Being a parent to an autistic child can be lonely and isolating. When I’m somewhere with Johnny, all my attention is on him. Off in a corner just him and I. Even when I’m in social situations on my own, it’s lonely because most people cannot relate. Or maybe it’s because I can’t relate. My outlook on life is so different. My days are filled with worrying about someone else in almost every way.
My first experience with special needs parents was at an early intervention therapy, day camp for Johnny. All the parents could take classes and meet up while the kids were in their camp groups. I felt so awkward at first. I was the only parent with an autistic child attending the class. All the other parents had children with different abilities. Some had kids with major physical disabilities or very rare conditions. I didn’t think I could relate to them or fit in, but by the end of the week I loved them all.
Even though our kids were all different from each other, they all significantly changed our lives. They changed how we all saw the world and the world saw us. It’s an amazing bond.
That day camp experience made me realize that talking to someone and being able to truly voice both the good and the bad was amazing.
I realized after the camp that I was already part of an amazing resource. One full of mom’s that understand my life, Coop’s Troop.
I started following Finding Cooper’s Voice years ago and then joined her supporter page shortly after it started. As the page grew it became a community.
Some days I looked and others I didn’t. I was in denial at times. Johnny hadn’t been officially diagnosed at that time, and I still had this weird hope that it was not autism. Reading posts from all these other moms, who were deep in it, made me uncomfortable. Most seemed to be fully in the special needs world, while I was busy trying to claw my way back to the typical world.
Every once in a while though I’d get on and see something that sounded a lot like my Johnny. I could relate, I could vent, I could see myself in these moms.
I think being part of that group was what really woke me up. It was okay that our life was going to be different. Others had done it and were doing. When covid hit, moms starting meeting face to face on Zoom. It took me a while but I eventually started popping on. It was life changing.
Now I remember when I first saw the term “Mom Tribe”, it made me cringe. It made me think of clicks and squads. It felt like people kissing up to each other or craving popularity, like they were back in high school. I know, I sound like a real gem.
With that being said, I must admit that I’ve found my mom tribe. Moms from all over who understand. Women who I may have never been friends with before, but who I relate to on a whole different level now.
Some are my past and some are my future. Sometimes I guide them, but they mostly guide me. Some have it harder in some areas and easier in others, but we all get it.
Finding people who understand potty training, sleep deprivation, the loneliness, the sadness, the wins, the regressions, the damn paper work, just the ASD parent life, is everything.
To any mom or dad out there who is tired, lonely, and scared, you are not alone. Not too long ago my mindset was that I didn’t even have the time to make friends, or keep friends. Little did I know, that there were plenty of women out there who would make the time for me and it’d be worth it.
Find someone. You are not alone.