school days.

Asher: (Dumping all the contents of his backpack on the floor of my living room).  Huh?  I can't find it!  It should be in here!  Did you throw it away?

Me: No.  Why would I do that?

We look through the backpack and it isn't there.

Me:  Did you put it in your coat pocket?

Asher: Maybe.  Mom, where is my coat?  Where did you put it?  Did I leave it at school?  (He dumps all of the coats out of the closet and onto the floor trying to find his….)

Meanwhile, Noe has used my distraction to put a barstool on top of the couch and is attempting to climb up on top of it and sit…..

We did a have a lovely evening walk around the neighborhood together.  The weather was warm and inviting.  My intention was to just walk a few blocks before dinner, but we ended up outside until after bedtime and then ate a quick, late dinner.

I never wanted kids growing up.  Sometime after college, but before I met Ed, I warmed up to the idea. Then we vacillated between being a family of four or a family of six.   Autism made that decision for us, and four feels perfect.  I strive to be a better person for these two - I don't want my actions or behavior to ever disappoint them.

Saturday, May 10, 2014


1.  I have not one but three top secret chocolate stashes around my house.

2.  When walking into my kids' elementary school, I used to wait for people to come up to me and say that I couldn't possibly have kids old enough to attend elementary school.  I couldn't figure out why no one ever said that.  Until this year.  When I realized I look EXACTLY like a mom of elementary school aged kids!

3.  Growing up, I notoriously and unapologetically drank milk straight from the carton.  But as soon as I moved out and lived on my own with my very own carton of milk, I stopped.

4.  When I was in elementary school, I would hide my clarinet behind the shed to go play basketball with the 5th grade boys instead of attend early morning band practice like I was supposed to.

5.  My youngest child has a VERY full piggy bank.  I don't give him an allowance, but he does make me give him a quarter every time he hears me swear (a dollar for the really bad words).

6.  I "borrow" from that piggy bank when I'm short on cash.  He is the only one with cash in the house!

7.   If someone I just met asks me what my husband does for a living, I sometimes make up a vague mundane job description (i.e. he works downtown, in an office) to avoid a long laborious conversation about the Seahawks.  

8.  My youngest child spent most of his first few months of life sleeping in his car seat on the floor of the bathroom in our one-bedroom NYC apartment.  It was the only quiet place available.  I constantly worried that he would end up with a curved spine.

9.  I first thought the "small craft center" near our neighborhood lake was an arts and crafts center rather than a boat center.

10.  I hated babysitting my younger siblings growing up.  I still don't love babysitting other people's kids.   On more than one occasion, I put my youngest…then toddler….sister in our rabbit hutch out back so I could play basketball but still keep her alive.

11.  I love my husband and I'm grateful for the support we received when we married, but if I had my wedding to do over again it would be much smaller and more intimate.

12.  I guesstimate my contact lens prescription and then order my contacts online to avoid seeing an eye doctor.  I will pretty much do anything to avoid going to a doctor

13.  A couple weeks ago I told my husband that I was going to a PTA meeting.  I walked right past the
school to Ben and Jerry's for free cone day.

14.  I am HORRIBLE with directions.  Living in NYC pre-GPS, I mostly relied on toddler Noe to help me locate the nearest subway station.  He had a great knack for finding them.

15.  When my DC neighbors did not recycle, it would fill me with homicidal rage.  Sometimes I would sort their trash myself in the dark of night.  Some I refused to talk to after frequent violations.

Sunday, April 20, 2014

middle school angst part 2

Note: This blog is turning into a series of Asherisms.  I'll try and write a real post again soon!

Tonight, before bed, I mentioned to Asher that in a few years, he can have his own room downstairs. (We have a small guest quarters downstairs with a separate entrance. I am nervous for the boys to have their room downstairs because we live in a densely populated neighborhood…. so the boys share a room upstairs next to our bedroom).  

I thought he would be excited.

"NO WAY!"  he said.  "Only teenagers who drink alcohol want their own bedroom away from their parents.  I don't want to be the kind of teenager who has to drink alcohol."

Asher thinks it over and then says, "Maybe Noe can move downstairs."

Friday, March 14, 2014

middle school angst

Asher is only in the third grade but already petrified of middle school (thank you 'Diary of a Wimpy Kid' book series).

Today, he heard some rumors swirling at lunch about the neighborhood middle school which sent him into a panic.

Asher:  Mom, I heard there are drugs at XXX Middle School.  I don't want to go there!

Me:  Asher, there are problems at all middle schools.  I'm sure everything will be fine.

Asher:  Oh.  Well... Mom?

Me:  Yes?

Asher:  What are drugs?

Eat Like A Japanese Exchange Student

Here is Yumi, mastering the art of the "American S'more."

I thought I was a pretty healthy eater until Yumi, our adorable and always agreeable Japanese exchange student, came to stay with us.

I don't eat much red meat, I try to load up on fruits and veggies, rarely to never drink soda.  We've successfully weaned our family off of fast food, except for rare occasions.   I do eat too much sugar, but everyone has their vice, right?

But Yumi uncovered all of my bad eating habits, exposing me as the ugly American eater that I am.

When Yumi first arrived at our house, she always sat down at the table when she ate, never snacked between meals, never asked for seconds.  She ate her meals painfully slowly.

I do none of the above.

On her second morning in our house, I was inhaling my breakfast at the kitchen counter while simultaneously packing school lunches and catching up on work email.  Yumi came up to me and asked, "Do I eat breakfast here [motioning to the kitchen counter], like you?  Is that what is normal for Americans?"


That became a constant question from Yumi to us. "Is that normal for Americans?"

Is that normal for Americans to drive their cars through the restaurant and pick up their food? (translation: use the drive through window)

Is that normal for Americans to go to the cafe (translation: Starbucks or equivalent) every day for coffee and treats?

So much food!  Is that normal for Americans?

Yes, we are freakin' fat slobs, ok?  And I thought I was better but now I just don't know.  Nothing reminds me of this more than when we all sit down together for dinner.  Yumi chews her food in this quiet, perfect (almost eerie) rhythm, while the Americans at the table sound like suffocating horses.

Please don't mistake Yumi's "normal American" question as casting judgment upon us.  She truly loves American culture and wants to understand it and embrace it with every cell in her 88 pound frame.  She stopped eating french fries with a fork.  By Week 2 in America, she was asking for seconds at meals.  Soon after, she was catching an earlier bus so she could grab a latte before her morning university classes. She has fallen in love with everything American from 'the Gap' to '7-11' (which they have BTW in Japan, but here you can buy yourself a hot dog!) to the 'Cheesecake Factory' to the movie 'Frozen'.

When Yumi discovered the show 'Glee' on our Netflix subscription, it was all over.  Every night after dinner, she settles down onto the couch with her electronic translator in hand, ready to take in all of the crazy American antics of the show choir misfits.  Watching Glee, for Yumi, is an active rather than passive hobby.  She frantically writes down American slang and used her translator to make sense of it.  Her face lights up and her body sways when they break out into song.   One evening, I made the unfortunate mistake of telling her that Cory Monteith, who plays the character Finn, had passed away the year before.  She sat up quickly in disbelief and shock, then quietly said goodnight for the evening.  I think she went downstairs to cry.

Tomorrow is Yumi's final day in America.  Last night, I went down to her room to ask a question and found her sprawled out on her bed, listening to Lady Gaga on her phone with a Coke in one hand and crunchy American Doritos in the other.   The transformation is complete.

I imagine Yumi returning home and her befuddled mother asking her in Japanese, "Is that normal for Japanese exchange students to return back from America as junk-food addicted Gleeks?"

Tuesday, February 18, 2014

What's New in 2014

After an all-around fabulous year for Familia Guzman, 2013 ended really, really badly.  We are still dealing with much of the fallout, so I won't go into detail on the blog right now.... or probably ever.   But 2014 is looking up again!

This is what we're up to these days.....

Easy Ed just finished his first season as editor-in-charge of Seahawks coverage with a Super Bowl win!  And although he did absolutely nothing to contribute to their winning season, he did get to lead and edit  a book about the Seahawks season.  He also wrote a widely read and highly acclaimed blog post in the midst of 12th Man Fever.

Noe is up and running with his speech device, TouchChat on his iPad mini.  It is his "voice" and he is very motivated to communicate with it.  He is already requesting non-food items and social reinforcement independently.... such as requesting a break, or asking for help.... which makes me believe this will help him go further with his language than he ever has before.  One of his favorite things to say right now is "I want you to LISTEN to me!"  We're all ears, Buddy.

How does a 9yo kid in Seattle pass the rainy winter?  Playing for his school's Ultimate Frisbee team, of course!  Asher is also really enjoying his after-school cartooning class and continues to take piano lessons.  He gets up early most mornings to write stories and cartoons which I find bizarre but kind of cool.

Me?  I guess my big news is that I started a little small business side hustle teaching Lego robotics enrichment classes at local elementary schools.  I am starting small with two classes, but am already receiving bookings for spring classes.  I'm not giving up my day job anytime soon, but running a tiny business has been fun!  Oh -- and I'm training for another half marathon in May.  Some people impulsively buy shoes online....I impulsively sign up for races, forgetting the time commitment and the fact that I have the feet and knees of a woman twice my age!

Happy 2014!