Six months after diagnosis

It has been about 6 months since Zeus’s autism diagnosis.

I had a vision of where we would be at this point. We would be more sure-footed.  Life would be like that stupid “Holland” story that gets passed around to special needs parents.  We’d have a strange sense of humor about this quirky new land we were in. Life is just like an independent movie! Can’t you just hear the DeVotchka? Gee, it’s different here, mayo with french fries? Oh well, let’s embrace it! Look at the beautiful tulips!

Instead, we are in a dark and frustrating place. Our marriage is often on shaky ground. Our patience with Zeus hangs by the barest thread. Mealtimes are fraught with despair. We find ourselves eating with Bubba, Zeus’s plate laying ready at his place, and no one rushes to bring him to the table. Why bother? He will take one look, “I don’t want that.” The food we are eating, placed in small portion on his plate for no other reason that to tell ourselves we haven’t given up, will cause him great distress. But he will find fault with the preferred foods, too. The chips are broken. The chocolate milk isn’t cold enough. The yogurt doesn’t match. He throws the food. He runs from the table crying. We look at each other and say nothing. What  is there to say? At 9pm, two hours after hubs starts trying to put him to bed, he will weakly declare he is “so hungry.” And he wants goldfish. Do you say no? To a 30 lb. nearly 4 year old, who looks like a refugee? Ribs visible, skin pale, energy level low? This is fucking ridiculous.

Frequency, intensity, duration. Let me say those again — Frequency, Intensity, Duration.




That is the difference that no one ever seems to understand between Zeus and their own typical children.

My kids were picky. My son hated the car, too. Three year olds are the WORST, aren’t they? My son didn’t talk much either. My daughter is shy. My kid didn’t like to get his shoes dirty. Lots of kids have anxiety. Lots of preschoolers stutter. My boy is constipated, too. Ha, little kids don’t like to share. Oh man, my kids are bad sleepers, too. My daughter told me she hates me just the other day. Moody? Just wait until the teenage years. My son didn’t like school at first, either. You know, if you just refuse to make him what he wants, he’ll eventually eat. Just put underwear on him, he’ll potty train in 3 days, flat. You just have to keep taking them out to restaurants, that’s how they’ll learn the rules. Just keep putting him in time-out. These are special times, they will be grown before you know it. Enjoy every minute. Every minute. Write it all down.

Dude, you don’t get it. You don’t fucking get it. I feel terrible for being this negative, but let me just be. For a minute or two here. Because the expectation to be optimistic is exhausting. We are holding up all those who love Zeus. They are so hungry for good news. They don’t even need for us to say it, they say it for us, and dare us to contest it.

Zeus is talking so well, isn’t he? This is all going to start to click for him. We are so proud of all of you. What else can we do to help? You must need a break, why don’t you let me help you more often…

A break doesn’t solve anything. Oh, I’m a fan of getting the hell out of here, and it’s our #1 resolution for 2012, semi-monthly date nights. But the autism is there. Hulking at the dinner table with us. Leering at us as we have wine with friends. Even on a rare kid-free weekend getaway.

Don’t you dare ignore me — I’m not going anywhere. You can’t get away from me. I’ll be with you when you’re 70. 80. 90. Shoot, I’ll be here when you’re long gone. And who will help Zeus then?

Don’t give up on reading this — I’ll find a way to kill this bug up my ass. Really. It’s just that I’m expected to end every conversation about Zeus with family and friends on a high note. This once, let me just not do that. Today, let me just say this really sucks.

The fix

Kudos to the dad who created the above video, because as was surely intended, it has provoked some serious reflection. It may have inspired several posts from me for this neglected blog.

First, lets talk about shame.

The father in the video says he will not be ashamed. He will talk openly and honestly about the condition. This is a powerful thing I needed to hear. Rationally, I do know that there is nothing to be ashamed regarding an autism diagnosis. Neither for us, as the parents, or Zeus as the individual with autism.

And yet–oh, is there ever plenty of it. Shame. Guilt.

Following the diagnosis I fooled myself into thinking that much of the shame and guilt that have plagued my 3.5 years of parenthood would be magically lifted. See? I would be able to say. This is a REAL thing. Zeus’s behavior isn’t the result of poor parenting. But of course I still feel incredibly defensive. All of those individuals who suspected that we were simply doing things wrong, perhaps they remain unconvinced. And then there are the strangers with whom I’m not going to bother discussing the diagnosis. The ones who ever so subtly shake there heads at us when in the Barnes & Noble I gladly oblige Zeus with a chocolate milk box and sweetly ask him to use a quiet voice, that people are trying to read, buddy, as his volume and quirky vocalizations escalate. I’ve actually seen cards on some autism website intended for handing out to strangers (in restaurants, on airplanes, etc.) that say something to the effect of “My child has autism. Please be understanding as we work hard on appropriate behavior.” Who knows if I will ever use this. I am torn whether these are a face-saving tool to alleviate my own embarrassment, or an important awareness-raising opportunity, or a passive-aggressive way to say Hey, fuck you, you judgmental prick. Bet you feel real great now, huh?

But there is another aspect of the guilt that is unavoidable. The blame game. Seeing as that, as far as I am aware, research is pointing to a combination of genetic and environmental influences, I am in danger of forever asking myself What did I do? Did I bring bad genes to the party? Did I eat too many pop-tarts? Did I forget to take my prenatal vitamins too often? Drink from the garden hose as a child?  If I had made any of thousands of choices differently, would we still be here? Does my husband resent me for any part I’ve played in “giving” our son autism?

I feel that the father in the video was giving me a personal challenge. Can I talk openly and honestly about this? Can my husband? We haven’t told that many people yet. a handful of close friends. No coworkers (yet). I’m not sure what’s stopping us. But it’s not as if we want to make a Facebook announcement. What would be the point? It would smack of attention-seeking. So the alternative is telling friends and family one-by-one as the opportunity arises. Which of course brings to the forefront a very painful reality. We have lost touch with many loved ones. Which is perhaps a good spark to the explore in the next blog post.

It won’t just be diapers, you know

If I can just carve out the time, there will be book reviews, product reviews, possibly even some fiction and non-fiction of my own. And, being a quasi-cloth diaperer…here we are, back to diapers. But reviews on those, too.

At the moment I’m reading “State of Wonder.” I’m not really sure why I keep coming back to Ann Patchett. Something in her style has me rolling my eyes quite often, but it is fairly absorbing. At the end of the night, when I’m trying to go to sleep, I tend not to pick up the parenting or special needs books I should be reading, but rather I want to spend at least 20 minutes somewhere else — even if it’s in the Amazon following some fairly one-dimensional characters around some rather obvious plots. Part of why I don’t like her is the invasive way she wrote about Lucy Grealy in Truth and Beauty. I would like to think that when I’m dead, my best friend in the world wouldn’t profit from revealing dark, unflattering details from my life, even if they were true.

And BFF, if you’re out there reading this, mum’s the word on my end, too, my dear. Although I must be honest, if I were ever tortured via sleep-deprivation, I would talk. I’m certain I would. Having two babies has taught me that much. But that’s as likely as the scenario we conjured as the one and only instance in which it was crucial that we know the location of a dissected frog spleen — man accosts you in a dark alley, with a gun, holds up that little tin tray with the rip cage of some poor preserved frog spit and pinned back, and says, “Identify this organ or die!”

And then there’s Vern…

You may have noticed my first post didn’t mention my husband, known here as Vern. I am somewhat sure that he is the only person in real life I plan to share my top secret blog identity with. And he’ll be reading about himself. That’s just weird. So I’ll have to be very careful not to talk about things like the unholy den of stink he creates in our bedroom when he’s had airport pizza, that sort of thing. Oops, shit. You see, honey? This is exactly why I’ve been waiting for years, years I tell you, to start writing a blog despite your constant encouragement.

Introducing Zeus and Bubba.

A little further background is in order. See “about me” section for the general idea. So, yes, these are nicknames we really use, at least occasionally, in our family. The origins of some I can remember, others, no clue. Our youngest dog is quite aptly nicknamed Hog. She’s a little hoglet. She is short and fat and hungry all the time. Her older brother, Tony, has had more nicknames than I can possibly remember. This one started as Don Antonio. Oh, what a young couple with baby fever can do to a dog. He’s had at least a dozen (bad) songs composed in his honor. He has owned his own life-vests, seatbelts, shoes, Doggles and premium beds. He’s eaten like a king. He’s gone on boat rides. It’s been a dog’s life. Until, of course, Zeus and Bubba came along.

So, Zeus is our almost 3.5 year old son. I believe that name came from his own babbled pseudo words. Around 13 months, he would stick out his lips and forcefully shout “Zeus!” We thought this was very appropriate because it was quite clear he believed himself to rule not only our household, but the entire world, from the moment of his late arrival at 41 weeks.

Bubba is our youngest son, who just turned a year old. He is big. He is Bubba. He came into this world, exactly on his due date, weighing in at 10lb 3 oz. Thankfully, he has rolled with the literal punches ever since. He has been bald for most of the first year, closely resembling Mr. Clean. Bald, tough. If you’re not careful, he’ll give you the stink-eye, especially if you are a random stranger tickling his chin in the line at the grocery store. Nothing like a serious stare from a baby to rock your confidence.

Why am I naming my entire blog after these boys? What are they, the stars of the show? For now, yes. There is more to me than being a mother, as I hope to demonstrate. But let’s be honest, I’m currently a stay-at-home mom of two energetic boys, one of whom has autism, I don’t have any family in-town to hit up for frequent, free baby-sitting, and I don’t get out nearly as much as I’d like to. This is something I seriously hope to remedy, and soon. But even when I achieve a more balanced life, these kids will always be a huge part of it, and I won’t pretend otherwise. If you happen to be one of my working acquaintances with whom I have the pleasure to socialize, I swear I’m trying to think of something more interesting to talk about than the crazy things blueberries can do to a kid’s diaper contents. I am. Be patient with me and wait until I have a beer or two in me and perhaps I will get more interesting, or at least I won’t care that I’m boring you to death.

More to come, stay tuned.