Year Thirteen

March 4, 2018July 11, 2018 ~ sehaldorson ~ Leave a comment

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

A Meditation, on Noah’s 12th Birthday

March 7, 2017July 10, 2017 ~ sehaldorson ~ Leave a comment

I woke early and put a pot of oatmeal on the stove to cook. Noah is recovering from strep, and now so am I, so we need something to eat that will be gentle on our sore throats.

I didn’t hear Noah get out of bed while I prepared breakfast. Didn’t know he was awake. Usually he cries out, wanting early morning attention, wanting help to get his iPad turned on, cold because he’s kicked his blankets off again. Instead, when I returned to the bedroom, his covers were pushed back and his space–which is exactly how “where your child once was” always feels, spacious, bereft–was empty. I had a flash as all parents do. Where is he? Where has he gone? Is he lost? Will he ever come back? Some parents feel it in the mall. Some when they have lost sight of their child in the backyard. Because Noah is never without me, my husband, or his respite sitter, I have yet to work on the muscle that all parents must strengthen: let your child off the leash of your attention; let them go out into the world without your eyes on their backs. But still, a moment out of sight has my heart jumping.

Independence is why we moved to this new house. In our old house, Noah would have awoken upstairs while I was downstairs in the kitchen. To join me, he would have had to navigate steep wooden stairs, and over the years, our caution, or warnings–“Noah, wait for me. Noah, sit down at the top of the stairs and bump down on your butt.”–had taken root and he rarely descended on his own. But this house is one story, and he occasionally will, as we’d hoped, move about the space more freely. Still, when I can’t see him, I get a jolt. Is he somewhere he could hurt himself? Is there something he could hurt himself with? Noah’s world is rife with hard surfaces and sharp edges.

I found Noah in the livingroom, sitting among his birthday presents that he opened piece by piece over the weekend. Diagnosed with strep throat on the actual celebration day, he’d had no interest in presents. And if you are one of the few people to know Noah well, you know that he loves nothing more than opening a wrapped gift. He doesn’t much care what’s in the present; he just wants to experience, I think, the mystery. What is it? Can I open it? Noah’s extended family knows to wrap a lot of gifts at Christmas. Socks. Matchbox cars. Books. Snacks. And still he’ll move on to yours. He’ll open them all, everyone’s, if he’s given the chance. Handing the opened gift to the owner holds its own revered place in the ritual too. But ultimately it is the wrapped that becomes the unwrapped that thrills him.

But this morning, his attention was pulled by the mass of 10 x 10 colorful, interlocking floor tiles we ordered and wrapped, a practical gift to be used as a mat for his playroom downstairs, to soften and warm the cold tiles of the refinished basement, to guard against risk. I stood in the doorway and watched him for a moment. Took a picture of Noah with a tile in each hand. Took a moment to feel what it must feel like to have your child play on his own; it’s a rare experience for me. To have quiet. To watch him use his body and brain to progress a concept, even if that concept is stacking floor tiles, which is what his goal seemed to be.

Noah’s need for help, for a companion, for interaction, is often a burden, one I’m certain me and my insufficient character have inflicted upon him. I’m not tough enough to force him to figure problems out on his own. I wasn’t tough enough in the face of one special needs child to have a second child, provide him with a brother or sister who would have not only been his sibling, but also his model. Sometimes Noah behaves like a dog, because the dog is sometimes his most ready mentor. When I indulge in the idyllic, I wonder how much more capable Noah would be if I’d been more brave. When I indulge in self-abuse (maybe the same thing?), I wonder why I couldn’t have found a way to be less selfish.

I’ve developed the skill over the past twelve years not to deal in the “what ifs” around Noah’s birth that circle with abandon like seagulls after a street fair. What if I had chosen to have children earlier, before my 30s? What if I hadn’t rushed back into the pursuit of pregnancy after my miscarriage, waited the recommended length of time for my hormones to reset? What if I hadn’t drunk the wine on my 33rd birthday before I knew I was pregnant again, because for some reason I’d thought it unlikely I’d get pregnant again so quickly during that time of hormonal flux. What if I’d simply decided children were not for me, and the seductive tick of my biological clock and the desire and responsibility I’d felt to make my husband a father hadn’t swayed me. Still, the “what if” of having had more children still haunts me. In this way, I know I have done life wrong. And I know I have done wrong by Noah.

Noah has made two piles of floor tiles. I suggest he might want to make more piles, sort by color. There are some days when he is up for the challenge of matching like items. I know he can do it at school as that is a kudos he receives regularly. But not today. He has tried to link one set of tiles, like puzzle pieces, but it’s too hard for him to align the tabs. He’s complicating his play in a way that would be considered dead simple by any child over the age of one: he’s crossed the room to collect more tiles to bring them over to those he has already stacked. It seems ridiculous that I’m proud he’s decided to extend his play in this way, that this is evidence that he identifies that there are more tiles to be had, that the room is big and even if he can’t see the extra tiles in front of him, he knows they are there. But it also seems like a sound observation. I am my own Jane Goodall, and I am neutral in my assessment of this rare being interacting with objects.

Noah’s world is small, his environment contained. Years of therapy have done little to expand his instincts with regard to space and possibility. There are a million small instances that I observed when he was very young that added up, like Tetris on its slowest speed, to my understanding of his natural limits. We dangled toys from the arching handle of his car seat, but he never reached out to touch them. He heard airplanes, but even if I got him to tip his head up toward the sky, he had no way of understanding where and what he was looking for. If someone calls his name, even someone he loves, who excites him, he smiles to himself rather than reacts. Some people process this as a lack of social skill; but we know his challenges are more nuanced than that. When he looks up, or to the side, his eyes twitch, a condition called nystagmus, and security and stability, comes from staying focused on what is right in front of him. When he stretches out his arm, he doesn’t seem to know where it is in space. And so, it becomes all of our responsibility to be the mountain that comes to Mohammad, and as I said above, that can be a burden when the mountain has shit to do.

It’s likely true for all children born in the early ’00s, but documenting Noah’s childhood rather rapidly changed from us pasting pictures in a baby book, to recording hand-held videos of him eating his first foods, interacting with his dogs, taking his first steps, and storing those little cassettes in a desk drawer to someday transfer onto DVDs, to movies and pictures accumulating on iPhones, ScanDisks, and out there in the cloud. It feels somehow more dismissive in Noah’s case. His progress is so slow that we’ve run out of accomplishments to document. He is twelve years old and has spent a half hour this morning stacking foam mat tiles, and I am pleased and find it a moment worthy of documentation.

I am pleased enough that I have edged into the room, seated myself on the couch with a coffee, and started to record this play session. I think to myself, if I posted this video on Facebook, it would be the most boring any of my friends could sit though if they committed themselves to it. And what would I type in the status update? “Say something about this video” the app instructs. Do I write that this video portrays Noah as he really is? That I have captured what it is like to raise a child whose progress is 13 minutes of self-motivated play regardless of what that play is? That this is as much progress as we’ve achieved in 12 years? That these moments of quiet meditation are more about me and less about him, about how I’ve fought to find an emotional equanimity that allows me to see and feel and know, but not see and feel and know too much. My practice has led me to identifying and stepping back from the edge.

Last weekend, I played in a tennis tournament, and doing so always requires me to perform some cursory small talk with my opponent before each match. And because these are women about my same age, 35-45ish, the usual topics are work and children. What do you do? Oh, that sounds interesting. Do you have kids? Yes, one son. Only one? Yes. (Some people make a sigh of regret here, which I always think is a bit presumptuous.) How old is he? Twelve. Oh, that’s a great age, does he play tennis too? No, he’s not really very coordinated. So he’s more of a video game kid? Well, he does like his movies, and he has his favorite shows. Then, does he play an instrument? No, he likes music, but is more into listening.

I prevaricate not so much any more because I’m afraid to talk about my son, afraid of the emotions that would well up unbidden, though that certainly was the case for a long time. I hedge my answers now because I hate to disappoint people. I hate to be the person who brings that into the conversation. And by that, I mean…whatever having a special needs kid might mean to that person. Maybe fear. Maybe even horror. Maybe judgment. Likely discomfort. Likely some embarrassment. Likely some sympathy. Definitely some awkwardness. Rare has been the occurrence of someone having a like story, an “I’ve been there” look to share with me. And so I deflect. Ask them about their kids, and in an about-face of my usual narcissism, I listen and ask questions. That is good practice too.

In my second tennis match of the day, my opponent told me about her two daughters, eleven and thirteen. The eldest is laid back and cool. The youngest is a drama-queen who obsesses about over-performing. She says the younger auditioned for a part in the school play and never got a callback, so spent the weekend lamenting, anguished, with her mother doing dancing-bear antics to try get her to look at the situation from a different angle. Maybe she did so well that she didn’t need to perform a second audition! (Which turned out to be true.)

While tamping down the voice in my head that wants to goad me into feeling sorry for myself because Noah will never, as I did, audition for a play, I told her I completely understood what her daughter was going through. I too was a lamenter, prone to wallow in how I understood reality, rather than choose to believe there were many more plausible scenarios than the most self-punishing and unfair one I’d settled upon, and that didn’t really change until I got much older. She asked me how I’d gotten over it. And I answered truthfully: I had children. I said, nothing teaches you that you can’t control everything more than having children. And she seemed to agree. I didn’t add that nothing teaches you that you can’t control everything more than having a special needs child.

Every parent builds, even unconsciously from a very young age, a whole infrastructure of exceptions and desires around what kind of parent he or she will be, and what kind of child he or she will raise. Even if your goal is to be the antithesis of a helicopter parent, that too is a preconceived goal. My son received a Future President onesie when he was a baby, and I happily dressed him in it. My enjoyment in seeing him wear such bravado wasn’t because I dreamed he’d someday be President, but because it felt like a symbol of his limitless potential. But that whole dreamscape that gets built over years of watching idyllic family-based sit-coms, judging your friends as they have children and raise them differently that you believe you would, worrying before you even give birth over Montessori versus traditional early education programs, and the like, forgets one thing: the child. With Noah, the only thing I can control is how well I parent him. And, at the risk of sounding the world-wearily know-it-all, that’s true for any parent, or, I believe, should be.

I’ve now recorded 13 minutes of Noah stacking floor tiles. He’s gathered them all from the furthest reaches of our living room. I’ve recorded his progress largely because it is progress, from the formation of a desire to the attainment: stack all the floor tiles into two somewhat uniform stacks. (I won’t know until a minute later that the end goal was to pick the piles up and hurtle himself and them across the room.) My son is 12 this year, and with practice I’ve learned not to hate myself, fate, a world full of expectations, or even him, like some everlasting duck-duck-goose blame game, and to sit comfortably with a reality I would never have chosen for either of us. I have this story to tell, and so I do.

I won’t tell you I’ve achieved a state of peace. I still wish we as humans didn’t celebrate birthdays at all, because then I wouldn’t have to confront what having a 12 year old with the skills of a 1-5 year old means. And I won’t tell you that fear of the future doesn’t haunt me to a degree that still occasionally dips its toe into mental instability. But I will ask you, should I ever upload the video, to watch for the full 13 minutes. To have the patience to wait it out. (Even if it’s to catch a glimpse of a black and white beasty roar-yawn his way past the screen in search of a dog treat when he hears my husband rustling in the kitchen.) Sit, and watch, and see what I get to see.

Charades

April 3, 2016April 3, 2016 ~ sehaldorson ~ Leave a comment

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.