One Big Neurospicy Family

When my son Dean was about two and a half years old, there was a particular trip to the grocery store that I’ll never forget.

It was just the two of us that morning, trying to wrangle up some provisions for the week, both happy to be out of the house for a bit. My son—who has never been a fan of sitting still—was begrudgingly buckled into the seat at the front of the cart, nomming on the shopping list when I wasn’t looking.

About halfway through the store—after rescuing what remained of the shopping list—I began to realize that we were being stared at. And it wasn’t just a single person or family looking our way. It was nearly every person we happened to pass as we made our way through the aisles.

I ran down the checklist most parents of young children are intimately familiar with. Was there something on my clothes? Did I remember to brush my hair? Was I still in my pajamas? Had my son grabbed something off one of the shelves and I hadn’t noticed?

Mercifully, all of the usual suspects seemed to be in order. So, why then, were we continuously being stared at?

It took an embarrassingly long time to realize what was happening, and that it was the high-pitched pterodactyl like screeching coming from the grinning toddler still trapped in the shopping cart that had caught their attention.

Now, you would think that this would have been obvious to me. It’s not exactly a noise you hear every day, and most people aren’t thrilled to have their ear drums assaulted by such a sound at any time of day, let alone first thing in the morning. So, why hadn’t it occurred to me that this was the reason behind all the, only semi-judgmental, staring? That was easy. I was used to it. Honestly, by that point I was so used to it that the sound had apparently become a sort of background soundtrack to my life. So much so that I hardly even noticed it anymore.

This day is just one memory scattered among thousands that begin to capture what it means to be a neurodiverse family.

You see, Dean—now seven—is autistic. And one of the wonderful quirks that makes him who he is is that he will often stim vocally. He can’t help it. Stimming is a repetitive motion or vocalization often used for self-stimulation, to calm, or to express feelings. Loud, high-pitched, vocalizations aren’t my sons only stim—he will also rock, flap his hands, or bounce, among a number of other things—but it is certainly the one that has caused the most side-eye from strangers when out in public.

There are so many things I wish I would have said in the moment to those people, not the least of which being that young kids, no matter their neurotype, tend to be obnoxious at the store. It’s just science. But, ideally, I would have taken that moment to educate. Even in this day and age, autism—like many other forms of neurodiversity—is still a sort of nebulous concept to some people. Sure, they’ve heard of it, maybe seen stereotypes in movies and television, but they don’t really know anything about it.

I freely admit that when our son was born, I was one of those people.

Before I had kids, I had this mental picture of what it would be like. Picking my kids up from school and animatedly discussing their days, happy family trips to amusement parks, messy days covered in paint and other miscellaneous craft supplies. We would do it all.

Armed with months of research from parenting books, mommy blogs, and hounding relatives for their own experiences, I felt prepared. I felt ready to absolutely rock this whole motherhood thing.

Then I actually had kids.

Wouldn’t you know it? Turns out that kids don’t care at all about your expectations of parenthood. It’s so rude, I know.

It wasn’t all that long after we welcomed our son into the world that I realized all the research I did while pregnant had not prepared me for the journey ahead. It couldn’t have. You see, almost all parenting books that well-meaning friends, relatives, and perfect strangers will recommend when you say you’re expecting are written with neurotypical children—and parents—in mind. Which, at the time, hadn’t registered to me as a problem—something I now recognize as a deeply ingrained systemic issue, but that’s a rant for another time.

When Dean was about six months old, the pediatrician cautiously broached the topic of autism with us. Somehow, I was stunned and yet not surprised at all. Sure, for the first several months of his life, I was a little preoccupied with sleep deprivation, near constant spit up from severe reflux, and a nasty case of colic, but it was like as soon as she said it, so many things clicked into place and suddenly made sense. Little things stood out, like his lack of eye contact, issues with certain food and clothing textures, and the way he wouldn’t respond to his own name. It all added up to something, and this something had a name. Autism.

I’m a little ashamed to admit it now, but there was definitely a sense of fear that accompanied that label. Don’t get me wrong, there was never a time that my son being autistic bothered me or disappointed me in any way. No, it was fear of the unknown. I spent so much time preparing to become a parent once we found out we were pregnant, but somehow never anticipated this possibility. It was in that moment that I realized I had a canyon sized gap in my knowledge base. After all, how was I supposed to be the best mom I could be for my son if I didn’t understand him?

Learning more about who my little guy was turned out to be a bumpy road filled with laughter and amazement—and more than a few mistakes.

Then, just three and a half years after our son was born, our daughter Madilyn made her way into the world. This time, I felt truly prepared. Over her first year, I looked for any of the signs we noticed early on with Dean. But our happy girl had no trouble maintaining eye contact, she didn’t seem overly fussed about food as long as she had plenty of it, and was responding to her name consistently right on schedule according to the CDC website.

It wasn’t until she turned three that we started to have questions about whether she was truly as neurotypical as we originally thought.

The first thing I noticed was a mild speech delay. She was clearly behind the benchmarks set for language goals by three years. But, she was also a pandemic baby. The only other child she really interacted with was her brother who has always struggled with mouth words, preferring to use gestures and sounds to communicate. So, was it any surprise that she was a little behind? I filed the thought away and life went on.

It wasn’t until her pediatrician had us fill out her three year assessment that it really occurred to us that Maddie might be neurodivergent as well. Once again, I buried myself in research, stunned to find out that not only does autism tend to present very differently in girls, but is drastically under-diagnosed among that demographic.

Things like her tendency to mimic body language and script lines from shows and movies immediately stood out. Then there were some subtle signs that she was sensitive to certain noises, quite a bit of rigidity with things like seating arrangements and the order things are accomplished in, and her tendency to repeat herself or a specific phrase over and over even in out of context situations.

I was floored. There were so many signs of autism I had never heard of, even after all of the additional research I’d done after our son was diagnosed.

The pediatrician agreed that it would be best if Maddie was evaluated. In the meantime, I continued my research into autism in girls, compiling a list for the developmental pediatrician who will evaluate my daughter later this year. I was absolutely shocked by the number of things I didn’t know about autism and the different ways it can present. From a very early age, Dean displayed easily identifiable—and pretty stereotypical—signs of autism. But, there is so much more to it than the very narrow view the world allows us to see of the autistic community.

I had just been diagnosed with ADHD the previous summer, just shy of thirty-two years old. So many things about myself suddenly made sense, but it never felt like the whole picture. Now, things were once again clicking into place like they had when my neurologist suggested I might have ADHD. Yet another list of things about myself I never realized could be attributed to being neurodivergent.

I still haven’t decided if I want to pursue a formal diagnosis for autism yet. It’s hard enough to get a diagnosis if you’re female, but an adult female? I know when I’m looking at an uphill battle, and I’m more focused at this point on fighting those battles for my children.

So, what is the point of this long and rather rambling post?

Parenting may not look like I thought it would.

Instead of lengthy discussions in the car after school pick up about their days, my son is decompressing and centering himself with his tablet after giving me a smile when I ask how his day went, and my daughter is repeatedly singing her garbled three-year-old version of Ring Around the Rosie.

Instead of worrying about packing enough cash for games at the amusement park, we’re more concerned with packing Dean’s trusty calculator and our kid’s sensory approved snacks.

And instead of having messy craft days all together as a family, Maddie will get herself covered in paint only to immediately request you help her wash it off, while Dean watches from nearby, preferring to work with markers as he can’t stand the feel of paint.

Our days may not look like I thought they would when I sat imagining our future family. And, I’m sure, our days may look quite different than yours. But isn’t that the beauty of it all? Real life is so much more complicated and beautiful than that. I am constantly amazed by my kids, and I know I would never in a million years trade what I have now for what I imagined all those years ago.

That being said, I am eternally grateful for my noise-cancelling headphones when the pterodactyl screeching gets to be too much.