Familiar Surprise

Yesterday was a tough day for Sibs across the country, as we learned the news of the shooting at the Inland Regional Center (IRC).  Details are still unfolding, but what we know at this time is that the shooting appears to be related to a disagreement in a rented-out conference room, and not related to the core business of serving youths and adults with developmental disabilities. Nevertheless, hundreds of siblings and caregivers were on campus, and for hours the circumstances were unclear. For those hours, families throughout the area held their collective breath, waiting to hear how their loved ones – many without a full set of coping skills – fared through the chaos.

I was lucky enough to not have that variety of panic, as my sibling was not at the IRC. But the set of emotions that it did trigger are familiar, I’m sure, to many of you. Fear – for the times I thought someone wished my brother harm, for the times I didn’t think he could defend himself, for the times when a break in his routine threatened to turn into a disastrous meltdown. Indignation – that the world doesn’t want to help my brother the way I strive to do, that siblings are gathered in centers instead of finding their place in an integrated world, that no one in the media knows what a regional center does and can at best copy from their website. Frustration – that I have all of the worry and none of the power, that information flows more slowly and confusedly with and about our siblings, that this will probably (ironically) result in the best fundraiser that IRC has ever had.

But most of all, I’ve spent the day thinking about losing my brother. It’s been 13 years now since he passed, half as long as we had with him. His loss was best described with borrowed words – a familiar surprise. Jonathan’s disabilities stemmed from childhood cancer (a brain tumor). While the cancer never came back, our childhood was marked by the emergence of many new conditions that were tragic side effects of the life-saving cancer treatments available in the 1970s. Stunted growth, hearing loss, hair loss, epilepsy, cognitive and learning delays. When he had a stroke in his mid 20s, it was certainly a jolt, but we just geared up to face it like the prior challenges. Jonathan made improvements during his six months in a rehab center – relearning to grasp and walk and talk. Still of course with challenges – never holding small items or anything over a pound, never walking without a walker or for more than a few minutes, and talking at a whisper on the exhales from his tracheotomy tube. A little less than two years after his stroke – just about the time we had really settled into a new normal – my brother collapsed and stopped breathing. At the time I lived on the other end of the state, but had planned to be in the area the next day related to a business trip. After Jonathan’s collapse and rush to the ER, my mother called with those dreaded words of “get home now” and “we’re not sure he’ll still be here when you get here”.  The rush to the airport, the short flight, the drive to the hospital – it was the longest few hours of my life.  I cried during most of the flight, and my kind seat-mate offered me comforting words about the safety of air travel. I couldn’t find the words to say that I, a young woman, was despairing about saying good-bye to my also-young brother. How many times have I been in the position that it’s just too much to explain to someone from the outside, or that the emotions are too raw to share with a stranger…

I did get the chance to say good-bye, although it was to his body and not to his mind, as he never regained consciousness. In the days and weeks and years to follow, I’ve had nothing but time to reflect on how prepared or not prepared I was for his passing. The constant health threats throughout our childhood, the participation in support groups for terminally ill children, being around hospitals and death and grief… I knew what death at an early age looked like. I had even dared to imagine what it would be like to have a “normal” family that didn’t center around caring for my sibling. But to experience it was an entirely different thing. My long-term choices in career and home no longer needed to consider future caregiving responsibilities, my life partner didn’t need to be someone that would welcome my sibling-child into our life. More immediately, my parents had an abundance of child-focused energy that became intensely focused on me, and everything from visits home, to phone calls, to family travel looked different than anything I had known. My very identity was changed from that day forward. Not better, not worse, I just became a different person.

To all the Sibs that spent December 2nd worried about their siblings under lockdown at the IRC, my heart goes out to you. The shock of a mass shooting so close to your loved one, but also the dread and protectiveness and righteous indignation that have worn grooves across your heart.  I wish that none of us knew this familiar surprise.

Please share your story in the comments. As a community we are here to support each other, to deal with the realities of Sib Life, and to have the courage to imagine the possibilities together.

–Kalyn

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Kalyn Farris is a new addition to the Board of the California Sibling Leadership Network. Her sibling, Jonathan, passed in 2002, after surviving for 24 years with IDD and physical disabilities following childhood cancer. She currently lives in the Bay Area, and works in program management at a large health plan. Kalyn is particularly interested in supporting the growth of the CASLN, and bringing additional attention to the policy issues concerning Sibs and their siblings.

Dear San Francisco…

Lately I have been commuting from the East Bay via BART to SF, then catching a ferry to Larkspur and biking to my awesome job. As I take this very active commute to work, I look around and wonder; where are all the people with disabilities to mix up this able bodied crowd? Why are they not represented amongst the commuter traffic? Then I think again. This commute is not all that “accessible” for people in wheelchairs, let alone mom’s with strollers. For the first time today, I saw a man in his wheelchair ride get assistance from the ferry crew in Larkspur; they pushed him onto the ferry, then parked him. They knew what to do and it was no big deal, but for me it was. It was the first wheelchair I had seen in 5 months of commuting 4 days a week to work. I will never forget my first day taking the BART elevator  with my bike in tow at the Embarcadero station; it reeked of urine. I was so grossed out and upset by this; we subject people with disabilities, seniors and mother’s with strollers to this filth? This is a health hazard. See Bartrage for more notes on this- http://bartrage.com/node/802. Bottom line- The Ferry is accessible, the BART stations- with unpredictable elevators shutdowns, is not very. Come on SF, let’s move people!

Los Angeles Meetups Officially Launched!

It’s been a hot and humid kind of week in Los Angeles, but there’s a silver lining (or a caffeine-infused lining, at least)—CASLN MeetUps in Atwater Village are officially launched!!!

I’ve gotten a number of you amazing Sibs contacting me, interested in coming out and meeting new people who are in similar Sib shoes.  Every 3rd Monday of the month, at 7:30pm, CASLN’s Los Angeles chapter will meet at the Starbucks on Los Feliz Boulevard.

Tell your friends!  We’re working with local organizations to get a bigger, better meeting place at the . . . drumroll, please . . . Glendale Public Library!!

So come out, grab some coffee, pull up a seat.  See you this Monday!

 

Salutations, Sibs!

Jackie Moreno here, your Los Angeles Area CASLN rep.  We are busy making CASLN bigger and better than ever!!!

This means better marketing and more events.  OFFICIAL events (yay, Bay Area Meetups!!) and business planning for the next steps to make CASLN a non-profit (here’s hoping!)!

What can you do in the meantime?  Stay informed!  This blog and site will be taking the place of casln.org, so while we will still be updating that site, it will mainly be to direct people to THIS site—a much easier-to-use formatting tool that helps us spend time on what really matters: YOU!

Check out the pages, contact your reps (we’re really excited to get to know you!), and learn more about the many ways you can get involved and connect with other Sibs.

Happy surfing!

Jackie, Julie, Eunice, and the CASLN Team

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 busilly setting up new clients at work (private behavioral therapy agency) and starting the transition process with current clients to a substitute.  I was heading 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 spent early April submitting my application to the Behavior Analyst Certification Board, got my approval to sit for the exam, and nearly had a heart attack when I realized the FIRST available spot was the DAY before my Europe trip, 100 miles away 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 colleage, Eunice Im (check out her amazing blog post about it)!  I was invited back to my high school to speak on Autism Awareness, 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 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, 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.
When I left the exam room, I was glad I was finished, but now came the monumental task of driving back up to Los Angeles to finish packing for four weeks away.  I did sleep, but worrying I’d forget the most basic of basics, like toothbrush or underwear.
In a word, Europe was monumental.  I had never visited, and I was seeing it 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, because traveling to 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 a way to exist in theirs.  It was truly inspiring.
When we came back, the work only multipled, as I hit the ground running with my cases at work.  I started to manage the details of my cases, the tedious little details, 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 to be substituted.  Now, the cases were all mine to personalize, to own, to sign, to mold, to create and recreate and 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 the cupholder.  The email subject line flashed at me: BACB EXAM RESULTS.  I think I almost killed fifty people, I was so excited!!!  And so afraid!!!  But SO excited!!!!  My friend was celebrating his birthday that night—would it be selfish of me to open it and see what the results were before I met him?  I drove off the offramp and onto Green street, making turns until I was safe in my Pasadena happy place and opened the email.
“We would like to congratulate you on passing the . . . “
I began to cry.
Years of hard work and dedication to the process had led up to this moment!!!  When people spoke of people working toward a passionate ambition, they always spoke in admiration of someone “going places.”  Well now, here, there, in that moment, I knew that I had arrived.  This was like graduation all over again, the commencment, the beginning at the end when I’d reached the pinnacle of all I had to do to go, to be on my way, to prepare, to create a life of change, to march the destiny that I’d created for myself through years of commuting, studying, writing, and persevering.  I was here.  I had arrived.
MLXLS
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 couple weeks!), I am back.  Where have all the blog posts gone?  They’ve been working toward this moment.

Taking Small but Definite Steps Forward

SLXLM

This past Wednesday afternoon, Jaqueline and I spoke about the sibling experience to students pursuing the Developmental Disabilities minor at California State University, Los Angeles (CSULA). Dr. Barbara Wheeler is the Associate Professor of Clinical Pediatrics at USC Keck School of Medicine and the Associate Director of the USC UCEDD. She is an advocate for systems change in the field of Developmental Disabilities and has taught at CSULA for the past six years to raise a racially diverse workforce that is attuned to the needs of families and individuals affected by Developmental Disabilities. While still stunned to receive her invitation and the entrustment, we had an engaging time of sharing and discussion with the students.

Siblings have experienced something unique. Here at California Sibling Leadership Network, we see that as an investment of sorts and a responsibility to advocate for our siblings and for ourselves. We want to prepare to meet the challenge of supporting our siblings across the lifespan. We want to do our part to facilitate our siblings’ livelihood and their meaningful integration into the community. The lives of our siblings count; we want to make sure that they do.

A big thanks to Dr. Barbara Wheeler, Fran Goldfarb, Don Meyer, Katie Arnold, Rose Castillo-Chacana, and Melinda Sullivan for their contribution towards the lecture and the growing “sibling” movement in California!