All of Long Journey on a Short Bus:
Donít Tell My Kid Heís Okay
Eric and I were in a hotel lobby. We had a date to climb the stairs to the second floor together so he could see me watching him jump down them again one by one, but before we could do that I had some business to take care of with the people behind the lobby counter. While he waited for me, Eric engaged... read more
Having a Sibling With Down Syndrome
Nathaniel and Serena, Eric’s older brother and sister, arrived in Seattle last week to visit me before school starts. They got in my car, looked around, and then at each other.
“It feels weird without Eric here,” Nathaniel said finally, seeming a little lost without the... read more
This Year, He Gets a Pony
So your kid’s going to kindergarten in the fall. Congratulations. Quick! What should his college major be? YOU HAVE TO KNOW NOW.
[insert Jeopardy music here.]
What’s the matter, can’t decide? Maybe because Junior still can’t properly pronounce his... read more
Heads: Rocket Science; Tails: Basketweaving
My son Eric is being kicked out of preschool. Kicked upstairs, really — next year he’ll be thrown into kindergarten instead, stepping into the flow of his next 20 years. Public education, special-needs style. Short bus stuff.
The Transition has been taking place for months,... read more
I Have Down Syndrome Radar
I spot them, the people with Down syndrome, a mile away. There’s something about them that’s instantly recognizable to me, something in the way they hold themselves or the way they look at other people. It’s... read more
Yes, My Kid is Retarded
Go ahead. Call my kid retarded. I don’t mind.
No, that’s not a challenge, go ahead call my kid retarded I DARE YOU. (And then WHAM! Off with your head!) It’s not a trick. It’s not. Really. It’s … an invitation.
... read more
Off to never never land.
They’re talking about school next year. My kid is going to school. Not the special ed preschool he’s attended for the past three years, but school-school. Big Kid School. Short bus school. Maybe even mainstream school.
I don’t want it.
When Eric was... read more
He's not quite for sale.
You sort of have to admire anyone—even if it’s a child of just five—who honestly doesn’t care what people think of him. A kid who seeks to simply enjoy himself, not at anyone’s expense, but just from the joy it brings him.
I wish I were more like that.... read more
Revising the rules.
He was clearly excited and he clutched his ticket tightly, keeping his eyes on the airport gate agent. From time to time he glanced at other passengers milling about and waiting to board the plane, answering their questions—if they acknowledged him at all—with a quick nod and a smile. His... read more
Bumpy Roads and Poop: The Big Oh-Five
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... read more
It was going to be the perfect birth. Under soft gentle lighting, bathed in quiet contemplation of the perfection of this tiny soul we were welcoming to the planet, my son Eric was going to make his appearance. Everything had been planned: the warm-water birthing tub, the midwife, the music. Everything... read more
My kid's going to die. Is yours?
The thing that sets parents of kids with special needs apart from other parents is simple. Death. The rule is that parents die before their kids do. That’s the way it’s supposed to be. Everyone knows it, and everyone accepts it. Kids are not supposed to die first. It’s against the rules.... read more
Last year just before Halloween we shopped for costumes. Each and every year for years before that I had lovingly and painstakingly sewed intricate costumes, despite knowing next to nothing about sewing, but now that Eric was of age to wear one I felt too exhausted to even consider sewing three complete... read more
Saving the world.
I dreamed about Eric this morning.
In the dream he said to me, “I want some cold milk,” and then he walked into the kitchen and sat down on the floor in his customary spot where he waits for someone to get him a drink when he wants one.
I know it was a dream... read more
Outside the Box
I have decided that in my next life I am going to be my son. Of all the people I know he is the one who seems to be having the best time.
Eric goes to a special-needs preschool four mornings a week. Other than some cryptic hastily-scrawled daily notes on what he did that day (story: check;... read more
The support group didn't cover this part.
I have a secret.
Well, it’s not really a secret. Anybody with half a brain can see that my son has Down syndrome. Of course, anybody with Down syndrome only has half a brain. Ba dum bum.
(I can tell those tasteless jokes because believe me, I have earned the... read more