The Behaviorism of Hate

Today, the world witnessed what some might call ‘a white supremacist extinction burst.’

When a young child starts paying attention to items at the grocery store, he can suddenly notice the gleam of all the different items’ packaging, some items of which his parent places in their cart; others, she doesn’t. Perhaps there was one afternoon when his grandfather gave him a delicious chocolate treat, and it had this same outer wrapping as that TV commercial showed, and wait—there it is on the shelf, by the checkout stand! Grabbing for it, the child is rebuked. Father puts it back on the shelf. Mother says, “No, we’re not taking that.” But the child wants it! He liked it then, he wants it now — “I WANT CANDY!” he screams.

We’ve hit a watershed moment. The parent can give in, provide the child with the desired item, OR, the parent can firmly reiterate, “No, I hear you, I know you’re upset because you want it, but you can’t have the candy.”

More often than not, I’m called in to situations because the parents have taken the first route. Giving the child candy, for whatever reason — guilt, embarrassment, indulgence — now sets up a series of learning patterns, a behavioral dance, between child and parent.

More often than not, I’m called in to situations where these “behavioral dances” have gotten way out of hand. What happens when the child screams for candy over and over until, one day, the parent actually says “no,” and sticks to it? From the perspective of the child, this is a violation of their previous contract!

Extinction bursts happen when we realize that what used to work for us no longer does. I get frantic calls from parents, telling me their child is now acting even more violent since we started behavior therapy, acting worse, and (one of my favorite phrases), “completely out of nowhere!” Of course he is! What used to work no longer does. Screaming at a high pitch no longer works, so now, he’s going to see if screaming at a higher pitch, with some good ol’ fashioned bites to boot, does the trick.

The key to knocking out these bursts is consistency. We have to be consistent, or we set up a new pattern for the child, effectively reinforcing her for even worse behavior. The rule must apply, no matter the way the behavior changes. I try to make it relevant to the parent, “What would happen if what used to work for you no longer worked anymore?”

We can observe this in our own behavior during everyday activities — we have our own extinction burts when we engage in road rage, get in fights with significant others, or steal office supplies from work. Suddenly, our environments (and the people/places that make them up) no longer create the behavioral contingencies, the behavioral dances, they used to, even though we continued with the same actions we always have.

Enter white supremacists.

One friend wrote on Facebook today, “I miss the days when everyone agreed that being a Nazi was bad.” An astute commenter noted, “I don’t want to be pessimistic, but we never all agreed that being a Nazi was bad — people just didn’t used to go around expressing it like they do now.” At least, not so much after World War II. So what changed?

A tenet of behaviorism is reinforcement — we do what works for us. After many years of being told “it’s not cool to be racist,” these supremacists suppressed, as much as socially possible, the outright demonstration of their hatred toward others. They would not be met with positive encouragement, i.e. reinforcement of their actions, to keep on doing what they were doing, because in this country, with a progressive outlook, attitude, and national agenda, it wouldn’t be tolerated. And to demonstrate that, a statue of General Robert E. Lee was to be taken down, the name of the park changed to Emancipation Park, effectively wiping off, as these people saw it, tenets of a past they held dear.

What worked for them no longer worked. Staying silent, these ~poor babies~ were witnessing the loss of a statue, the renaming of a park, the “erasing” of their past, and gosh darn it, they weren’t going to take it anymore!

NOW IS THE TIME TO BE THAT PARENT, TO REFUSE TO GIVE THE RACIST HIS CANDY. Now is the time to be that consistent “NO!” that condemns, criminalizes, and calls out their actions for what they are — hate, hate speech, terrorism. Letting them get away with this deplorable behavior, via a lack of legal action or a lack of definitive blame in a tweet, has set a new bar. It has created a new dance. The child is told, “your previous scream no longer works; but this louder one, with the hitting and the kicking, okay, I guess that will work.” Guess what he learned? Guess how far he might try to go next time?

 

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Models Have Problems Too

crying.jpg

Okay, full disclosure, I’m not necessarily a model. But I could be! (Hit me up, Dove.) And YOU could be a model! And you! [Insert Oprah impression here.]

In an environment ~renowned~ for its empathetic approach to certain people’s struggles (I won’t say where or who or when), a discussion arose surrounding stigma toward people’s bodies. “Overweight, obese, large, lard, wide load, heavy, curvy, plump, jiggly, lumpy, bubblebutt,” and just plain “fat” were all given as examples of terms used for bodies of a certain stature. “Oh the struggles overweight people face in such a CRUEL and ASSUMING society!” was the cry of the downtrodden.

“But wait,” offered a dissenter, “there’s definitely a trend of ‘skinny shaming’ going around as well. Just look at Robbie Tripp’s ridiculous post that included a claim that models and actresses weren’t ‘real.’ Pretty sure they’d beg to differ. It’s caught on, somehow, assuming superficially thin people can’t have their own problems, or they’re not as bad.”

“Oh yeah, models have problems. Like whether to eat a cherry- or mint-flavored Lifesaver that day.”

“I mean, sure, they have their own problems, right??” *index finger mimed down her throat* “Bleeechh. Ahahaha!”

Cue some more laughter.

Ooooohhhh was I irate.

Far be it for this behavior analyst to say the fashion and entertainment environments haven’t shaped some behavior and unspoken ‘rules’ about how people SHOULD look, men and women alike. Enter the growing number of campaigns (love you, Dove) aiming to shed a light that anyone medically ALIVE is a real person, whether she be a size 0 or 10 or 26. (No, they’re not paying me, but oh boy, wouldn’t I love them to)!

Real women ALSO have brains, would you believe it?? Shoutout, Tory Burch. Some campaigns have also pointed out that size isn’t the be-all, end-all determinant of perfection. A size 6, able-bodied woman would traditionally be picked over a size 0 woman confined to a wheelchair, or a size 2 transgender model. (Ahh! #AllMeansAll and I love all of you, SmartGlamour!) Especially in my field, I’m always advocating that “real people” exist by virtue of, ya know, being people.

And HERE were others, on the flip side of what entertainment and fashion industries have traditionally sold, reducing the problems of others who didn’t look like them to inconsequential quips. Or worse, reducing life-threatening issues to laughable pantomimes. Granted, this group has their own histories of being bullied and marginalized. But does that give them license to marginalize and bully back?

Spoiler alert: No.

Models and actors are people paid for jobs, like bankers or teachers. Last I checked, it’s our indulgence in their industries that’s kept them afloat. Some #woke organizations are also taking on a greater definition of the role itself — ‘plus-size’ models, special-needs models, LGBTQ+ models. Guess what, models literally come in all shapes, sizes, colors, and textures. Attacking (because that’s what they were doing) thin people as a whole, as a culture or type, does what Robbie Tripp so infamously did last week — objectifies and judges people based on their bodies.

In that room, I would venture to guess 0% of those people were ever personally victimized by an individual model on a set. (Except by Regina George, we’ve all been personally victimized by her.) But in all seriousness, ridiculing or invalidating “models” as a collective group of people whose issues range from “zero” to “meh” creates much of the backlash seen with the popular, but still problematic, “white people problems.”

What’s the behavioral contingency behind all this shaming? Attention from others? Self-soothing of our own problems by making others’ so much less problem-y? Escape from anxiety? Because yes, life is behavioral af.

Of course, the behaviorist in me acknowledges that empathy has so much of a greater response effort than ridiculing. If we feel we have little connection to people, we’re so much more likely to invalidate their feelings, as it raises OUR problems to a priority, both to ourselves and in our social circles. Here’s the thing, though — invalidating ANY problems of ANY group reduces empathy. Period. That’s it. Full stop.

“Nope, she’s a murderer.”

crime scene tape

I’m a lover of true crime.

“And the award for ‘Greatest Understatement in a Personal Narrative goes to . . .”

I have been one since I was a little pre-tween, sneaking into the kitchen to watch early episodes of CSI: on my family’s meager television set. Now, with a world of podcasts thrilling my ears to the sounds of secrets, screams, and murders most foul, I all but live in a world constantly reinforcing this cathartic hobby. Is it a hobby? We’ll say it is. My hobby is ‘staying sexy and not getting murdered.’

But as a true crime lover, a Murderino if you will, does my macabre interest also spell the end of my faith in humanity??

Okay, why the dramatics? Here’s what happened:

As a Behavior Analyst, I supervise behavior interventions for people with special needs and the therapists who run those programs. Today, my behaviorist underling and I went on a walk with our 10-year-old male client and his mother to Target. En route, our client (we’ll call him Tituss B.) began to have a meltdown. IN. THE. MIDDLE. OF. THE. STREET. He fell to the ground, started biting his hand, kicking his legs toward his mother, therapist, and myself, while he screamed FOR ALL THE WORLD TO HEAR, “No don’t touch me! Let me go!” Oh, and threw leaves at us (for good measure, I suppose). We were SO CLOSE, almost to the block where Target was, I could smell my money evaporating already.

The therapist and I went into “Safety before Sweetness” mode, bolstering him under our arms and carrying him across the street. Well, trying to. Little booger kicked his legs out in attempts to trip us as we walked along. Still screaming, by the way. And at that moment, a middle-aged woman driving toward us asked from the driver’s seat of her minivan, “If you want me to give you a ride, I can take you wherever you want, and you don’t have to worry about struggling with him.”

As the Supervisor—and the MOST legally liable person there—I immediately thanked the woman and rushed the entire party across the street as quickly as I could.

“Aww, that was sweet of her,” my therapist underling said, wiping sweat off his brow, clearly wishing I’d taken up the woman on her offer so we wouldn’t have to endure Tituss’ tantrum.

“Oh my gosh no, murderer in a minivan, tale as old as time.”

“What??” he asked, “but she’s just one woman, and we’re four people!”

“Yeah but she sees we care about Tituss and could easily control us by threatening to kill him!”

He looked at me like I’d pushed the Pope under a tractor.

In that moment I wondered, “Wait . . . was I overreacting??”

Most people who know me might say, “Probably most definitely.” But that’s what immediately came to mind! Murderous people and their murderous cars! I mean, haven’t we heard that story a million times?! Starts with “T,” ends with “ed Bundy?”

Or.

Had I been jaded by all the stories of murderers and unsuspecting victims? Had warnings about accepting rides from strangers gone WAY too far, and projected onto a situation that was simply altruistic?

Let’s think. What’s the likelihood that this woman IS a serial killer who wanted to kill the four of us? Two of the adults had clearly visible, official-ish looking badges. The mother was of average height and weight, and this 10-year-old boy was clearly in distress. And violently acting out. Would a serial killer take on such a risky situation, the definition of unpredictable, uncontrollable? Thinking back, I can’t imagine she would! If she were alone, that is . . .

Who knows. Has all this true crime made me see monsters under my bed, or was I simply more observant and in tune with a (more) potentially dangerous situation? In some ways, I’m glad I’ll never know the answer.

Denial River

Nile

I have VERY strong feelings about denial—and no, I don’t mean the river in Egypt (lol, puns).

In as ~gentle~ of a way that I can, I try explaining to my clients’ families that denial only serves as a temporary band-aid, a fake escape from whatever might be unveiling before them. Parents and families with kids who have special needs may be in denial about their kids’ capabilities at present, their kids’ capabilities in the future, MY capabilities about what I can do about their kids’ capabilities in the future, and other such concerns.

I love Olivia Pope’s wardrobe, but no, I’m not that kind of “fixer.” Oh, but can I get her white coat though??

At my core, however, I’m afraid of denial.  It’s a tempting lull into a false reality where we can convince ourselves of anything! We can convince ourselves that what matters to us or our children no longer does. We can convince ourselves that the world has stopped to allow us to wallow in some discomfort.

Every day, I walk into situations full of denial. Families resist and refuse to make changes in their home environment because their kids should just know what the rules are. They convince themselves it’s their kid who’s the problem, denying their own roles in shaping future behavior. It’s denial that continues spurring this whole anti-vaccination nonsense!

“Jackie, do you believe this whole vaccination conspiracy theory thing?”

“Omg that’s just ridiculous. I can’t believe there are people out there who believe it.”

“THANK YOU! It’s so refreshing to hear a behaviorist say that vaccines cause autism.”

“Wait, wait oh no, wait WHAT??”

“This anti-vaccine conspiracy theory is crazy.”

“Wait, oh no, vaccines DON’T cause autism. Ohemgee, um, your kid’s not vaccinated? HE COULD DIE OF MEASLES!”

“But you work with autistic kids, you know. Kids could get autism.”

“THEY COULD DIE OF MEASLES AND BE DEAD, THOUGH.”

I’m constantly asked by new clients’ parents if I have any kids myself. UGH I hate that question! If I DID have my own kids, they’d be completely different! They wouldn’t mirror what’s going on with their kids, so as a comparison sample, they’d be shaky at best. But because I DON’T have my own kids (they laugh and say, no, my cats don’t count, whatever), I’m seen as some twentysomething Millennial who thinks she can just come in to their house and tell them what to do.

But I am, though.

I AM a twentysomething, a Millennial who came of age in the 2000s, who studied herself into the wee hours of many mornings, who earned the degrees and completed the trainings that mean, yes, I can tell them what to do. Because I study behavior. Because I’m not in denial about what behavior patterns look like, what they can predict and tell us about future behavior patterns.

Does this make it hard to do my job sometimes? Duh. Parents don’t like being told how to parent—go figure. But I’ve had to check myself on the resistance these parents initially show me.

I’ve been asked by many professors and other clients, how do I address parents’ denial? There’s no set way, but the first thing any behaviorist must understand is that the denial is a symptom of underlying emotional conflicts. The parents didn’t just wake up one morning and decide, “I’m going to make myself think that my 13-year-old child, who can’t use more than 10 words to communicate, will graduate from medical school!”

Behaviorists can get sticks up our butts when it comes to the emotional conflicts underlying many families’ issues. We ourselves can get into our own denial, thinking that the world turns in the same logical, behavioral equations as the ones we use in intervention plans. That’s something I’ve tried imparting to the therapists on my teams—the training and mindset that enable us to see patterns in people’s behavior is trained. It’s not innate, and it CERTAINLY isn’t as simple when one’s own child is thrown in the mix.

Professionals in our field need to remember that denial is simply a coping mechanism against the harsh realities of what their lives and their loved ones’ lives suddenly become. Denial is absolutely dangerous to a child and family’s progress, but the onus also lies with us professionals. When we create such binary worlds for these families, with stark and sharp realities harsh and cold, families’ defaults will be a retreat into something that doesn’t hurt to the touch. And then professionals complain that families won’t meet them halfway—but have WE met the family halfway? Or did we draw a black-and-white picture, a stoic portrait of a devoid future because, well, it’s easier for us that way?

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

gaston-belle

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! 🙂