Well, here we are again, on the verge of another holiday season. Warm feelings abound this time of year, and everyone feels the urge to form unusually large gatherings and consume massive portions of food and drink. There’s something about the earlier sunset and the growing chill in the air that puts people in a nostalgic, romantic mood. Either that, or thinking about the cold and darkness of death makes them want to huddle together for protection. Whatever the reason, there will be family gatherings galore over the next month or so.
And then there are the ASD families. If you know anything about autism, you know that people on the spectrum can have a hard time with sensory overload. Noises and crowds can make them shut down or act out. Or both. Changes in routine are unsettling. The different smells, tastes, and textures of a holiday meal can be overwhelming. Even when they’re surrounded by people they know and love, they’re still surrounded. And that doesn’t feel good.
All of this got me thinking about how different our family can be—and how different we may appear to people who come to visit. Mind you, most of our relatives and friends are familiar with our dynamic, but there are a few outliers. Not to mention, new friends may end up dropping by. So, with no malice or prejudgment intended, I decided to revisit and revise the guidelines I had written a couple of years ago for holiday visitors to our home.
A Field Guide to the Zanchettin Holiday Home.
Please remember that the Hallmark Channel makes its money by shamelessly peddling its special form of mendacity. No one’s dining room looks like that, and certainly not ours. We’re too busy running to therapy sessions and prepping for IEP meetings to dust every other day. Or every other month. Or ever.
No, the dining room chairs do belong in the living room. In front of the computers. Which get tons of use. Which is why the chairs are battered and stained. And why some have the stuffing pulled out of them. Nervous, stimmy, perseverative kids tend to do that sort of thing.
If you find yourself trapped in a heavily one-sided conversation with one of the kids, remember that nonverbal clues don’t work. Use your words. Find some hook to change the subject. Unless, of course, you enjoy lengthy discourses about the relative merits of water type Pokémon versus grass types in the Kanto Region.
Please try not to make any references to any popular music. Or Rap music. Or Disney movie soundtracks. For some reason, all my kids have convinced themselves that they love metal music. Because their oldest brother blasts it into his ears to help him deal with the noise and chaos of his high school hallways.
Sorry, no Turkey Bowl in this family. A few of them watch Notre Dame football, but for the most part, these kids would fit the (stereo)typical definition of nerds or geeks. So instead of football, how about a rousing game of Super Mario? Or two hours binge watching the latest YouTube video game walk-throughs from Chuggaa Conroy?
Yeah, he spins around like that sometimes. Or hops. Or planks. He’ll be fine.
Don’t be offended if one or more of the kids disappears without notice. It isn’t you; it’s her. She’s probably looking for a quiet place to unwind. Just shrug your shoulders and move on to another child. We’ve got six of them, so there should be plenty to go around.
Don’t be surprised if, when you ask one of the kids what he does besides school, he replies, “Therapy.” He’s being honest.
Yes, he often sits upside down like that, with his head near the floor and his feet in the air. Or athwart both arms of the chair. Or draped over the back of the sofa. And yes, he’s very comfortable doing it.
Yes, I know he’s taking a bath right before dinner. That’s his safe place when things get too noisy. He’ll be out in about an hour.
Pardon me while I dole out the kids’ medicines. I have to take care of dinner and bedtime, so it’ll take a little bit longer than my morning routine. I’ll be back in about 10 minutes.
All compliments about our parenting will be graciously accepted by the management. All advice will be graciously ignored.
Why yes, I’d love another glass of wine. How did you know?
You know, when I tell people about our family’s unique make-up, I often get variations on one familiar response. It’s usually a combination of incredulity and well-intentioned pity. “Six kids? And they’re all on the autism spectrum? Wow, that must be so hard!”
Sure it’s hard. And challenging. Even daunting at times. But not to worry. We’ve got this. Why? Because special-needs parents have a very particular set of skills. They are skills we have developed over time as we have learned how to assimilate to our new normal, articulate the facts about our kids’ diagnoses, and advocate for them far and wide.
What are these skills? They are too many to count, actually. But the list below contains some of the more important ones. Take a look at them, and then ask yourself whether incredulity and pity are the best responses.
Legal expertise. We know how to read a Federal law—and how to spot our family in it. It takes a special kind of person to know the ins and outs of Public Law 108-446, 118 Stat. 2647. It’s the kind of person who can point to this law with the kind of pride that many graduates point to their yearbooks. “See that? That’s us they’re talking about.”
Close, personal relationships with members of the medical community. And the counseling community. And the law enforcement community. And all the local pharmacists.
Elite status in our kids’ schools. Lunchroom moms and classroom volunteers? Rank amateurs. We have the principal on speed dial. Hell, some of us are on a first-name basis with school board members.
No-Mess vision. It’s like x-ray vision, only way cooler. Cluttered countertops and overloaded kitchen sinks disappear before our very eyes. Piles of unwashed laundry melt away. Furniture damaged in melt downs or picked to shreds by anxious, OCD fingers blend into the walls and (beat-up) carpet.
Membership in exclusive online communities. Other people call them support groups, but what do they know? We call them by their true names: Tribe. Extended Family. Confidantes. Council Elders. Best Friends.
Premier access to upper-level insurance representatives. We know how to jump over the call-center drones half a world away and get right to the decision makers. We know the secret words that will get us there. We have their access codes in the form of multi-digit extension numbers.
An unwavering commitment to date day. It’s more than just keeping the “romantic spark” in our marriage. It’s a matter flat out survival. But never at night. That’s the witching hour. It’s Saturday lunches for us. Or Sunday afternoon excursions to the grocery store together. It’s also the occasional getaway courtesy of a generous family member. Whatever it takes to keep us sane.
Super intelligence. Words like methylphenidate, comorbidity, and neurodiversity roll off our tongues. We can spot the difference between OCD, ODD, and ADD at a hundred yards. We know what FAPE is and how to get it—and no, it’s not a contagious disease. We know how to take control of IEP meetings and how to explain complex neurological disorders to curious laymen and benighted teachers alike.
Unbreakable strides. We don’t let little things like setbacks, discrimination, added diagnoses, or institutional ignorance slow us down. We know how to keep moving forward despite whatever obstacles or opposition we might face. We started our march with the first diagnosis, and nothing is going to stop us from doing everything we can for our kids.
Wide open eyes. Where others might see stubbornness, we see a kid struggling with sensory overload. Where others see defiance, we see a perseverative loop. We have learned to perceive love in the quirky, the ordinary, and the bizarre. We can see joy in chaos and sadness in violence.
Thick, thick skin. I’m talking rhino-hide thick. Judgmental stares bounce off us. Hurtful words shatter on impact. We laugh at denials of service, and scoff at the word No. How did our skin get so tough, you ask? From the salt of all the tears we shed early in our journey.
Soft, soft hearts. We melt when we see a fellow traveler at the park or in the store—a young man flapping his hands or a small girl tapping on every window she passes. When we spot parents out with their special-needs kids, we smile broadly and have to resist the urge to run over and give them bear hugs. Our eyes mist up when our ten-year-old learns how to ride a bike or our first-grader gives us a hug. We have learned to receive love in unorthodox ways and unexpected circumstances. And we have learned how to give love in ways we never thought were possible. We excuse the inexcusable, embrace the inexplicable, and cherish the (seemingly) trivial.
So there they are: twelve key skills of a special-needs parent. As you can tell, we don’t want pity. We’re doing quite well without it, thank you very much.
However, if you wanted to give us cash, we wouldn’t object.