Don’t Deny My Reality! I Have a Kid With Autism.
Seriously, I can’t bitch. I’ve gotten everything I asked for. As a kid, I had only one prayer: “Jesus Christ (for then, that was my god) please make my life not so boring.”
Action was what I expected out of suburban Ohio and I got it. In Ohio, yes even in Ohio, freaks abide, my friends, freaks do abide. In the early ‘90s I spent most of my free time in bars and comedy clubs performing improv. I was outrageously fortunate to actually work performing improv comedy for money, even. Those days revolved around comp tickets to shows, radio spots and hosting karaoke in exchange for free beer. Back then I shuddered at the thought of getting saddled with anything normative like marriage or “safe” neighborhoods or driving a fully functioning car. I had intended to have the type of life that involved lots of last-minute dinner reservations and waxing appointments.
Instead I ended up married — twice, even— with three kids, two of whom happen to be on the autism spectrum. Oh sure, I’m not on the red carpet anywhere but at least I’m never bored. Thanks, Jesus!
My life has been a whirlwind of invoking Special Education Law and behavioral management techniques. Thanks to the fact that my daughter, Kathleen spent her years 3 to 7 trying to run away to some unknown destination, literally meaning that she would break free and RUN at any given opportunity. We had no less than four police interventions involving searches down busy highways and heavily wooded areas. And my son’s weak people-reading skills meant that his first year in middle school was riddled with almost weekly fistfights and bloody t-shirts. Most kids would know to wait until after school— not my boy. He spent a lot of 2009 fighting in class, getting suspended and feeling isolated. And if 2009 wasn’t thrilling enough, my daughter, who is already autistic and intellectually disabled, developed a seizure disorder. Take THAT, soccer moms! And you thought that your car pool schedule was off the chain.
Oh, but it was rough for many years before that. I remember strung out mornings—the ones that come after being up with an autistic toddler all night (sleeping isn’t big with many autistic kids). I would wander into stores and listen to other moms become incredulous about Target’s exchange policy, which made me only slightly homicidal. Did I mention that I had twins? Yeah. Then when my twins turned three I had my son. Thank God babies are cute or I may have just eaten him after he was born.
Thankfully years have passed and my kids no longer keep me awake and aren’t eloping (that’s what the cops call it when your autistic kid — or your grandpa with Alzheimer’s — runs away) at every turn. Still, my life is never boring. It’s not secret-agent-VIA/MI5 exciting or anything, but it’s sure as hell not Mayberry. Instead of a feral toddler I now have a 19-year old girl who has the mental ability of a five year old. She loudly sings preschool songs (so I never ever, ever want to hear the exasperated laments of a parent of a preschooler about the Wiggles. Try listening to that shit for 13 years, pal.)
My now 16 year-old son is nothing more than your garden variety geek. Thanks to the tv show, The Big Bang Theory, these kids are everywhere. Shit, he’s practically boring these days. I really think his hardest days are behind him. at least he isn’t discussing his constipation in public anymore.
My children’s collective odd behavior may have gone unnoticed when they were little kids because little kids almost always have moments of total insanity. Even an average “good kid” will throw the occasional temper tantrum, hit their parents or lay flat in the middle of the grocery store. But when the 19-year-old, who always carries a stuffed toy with her, starts crying like a small child in the check out line at Kmart, it’s unsettling. But here’s the punch line; she’s doing great! It’s taken her years of therapy to get to the point that we can take her out in public without a huge scene. So, even our really bad days aren’t as bad as they once were.
Don’t feel all sorry for me: unlike Jenny McCarthy, I’m no Mommy Warrior. Besides, I have an ace in the hole. I’m trained to handle anything and everything unexpected; I’m an improviser and improv comedy teacher. I teach the art of accepting anything unexpected that’s thrown your way. As I tell my students, anyone can improv. It’s a natural response to any situation. In fact, most people are already master improvers because you do it every day, without even realizing it. After all, we aren’t handed a script when we go to the 7-11 to pick up that emergency gallon of milk. If the cashier asks you if you can pay her in ones because she’s running low, you don’t freak out because that “isn’t in the script.” No, you probably tell her to piss off because you aren’t Bank of America. Besides, you need all of those ones for your night at the gentleman’s club, right?
There is nothing, absolutely nothing, that a good improviser isn’t prepared for. And I should know: I’ve been thrown a few curves in my life. I may have stuttered a bit but I always accepted reality just as it was presented to me. Of course it’s easier said than done but isn’t that the trick for everything in this life? The goal is to live like you aren’t trying very hard. Yet the truth is that life is hard. Its hard for everyone you know, meet, hate, care for, broken up with and forgotten— and those that you cannot forget.
Life may have gotten easier for my son, but my daughter will need lifelong assistance. I had to go through the very emotionally painful and expensive process of obtaining legal guardianship for my daughter. This was not in the script because parenting is one of those jobs where your singular goal is to prepare your kids to take care of themselves. I happen to have a kid who functions like a five year old, and realistically the best we can hope for at this point is that she gets to, say, seven, developmentally speaking. Seven is good but still not “paying the rent and knowing how to do your taxes” good. I can hear my past improv coaches saying, “So things are not turning out like you wished. Too bad, lady. Sometimes you go into a scene as a supermodel and you end up being a tree stump.”
And even with years of putting myself out there and getting ready for anything, there’s nothing that can prepare you for the feelings you’ll have when you take guardianship of your own kid, nothing like it at all.
Adopting your dog isn’t like it. Watching your dad die isn’t like it. Getting fired isn’t like it. Nothing can prepare you for the process. I realize that lots of parents have gone through this. In fact, lots of parents have to watch their kids suffer and die before they were ever given the chance to see them grow up. They would have been thrilled to become their children’s guardians, so I’m not saying this is the worst outcome for my kid. Indeed, it most certainly could be worse. So this is what’s playing out: my child won’t graduate with a high school diploma and she won’t have a chance at a career. So, my feathers are ruffled a little and I’m sad that I can’t do the scene that I wanted to do. But this is the scene that I’m doing, and I can’t write anyone’s script on stage. The good news is that I’ve been in scenes like this before and as long as I follow improv law — agree with what has been presented, listen to what is actually being said, and try to make my other players look good — then I’ll live. I can probably even fuck up a little bit and no one will notice.
Who knows, maybe something really funny will happen.