Charades

Sometimes it shocks me how much other children talk. I’m just not used to how much little kids can say with their high little voices, bulleting out words, often so stream of conscious and unrelenting as to wear me out just to overhear. Today, I am struck by this in a public restroom. When I picked a stall next to one housing mother and child, and the child is talking all through the whole procedure of peeing, it astounded me. My 11-year-old son doesn’t yet pee in toilets, dependent still on training pants. (I worry he needs more disciplined parents to get him over that hurdle, but oh lord how we have tried.) But he also doesn’t yet speak. At least not in a way you would call speech.

Certainly he doesn’t talk like this little girl in the stall next to mine. She talks about the pee on her leg, and the amount of toilet paper she would like to use, and how cold the snow is when she doesn’t have her mittens on, and how she would like pink mittens please. Her mother reminds her that her mittens are pink, and she replies, “of course” in a way that is clearly mimicked, but also makes her sound world-wise and somehow forgetful.

When Noah notices a color, he says “yellow,” which means “color,” but also might mean “yellow” or maybe “blue.” Yes, he says “tired” and “no tired” and “up” when he is sleepy or not sleepy, but that’s about as revealing as when a dog sits by the door wanting to be let out. This may seem ridiculous, but when we first learned that Noah might never talk, I thought I might be ok. Worse things, right? After all, we’ve owned dogs for years and I’ve had fruitful and loving relationships with each them. Hardly. We only want from dogs what they are able to give. We want more than companionship from a child. With a child, we want to see ourselves. We want proof that everything we put into him has developed his inner self. Then we want to know that person. It’s a gift to know your child, for your child to give you more than you gave. This life? This life, well, it’s more like living in an echo.

Noah calls himself “No-nah” or “No-no” depending on the day, but he cannot say his own name. Can you imagine? Eleven years, and you cannot say your own name. Nor has he been able to learn to say 3 words in a phrase that might shape a concept for us to grasp onto. If he has an imagination, I don’t know what he daydreams about. I don’t know if his stuffed animals have names other than “bear” or if he could parrot a conversation between two adults in that way of not understanding context that kids have. “Kids say the darndest things” and “out of the mouths of babes?” Oh well. Why long for something that can never be had?

Still. What would it be like to have a child who talked? A child who talked about nothing and everything? Whose brain, whose daily life, I could have some access to? That’s the hardest thing: to not ever know anything about this child beyond what I can witness. Sure, parents are all bystanders to our children’s lives, but what if he could give me access to his thoughts, his dreams? When he wakes up crying in the night, I do my best. I guess it was a nightmare. Or maybe he feels sick? But I can’t know. When he falls, I try to detect where he was hurt through trial and error–“Is it your foot? Your toe? Your leg?” while he points to his mouth which he obviously didn’t fall on–, but it would be that much easier if he told me what hurts. No, not easier, it would be…more like mothering to know what my child feels when he feels pain. Then I might know how to fix it.

People tell me I know my son better than anyone else. And while I suppose that’s true, it’s also the farthest thing from the truth. And very little comfort. I don’t know him, because much of what I know is what I tell myself, not what he tells me. Sure he can ask, “Why?” or say what sounds like “What job?” but might be “What’s that?” But it’s not like he can tell us a story about something that happened at school that day, and ask, “Why did that kid do that?” or “Why do they always serve Fruit Loops for breakfast?” or, “Why can’t Ms. H be my teacher forever?” The list goes on and on.

Can I understand what little he can say? Yes, a lot of the time. Certainly more than other people in his world, even those who love him best. I can reinterpret his utterances, his hand motions, his defiance. I can translate his few words into concepts others can grasp. When we are walking through the grocery store, and he points to a stock cart, and says “truck” in that way he does, and looks at the stockboy with a smile, I can explain, “He loves carts.” But when I think too much about it, about his inability to communicate with people other than me, the limits of how much he can explain, declare, ask, prevent, well, I go a little crazy. Someday he will be 50 years old and I will not be alive to translate for him. And who will protect him then?

It’s lonely for me to be with him, and I wonder if life is lonely for him too. I wonder if he has all these pent up words that he really wants to say, that would spill from his lips if his brain could speak to his mouth in a way that produces words. When I ask him how his day was, and he gives me the ‘thumbs down,’ I can’t know if he is thinking over his day at school and truly assessing it, or if he is only thinking about the last thing that has happened, or if he is being silly and saying that the day was bad when in actuality he doesn’t have the deductive or summary skills to know. So I guess in one way it is good that his brain is pretty limited in its cognitive ability too. Maybe he doesn’t wish to say more because his brain doesn’t really produce more that he desires to say.

But somehow I doubt that. Maybe he doesn’t have much to say, but I’m pretty sure that if his mouth and lips could form “I don’t want to go!” or “Can I have ice cream?” he would like that too. Even if he can never tell a story, I suspect he would like to tell a joke. And I suspect he would like to ask your name, say “Good morning,” ask for pink mittens. We introduce him to other methods of communication– ipad apps, sign language, push button ‘talkers’–, but he’s so singularly interested in speech, despite the struggles, that it is his default. He tries, we try, and all we can expect is to get somewhere close. There is no target beyond almost.

I’ve likened life with Noah to an unending game of Charades. That seems uncharitable, and of course minimizes the gravity. But maybe because I need it to. He produces sounds, and then it’s our turn to do the work. We offer him options and wait until we hit on one that makes him nod his head yes. And just like the game, we cheer when we guess correctly; we may even smack the sides of our head with an open hand, and say, “Oh duh,” because it has taken us so long to figure out he wants peanut butter, not butter, on his toast. And then Noah too echoes, “Oh duh,” and laughs at our stupidity, like he’s never expected us to understand him, like he’s any other child who thinks his parents are barely tolerably intelligent. And then, very likely, he will not eat the peanut butter toast, because that totally was not what he meant. But how were we to know? It’s a game we can simply never win.

The Only Way Out is Through

I am finding joy
in the little things again.
A jar of spice,
that pungent powder,
from a specialty store,
two spry puppies rolling
in a social sparring,
a truffle of dark chocolate,
cool line of liquor
flooding my tongue.

I am finding joy
in his crooked finger
straining upward, pointing
to the waving leaves and limbs
of trees, to boats bobbing
in the lakefront marina,
to the eighteen-wheeler sliding
past us on the freeway,
to the wedge of toast hidden
beneath pale yellow eggs.

I am finding joy
not in the measurements
or accolades, nor the “whys?”
and wants, nor the precociousness
of a typical toddler.
I am finding joy in him,
he who deserves
to be celebrated
as a joy onto himself.

Adagio

Most people claim that time passes too swiftly. Parents in particular. There isn’t a day that goes by that I don’t hear someone exclaim—at a birthday party, at the worrying of a loose tooth, at the advent of kindergarten, in celebration of a baby’s first steps—”They grow up so fast!” No, they don’t. Not always. When parenting a special needs child, one with delays in development, the reverse is true. Time passes slowly. Sure there are still the loose teeth, the outgrown corduroys, the first days of school. The body grows, and time passes, but we are parenting in adagio. There is still music playing but at a pace significantly slower and often less dynamic than the usual exciting, staccato rhythms of life with children. Sometimes, in this special kind of life, time plays out like a dirge. Particularly during the frequent illnesses you have no control over, or during the IEP [individualized education plan] meetings where for several hours a number of well-meaning people tell you, unrelentingly, just how behind your child is, or during the tantrums so inappropriate that it is anything you can do to make the seconds speed by before you can leave Target. Superficial, yet critical: I have been watching the same Elmo’s World episodes for nearly 10 years. I can no longer understand parents who bemoan the passage of time; I crave it. And yet, I also fear it because with each year, my son’s age splits like a widening gulf between the years and his capabilities. My 10 year old is a 3 year old; someday I hope my 25 year old will be my 10 year old.

The hard-won gift of this glacial pace is, however, in those moments when your child, no matter how delayed, shows the mastering of a new skill. Noah did not walk until he was 3 years old. And now, over a year later, I watch him with eyes filled with awe as he runs awkwardly through the grass at our neighborhood park. He did that! It is something he did, that he once hadn’t done! And in those moments, it doesn’t matter in the least that he looks nothing like the other children running around him, that his gait is herky-jerky and he is expressing a level of glee that have most of the kids looking at him like he’s just broken their favorite toy. It doesn’t matter the tears shed or the doctors’ appointments booked or the therapy sessions tolerated. In other words, the time that is past no longer matters. No. Those moments linger like a singular note held after a bold crescendo that is so beautiful, and simple, and clear that it is physically painful the longer it is held, and yet, you can only savor it as long as it lasts.