Loneliness can run deep when sitting on the floor with the little people you love using your body as a human jungle gym, or even while surrounded by a group of moms you call friends.
My passion project is connecting moms with other moms, who are walking the same, often lonely, path with special needs kids. Every mom deserves to belong in a non-judgmental space where she is completely accepted and understood with no explanation required.
Although I didn’t know it at the time, my journey helping moms began the moment my beautiful, healthy, big-brown-eyed daughter was born.
At first, it started so slowly. All babies got fevers. All babies got ear infections. “Right?” I began to wonder. I felt a nagging uneasiness in the pit of my stomach that there was something wrong. Was I imagining her to be worse off than she actually was because I was a nervous, over-protective mom? “Everything is fine,” her pediatrician assured me. “This is nothing more than a string of normal childhood illnesses.” I pushed down my gut feelings and trusted those who had more knowledge than me.
Then she began waking up from her naps drenched in sweat, tightening her whole body and screaming in pain. Followed by diarrhea, rashes, more fevers, more ear infections, and a permanently snotty nose. She began flapping her arms, walking on her tip toes, banging her head on the ground, lining random things up, repeatedly opening and closing cabinet doors, throwing tantrums, and even losing the little language she had. Finally, she withdrew into her own world and became isolated from everyone who loved her. I would stand right in front of her, screaming her name, but there was no response. Her body was present, but her mind was somewhere else. The doctors called it autism.
An enormous weight of isolation was placed on my shoulders. Somehow with this diagnosis, I no longer fit in the community to which I once belonged. There were no more playdates or trips to the mall with my mommy-friends. Every hour of every day was now filled with a myriad of therapies, hours of meltdowns, and the intensity of remaining alert around the clock to keep my daughter safe from herself.
I wasn’t shunned by my friends; I just no longer fit in. I became overly sensitive to our differences and despite their efforts to maintain our friendship, I subconsciously distanced myself.
In the never-ending search for information to help my daughter, I found myself sitting in an unfamiliar living room with twenty strangers who instantly felt like old friends. They were smart, strong and most importantly, they completely understood the hardship I was living through without me saying a word. These women saved me. They became my sisters.
The feeling of being completely accepted and understood is the basis of true connection. I soon realized I could use my pain to help others and begin connecting other moms of kids with special needs through community-building, emotional-support events.
For ten years, I spearheaded these events and traveled all over the country to help other organizations create events to connect their local special needs moms. I was truly living my purpose, so why did I sense the all too familiar feeling of loneliness creeping up in my soul again?
In a lightbulb moment, I realized I needed to find another sisterhood. I needed to immerse myself in friendships with women who were also creating connection for special needs moms. I met Dr. Lisa Peña with “The Mocha Diaries,” Stephanie Hanrahan with “Tinkles Her Pants,” and Dr. Regina Crone with Therapy and Beyod. I not only didn’t have to explain why I felt driven to serve special needs moms, but our collaboration brought something beautiful I could never have created on my own!
Together we formed “Labeled & Loved” with the sole purpose of finding true connection within mothering special needs kids. We created both online and in-person ways to connect and feel isolated in the midst of this tough journey. We are now birthing a special needs moms community-building, emotional-support retreat in San Antonio, Texas this spring!
It’s okay to make new friends and keep the old. It’s beneficial to have different sisterhood circles over the span of your motherhood, or even multiple circles at the same time. No one friend or group can satisfy all the layers of your life. There is beauty in embracing the different seasons and friendships that come and go with them.
Julie Hornok brings over sixteen years of autism industry experience as a parent, behavioral program facilitator, global interviewer, speaker and award-winning author. She uses lessons learned hard from raising her three kids to connect and create life-changing events for special needs families.