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.