Updated: Apr 7, 2020
*Most authors for this blog series have chosen to remain anonymous in order to protect the confidentiality of their children while still sharing their story. Documenting our stories helps us process our experience, sharing our story helps us connect to others with a shared experience, and reading others' stories help us not feel so alone. Welcome.
The noticing; that is how it begins. Tiny, prickly, green shoots of noticing push up into a fresh and growing garden, barely perceptible among the blooms of love, joy and hope. Weeks, months and maybe years of wanting come to fruition in a miraculous, yet uncontrollable gift, a small human, a child with a future, both dependent and utterly separate from you. You smell him, rub lotion on his ripe-peach skin, blow raspberries on his tummy and hope desperately that his journey in life is more happy than not.
While he learns to smile and sit up, you begin to rebuild yourself, un-doing those pieces of you that are incompatible with parenting—knitting together new ideas, identities and skills into some same-but-different-parent-you. You let go of parts of yourself that cannot exist in your new shared space. You do not do this rebuilding alone. The world around you does it too. Whatever you were before in the eyes of your community is amplified, quieted or rejected in service to parenthood and all that society demands of it, and of the same-but-different-parent-you.
You are all building. Your baby is painstakingly erecting the person encoded in his DNA. His brain is folding, plastically molding and remolding neural pathways, his nervous system calibrating, regulating and dysregulating in response to his new environment. He is not a blank slate, not a tabula rasa. Like you, he has a temperament, proclivities and challenges written into his plans. He is a being formed by the interaction of what he is and the world around him.
As you watch him build himself you notice roughhewn, wabi-sabi authenticity that is divergent and handsome. He is both inquisitive and hard to soothe. He loves toys with wheels and hates water. He hums when he snuggles and his startle reflex is as violent as a shell-shocked solider. He struggles to regulate unless his skin touches yours and so you wear him skin-to-skin and pace and sing.
He sits, crawls, and walks on time. His first word was not “Mama” or “Daddy” but, “plant.” The scaffolding of his personhood complete, he begins to construct the world outside him. He erects complicated Lego sets, following the picture-based directions, one by one until he has assembled a fighter plane and you are certain that he will be an aero-space engineer. He orders his world, lining up cars by color and size and instructs you pedantically how to drive the cars on the road play-mat. You happily comply, because it is such a very interesting world that he has created--unconventional and fastidious, but amazing nonetheless.
The Age of Trains
His world is not imaginary. He does not pretend to be a super hero or play with puppets or action heroes. He abhors costumes. Instead, your son builds intricate wooden railroad tracks, wondrous, three-story constructions with turns and swirls and angles. At children’s museums he makes a bee-line for the train table as if there is no other toy of note in the entire building. He tries to share the trains with other children by “assigning” them the trains he would like for them to have and “teaching” them how best to drive their trains on his track. You carefully insert yourself into the gaggle of tiny bodies and explain, in simple terms, reciprocity and cooperation. He does not understand. Nearby, parents’ eyebrows furrow and you notice. You take his tiny hand and lead him away.
Bath time is hand-to-hand combat—he is no shipwright. He stands by the tub, containing one inch of water, and screams as if you intend to drown him. He does not like sand, scratchy fabric, non-beige food or the sun in his eyes. A nice professional informs you that your beautiful boy has Sensory Processing Disorder and you embark on a course of Occupational Therapy. You feel good, like you have done something helpful and you relax into the rightness of it. He begins to bathe without pandemonium and you exhale.
You notice that your boy, tall, strong and strikingly beautiful, is also scared—not just of the dark—but of dogs, new places, escalators, sleeping alone and movies that are not "Thomas the Tank Engine." His scared is palpable. He shakes and wails and, variously, fights, flees or freezes. To help him, you do pre-visits to places like school, when the building is empty, so that he will know what to expect on the day of the real visit and maybe you can both avoid a meltdown. Other adults describe your “anticipate and avoid” strategy as “spoiling” your child. Those parents’ children are not afraid of new places, you notice. You also notice how the word “spoiled” hurts just above your right eye.
Learning is easy for your son, especially math. He loves numbers with a gentle devotion and implicit understanding that looks like music. He counts anything he can find and tells you the fastest route between places, before you can enter the destination into your GPS. In Kindergarten he starts playing chess and soccer and basketball. You can still beat him at all of them, but not for much longer. He sees the angles on the soccer pitch, knows how to sacrifice a pawn but struggles to sleep alone.
His teacher asks for a meeting. She tells you, in a firm, disapproving voice, that he is not walking in line appropriately—which you were unaware was a skill required outside of prison—and he does not sit still in circle time or keep his hands to himself at his desk. He wants very much to make friends, she tells you, but he is too domineering and too bossy. You suggest to the teacher that your child wants to comply and make friends but that he is quite nervous and tries to soothe himself by controlling his environment. The teacher tells you that your child is bright and capable of doing better. She holds your eyes in a fixed stare that says “don’t baby him.” You feel your stomach drop. You notice that if you watch your beautiful boy with an outsider’s eyes, without five years of experience, you might think the same thing the teacher thinks. And your stomach drops again, this time with the familiar pain above your eye.
One night your boy is lying on his bed, sobbing. You reach out to him and ask what is wrong. “I don’t have any friends,” he bawls. His face is wet and snotty. He curls his thick body into a ball and cries himself to sleep while you rub his back. You cry yourself to sleep, too.
The Age of Pokémon
As elementary school goes on, the passion for trains expires and your son finds, Pokémon, a hobby that gives him something to talk about with peers. He is now so focused on Pokémon that his teacher demands he write about “something else, anything else” and texts you a video of him bouncing on a yoga ball chair while he reads another Pokémon comic book in class. At home, when he is not trouncing you at chess—you can no longer win and so he tells you where to move to prolong the game—he organizes his Pokémon cards into fastidious binders, reads long Pokémon handbooks and watches Pokémon cartoons. The cartoons are so bad, so campy, that you can hardly stand to be in the room when they’re on. He eats 11 foods and is rarely invited to parties or play dates. Occasionally, he makes a new friend, but it doesn’t last. On play dates he is over-excited, domineering and rigid. If a game has rules, he enforces them at the expense of keeping the peace. All of these things you notice. They plant themselves into a knot between your shoulder blades. The pain above your right eye spreads out across the side of your head where it pulses like a villain in a sci-fi novel.
Diagnoses mount up: SPD, ADHD and anxiety. Medication helps but is not a panacea. He attends social skills camps and classes. His ability to make and manage friendships improves but is still significantly different from his peers. You overhear other parents talking about play dates and birthday parties that your son was not invited to and chase away the pain with a glass of wine. You investigate and research and feel like the professional advice you have been given is incomplete. You worry. When you share your worries with other parents and teachers they tell you he is fine, “all boy,” a “bit ADD maybe,” goofy and immature, but assure you that what you are seeing, what you are feeling in your body, is not real. The word “gas lighted” seems fitting but you dismiss it as overly dramatic. You hate drama.
He is a sweet, empathic child. He takes amazingly good care of his little brother, demands you give money to homeless people and befriends the new kids at school. He stops basketball games to pick up the kid he just bowled over. He has a heart for the underdog. But his rigidity and anxiety dog him. Time and time again peers reject him and time and time again, instead of walking away, he pushes in harder, demands to be dealt with. He cannot read annoyance on a face until it is anger. He does not intuit personal space or understand polite rejections. When asked to name his friends, he lists kids that you know do not like him. Do you tell him so? What good would it do to hurt him? So, you smile quietly and swallow the hurt for both of you. You notice all of the things that he does not. And one by one the noticing plants itself in your body where you carry it for the both of you.
The Age of Fortnite
Now that he is older, peer rejection is more complicated and concerted. Kids invite him to play and use the play to ostracize him. They put him on a team with little kids and he erupts at the unfairness of it. He is big and bright and adults look at these temper outbursts and see him as the bully. They tell you so, often not to your face, but from the safety of an email. They think that he could do better if he only wanted to. They see his differences as a matter of choice and poor parenting. They use his beautiful gifts against him, as if to say how could something so beautiful have imperfections? But darling, you think, a beautiful thing is never perfect.
You buy him a PlayStation hoping that it will help him socially. He can invite kids over to play and join gaming groups. Fortnite becomes an obsession because playing with people online, mostly but not exclusively strangers, feels like having friends. You take away his iPad because all he wants to do is watch gamers on YouTube and it looks like addiction—Fortnite over food, family, and sleep. You know this is because the gamer’s ceaseless, casual banter feels to him like a conversation, but you set the limit and take away the iPad because pretend friends don’t help.
You think of your beautiful boy as a sensitive, extremely bright, somewhat mind-blind child. He can be difficult to manage when he is frustrated or stuck on a rule but he is never cunning or cruel. He rarely lies. In fact, you’re amazed at how readily he admits his mistakes when you ask him about a note home from school. More likely, he understands what took place differently than the adult who is reporting it, but he does not deny or obfuscate. Occasionally, he calls you at work to tell you about an incident at school because he’s worried about it and doesn’t want to carry the guilt through the rest of the day. When the pain above your eye blooms into a migraine, he spontaneously brings you ice and juice and lies down gently beside you, brushing your hair. You notice that your boys’ eccentricities are not a design flaw, but rather a feature, a defense mechanism, protecting his vulnerable, sweet soul.
Born from hope into love, your boy contains infinitely more beauty than darkness. His differences are not ugly. In fact, he struggles because they are largely invisible. It is hard to notice the hiccups amid the largesse. To those who have not built themselves beside him, his differences can look like darker things, like anger and defiance instead of frustration and confusion. But you know the splendor of his matchless spirit and commit anew to help him make his way in the world. You will walk before him, absorbing, where you can, the blows. No, that is not quite right. You will not walk before him because you and he are not, as it turns out, separate at all. Sometime over the years, while you were not paying attention, you have built yourselves together, as you have been from the first breath he drew. And so you carry on, intertwined, and you hope that you are strong where he is weak. You know the opposite is true. This, you understand, is love.
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