Finding The Ones Who Understand
When I was pregnant for the first time, so were a bunch of my friends. We had plans. Our kids were going to be best friends and grow up together.
We would watch them meet milestones together and bring them to the park for playdates. It was going to be the, let’s be honest, the somewhat unrealistic expectation most first time moms have, but I have seen it happen, the pictures posted online to prove it.
Some best friends do get to extend those deep connections to their children and the friendships only grow stronger. But for me, this expectation of a family friendship slowly became a thing of the past not too long after I gave birth.
For me, the sleepless nights weren’t stopping after the newborn stage, and the milestones weren’t being checked off at doctor’s appointments, and for my kids, and my friends’ children, well, they started to grow apart.
The playdates became fewer and fewer, and when the invites were extended, we couldn’t always make it, or if we did go, the fact that we didn’t exactly know how “to play,” somehow made the feeling of isolation only grow deeper.
It wasn’t anyone’s fault. It is what it is, but two fragile x diagnoses later for both of my boys left me feeling like I was never going to socialize again. Instead of spending the summer jumping through the sprinkler or signing the boys up for t-ball, these activities would be replaced with scheduling therapy sessions, doctors appointments, and extended school year.
And let’s not forget that t-ball would require a one on one aide if we were even welcomed without being potty trained, and spending a hot day by the sprinkler would require some sensory work for sure.
These activities were not in the cards for me and my boys, at least not yet. Not being able to participate in stuff like this only led to feeling more and more alone.
But then, somewhere along the way, the isolation started to get a little better when I began to find my tribe. It would not look anything like I expected; it would not involve meeting at a park with the kids for a playdate or chit chatting with another mom while sipping fruit punch at a mommy and son dance night.
That’s because if I ever had the chance to see another special needs mom in real life, she was just like me, so laser focused on getting their child through the situation at hand, too worried about their child eloping to sit down and grab a cup of coffee; there was no opportunity to connect.
Instead, the connection to another mom I could relate to popped up in my news feed. It was a video of a woman giving her son a haircut, and her son was like mine: he didn’t talk and getting a haircut with anxiety seemed near impossible.
I started following this woman’s page and watching all of her videos.
Finally, I found someone who seemed to be talking to me and our mom stories were so similar. Then, this woman started a group, a private group, a group of people who were all looking to feel less alone, who wanted a place to share their wins and losses, a place to not feel judged or ridiculed or pitied, a group where everyone lifted each other up, shared their stories, and embraced one another.
One by one, those stories were shared and I started to carry them with me, piece by piece. I would think of these moms and their families when I spent time with my boys. My boys, who suddenly didn’t seem so different according to everyone else’s posts. My boys, who had some of the same loveable quirks and obsessions as other kids and who struggled with some things that no child should have to endure, but they do, day in and day out.
And then these special needs moms and I started connecting face to face, well for me and the current circumstances, this meant through the power of video chats, but it still was impactful.
How could I open my computer and start to talk to a person I’ve never met before and then before long, hours have passed, laughs and tears are shared, and I feel like I sat down for a drink with an old friend? It happened and it happens all the time now.
The truth is no one expects to be a special needs parent, at least not initially. We don’t expect our children to be the one in 4,000 individuals who inherit a genetic condition that causes developmental issues or receive any other diagnosis for that matter. And we don’t really anticipate our children being so different from most of their peers that we stop sharing our parenting stories, but we all need connections.
And while we absolutely love our friends and family, turning to them to talk about a child’s anxiety or struggle with self injury can sometimes just make us feel more alone.
When I first got a diagnosis, I spent hours on my computer researching about my children’s disability and searched for what they needed for resources, but what I also found was a resource for me.
A group of people who were looking for the same connection, the same feeling of community, a place where inclusion is the norm and not an afterthought, a place to cry, to vent, to laugh, and to feel a little bit of the weight lifted off your shoulders.
That’s what finding my tribe did for me.
Learn more about Coop’s Troops HERE.
Written by, Carol Williams
My name is Carol Williams, and I am a mom to two beautiful boys with fragile x syndrome. I am also a wife and a teacher. I am hoping to express some of the overwhelming emotions of this special needs journey we’re on through my writing and raise awareness about fragile x syndrome. You can follow our story on Instagram @discoveringfx or at discoveringfx.com.
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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
