On a gorgeous early October afternoon, I was riding in the car with my sister, my son, and my nephew when the topic first came up.
"What do you want to be for Halloween?" my sister asked.
I listened as she went through the list of my 3-year-old nephew's favorite characters and franchises: Mickey Mouse, Spiderman, Batman, Paw Patrol. He eventually made his choice with an enthusiastic "Mickey!"
"Okay, you can be Mickey," my sister replied.
For some reason, in that moment, I felt like I'd been punched in the gut. You wouldn't have known it by looking at me I had on my "I'm good, totally not breaking down inside" face that I like to think I've perfected over the years. But inside, I was struggling with a melange of intense mom-guilt, longing, and shame I wouldn't wish on anyone.
My 4-year-old son was sitting in the back seat playing happily on his tablet, and in that moment, more than anything, I wanted to ask him what he wanted to be for Halloween...and for him to be able to tell me.
I've had a lot of moments like that since my son was first diagnosed with autism two years ago – seemingly small, unremarkable moments that stopped me in the tracks because they made me realize just how different life is when you have a child with special needs. Different doesn't equal bad, but in the autism community, you'll hear a lot about a "grieving process" that many parents go through following an autism diagnosis. It's a process that describes letting go of what you thought your child would be like, that "perfect, normal life" you made Pinterest boards about when you were pregnant.
That sounds terrible, right? Not to mention ridiculously guilt-inducing. Two years ago, I may have been struggling with some new, scary information, but I didn't want to think of myself as grieving; my child is here, he's alive, and I'm grateful for him just the way he is. Even now, I'm not completely comfortable with labeling what I was going through - and what I still sometimes go through - as grief, but I have to admit it feels like an accurate description of those hard-to-swallow-down, random gut-punch moments - like that afternoon in the car.
Halloween has always been one of my favorite holidays, second only to the sappy extravaganza of neverending family time that is Christmas. I love scary stuff any time of the year, and as a cosplay nerd, I can't help but jump at any excuse to wear a costume. I'm the type to start planning my get-up in August, if not earlier, and when I first had my son, one of the things that I was most looking forward to was sharing the joy of Halloween with him - picking out costumes, telling (age-appropriate) spooky stories, all that good stuff.
But sitting in the car that day, it hit me again that things would be a little bit different for us from what I'd first expected. My son is 4-years-old and doesn't talk yet - he may never communicate in that way (there's no real way of knowing), and I've come a long way in learning to accept that. There are different ways of communicating, after all, and speech just may not be his preferred method.
But sometimes, I really wish I could take him to the costume store - or any store - and he could just tell me what he wants. He doesn't have an interest in popular kid's cartoons characters, though, and that definitely isn't a bad thing (sorry, but Mickey Mouse Clubhouse is the most annoying show on Earth). He prefers foreign language learning videos. I'm sure a lot of autism moms know what it's like to hear Russian/Chinese/French nursery rhymes on repeat all day every day, but there aren't Halloween costumes of the talking, animated beaver that teaches kids the Chinese alphabet on YouTube.
There's nothing wrong with not liking what's popular; I know that. Not liking popular things was pretty much my calling card throughout my entire young life. So, how did I get to a place where I let a touch of disappointment creep in because my kid can't call out to me his favorite cartoon character for Halloween?
It's important not to get stressed out, and to try to take comfort in the fact that there are people out there who get it; I don't always have to feel like I'm talking to a brick wall when I try to explain to someone for the millionth time that my son isn't being rude or refusing to talk, that he's non/pre-verbal, and he actually doesn't eat candy, so he doesn't have a favorite kind but thank you anyway for asking. My son not liking candy just means less cavities for him and more bite-sized Snickers for me.
I don't ever want him to feel ashamed of who he is, and that starts with me being 500% okay with it first, right? That I'd placed my own expectations on him when it's not his job to be anything other than who God made him to be...it me want to turn in my "Best Mom Ever" coffee mug or maybe just beat myself over the head with it.
I was supposed to be passed that point. Learning that my son has autism was scary at first, but I came to learn that it's just another way of living. He may not be able to verbally tell me which costume he wants, but trust me - he definitely knows how to communicate what he does and doesn't like, whether it's with gestures, sounds, or his PECS book, and I'm grateful for that.
Once we linked up with our local special needs community, I found out that there are so many other families like ours, as well as fantastic events that cater to kids with special needs. If he gets anxious about trick-or-treating, we can practice around the house a few days before, or opt for a smaller event at a familiar location where he'll feel more comfortable, like an event at school. Costumes - especially those that have face coverings - can also be a nightmare, so we can consider sticking to a simple accessory like a cape, or wearing a funny, themed t-shirt. And most importantly, if he's just not into it no matter what - that's totally okay. It's okay not to participate.
There are harder things in life to deal with, and being different doesn't have to be something to grieve about.
[Illustrations by Tiffany Pilgrim & Michelle Eguia]