Sexual Abuse in the I/DD Population

natalieTalia Herman for NPR

This week, NPR is debuting a special year-long investigative series about the incidence of sexual assault against individuals with Intellectual/ Developmental Disability. One of the stories highlighted in today’s All Things Considered is from CaliforniaSibs co-founder Julie’s sister, Natalie.

The stories shared in these profiles can be heart-breaking and infuriating. They are hard to listen to and read. It is important that we all take the time to open ourselves to this information.

As uncovered in this series, the incidence of rape for an individual with I/DD is seven times higher than the incidence for someone without a disability, and those numbers are almost certainly under-reported. Many of these individuals do not have a voice. Those with a voice are often challenged and not believed. Those that are believed may not find justice. Those that achieve a guilty verdict may not receive treatment or realize any compensatory changes.

Please take the time to listen to or read these stories, and gain a better understanding of the scope of the problem. The next time you have an opportunity to advocate for someone with I/DD, or to participate in the #metoo or #timesup initiatives, lend your voice and your privilege to those who remain voiceless.

https://www.npr.org/series/575502633/abused-and-betrayed

Before 2017 comes to an end, we want to say…

Happy New Year, Sibs!

As this year comes to a close and a New Year is about to greet us, I want to thank our CaliforniaSibs Community for all the support this past year.

We are a 100% volunteer run organization with presence currently in the San Francisco Bay Area and Los Angeles. I am excited to announce that in June, we welcomed a new board member, Nikki, who is very active in the Central Valley. She brings us her energy, work experience and sibling experience.  Welcome Nikki!

In alignment with our Mission, we offered Sibs support via Meet Ups in NorCal and SoCal with 57 registered members. We also spoke at a USC Undergraduate class, had a presence at the Best Buddies Walk in San Francisco and attend the bi-annual National Sibling Leadership Conference in Hartford, Connecticut.

This past year we also connected with Brian Donovan of Kelly’s Hollywood. Kelly’s Hollywood is a documentary about Brian’s relationship with his sister Kelly, who has Down syndrome. Personally, I found the movie captivating, as the relationship they shared is so special and relatable.

We want to thank you again for your support. Our organization would not be able to run without the Sibs Community. You can help us continue to drive our growth by making a tax-deductible donation to support the infrastructure needed, as well as important new programs in 2018. If you have time to offer, please help us build our resources, or better yet join a Meet Up or get involved with future planning!  You can reach us at info@californiasibs.org.

Have a very happy New Year, 2018 is a big year for us!

Julie Payne-Neward
President & Co-Founder, CaliforniaSibs
The California Sibling Leadership Network, a 501c3 nonprofit

Photo by Kaique Rocha from Pexels https://www.pexels.com/photo/sparkler-new-year-s-eve-sylvester-sparks-38196/

 

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 🙂

‘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?

psycho

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.

On the Last Day of Autism Awareness Month

Dear Sib of someone with autism:

Good friends of mine introduced me to a new TV show: Flashpoint. It features a Strategic Response Unit (SRU), an elite police team that responds to uniquely stressful situations. One episode features a 17-year-old boy, named Paul, who plans an elaborate gun-buying scheme. All this culminates in Paul holding a girl at gunpoint. In order more effectively disarm Paul, the team leader gathers information from his troubled mother and considers the possibility that Paul might have autism. He also discovers that the tight relationship that Paul had with his sister, Franny, had recently turned sour.

Let me skip some details for now, but don’t worry. Everything turns out fine. Paul is disarmed; the SRU team rescues the victim; the mother learns that her son is not a psychopath but has a condition that, with the right supports and services, would not hinder him from leading a fulfilling life. The writers of this episode deliver an entertaining show, but, to be honest, I was disappointed. I wanted to ask the writers: why did you leave Franny in the dark at the end? Doesn’t she deserve a chance, as the Sib, to learn the things that her mom learned about Paul?

As a Sib with a younger sister with autism, I am aware of the progress society has made in understanding autism, developing tools for earlier diagnosis and intervention, and passing legislation that moves from institutionalization to community integration. This all contributes to real and measurable benefits for those with autism. To say the least, this is worthy of celebration.

However, my fellow Sib, society still habitually forgets the role we play in the lives of our brothers and sisters with autism. We cannot let this remain as the status quo. We were the ones in the playground with them. We were the ones who fought with them, whether it was for toys or our parents’ attention. As adults, we are the ones teaching them how to manage money, how to think about the opposite gender and how to get a job. We deserve a chance to be heard and taken seriously. Also, it is in society’s best interest that we are equipped to invest in our brothers and sisters in the unique way that only we can.

On the night of the last day of Autism Awareness month, I tip my hat to you, Sib.

You are awesome. Continue doing what only you can do.

A fellow Sib,

Eunice