I Kind of Hate You. Also, I’m A Total Liar.

The first time I intentionally told a complete and total lie, I was four. My sister and I were playing in our brown-shag-carpeted family room in upstate New York, and we decided it would be a really, really good idea to play with the broom, which probably wasn’t the worst idea except that we were playing right near our mom’s Tiffany-style glass lampshade. Long story short, the incident ended with my mom running into the room and scanning the scene: broken lamp, shattered glass in the shag, a clammed up six-year-old, and one petrified four-year-old holding a broom twice her height behind her back. No blood at least, but still, not exactly what a mom wants to see.

To my mom’s credit, when we pointed our fingers at one another, claimed complete innocence, and disavowed any knowledge of either the lamp (which we’d just blamed one another for breaking) or the broom (which I was still holding), she didn’t laugh or scream, both of which would have been appropriate, even simultaneously. No, my mom was quiet at that moment, and that scared the daylights out of me. We knew that she knew. And she knew that we knew. And that guilt was enough to keep me from lying again for a long, long time.

These days, though, I seem to lie a lot, mostly by omission, and primarily because most people don’t really want to hear the honest answers to their daily questions. Autism doesn’t make for polite conversation. Plus, some days I’m so seriously jealous of these women and their normal lives and typical kids that I kind of hate them a little for complaining about the things I would give my left arm for.

Here’s a normal conversation with a casual friend who has two kids:

Friend: “Hey! How are you?”

Me: “Doing great! Busy as usual! You?”

Friend: “Oh, I hear you on that! We are so busy! Collin had TWO birthday parties to go to this weekend, and that was on top of his soccer practice and soccer game! And then Jessi had this homework assignment, I swear, I don’t know how they expect parents to have time for huge projects on the weekends!”

Me: “Life with kids is busy!”

Friend: “It sure is. And it doesn’t help that they only move quickly when you want them to sit down! I must have had to tell Jessi to get dressed four times this morning, and then Collin just won’t floss his teeth unless I stand there watching!”

Me: “If you’re late getting to school, they’re like little sloths! But mention bedtime and they’re running around like Olympic relay racers!”

Friend: “Are you limping? What happened?”

Me: “Occupational hazard! Kids!”

Same conversation with no lying allowed, not even by omission:

Friend: “Hey! How are you?”

Me: “I’m freaking exhausted because Will was up until ten last night, pulling the curtains off his windows and banging his iPod on the wall, which means I didn’t have a second to relax all evening, and that really sucked because I had a migraine from being in the hyperbaric chamber with him for therapy in the afternoon. So, you know, busy.”

Friend: “Oh, I hear you on that! We are so busy! Collin had TWO birthday parties to go to this weekend, and that was on top of his soccer practice and soccer game! And then Jessi had this homework assignment, I swear, I don’t know how they expect parents to have time for huge projects on the weekends!”

Me: “Oh yes. With therapy and hyperbarics and doctors’ appointments, we are booked solid. Ugh, and birthday parties? The last time we went to a birthday party, Will sat in the corner with his iPod the whole time while I watched people stare and fielded questions from other kids about why he wouldn’t join in and play with them. But we do get to skip the homework because my 6-year-old is still working on drawing straight lines. Life with kids is busy, busy!”

Friend: “It sure is. And it doesn’t help that they only move quickly when you want them to sit down! I must have had to tell Jessi to get dressed four times this morning, and then Collin just won’t floss his teeth unless I stand there watching!”

Me: “Yeah, it takes a long time to get two kids dressed for school, especially on days when Will fights and screams the whole time I’m dressing him, since he doesn’t do that himself. Plus, we’re still spoon-feeding him, so that takes a while. And flossing? Don’t get me started on teeth. We had to pay a pediatric anesthesiologist out of pocket to knock Will out for his dental cleaning.”

Friend: “Are you limping? What happened?”

Me: “Occupational hazard of being a special-needs mom! Will head-butted me in the knee while I was dressing him, and when I scolded him, he smacked me in the ankle as hard as he could with his iPod, all before I even had a chance to pee this morning. So, you know, the usual.”

See? That second conversation? That one wouldn’t even happen because the friend would hear my first answer about Will ripping down his curtains (true story) and banging his iPod on the wall (also very true), and the conversation would veer off into one of a few predictable paths:

Path A: Friend says, “Oh my gosh. I just don’t know how you do it!” and I think to myself, “Well, I have no fucking choice, and I don’t want your pity because I love my kids more than life itself, and no matter how challenging things are, I wouldn’t trade my kids for the world,” which is true, but also totally unfair to my friend, who, after all, is just trying to show some compassion. That’s what I mean about autism not making for polite conversation.

Path B: Friend says, “Oh, wow. Can’t you just … (insert well-intentioned yet non-helpful comment here such as, “take the iPod away,” “stay with him until he falls asleep,”). When people pose such questions, they’re trying to help. I get it. The impulse to be pro-active and helpful is usually a good thing. But it’s very hard to respond without sounding like either A: I think you’re a moron because there’s an obvious reason your suggestion won’t/doesn’t work and I resent the implication that you think I’ve overlooked something so basic when I do little else but work on making my kids’ lives better, or B: I’m a rude person who shoots down every suggestion helpful people try to make without even explaining why. End result: we both feel like assholes.

Path C: Friend says, “Oh. Um, so is he doing better in any other areas? Is he talking yet? Because my cousin’s/grandma’s/hair dresser’s neighbor had a boy with autism, and he didn’t talk either, and now he’s 20 and he’s in college and he’s going to be a geneticist. So maybe Will will grow out of it? Or get better? You know there’s so much research now.” And I try to smile and say, “We never know what the future holds for our kids,” while I’m thinking, “You know, I should have lied, and I kind of hate you right now.”

The honest truth of the matter is that, unless you walk in my shoes, you just can’t truly understand. And that’s a good thing. Just because I accept that my son has autism doesn’t mean I like it, and I sure don’t wish it on other people’s kids, so I’m most definitely glad most people can’t relate. But it does complicate things and make for circular conversations sometimes.

For instance, I have some days when my girlfriends complain about their kids not rinsing their cereal bowls and I want to say, “You know, my six-year-old doesn’t feed himself, so fuck you for bitching about your normal kids.” But I don’t say that. I say, “That’s gotta be really annoying,” because that’s both true and a fair response. And then my friend suddenly says, “Oh, but I shouldn’t be complaining to you,” which is kind of true, and I did just think of cursing the friend out for not seeing that, but it’s also not fair and not true, so I say something like, “Sure you can. It’s all about frame of reference. Just because you see my parenting challenges as harder than your own doesn’t make your struggles less valid. There’s always someone who has it worse. That’s like saying you can never complain that you don’t like your food because someone else is starving. Sometimes, you just don’t like your food.”

See, here’s the circular part. I appreciate the compassion, but don’t want the pity. I appreciate the sensitivity, yet still want my girlfriends to come to me with their own struggles because, no matter what’s going on in my house, their worries and stresses are still totally valid and deserving of attention. And I appreciate the acknowledgment that my life is really damn hard a lot of the time, yet I don’t want people thinking having a kid like Will is some kind of purgatory.

The fact is, when you have a kid with autism, life is just different. We don’t have “good days” or “bad days.” We have good moments and bad moments, and sometimes they’re only separated by a few seconds. Yes, it’s hard for me to see Facebook pictures with proud 1^st graders holding up their spelling tests because I do wish Will were one of them, but I’m still so proud of his straight lines and name tracings because he’s doing his best. It’s really hard to explain to someone with typical children or no children, as they just don’t have any way to relate. That’s why I lie.

I’m not ashamed that Will bangs his head on the tile or yells, “Aaaaahhhhhhhhhhhh” for ten seconds at a time, three times a minute, for maybe two hours at a stretch sometimes. This is who he is. But having to talk about it, explain it, answer questions, and sound like it doesn’t eat me up inside some days, well, that’s more than I’ve got in me at times. So I lie because I don’t want to discuss it. And I say everything is great. And sometimes I lie because answering honestly, even though it sounds like all normal stuff to me, makes other people really uncomfortable. I’m pretty good at telling when that’s going to happen at this point, so I hold up my end of the social contract by keeping what others perceive as unpleasantness to myself because there’s no good way for the other person to respond. But this does no one any good because it makes people think having a child with autism is easier than it is, and it makes me feel isolated because I can’t openly talk about the reality of my life.

So, here’s the truth: I know people think having a kid with autism must really be almost impossible to handle. It is. I also know people are grateful they don’t have to walk in my shoes. I can’t blame you for that. And I know you look at what I think of as a fairly good day and think it sounds like the worst day ever. And for that, I envy you. And I also know most people would never admit to half the things they think when they see my son. So, here’s my confession: I kind of hate you sometimes, even if it’s just for a minute and has way less to do with you than with my own jealousy, exhaustion, and desire for my son to have a normal life. Also, because it makes everyone happier, or at least more comfortable, including me, I’m a total liar. But then again, aren’t we all?