Kindle Announcement!

For those of you (like myself) who can’t imagine a day without the use of electronics, I’ve got good news.  My autobiographical book, Pieces: My Sister, Her Autism, and Me, is now live and available on Amazon Kindle e-book!!!

Get your copy here!

And thank you to the Sibling Leadership Network for helping me share this milestone.  It’s truly an honor to work with all of you!

Cheers to you, Sibs 🙂


Belles in a World of Gastons


On the eve of the 25th Anniversary Special Edition release of MY ALL-TIME FAVORITE DISNEY MOVIE OF ALL TIME (fyi, it’s Beauty and the Beast), the sweet motif woven throughout my childhood of Good conquering Evil appears ever-increasingly distant.

In 1991, probably for the first time in its history, Disney created a villain that wasn’t obviously evil; and in its portrayal of The Beast, gave me an small inkling of the notion of irony.  Gaston was, by all Parisian accounts, the man every woman [should have] wanted.  The Beast was, and not simply nominally, an absolute brute.  A kidnapping brute, no less.

The haunting melodic introduction warned the viewer, from the beginning, that looks often deceive.  A beastly brute and a handsome hunter transform throughout the movie into revelations of their true forms based on their characters and their actions.  Evil does not actually win, no matter how handsomely disguised.  Good will triumph, no matter how rough and uncut its origin.

What I only realized as I grew older and re-watched (and re-sang) my favorite story was that Beauty and the Beast is a warning to us that Good’s triumph over Evil is not very pretty; it may in fact, nearly kill us.

I do remember feeling the injustice of the final scene, even as a toddler.  The Beast lay bleeding, dying, on the cold stones of a rain-soaked balcony.  Belle, desperate and pleading, had come back for him!  They had fought off Evil for each other; they had saved each other, if only figuratively.  She LOVED him!  But Gaston had still struck.  Love was not an actual shield, it did not have the immediate restorative powers that other fairy tails boasted.

The injustice of the final scene may have been a warning, however brief, that the fight between Good and Evil will not be so transparent.  It will not be so swift, as the sword that struck Maleficent.  It will not be so grand, as the boulder that crushed the Evil Witch.  The villains in our lives may not even be so obviously villainy-looking as the purple and black-tentacled Ursula.

What happens when we face those opaque, subtle, disguised villains in our lives?  In our society (looking at you, Brock Turner and Kraigen Grooms)?  What do we say to the friend who’s been diagnosed with a completely preventable disease because of a selfish stranger?  Or the friend who’s been torn and bruised and violated, but is instead being painted with a scarlet letter?  How do we sing along to favorite tunes and revisit favorite childhood fairy tales whose messages seem irrelevant in the face of our own injustices?  When the justice system fails to provide just that (looking at you, Pasadena officer who said fingerprinting my jewelry box after a robbery was “really just something I probably got from a TV show”)?

We can only say what Belle said.  We say, “We’ll love you, from now until the last petal falls.”



‘From 1 to Infinity:’ The Marvelous Miss Nadjah Bray

I have to give a shout-out to my friend, Cait, for first posting a link to my Facebook wall about Nadjah Bray, the Chopped Junior® star who cooked her way to the top of the competition, and introducing me to this Food Network star.  I clicked the link back in late August, wondering, Why a post about a cooking show?  Cait (and everyone else) knows I’m not a master of the kitchen . . .

But Nadjah’s cooking skills weren’t what made me tear up (although she’s certainly quite the talent!), but rather the reason why Cait posted the link in the first place.  Nadjah’s inspiration for being on the show resonated with me deep down to my very bones: She was helping her family raise her twin autistic siblings.  “And I just want to help other kids out there if they’re going through what I went through.”

Oh my God . . . I stared at the computer screen, I HAVE to talk to her . . .

Like a good little internet stalker, I contacted everyone I could, from Food Network to its parent corporation, explaining that I was the Vice President and Co-Founder of the California chapter of the Sibling Leadership Network.  No one was legally able to provide me with Nadjah’s contact information.  Then, like a dummy, I did a Facebook search, which I should have done 50,000 searches prior.  Her page came up instantly.

I messaged Nadjah’s Facebook page and immediately got a response.  I was so excited to have seen the clips of Nadjah’s win on Chopped Junior® and to hear her inspiration.  She wanted to pay it forward, help Siblings just like I was trying to help them, get the word out about Sib support and understanding.  Could she please please please talk to me???

I felt like a kid begging Santa for a puppy!

“I’m very excited to talk to you!” came her response!  

So without further adieu, I am pleased and honored to feature Nadjah Bray, Chopped Junior® Champion and Sister extraordinaire, answering questions about her experience and sharing details about what being a Special Sib is all about.

Jackie: Nadjah!  I’m so thankful and honored you agreed to talk to me!  I can’t tell you how excited I was to hear that A FOOD NETWORK STAR was pursuing her dreams of Sibling support!  I’d love it if you could tell me a little about yourself and how you came to enjoy cooking?

Nadjah: Jackie thank for giving me the opportunity to share my story with you. I’m truly honored that a fellow AuSome sibling has reached out to me.

I began my journey in the kitchen when my sister Ny’Leah was born. She was born in distress and lacking oxygen. She’s diagnosed with H.I.E (hypoxic ischemic encephalopathy), epilepsy, cortical vision impairment and cerebral palsy. She spent 4.3 weeks in NICU, and my parents were gone from home everyday to visit and care for her.

I started brewing coffee and making breakfast for my mother and siblings every morning. Then I continued my passion while learning new cooking skills daily. Once my sister was discharged from NICU, mom needed assistance and would give me cooking instructions, and everyday I added my own twist and my whole family enjoyed my learning process.

J: Yep, sounds like a Special Sibling.  Your family is so lucky to have you there when they needed you.  What are some of your favorite dishes to cook?

Nadjah: I enjoy cooking healthy, savory, crockpot meals. I love Italian, Mediterranean, and Southern cooking.

I really enjoy seafood, and the very creative ways of cooking vegetables.

J: Yum!  Is there a secret to being a great cook? 

Nadjah: I believe in cooking with love. If you do not do it with love, it will not taste right. You have to enjoy cooking and be willing to try new techniques.

J: Very cool!  There’s a similar sentiment in my family.  What were some of the greatest and some of the worst moments when you were competing on Chopped Junior®?

Nadjah: My greatest moment was the entree round. They didn’t show it, but helping Christian was very humbling. He was very distraught and needed our help.

My worst moment was when my ankles began to ache and my head was hurting. I had to use my inner strength and the voice of my mother to get through.

J: I’ve seen clips of your episode, and you always seemed so composed and confident!  How do you think that confidence has helped get you where you are today?

Nadjah: My parents always tell me to believe in myself . . . To keep going and try harder. Without that I would’ve never tried.

J: I can’t tell you how excited I was to hear your inspiration lay with your special needs siblings.  I have an autistic sister–just one–so I can’t imagine what you’re family has to go through with multiple siblings.  What’s something you want to tell other kids your age about what it’s like having an special needs family member?

Nadjah: It can be extremely hard. I have to be patient and show them that no matter what, their big sister loves them. My brothers really do love us, and sometimes it’s difficult to know that when they are having melt downs and sensory overload.

I’ll say to other children with autistic siblings, to be patient. It’s OK to feel overwhelmed. Take breaks and walk away, when you feel that you can not get through. Look for local groups, Sibshops and trainings, that are specifically for us. Know that you are amazing and our AuSome siblings are fortunate to have us, just as much as we are for having them in our lives.

J: Very sweet.  Thank you!  Can you tell me a little about each of your siblings?  What makes them unique in their own ways?

Nadjah: I think my siblings are AuMazing lol

Ny’Leah is 10 months old, and so special because she’s a fighter. She’s a survivor. Her personality makes her unique, but her story makes her a warrior. She’s a happy, smiley, and loving baby, that has already beaten the odds and her diagnosis. She had a delayed swallow and gags often with vomiting. She’s getting a g-tube to help her with nourishment, until she can take more by mouth after feeding therapy. She will have eye surgery next month, to correct her eye muscles, from her brain trauma. See why I think she’s amazing and such a warrior?!

My twin brothers are 3.

Aubrey: Aubrey is the youngest twin. He is considered non-verbal, but he’s absolutely brilliant. He does everything in his own time, and is a wiz with electronics. He is super silly and has the best non-verbal cues.

Aarion: Lol, he’s silly, and loves to learn. He loves to compare and contrast. He loves puzzles, trucks and jumping on his trampoline. He is more verbal than Aubrey.

Both are smarter than they share with us, until they are ready.

Akerah: Akerah is 9, and an amazing dancer and talented singer. She’s my sous chef. She’s absolutely hilarious and very supportive. She’s my best friend.

J: I love your creative terms: AuSome and AuMazing siblings!  I need to start using those!  And you share a lot of insightful things with us — our siblings will share what they want when they’re ready.  Sometimes I don’t think the world gives them enough credit.  Good thing they have you on their sides!  So, can you tell me, what does your relationship with your siblings look like?

Nadjah: Interesting. We are all very loving and caring. They get on my nerves of course because they are younger than me. I’m often times helping with all 4, so I am like a caregiver to the youngest 3. My sister Akerah and I are super close. She’s my BFF. We have disagreements, but we are very close.

J: Do you ever have moments of doubt or insecurity about your siblings’ lives? If so, how do you deal with those moments, get past them?

Nadjah: Yes, I get concerned of the twins’ temper tantrums, and if they will continue these as they get older. If they continue with sensory issues, how will they balance this later and calm themselves.

I worry about Leah’s muscular diagnosis and epilepsy.

If I’m overwhelmed I lean on my parents and explain my concern. My faith keeps me balanced and knowing that they will be just fine. It’s heavy sometimes, so mommy says it’s OK to feel over it all, but never give up.

J: I know what you mean.  Your mom is right — she’s a wise woman.  You mentioned starting a website for Sibs of people with special needs — what would you like to offer other Siblings?  What would you tell them?

Nadjah: This is my dream to offer local support, constructive advice, and to build a network community that educates, forms friendship, refers local professional care, sponsor events and fundraisers for families in need. The financial struggle is horrible on my parents, and I see this. Other children need ways of venting safely and offering an escape and space to do that without judgment.

J: How are your friends’ relationships with your siblings?  Do your siblings factor in to the people you consider close friends?

Nadjah: I do not have local friends, because I am homeschooled, but I have a large family. My brothers are not so much bothered by most people, but they can be overwhelmed by environments, mysterious faces or aggressive people, that try to touch them without asking.

J: How do you make sure that you still get to be a kid among all of these wonderful, mature, incredible accomplishments you’ve achieved?

Nadjah: My parents know my fears and wanting to be an ordinary kid. I’m not on social media a lot. My life hasn’t changed much at all, except the event news and interviews. I’m still the same Nadjah. I love playing at the park, playing dress up, swimming with family, games with my sister, singing, dancing, jumping on my trampoline, riding my bike . . . Just being a kid and being a free spirit, as my mom says.

I enjoy family movie night, shopping, amusements parks and anything sugary that mommy says I shouldn’t eat to much of, AND . . . chocolate. Omg, I love chocolate.

J: Mmm chocolate!!  Hahaha me too!  I’m glad you still make time for you.  Do you know what career you’d like to pursue?  Please tell me you’re considering college at USC! (ha! Just kidding . . . kind of)! 🙂

Nadjah: Yes, I want to go to law school and become a lawyer, entrepreneur, fashion designer and own several 5 star restaurants.

Lol, I’d love to go to Harvard, however it would be awesome to visit you one day at USC😊LOL

J: Oh goodness, please tell me when you open a restaurant!  I’ll be there all the time!  That’s amazing.  You’ll definitely achieve all that and more, I’m sure of it 🙂 So, are there any worries you have about your own future as a Special Sibling?  

Nadjah: No worries for me. I am extra sensitive of my siblings needs, so I pray that they are all self-sufficient and can pursue their dreams as well. Either way, I will be there for them.

J: That’s wonderful.  So, when you’re struggling or at an incredibly low moment, or full of doubt — because we know having siblings with special needs isn’t easy — what gives you strength?

Nadjah: Wow, this is so true. My parents, my sister, Papa, Nana, and God mother are all so supportive. I have any of them to be free to cry to, vent or express any frustration.

J: You are an absolutely incredible young lady.  Are there any questions you have for me?

Nadjah: How did you get started with your organization?

J: I heard about Sibling Support when I attended a conference about Regional Centers here in California.  I contacted Julie Neward up in the Bay Area who was trying to start a California chapter of the national Sibling Leadership Network.  She and I met when she was down in Pasadena for a baby shower, and the rest is history!  We have two other incredible Board members — Kalyn Ferris and Eunice Im — whom we met along the way.  Doing lots of research and staying up late talking on the phone via conference calls is a lot of how we got started.  We’re still figuring out exactly what we want to do, but every new event or interview enriches the message that Special Sibs deserve support.

Nadjah: Did you have moments of doubt that you could truly help others?

J: Absolutely.  All the time.  I still do — when very few (or no) people show up to an event, or people don’t return phone calls or emails, I wonder, “Does this even matter?  Am I kidding myself?”  I have incredible friends and family that remind me to keep persevering, and the few people I may have helped are still extremely important.

Nadjah: Did you ever feel like life isn’t fair?

J: I’m laughing, because when we were little and my brother and I complained about Life not being fair, my dad would ask us if we wanted ‘fair?’ That meant that EVERYTHING in the house would be “fair,” if one of us was invited to a party but the others weren’t, we couldn’t go, because “it wasn’t fair!” Of course, we’d say, “No . . . we don’t want ‘fair.”  It was an extremely powerful lesson that, no, Life isn’t fair.

And I’m not just talking about my sister — I have family members who have passed away at extremely young ages (like, in their teens) from car crashes or cancer; I have experience with too many friends and family who have been sexually assaulted with no punishment brought to the perpetrators; turning on the news details some new instance of injustice in our world.  And of course, my sister never got the chance to talk (she’s non-vocal too).  In those moments, my faith and my family and friends help me, too.

Nadjah: How did you deal with that?

J: After my cousin died of cancer, I stopped going to Mass, as if that had somehow affected her diagnosis.  When I finally went back for the first time after a year, I sat in the back row, and cried for most of the service.  I’ll never forget that day and the powerful feeling of knowing I always had God; He’d never left, He’d never forsaken me.  Whatever people’s religious feelings are, I believe we all have something bigger than ourselves to which we hold when we are overwhelmed; for me, my faith was that ‘something.’

Nadjah: How did you explain autism to your friends and family?

J: Most of my friends and family are adults now, so they understand that autism affects the brain in a way that interprets sensory stimulation differently.  To anyone younger, I explain that they have the same senses we do, but they may be heightened or lessened; they may hear something a mile away, or they may feel a push as only a tap.  Explaining the differences in sensation usually does the trick.

Nadjah: Has life changed from when your sister was younger until now?

J: Yes, definitely!  She has fewer ‘temper tantrums’ the way she did when she was a kid, but she can still be violent by pinching, hitting, or pushing someone.  A couple years ago, she was diagnosed with bipolar and clinical depression, so there was a really difficult time when she was exhibiting much more severe, violent behavior than she ever had.  Thanks to some amazing doctors, the diagnosis is under control, but it took a long time and was extremely taxing on all our families.

I wrote a book on growing up with a sister with autism, and ever since then, I’ve had random people I didn’t know email me telling me that they appreciate my story and that they’ve shared it with a special Sibling they know.  Along with friends and family who supported me the whole way through, of course.  I think, once I started seeing my sister’s condition as part of my Life’s inspiration, I was able to change my mindset about living a meaningful Life amidst so much adversity.

Nadjah: Thank you so so much. I feel that you can be my sibling mentor in a sense. I have started a Facebook page, hoping to connect there with other AuSome siblings, until my page is up and running.

If you have anymore questions for me I will gladly answer. Thank you so so much Jackie.

Jackie: And thank you, Nadjah!  I’d absolutely love to keep in touch, and you bet!  I look forward to it! 🙂

Was Norman Bates Autistic?



Her face wrinkled a little.  “So,” she asked me, “is my son going to become a psychopath?”

I took her hand and looked into her eyes, “Of course not.  Not if we have anything to say about it.”

This was a crucial turning point; I knew I had to dispel ANY doubt in her mind as to her child’s propensity for evil.  This was a case for the partner, not the pragmatist.  I couldn’t pull the usual “Jackie” tricks and objectify her doubt away.  I didn’t dwell on the differences between psycho- and sociopaths, and point out that a sociopath was probably what she imagined as the news segments played in the background.  I had to be the voice of gentle reason.  I didn’t tell her that her husband’s tendency to yell and shame her son wouldn’t help his growing anxiety in the face of others’ rejection.  I didn’t tell her that I’D TOLD HER SO, that her tendency to indulge her son’s every whim was at the core of his massive weight gain; that it was bound to decrease his confidence in opposite proportion to his ballooning stomach.

No — I had to pull out my best behavioral training to get her past this stream of consciousness.  I had to emphasize her positive thinking, the reinforcement of the wonderful artist that this boy was becoming.  There could be no more shaming, and there could be no more shaming of these parents’ shaming of their son.  Not if he was going to stay away, away from the violence and the guns and the anxiety and the rage.  Not if I had anything to say about what we had to say about it.


Hers was a question I am asked too often by parents of my clients.  News anchors report the latest strings of deadly violence — via guns, trucks, bombs, or bare hands — and they look at me with the same desperate pleading — Do you think he was autistic?  Do you think MY child has what he has?  Do you think he’s going to kill ME like that??  I was once asked, “Do you think Norman Bates was autistic?” and almost laughed at the mention of my favorite horror movie, before realizing this mother’s hidden fear was that she would end up as the skeleton in the wig!

Let me be clear: Norman Bates — aside from being insane — was fictional!  I’m pretty sure Alfred Hitchcock was not considering the notion of sensory and behavioral deficits when he was creating his masterpiece.

But I have a troubled mother in front of me with very real doubts, despite Mr. Bates’ fictitiousness, so I quickly have to turn the train of thought around and draw her attention back to the behavior strategies we discussed.  In a completely uncharacteristic fashion, I don’t even care that many parents are only starting to listen to me because of a tragedy that happened thousands of miles away.  I only care that they are listening to me, that they stop screaming at their child, that they stop comparing him to their other children and other people’s other children long enough to see the beautiful personalities unfolding before their eyes.  I need them to see who their children really are, before they crush the butterfly wings before being given a chance to fly.

But I’ve seen the other side, too.  I’ve seen the child who cannot empathize.  I’ve seen the child who’s self-awareness places him in that painful space between ‘daring not to care’ and ‘caring too much,’ and I know he can swing either way.  There are places that behaviorism cannot go, situations I cannot touch, no matter how desperately I want to change the momentum I see before me.  If the right role models aren’t in their stations in time, ready to help, then I can see myself having lied to many women who’ve asked me, a desperate pleading in their eyes, The news reported that murderer might have been autistic . . . do you think MY kid will end up like that??

The best-kept secret of my job — of my field, really — is that it’s not just about the kids, it’s about the parents.  My job is not to tinker with a child’s brain like a mad scientist, but to arrange and rearrange environments that include the parent’s teachings and methods of raising their children.  I have been demanded to leave the premise of a household where I went too far and told the parent they were standing in the way of their child’s pathway to success.  The biggest lesson I have learned in the face of so much violence in our world is that the parent-child relationship is one that cannot be undervalued or overlooked.  I see posts all the time, bemoaning the state of mental health in our nation.  My only answer to their questions is, “How did the parents treat the issue of mental health in their homes?”  I will lie to parents now, if only to keep them on the side of their children instead of against them.

Thankfully, I have seen the opposite.  I have seen the wonder that occurs when parents and children are beautifully in step, sharing interests as if no diagnoses existed between them.  I have seen parents lose sleep, I have seen them lose homes to in-laws that were denying and disapproving of the parents’ struggles to get their children the help they needed.  I  have seen parents cry when their children hugged them, because they also worried they would become sociopaths, but never dared voice the fear aloud.  And as long as there are parents willing to fight for their children, diagnoses or not, hope springs eternal that people who are autistic will not be labeled sociopaths or murderers.  One day, news outlets will get it right.  One day, people — and I include the medical field in this — will understand what autism is, and that it does not breed animals, but rather, incredible and extraordinary souls.

Telemedicine and Donald Trump


Oh, Donald.

I was driving along one day, listening to one of my favorite radio stations, when the news and highlights segment featured commentary on last week’s Republican National Convention.  A listener then called in and offered the following:

“I mean SERIOUSLY, people want to elect someone with a diagnosis??  He’s got Oppositional Defiant Disorder, he JUST refuses to quit!!”

My face did a little, “Huh, did I miss something?” expression.

Political leanings and opinions aside, I’m pretty sure this listener WASN’T a licensed medical professional.  None in his right mind would risk diagnosing anyone—anyone and/or Donald Trump—via telemedicine on the radio.

What I began contemplating was the justification behind this caller’s, shall we say, opinion.  He believed ‘The Donald’:

(1) had a diagnosable disorder that’s already wrought with controversy in the Health & Human Services field, but that such a disorder was characterized by,

(2) “just refusing to quit.”

I took offense to that.

“Just refusing to quit” could have meant a lot of things to this man, to be fair.  But as he wasn’t a medical professional, and this was in no way a medically-inclined radio station or show, I doubted the presence of much nuance in his frustrated exasperations.

I knew—or hoped—the caller was just looking for a laugh.  What I felt instead was offense at the callousness with which a general member of society can feel justified in ‘diagnosing’ another human being, whom he does not personally know, nor whom he has ever personally evaluated.

My mind immediately turned to Charles Kinsey, a man in Miami who DID EXACTLY WHAT I DO FOR A LIVING.  Charles Kinsey, for those who don’t know, was an unarmed man shot by police as he lay on the ground, trying to calm an autistic man who had wandered away from a group home.  Charles Kinsey and I share job descriptions.  I can (thankfully) count on one hand the number of times I have had to enact an emergency protocol to follow a wandering/bolting autistic person, which sometimes included my own sister.  There are demographic differences between Mr. Kinsey and myself, but even the phrase, “I’m a behavior therapist, I’m trying to help this person, he’s autistic” doesn’t guarantee safety!

But I digress.

The state of mental health in our nation is at a controversial watershed.  We have become so used to the defense of individuals’ behavior on the basis of mental conditions, that even telemedical diagnoses of presidential candidates occurs on the radio.  We want complete acceptance of people’s conditions, but we’re going about it in the wrong way!  What we risk is a callousness, an insensitivity on the basis of desensitization to psychiatric conditions.

We witnessed this with the “R-word,” the word “retarded” used in the derogative.  People grew callous to the condition of mental retardation, they no longer fearfully respected the conditions and interventions necessary for people whose brain functioned differently than their own.

I also grew offended that the justification for this mental disorder was a “refusal to quit.”  I’d like to point out that I refuse to quit!  I graduated with my Masters, got my certification, moved out, became a supervisor, and published a book, all by 25, because I refused to quit.  People I’ve interviewed for jobs, people I’ve interviewed for scholarship recipients, people I’ve befriended, they all describe themselves as having a perseverance that “doesn’t allow them to quit.”  In the face of sexual assaults, women who have overcome great harm will describe their torches carrying them back into some sense of normalcy as the innate desire to forge ahead despite circumstance.  The greatest achievements—from antiseptics to The Theory of Relativity to filtered water to the Tesla—all came from a fierce refusal to quit.  Tenacity and determination are needed in times of distress.  They are what our police, firefighters, and military need as they forge ahead protecting our lives.  How dare anyone patholgize this!

I’m no friend of the DSM-5 methodology, I’m sure that’s no surprise.  But I’m also not a fan of people throwing around conditions and diagnoses like the next big Twitter hashtag.  I would challenge the radio listener’s “diagnosis” of Donald Trump on the basis that ‘Oppositional Defiant Disorder’ is more than simply a “refusal to quit”—what most people would revere as tenacity—because he does something just as dangerous.  He is contributing to society’s overall habituation of mental disorders.  What happens with habituation is tantamount to stigmatization.  In neither case is help for the affected sought, and habituation threatens the serious nature and intervention of a true diagnosable case, simply because people can no longer tell the difference.  Leave the diagnosing to the doctors, even if it involves The Donald.


A Bump(er) in the Road


Fat ass.

That’s what my car used to be.  Until 90 minutes ago.

Zelda Maleficent Jolene Fitzgerald and I became best of (car) buds in 2013, after my grandmother’s reliable and sweet Ford Taurus, Ruby, was totaled by an idiot driver who was too cool to stop at a red light, I guess.  Zelda was born, a metal, Korean-made phoenix from the smoky ashes of Ruby’s airbag.

Zelda, unlike Ruby, is metropolitan.  She’s chic.  Like her namesake, Zelda Fitzgerald, she sees no boundaries between where she is and where she wants to go.  Her middle names come from the Disney live-action remake, “Maleficent,” which spoke all-too-deeply to me about the character development and personal growth that challenges a woman who’s had her power stripped from her.  And “Jolene” is my favorite Dolly Parton song.  Hence.  Zelda Maleficent Jolene Fitzgerald.

And suddenly, today, she was no longer a fat ass.  As of 1:02pm today, she has no rear bumper.

Merging onto Los Angeles freeways is probably tantamount to the coming-of-age ceremonies in Medieval times.  If you make it successfully, you are a full human.  If not, you die.  So merging onto the 5N freeway from the curvaceous 110S freeway has always been an act of bravery, requiring steely nerves, not for the faint-of-gasoline pedal.  Alas, my time had come to endure what countless drivers have before me—the fated big rig collision on one of the most dangerous merging lanes in Los Angeles County.

I don’t completely blame him—he didn’t see me, so he didn’t slow down.  Zelda is such a sporty gal, so she really sneaks by sometimes.  I merged, with enough space between us, but the big rig was just too big.  My rear bumper came off with a heart-crushing sound and a lateral movement like swiping lipstick off my lips with a tissue.  And suddenly, the bumper was gone.  A part of her lies on the side of the 5N freeway, a witness to the Los Angeles metro scene until a lonely city worker comes, picks it up, and takes it to be recycled.  A part of Zelda, now sucked into the Circle of Life, never to be seen again.  Perhaps the metal will make its way onto another car, maybe a luxury car.  I hope she’s reborn onto Rodeo Drive—it would make Zelda’s legacy sweet.

Oh, but the day did not end when the officer said, “Adieu.”  The day had to continue.  It was, after all, only 1:30 in the afternoon.

I filed my insurance claim on the spot, like a good little insurance adjuster’s daughter.  I wrote down the information, the claim number.  My stomach sank a little at the deductible I’d have to pay, but such was the adult life, full of paying for things you really wish didn’t cost you anything.

I drove my bumperless Zelda back to my parents’ after affirming that I’d be able to borrow one of their cars for the time that my gal was in the shop.  Once I got to my parents’, I breathed a little sigh of relief as I plopped down my computer bags onto the couch.  No one was home—they were all out gambling at a casino, party animals—so I strategized the cars I’d have to move to borrow my brother’s blue Elantra, moving it from its last place in the driveway to the first.

But as I walked back outside to retrieve more bags from Zelda, a gust of wind blew through the porch, changing the air pressure inside the house, and the front door shut.

Oh. Crap.

I pressed down on the latch of the front door, knowing full well that I had NOT unlatched it and that it WOULDN’T open, but perhaps hoping THIS time I might have just pressed it hard enough to where it opened on its own.  Maybe it knew my struggle and would just open out of pity?

No luck.

I went to the back gate, where to my dismay, I found the lock latched.  I was standing outside my parents’ house, with my car keys, and no way of getting into the house again.

Or so I thought.

“No, there’s got to be a way . . . I’ll make a way . . .”

I drove Zelda up to the veeerrryyy edge of the gate without hitting the gate, stood on the hood of my car, and reached over the edge of the gate.  I unlocked the padlock, hopped off the hood, and swung open the gate.  Barrier 1, done!  I drove Zelda back onto the curb to make room for the other cars I’d have to move.

Walking to the backyard, I tried the back door.  Drat!  Locked.  But I was not defeated!  God knows I wouldn’t surrender!!!

I glanced at the windows and spotted one without a screen.  Was it . . . it was unlocked!  It stood next to the air conditioning unit, but it was too far from it for me to safely stand and push myself inside.  I’d need something to stand on to hoist me onto the windowsill.

“Think, Jackie, think . . . ”

I saw a set of folding chairs by the patio and immediately knew what I had to do.

I grabbed the nearest one, but was worried about the efficiency of climbing through a window with a long maxi skirt.  So of course, I tore off my skirt like a cabaret dancer, stood on the chair, and pushed up the window.

The window wouldn’t stay open, so I glanced around for something tall and steady with which I could prop it open.  I looked inside and saw my mom’s cookbook nook.  I grabbed the tallest one I could maneuver reaching, vertically standing it up to hold the window up.  I pushed one leg through the window.  The book dropped, but just in time, I grabbed the window with both hands, and held it above my head as I swung my other leg through.  Then I gingerly closed the window.

What an absolutely terrible 90 minutes of my afternoon!  But everything was okay.  I was safe and unharmed, the claim had been filed, and eventually my car would be fixed.  I stood up and took a breath of gratefulness that I was okay.  And then I realized I wasn’t wearing my skirt.  I unlocked the back door and went outside to grab it from the swing where I’d placed it.  Hope the neighbors didn’t see!

A ‘Seismic Force’ in a Red Wrap Dress

wrap dress

Dresses — oh how I loved to dress in dresses!  Five years old, I knew nothing about fashion, but I knew the bigger the skirt, the more fabulous I’d feel.  I wore colorful dresses, pastel dresses, short dresses, hand-me-down dresses, and they always boasted bustly princess skirts.  I’d visit my grandmother, loving her attention as I twirled and twirled and twirled just to show them off to her!

“Mija,” she’d smile, “you’re spinning so fast in your dress!  Be careful or you’re just going to fly away from here!”  I’d drop to the floor like a ring around a rosy, giggling as she clapped and giggled back.

Public policy had appeared on my radar not more than three years ago, when I was invited to a conference on the futures of Regional Centers in California.  From that moment, stars had continually aligned, connecting me with contacts in and around my behavioral world, each offering me a tantalizing taste of policymaking until it was MY turn to talk to THEM, on that rainy Sacramento weekend, discussing how the brothers and sisters of people with disabilities would transform the way this world looked at family support.

A neuroscience major, I’d long practiced telling myself that I was ‘excited’ rather than ‘nervous,’ because the circuitry through the brain is the exact same for both emotions; our experiences of the emotions simply depends upon our labeling of them.  I always felt better telling myself I was excited, not nervous.  And that’s what I told myself in the days leading up to this policy conference — the time spent practicing the speech I believed to be aimed at parents, teachers, and general community members who were interested in a general update to the developmental disability world.

Oh, was I wrong!  I saw neither anyone ‘general’ nor ‘public’ when we stepped into the Holiday Inn’s ballroom arena.  Imagine believing you’re just going to make a run to the grocery store, when you open the door and walk right into a Victorian ball.  I had been raised in the ways of private school; however, nothing could have prepared me for the surprise of seeing the fellow mountain-movers that were making up my audience.

I suddenly felt underdressed — something I hardly ever allow myself to feel, as I’d internalized it as a sign of insecurity — but I felt it then.  I scanned the room feverishly for a sign of hair that wasn’t speckled with grey, but felt a small stone plunk into my stomach; I was the youngest attendee in the whole ballroom.  The other wonderful ladies on our Executive Committee were not much older than I, even though I was the youngest of the four of us, and collectively, we were the youngest by about fifteen years.  Oh, I felt underdressed and babyfaced and over-cleavaged, having attempted to make myself as presentable to the public; perhaps I was showing off a little too much assets in a sea of professionals who would have underestimated my lack of a dinner jacket, because I looked too much like a woman, and weren’t we all reliving the Peggy Olsen roller coaster of Mad Men, just in different hairdos???

So ran my anxious thoughts, but then I heard my grandma, almost standing beside me and not sitting hundreds of miles away — oh her Craftsman home, the stability and steadfast love that shaped me like the flames that present the phoenix: “Mija, I feel like you’re going to fly right out of here!”

I had never felt more powerful as a child than when I was spinning in my ballroom dresses, a childhood princess, ready to fly on powerful wings and pintucks pinned with tucked-in little flowers!  I had inherent power, my grandma told me so.  I’d been practicing, and she’d been priming!

Our speech delivered, our energy palpitating through the room, we curtsied to a round of cheerful applause.  We. Had. Arrived.

Later that night, having celebrated our fame on Twitter (on accounts that weren’t ours!!!), I ran into a Los Angeles contact, one of the instrumental leaders who had sent me flying toward the Capitol years prior — “Sacramento better watch out, Jackie!  You really are a seismic force, taking things by storm in a wrap dress!”

All I could do was grin.


I sit with quiet hands. 


Monday through Friday, I get to play God. That is my job–in a manner of speaking. As a Behavior Analyst, I am counted successful when my clients do as they are told. “Sit down,” “Tell mom,” “Put your shoes on,” “Write your name,” “Keep your underwear on.” If my clients don’t do as I ask, I have to “help” them complete their tasks. I train the Instructors on my team in the art of Tough Love. They have to show the clients they care about them, but will not stand for their bull shit. 

Perhaps this is where my God complex arose. (Note: these statements have not been evaluated by any Behavior Analyst governing body.) My salary, my success, and thus my worth are tied to how well I can exert CONTROL. The beautiful seven-letter C-word. 

Yesterday, one of my most aggressive and manipulative clients brought me tears of joy. We sat at his Clinical Team Meeting, evaluating his incredible progress, when his Instructor showed me some of his work. He had written out the steps to completing his homework (as part of the Executive Functioning curriculum of Sequencing), and the last step read, “I sit with quiet hands.” That’s a key term we in the field use to bring clients to a calm and coping state–better able to comply and less likely to throw something at my head. “I sit with quiet hands.” 

The phrase took on a broader meaning, and I was swept into a metaphorical sea of meaning and God and symbolism and consequence. 

Four months ago, something terrible happened. I’d only experienced watching it play out in TV shows and movies, yet after one life-changing moment, I was faced with experiencing it in real life–in my life, in real time.
I did what I thought best considering the drastic circumstance–called on the savage strength of my favorite female heroine. But I was unstable. I became radioactive, dangerous to my own touch and ideas of how to beat and control what I’d been told was my inevitable dissent into emotional monstrosity. 

I tried everything different than what had previously existed in my normal life, channeling Scarlett O’Hara’s refusal to let Destiny plot her fate without her two cents. 
But I did it wrong. What I used to accomplish with unflappable bravery was now desperate flailing gunshots. Attempts at control backfired because I wasn’t ready to think through my decisions–I simply acted. Hysteria loomed close, exhaustion held me in its grip even though I refused to sleep so I could control slipping into nightmares. 

Finally, after far too long, Melanie Hamilton slapped Scarlett across the face and told her to shut up. She tied her hands behind her back, tied her shoes together, duct taped her to a chair and forced her to listen . . . to herself. Myself. My strength. My Self. The one who inherently knew what to do, the one who never fought against the tide but had always sat and listened to my inner awareness, the knowing that I had exactly what I needed to move my mountains. No more, no less. 

I was reminded to sit, to sit with quiet hands. 

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!