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. These women became my tribe.
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 tribe. 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 Tribe Diaries,” and Kate Swenson with “Finding Cooper’s Voice,” and I not only didn’t have to explain why I felt driven to serve these 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 set up a Facebook group where moms could video chat one-on-one and in groups. Within this group, moms have found their new “besties” and gratefully shared with us that the personal connections saved them from feeling completely alone. We are now birthing the largest special needs moms community-building, emotional-support retreat the country has ever seen, which will take place this fall!
It’s okay to make new friends and keep the old. It’s beneficial to have different tribes over the span of your motherhood, or even multiple tribes 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.
For more information about the Special Needs Retreat in Fall 2020, please go to Labeled and Loved.
For stories that will bring you big picture perspective in the midst of your everyday struggles, subscribe to the United in Autism blog HERE.
Julie Hornok is an award-winning author, inspirational speaker, and advocate for autism. She started the non-profit, United in Autism, to bring hope to autism moms through emotional support events. Her first book, United in Autism: Finding Strength Inside the Spectrum (foreword by Temple Grandin) is available at UnitedinAutism.com or Amazon. Join her United in Autism Facebook Community for daily support. UnitedinAutism.com