We were on our way to Utah for a lady’s golf adventure. Golf road trips are something I never pictured in my lifetime but heading into my fourth season I have to admit I love them. About four hours into the drive one of my friends commented on the fact that April was just a few days away. Immediately my mind shifted to my love-hate relationship with April. I love Spring—the ducks return to my yard, the robins start building their nests, and best of all the days are longer. The gray of winter is gone.
I hate April because it’s Autism Awareness Month and you don’t get to ease into it—bam on April 2nd it’s World Autism Awareness Day. My eyes roll back into my brain at the thought. I don’t actually know when the birth of this awareness campaign started but even before social media, I hated it.
My friends in the car don’t know what just the word April does to me so cruising down the highway that’s the furthest things from their minds. It might have been hunger or just fatigue but before I know it, I announce:
“I know this sounds crazy but it’s hard for me not to think about my kids when I travel.”
There’s a pause and one of my friends asks, “Do you worry about them?”
Trying to explain something I barely understand I stumbled over my words but finally managed to say something along the lines of I’m not worried they’ll miss a meal or have some kind of accident. The hard thing is I can’t take their emotional pulse. I don’t know if they’re smiling and lighthearted or confused and worried about something. Our lives have had to be so intertwined it’s hard to know where they begin and I end. When I don’t have a visual on them I struggle because I know they rely on me.
I can only liken this to being their life translator. They’re amazing recorders of information but terrible interpreters. For all their lives I’ve been helping them sort, sift, and make sense of the world. Add to that their communication deficits and often I’m literally helping them find the words they want to express themselves. So, while praise God they have language skills that have allowed them to go farther than many with autism, they’re still not on par with their peers. Fortunately, I didn’t dump all that on my friends, just the part about taking their pulse.
A half hour later we were walking into In n’ Out burger when I spotted a penny on the asphalt. The dessert sun had seared it into the tar. When I tried to pry it off my thumbnail wasn’t up to the task. We went inside and I got a plastic knife but that didn’t cut it. My friend Tamra could see how much this bothered me and started going through her pockets. She pulled out a divot repair tool and handed it to me saying, “Maybe this will work?”—and it did perfectly.
The penny was sticky so I wrapped it in my receipt before putting it in my handbag. I couldn’t help but think this is how I survive all the messy emotions associated with autism. Something pokes at my heart, I feel it, and then wrap it up so it doesn’t get all over everyone.
Two days later after a lovely spa day my friend Sandy and I were sitting by a fire outside and she asked when I started to suspect the boys were autistic. She’s not the first person to ask this and won’t be the last but my reaction surprised me. Normally I can tell that story with some emotional distance. That’s the baby/toddler years box and I’m good at opening and shutting it without getting weepy. Not this time. It just came spilling out. Was it the massage, the wine, the amazing red rocks with the setting sun behind them? I don’t know but it spilled right into the fire at our feet.
Like the dear friend she is Sandy listened, encouraged, and gave me a pep talk insisting I not be embarrassed by my tears but of course I was. Of all the people in the world she would never want that, but I still feel that way and this perfectly describes what Autism Awareness month is like for me.
It busts open all the boxes and every hard thing about giving birth to, loving, and caring for an autistic child comes spilling out. Every question that constantly bites at your heels comes to the surface. Will my kids be okay? Can they take care of themselves when I’m gone? Will they be safe? Will they be loved? Will they be happy?
When parents of much younger kids ask me if it gets easier, I say some things do BUT the reality is it doesn’t get easier it just gets different. Of course, every parent can say this but the odds are better for neurotypical kids. Autism month might be educational for some but for those living with a painful amount of “awareness” it only offers reminders of what we already know.
What can you do to help? What my amazing friends do—be patient and kind and give those you know impacted by autism what they need in the moment. It might not be a divot tool but it could be a corkscrew and it’s always a listening ear. Don’t try to fix their broken heart just wrap it up with your love.