Where have all the blog posts gone?


Actually, I have a better question—where has all this TIME gone??


I can’t answer these questions in full, unless I start tracking what the past few months have meant for my sister, CASLN, and myself.  Even then, such a whirlwind has gone by, I don’t remember half the month of June!


Back in April, I was busily setting up new clients at work (private behavioral therapy agency) and starting the transition process with current clients to a substitute manager.  I was traveling to Europe from May 15-June 12, and needed all my ducks in a row before boarding that plane, or so help me God.  I spend early April submitting my application to the Behavior Analyst Certification Board, received my approval to sit for the exam, and nearly had a heart attack when I discovered the FIRST available spot to take the exam was the DAY before my Europe trip, 100 miles away from me in San Diego.


Still in April, I prepared for two presentations: one for my alma mater, Flintridge Sacred Heart Academy, and one for Dr. Barbara Wheeler’s class at Cal State Los Angeles with my colleague, Eunice Im (check out her amazing blog post about it)!  I was invited back to my high school to speak at their Autism Awareness Assembly, and I spoke about what ‘Disability Awareness’ means to me and how we are all called to embrace differences and accept—no, celebrate!—people for the uniqueness inside them.


Then came the month of May—mad, manic May.  I was studying for the BCBA exam, transitioning cases to a substitute, prepping parents for my upcoming four-week leave, all while trying to balance some regular sleep each night.  I read the Cooper book feverishly, attempting to catch up to colleagues who had been studying (supposedly studying) about five more hours than I had been.  I packed for my overnight in San Diego, I packed for my European excursion.  The first two weeks of May were a wild and crazy mental tornado, but somehow, I managed to get to May 13th.


When I left the exam room after taking the exam, I was glad I was finished with it, but now came the monumental task of driving back up to Los Angeles to finish packing for four weeks away.  I did sleep, but had nightmares of forgetting the most basic of basics, like toothbrush or underwear.


In a word, Europe was monumental!  I had never visited any other continent before, and I was seeing Europe for the first time through the eyes of a queen!  My parents took my brother and me to some of their favorite spots, and I got to fall in love with some of my very own.  I was humbled.  Traveling in Europe was no longer something trendy and glamorous that celebrities did between working on sets.  I was in another country, visiting another continent, living a whole different way of life, and I got to experience it as a foreigner, a visitor, someone who was looking to a whole other world for the way to exist in theirs.  It was truly inspiring.


When we came back, the work only multiplied, as I hit the ground running with my cases at my agency.  I started to manage the details of my cases, the tedious minutiae, like which columns to place next to each other in my clients’ Excel files.  I was fine-tuning myself as a manager in a way I hadn’t been able to prior to my trip, because my focus had been on getting the cases ready for the substitute.  Now, the cases were all mine to personalize, to own, to sign, to mold, to create, to recreate, to master.  My role as a new manager had begun.


Then I got the news!  I was driving on the 134 freeway heading toward Old Town Pasadena when my phone dinged in my cupholder.  The email subject line flashed at me: BACB EXAMINATION RESULTS.  I’m pretty sure I almost killed like, fifty people, I was so excited and nervous and afraid and excited and AHHH!!  My friend was celebrating his birthday that night—would it be selfish of me to open it and see what the results were before heading to the bar?


I drove off the off-ramp, made my turns onto Green Street, and safe in my Pasadena happy place, I opened the email, not even realizing I had been digging my nails into my wrists through sheer nervous excitement!


“We would like to congratulate you on passing the BCBA . . .”


I started crying.


Years of hard work and dedication to this process had led me to this moment!!!  When people spoke of others’ working toward a passionate ambition, they spoke in admiration of them “going places.”  Well now, here, there, in that moment, I knew that I had arrived.  It felt like graduation all over again, the commencement, the beginning at the end of the path when I’d reached the pinnacle of all I had done to go, to be on my way, to prepare, to create a life of change, to march the destiny I’d created for myself through years of paying my dues!  I was here.  I had arrived.


And now, after a couple weeks of celebrating (when you pass this exam, you get ALL the attention from everyone in this field for a solid month!), I am back.  Where have all the blog posts gone?  They’ve been working toward this moment.

Council for Exceptional Children, April 2015


The FIRST thought that crossed my mind when my alarm went off at 4:00am was, “ohmygosh, I’m awake before Starbucks  opens.”


My morning was going to be busy and full, but incredible!!  Driving down from Los Angeles to San Diego, I was excited for a breakfast date with Julie Payne-Neward, my co-founder with the California Sibling Leadership Network, and two other researchers in the field of ID/DD and Sibs: Zack Rossetti of Boston University and Sarah Hall of Ashland University.  I didn’t even know how we’d come across the opportunity exactly, but the Council for Exceptional Children was taking place at the San Diego Convention Center the weekend of April 11th, Zack and Sarah had contacted Julie (and she’d contacted me!) at some point, some months ago, and they’d asked if we were interested in presenting!  Oh boy, were we ever!!


Earlier than I remember ever getting ready in recent memory, I styled my hair, topped off my thermos with a (caffeinated) tea latte, dolled myself up, and hit the road at . . . 4:58am (it was all worth it!).  Google Maps gave an ETA of 6:55am from LA to the SD Convention Center.  I drove off into the darkness, anticipating the sunrise I’d watch over the 5 freeway in the coming hour.


Breakfast at the Broken Yolk Cafe was pleasant and fun!  Zack and Sarah were warm and welcoming and funny.  Julie had brought along her roommate from grad school, Anna, who was reserved but extremely sweet and genuine.  We talked about our Siblings, laughed about weather patterns and our California sensitivities to them, we “oohed” and “aahed” over Zack and Julie’s pictures of their firstborns, and walked from the cafe to the Convention Center once our breakfast was done. (Shameless plug for the Broken Yolk–my Eggs Benedict were DELICIOUS!)


We found the presentation room (33C) and set up our chairs on the other side of the table for a more intimate ambiance.  Once we got going, I felt like we were simply telling stories to old friends—the vignettes rolled off our tongues, and instead of simply answering questions, we seemed to be sharing understanding.  The actual audience was small but intimate, and I was glad to see that the people who stayed and asked questions were REALLY interested in what we had to say.  They all had personal ties to Siblings, people with ID/DD, and how to involve Siblings in the processes of Sibling care.  I felt privileged to hear Sarah’s and Zack’s stories, and though Julie and I had already shared much of our histories, I was happy to hear fresh perspectives on her attempt to balance her many roles as mom, wife, daughter, and sister.


When the presentation was over, I felt like I’d gained two more friends in Zack and Sarah.  Even more possibilities opened up for CASLN, as a licensed psychologist came up to invite Julie and me to an international conference in Santa Rosa next year!  Zack gave us a sweet ‘thank you’ letter with his business card, asking us to stay in touch and promising to stay in contact so our respective organizations can further support and empower each other.  Sarah and I seemed to have been fashioned from the same “over-achiever” cloth, having grown up with an extra motivation to overcompensate for what our Siblings couldn’t naturally do on their own.  Sure, I had woken up at 4 o’clock that morning, and had spent about half the morning driving, and had about three more hours of driving ahead of me, but I would do it all over again.  Maybe not this week, but definitely again!

Re-Reading Eileen

I don’t ever remember hearing about Eileen Garvin’s book, or reading about it in some bookstore review, or receiving an email alert from some site’s “Recommended for You” feature. I simply remember thinking, “Oh my gosh!!  FINALLY!!” and staring, delirious amounts of hope pumping through me, at the two little girls on the cover.

There was no way I could have known that, in 2011, I wasn’t ready for Eileen Garvin’s book.  I closed the cover on “How to be a Sister: A Love Story with a Twist of Autism” and wanted to cry, scream, and—had it not been so sacrilegious against all books—throw the copy against the wall.

 I was critical to an arrogantly persnickety level:  “The back-and-forth between past and present was dizzying!”  “RIGHT at the end, change the narrative from third to first person?!  That’s not allowed!”  “It was SO. RANDOM.  None of her stories connected to anything except, “Oh this happened because my sister’s autistic.”  We get it.”  “Who died and made her ‘Queen of Sibling Relationships?!”  “There are literally NO commas separating her clauses!”  Had Eileen herself walked into my room at that moment, I would have laughed in her face.  I vowed never to read her book or mention it to anyone again.

Well.  Four years later, I wanted to read it again.  The allure of my “self-banned book” whispering to me, I was curious to reassess such powerful dislike for a book when I’d just finished writing my own book about growing up with an autistic sister.  The subject matters were identical, so why did I hate it?  I picked it up again, reversed the curse, and decided to give the book another read.

The second time around, my pen nearly ran dry from all the underlining and margin notes I scribbled.  Icons like stars and hashtags, words like “yes!” and “true!” marked the paragraphs where I related, almost identically, to Eileen’s own experiences, reflections, frustrations, and insights.

What had changed the second time, when I read the book at twenty-five?  For starters, my age, and therefore my experiences.  Time had created some distance and maturity of perspectives from when I’d first read the book.  The difference was like walking a cobblestone street in stilettos, and then blaming the street for a broken ankle.  Nowhere in my twenty-one-year-old consciousness had there been room to entertain the possibility I simply needed to change the way I traveled along the road.

At twenty-one, I was belligerent and argumentative with anyone who dared tell me they “understood” my sister’s and my situation.  Never would I ever have given anyone the credit that they “totally got” my very unique circumstance.  By the same token, I tired of people discussing their own experiences without offering me some insight I might take for myself.  When Eileen discussed that this was HER situation, HER fight and battle, HER sister, HER attempt to create a relationship with Margaret, I rolled my eyes at her disconnection from all the other Siblings, like myself, who were looking to her to tell them “how to be a sister.”  But had she tried, I would have barked back that she had no right to tell ME “how to be a sister” because she didn’t know me at all!

I wasn’t ready for this book at twenty-one.

When I read Eileen’s book at twenty-five, I connected with her vignettes, visualizing my own sister and my own memories with her that were colored with the same concepts.  Perhaps my sister never obsessed over records the way Eileen’s sister, Margaret, did, but my sister held on to a backpack or bag du jour like it carried the Secret to Life.  If that bag got lost, SHE lost her shit.  Perhaps my sister never threw up her dessert in a restaurant like Margaret did, but there were plenty of restaurant visits where screaming, bolting, and crying all came before the waitress ever took our orders.  Maybe my sister couldn’t talk the way Margaret could, but to Eileen and myself, the struggle to connect emotionally with our sisters was only slightly less impossible than teaching pigs to fly.

I related to Eileen in a way I hadn’t allowed myself to relate to her four years ago, probably because I was stuck in what she accurately referred to as the “hope that was, more likely, denial.”  I hadn’t come to the realization yet, as she had, that there was no right way “to be a sister.”  I read the title of her book as a self-help manual, an answer guide, which she herself admitted to have once longed for and desired.  I never read it as a question, one she asked herself, but instead read it as a statement she was imposing on other sisters.

At twenty-one, I was caught up in my Abnormal Psychology classes, convinced that I held the key to my sister’s autism, which Eileen admitted she’d long realized she could never have.  I didn’t want to read that someone so relatable to me had accepted the feelings I feared.  And I didn’t even want to admit I feared them.  So it was easier to hate Eileen’s story for being the “other,” the “wrong” kind of way to accept being a sister to an autistic girl, and to detach myself from her story, as relatable as it was to mine.  It would have challenged me to accept, as she had, that I had no magic spell, and had no hope of ever coming to one.

My own book about growing up with my sister has stylistic elements similar to Eileen’s because, just as she did, I longed for a connection with a sister whose emotional desires were impossible for me to read.  The last chapter of Eileen’s book is written in first person, from Eileen to Margaret, the same way the first person diary entries in my book, written from me to my sister, offset the third person accounts written about her.  I saw that Eileen and I possessed a similar desire and anxiety: a true intimacy with someone who cannot cross the threshold of social connection in the way we neurotypicals want and do.

Somehow, someway, in the four years between my two readings, I’d come to the maturity of understanding the only experience I could talk about was my own, not to discredit the experiences of other Siblings, but rather to give them a reference, a glossary of concepts and feelings from which they could extrapolate and to which they could relate.

“I always thought I just needed to try harder . . . If I try harder, we will get along and be happy.  I’m just not being patient enough, smart enough, diligent enough.  I’m borne forward on the false hope that you will get better someday.  Somehow, there will be a measurable improvement if I just keep trying.  Be a better sister.  Help your sister.  Take care of your sister.  You’re not trying hard enough.

“I looked at you and thought, ‘This is it.  This is you, and here I am.  This is what we’ve got.  And it’s got to be enough, because this is all there is . . .’  I had been completely wrong about all of it.  Your autism was nothing special, nor was the chaos it brought into this family.  It was just life.  We had it worse than some, better than others.  There was nothing to wait for.  This was it.” (pp. 247-48)

The sharing of our experiences is the only thing we Siblings can do, but if we’re open to it, it can be a tremendous gift for all involved.  That’s what Eileen Garvin did—accept and learn from her circumstances as they were—and what she tried to do for me four years ago.  I just didn’t understand it at the time, but she was telling me I was exactly as I needed to be, and that I could put down my boxing gloves and stop fighting with my shadows.

Reach out to Jaqueline’s organization, The California Sibling Leadership Network, and read these and other blog posts about Siblings, by Siblings, at http://www.casln.org.  Fill out the form below for more information.



Born in a Coffee Cup

The year was 2011.  I, a bright-eyed and bushy-tailed senior at the University of Southern California, walked into one of my last Writing 340 classes of the semester.

“Hi Professor!  I have an idea for my creative project!”

The idea was a blog, and the idea was born in a coffee cup.  I’d been staring into mine the previous night, wondering what my “takeaway project” was going to be once I exited those exposed-brick, hallowed halls.

“I’m going to write about my sister!”

That was about all the clear objective I possessed.  Years of growing up with a sister with autism had shown me I had a lot to say,  and I was going to find out a way to say it all . . . somehow.