The time has come. I always knew it would. Being raised a forever-giving, forever-guilty Catholic, I HAD to learn to be okay with saying this: I need to prioritize my family.
I remember it like it was yesterday. More than eight years ago, I was standing in a dark parking lot after an advocacy meeting, talking to Sheraden Nicholau, then Bay Area Manager for the California State Council on Developmental Disabilities. I told her I was going “all-in.” But I also told her I had a ticking clock. I knew there would eventually come a day when I would have to “excuse myself” and turn my attention back toward my two daughters and my husband.
That day has come.
What I didn’t expect was that advocacy would find me in an entirely different way.
My daughter has an IEP under “specific learning disability.” She has dyslexia. For years, we were told she was receiving the services she needed. We sat through meetings hearing about “progress,” interventions and trials. Then, near the end of sixth grade, we really learned the truth. My husband and I went all hands on deck. We hired an advocate. We learned a new system and a new language- still learning. And for the first-time experienced just how much time, money, knowledge and persistence it can take for a parent to make sure their child receives what they are legally entitled to: a free appropriate public education (FAPE).
After all these years, now I know what it feels like to be the parent advocate.
We ultimately removed our daughter from her school and found an amazing charter school with a smaller environment and a homeschool day on Fridays. I’m also making changes in my own career so I can work closer to her, be more available to my family and help provide the resources she needs.
Which is how I find myself, of all people, having to say this to my sister. “Natalie, I love you. But right now, I need to focus on your niece.”
In 2012, I learned that my sister, a woman with high support needs, was a survivor. That changed me.
For so much of my adult life, my advocacy has been wrapped up in Natalie—thinking about her future, her safety and how I would maintain a career while someday taking on more responsibility for her care.
Over the past 12 years, I’ve tried to blaze a path for siblings like me in California. I help start CaliforniaSibs, the California chapter of the Sibling Leadership Network, after a realization hit me through tragedy: One day I will be responsible for Natalie. Who do I trust? Am I the only person thinking about this? Wait—there are other siblings like me. Where are they?
That work grew beyond California. we partnered with the National Sibling Leadership Network and OregonSibs on SibThrive- a 6 week co-hort for Sibs to have support an find community , and I’ve been developing OSK with the CA team, a hands-on guide built specifically for siblings in California.
Since then, I created The Natalie Project. I produced an award-winning film with award-winning director David F. Fortune. Alongside Dr. Allan Colbern and an incredible team, I helped publish the Disability, Deaf and Abuse Survey through ASU. We started a petition. We created a guide for families. We built tools that did not exist when I went looking for them.
This work also took me places I never expected to go and introduced me to people I never imagined meeting—including Tarana Burke and Michael Kutcher. Each experience reminded me that personal stories can become part of something much bigger.
I was named Alumna of the Year by my high school—an honor that meant more to me than I can adequately express. (Go Cougars!)
And now I’m tired. That’s difficult for me to admit. My greatest fear about stepping back has always been: What happens to everything I built? Did I throw it all away? Or is it simply sitting on a shelf, waiting for another season? I’m choosing to believe it’s the latter. My daughters need me. My husband needs me.
And I need them. And maybe these past 12 years weren’t preparation only for advocating for Natalie or for other siblings and families. Maybe they were also preparing me for this moment—to advocate for my own child.
So I’m stepping back. Not forever. And not because I’ve stopped caring.
The advocacy will remain lightly threaded through my life while I focus on my family and myself. The work we’ve already done still exists. The tools are still there. The people I’ve met and everything I’ve learned are still part of me. This isn’t throwing it all away. It’s putting it on the shelf for a while. And one day, when the time is right, I’ll take it back down.
Selected work and resources:
CaliforniaSibs: www.californiasibs.org
SibThrive: https://siblingleadership.org/resources/sibthrive/
The Natalie Project film: https://www.thenatalieproject.org/film
Disability, Deaf and Abuse Survey: https://www.thenatalieproject.org/disabilityandabusesurvey
Guide for Families: https://www.thenatalieproject.org/manualforfamilies
Petition for federal accountability: https://www.change.org/p/demand-federal-accountability-for-publicly-funded-disability-programs-metoomvmnt
Julie Payne Neward
As a Board Member and Co-Founder of the California Sibling Leadership Network, I am passionate about building a network of information, support, and advocacy resources for siblings of individuals with intellectual and developmental disabilities. I also serve as a Councilwoman and Member of the Administrative and Legislative & Public Policy Committee at the State Council on Developmental Disabilities, where I advocate, promote, and implement policies and practices that achieve self-determination, independence, productivity, and inclusion for Californians with developmental disabilities and their families. I leverage my skills in collaboration, problem-solving, communication, and relationship-building to advance the mission and vision of these organizations.
