When our daughter was diagnosed with autism as a toddler, the last thing I wanted to do was find a support network. That may sound strange, but it was how I truly felt at the time. I knew there was so much information I needed to get up to speed on, but after all the doctor visits and home therapy and just trying to work with our daughter to do things like make eye contact and speak, while not ignoring her twin brother, I had no energy left.
Another problem was that the first few times I began to search “autism” on the Internet, I was bowled over by the sheer volume of differing opinions. Articles that tried to explain it, celebrities that claimed to know how to cure it, and message boards filled with other people’s struggles and horror stories held no appeal. I wasn’t finding anything helpful or hopeful, so I stopped looking.
In our Brooklyn community (where we lived at the time) I had plenty of great parent friends, but I was the only one navigating life with a neurodiverse child. They were sympathetic and included our girl in absolutely everything, but at the end of the day there was no way they could really understand what we were going through. In retrospect, it would have been nice to connect with other parents navigating the same thing, but at the time, I just wasn’t ready.
EXPANDING THE CIRCLE
Sarah Kernion, an NJ mom of three, neurodiversity advocate and speaker, and host of the Inchstones podcast, had a similar experience.
“I did not have a huge circle in 2017 when Milly was first diagnosed,” she says. “I leaned mostly on the love and support of my best friends who did some behind-the-scenes work for me—finding mom friends of friends who had a child on the spectrum. It began with a few phone calls to moms I literally didn’t even know personally.”
And just as I clung to my “regular” parent friends and resisted seeking out autism groups, Sarah also initially resisted finding her tribe.
“I was flooded with such seesawing emotions of grief and loss, and also managing three kids under the age of 5,” she says. “I did a lot of compartmentalization at first just to keep my mind from spiraling.”
Everything changed when Sarah started sharing her parenting journey on Instagram @saturdaysstory, and she began to find and connect with other moms virtually. “Once I realized that when I shared more of my journey with a new mom friend or someone reaching out on social media, my pain and sadness began to lift,” she says.
For me, the change happened when we moved to New Jersey. We had several play dates with a little boy in my daughter’s class at her new school, and in the mom I recognized so many of the same things that had recently become part of my personality—the hypervigilance around my daughter due to safety issues, the need to constantly find tricks to help her self-regulate, and an overall desperation to push her to learn and socialize, all while accepting her for the person she is.
FRIENDS WHO ‘GET IT’
It was a lot! And in hindsight, I wish I had found others in my same boat sooner.
“All women are so primally wired to ‘tend and befriend,’” says Sarah, talking about the benefits of having a network. “I quickly saw the mental health benefits myself, having not one but two children with non-speaking autism. Venting when you have a typical kid is one thing; venting with a fellow special needs mom in the trenches hits the dopamine center more effectively.” In many ways, other parents of kids with disabilities just “get it” in a way that even your closest friends and relatives who aren’t in a situation like yours never will.
“When communication is lacking by your children and behaviors ramp up, being able to share your day’s highs and lows with a fellow autism mom can be all that it takes to give your heart and mind that peace it so desperately seeks out,” says Sarah.
When things really changed for me was when our daughter transitioned into the autism program at our local elementary school. Because she was no longer bussing 30 minutes to school, we had proximity to other parents and kids right here in our neighborhood who were also on this autism (or other disability) journey. The result was a true friend group for my daughter—kids she knew by name, and who she celebrated birthdays and holidays and impromptu pizza and dance party nights with. And I gained an always-available lifeline in the form of a WhatsApp group where fellow parents shared events and advice, struggles, and those coveted “inchstones” that Sarah speaks about. In person, we attended autism seminars and workshops, and also did plenty of fun things that had nothing to do with autism at all.
“Start by reaching out or posting on another special needs moms group on Facebook or Instagram,” says Sarah. “Share a bit about your child and your love for them. Or join an online support group and read the posts of other parents. Sometimes just seeing the support poured from others reminds you to do the same.”
I would tell my old self to have sought out this community sooner, but the truth is I probably needed to come around to it in my own time. And just as my daughter has to fall and get back up and try again, making small but significant progress along the way, so do I, in the way I navigate being her mom.
—Ronnie Koenig is an NJ mom of twins. Find her at facebook.com/AutismGirlMom
Get the latest on the best things to do with your family in and around New Jersey by signing up for our newsletter and following us on Pinterest, Facebook and Instagram!
Read More:
PerformCare Can Be a Game Changer For Parents of Kids With Developmental Disabilities
Emirates Is the World’s First Autism Certified Airline + We Couldn’t Be More Thrilled
This College in New Jersey is Offering Free Programs for Students with Intellectual and Developmental Disabilities
