Guest Writer 6: Jessica

Hi everyone!! I hope you all are well had a great week! Today I have a huge treat for all of you. This week's guest writer is Jessica Leving, the founder of The Center for Siblings of People with Disabilities and published author. Jessica has created an amazing resource for siblings of people with special needs and is doing amazing work every day. She has an amazing story for this week!! Enjoy Jessica's entry.

-Alex

Growing up as Billy’s Sister

By Jessica Leving

I remember very clearly the night my brother, Billy, was diagnosed with autism. I was eight years old, and had been at ballet class that night. When class finished, I went to look for my mom outside, but my grandpa was there to pick me up instead. He quietly explained in the car that my mom had gotten some bad news and wasn’t feeling well.

When I got home, I ran upstairs to my mom’s room, but her door was closed. I could hear her crying inside. It was days until she finally explained to me: Billy had autism, a disability that would make things harder for him as he grew up.

I didn’t totally understand what that meant, since Billy looked like any other two-year-old to me, but I did understand that everything in our lives was about to change. Our days started revolving around Billy’s doctor appointments and therapy sessions, and my mom had a parent support group she went to once a week. I often wished that I’d been able to have a support group, too, because I had no idea what was happening except that everyone was very worried, and I felt very alone.

As Billy got older, the effects of his autism became more noticeable. His peers were rapidly developing language skills and running around playing with each other, while he still had only a couple of words, and preferred to stay in his room pushing a model train set back and forth. I would try to play with him, but I always had to adapt to what he wanted to do—which was usually playing with his train, or re-enacting scenes from movies.

Eventually, I began to morph into a role that I now know many siblings find familiar: that of helpful, cheerful caregiver. More than sister, I became Billy’s Mini-Mom, occupying much of my time with trying to put a smile on his face—and trying to take some of the burden off of my parents.

It wasn’t a conscious role—and it certainly wasn’t one anyone ever asked me to take—but somehow I sensed that this was my duty as Big Sister. If my mom was worried about how Billy was doing in school, or what kind of accommodations he was getting, I was worried, too. I wanted to be at all of his therapy sessions and IEP meetings. I wore my role with pride, and didn’t want any decisions being made about Billy without what I felt was my very helpful input.

Given how much of life revolved around my brother, and how worried my family constantly was about him, I also had an innate understanding that I had to be the Easy Child. Again, no one ever said it to me directly—but I felt in my bones that I had to get good grades, stay out of trouble, and avoid adding to the already very high stress level of our house.

If I ever felt an inkling of anger or jealousy bubbling up, I immediately quashed it and instead felt consumed by guilt. How could I be jealous of my disabled brother? What kind of a person would be resentful of a sibling with autism? Not one that I wanted to be, that was for sure.

Then, in high school, an incredible opportunity was presented to me that changed the course of my sibling experience. My brother had been receiving therapy services at a local clinic, and one of the clinicians mentioned to my mom that they had a lot of parents looking for resources for siblings at home who might also be struggling.

Knowing that I loved to write—and was looking for a good community service project to help with my college applications!—my mom asked if me if I might want to help them out by putting together a little picture book about my experience growing up with Billy.

And thus, Billy’s Sister was born. I teamed up with a friend who liked to draw, and worked with the clinic therapists to flesh out what aspects of my sibling story might be most helpful. Together, we created something that remains one of the only books of its kind: an illustrated children’s book that talks about ALL aspects of sibling life—even the tough stuff.

In the process of writing it, I also uncovered some of the truths written in the book for MYSELF for the first time. Never before had it occurred to me to say, you know what? Yeah, Billy gets special treatment sometimes, and it sort of sucks. Now, not only was I given permission to say that out loud, but I was encouraged to share it with other kids in order to help them validate and process their own feelings. Truly, the process was life-changing.

At first, we simply had the book bound at Kinko’s, and made a few copies for the clinic, as well as some extras for family and friends. After that, I went away to college (and yes, I think it did help with my applications!) and for years, the book project faded to a mere memory of a fun family project.

Then, in 2019, I thought of it again one day, and decided to do a quick Google search. Surely, there were other children’s books for siblings by now, right???

Astonishingly, I discovered that resources for siblings—especially young siblings—were still few and far between. Though a handful of similar-seeming books were available, I didn’t feel like any of them resonated with my experience—or dealt as openly with the “tough stuff”.

So, I decided to publish my book on Amazon.

I wasn’t prepared for the outpouring of emails that came next. Shortly after the book became available online, requests from parents—as well as adult sibs who had stumbled across it—began streaming in, looking for more.

What else could parents do to support sibs? What other programs were out there? Were there any books for middle schoolers? How about books for siblings of kids with physical or medical disabilities, or mental illness? Everyone thought I was the expert—but I had no idea!

Clueless but eager to help, I decided to start a podcast to explore this issue. I researched other sibling organizations (like Sibshops and The Sibling Leadership Network) and interviewed their staff for the show. I hosted therapists who work with sibs of all ages, researchers who are working to gather more data on long-term effects of sib life, and of course, siblings themselves.

I soon realized that I wanted to do more. Together with a group of passionate friends and allies to the cause, I started The Center for Siblings of People with Disabilities, a nonprofit devoted to raising awareness of sibling needs, and creating more resources to help sibs feel less alone.

Today, we offer a companion workbook alongside Billy’s Sister to help kids process their feelings and spark conversation among families. We also offer workshops and presentations for school and community groups. And we have a lot of big dreams for the future—including more children’s book that tell a more diverse range of stories!

Ultimately, I feel like in this work I have found my calling. It’s immensely rewarding to know that sharing my story has helped other sibs—and I’m also immensely grateful that telling my story, and re-telling it, and processing it for myself again and again at different stages in my life, has allowed me to help myself, too.

Being a “sib” has helped me to become a kinder, more empathetic person. I’ll always love my brother and be right here to continue being his advocate and caregiver when needed.

But in this work, I’ve also learned that you can’t truly help others until you’ve first taken care of yourself. I’ve learned that tending to—and even just acknowledging!—my own feelings, and learning healthy ways to express them, makes me a happier, healthier person. Admitting vulnerability, and connecting to resources and community, makes me stronger.

And at the end of the day, it makes me a better sister, too.

-Jessica Leving