Oracle ✥ Artist ✥ Author ✥ Time Traveler

An Uncertain Future

Eric, my baby, turned 5 last week. The big oh-five. You remember five? At five I was in kindergarten trying to figure out what “playing house” meant and why anybody would even want to and arguing with other kids about things like what day of the week is the first day of the week and wondering what the hell I did wrong in order to be sent to such a weird place to begin with. Raising your hand to go to the bathroom? And worse—having to say so out loud?

That was my five. Eric’s five is different. Very different. His older brother, Nathaniel, IMs me sometimes and tells me things that I’m probably better off not knowing. Here’s a recent offering:
today was Eric’s most destructive day ever/ he ripped apart every lego ship that was in my room/ broke the tv/ knocked over jack’s coffee pot/ did something else with coffee pot/ dumped out daddy’s kit bag/ ate some of my candy/and was mean/ and he hurt himself a lot too.

That was Eric’s day. A single day. And it’s many of Eric’s days. His dad recently told me that at their house, Eric likes climb onto the kitchen island, take off all his clothes and diaper, and dance and sing. Which wouldn’t be too bad a thing except that according to his dad he also has a habit of removing his diaper after he has pooped and sometimes flinging the stuff around.

Eric’s dad says he is considering the various uses of duct tape, but meanwhile there’s a larger problem at work. What’s sort of funny and cute (all poop aside) in a three-foot-tall five-year-old is not so cute when he’s twelve. Or sixteen. Or twenty-five.

Before we start considering the merits of parenting practices, consider this: sometimes kids just don’t fit within the mold. Last year I read the book Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About Raising Kids with Special Needs. In it, parents wrote about their experiences raising kids with special needs of all kinds. Most poignant were the stories about heartbreaking choices faced by some families whose kids were simply too destructive, too physically violent, too lost within their own worlds to function within a family and a society. These were parents who made the hard choice to have their kids institutionalized. At the time I thought judgmentally about better parenting and about spending more time with kids and about maybe just not loving them enough to make a go of it. Since then I’ve wised up a little. Things are not always that simple. Sometimes just loving your kid isn’t enough. Sometimes you need help.

While it’s clearly still very premature to think anywhere close to seriously about Eric and institutions, I have to go down that road in my mind. I have to deal now with the what-if and the just-in-case. If I don’t do this now, if I don’t consider all of Eric’s possible potentials, I may be blindsided later. Yes, Eric is five. Developmentally he’s somewhere in the two range. And we’re not that surprised when our two-year olds don’t listen to us, when they run away laughing when we tell them to stop doing something, or when they take off their diapers and dance. This is the quintessential Two. But as much as I want Eric to be able to function independently one day, there’s a chance he may not be able to. For every kid with Down syndrome who goes to college there are thousands who don’t. Down syndrome, like autism, is a spectrum. No two people with DS are alike. And I can’t stay in a state of denial about what Eric’s future may hold.

I’d love to say that this is a case of bad parenting. Blame it on The Ex. But I can’t. I see how Eric is in a world largely of his own making. It’s a world that contains Curious George and a lot of ice cream. It’s a world that contains beautiful moments with hugs, his first kiss, and infrequent but honest attempts to help. It’s also a world that I’m not entirely a part of, and one that Eric can’t really explain to me. He can’t explain what sometimes makes him laugh for seemingly no reason. He can’t explain what he gets from throwing things repeatedly at the walls. He can’t explain his apparent satisfaction from breaking things. He can’t explain what he’s thinking, or feeling, or who he’ll be in ten years or twenty.

I have to go down all the roads Eric might travel and make sure there are as few bumps on those roads as possible. It’s what we do for all our kids—but usually we’re looking at different roads than Eric’s roads, and usually our kids are looking down them too. I will love that boy for as long as I am alive. But it’s important to me to look at all the possible Erics there might ever be, and test now what it feels like to love them, before his road gets so bumpy that the bumps are all I see.

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