When your kid is officially "different"
A break from regular programming.
You know it’s coming, have known it for a long time. You can write about this only as though it is happening to someone else, and to be fair it feels a bit like it. Like you’re seeing yourself from the outside.
You watch someone wearing your face sink down into the big squashy couch in the preschool office, sitting on her hands to stop them shaking. You follow her gaze and watch her eyes rest on the collection of lava lamps in the corner, finding some measure of calm in the silent glow and glug. She pulls one hand free and begins to fidget, tucking her pen into the spine of her notebook.
She’s braced and waiting for the bullet to come. You wonder if you’ll feel it, too.
“We see a lot of children here, Ms Sclera, and the thing is … you learn to spot these things.”
Right to the chase, then.
Thunk.
It hurts less than you thought it might. If anything it’s a relief. An end to the waiting, the wondering, the praying that you’re wrong. The knowing that you’re not.
You watch the you-but-not-you woman walk out of the preschool carpark, and call a friend, and the friend is kind. She means well. She says things like your son is lucky to have you, that you are knowledgeable and courageous. She also says things like I can’t imagine what you must be feeling. That it’s every parent’s worst nightmare, that she has watched her own children’s development with worry, and felt so relieved to see them master each milestone successfully. You can almost taste the relief in her voice, and it feels so bitter in your mouth you could spit. Thank God it’s not me.
I can hardly blame my friend. I like her for her honesty, and that’s probably got a lot to do with my own neurodiversity. At least she will tell me no kind lies about superpowers, or gifts. Because I can think of few things worse than inflicting the curse of growing up “different” on my beautiful son. I would do anything, pay anything, suffer anything, die, to keep it from him. The loneliness. The ache. The sick sense of wrongness inside, of being always out of time in the dance of relating, always stepping on someone’s toes, always the last one chosen. Waiting waiting waiting for the moment you get it wrong, the moment the eyes that smiled at you yesterday look right through you today, and for all the tomorrows to come. For reasons you don’t understand except that the fact you don’t understand is exactly the reason.
I planned to be completing and posting a half-finished piece on masking today.
Instead, I Google “causes of autism” again. All the links are purple, because of course they are. I force myself to truly contend with the full Bingo card of risk staring back at me, ugly in black and white. From the most frayed fringe conspiracy to the most cited science papers, it’s all there. Catching Covid during pregnancy. Being too sick to eat properly and keep it down. Maternal ADHD and suspected ASD. Numerous other cases of autism on my paternal side. Placental abnormalities and suspected partial abruption. Advanced maternal age. A winery visit before I took a pregnancy test, before I ever dreamed there could be a whole new life fluttering below my ribs.
I order laksa for dinner because fuck cooking. I can’t finish it and it tastes like nothing. I buy a bottle of pinot, and try not to burst into tears as the cashier asks me how my day is going. You tell me man, I’m buying alcohol at 10pm on a Monday in sweatpants. I smile, and make socially appropriate wet-red-eye-contact, and answer with a polite lie as one is supposed to when asked.
I hate that I’m even fazed by this, that I can’t just be unflappably accepting. It’s comical, and hateable, an idiot about to go full wine-mom for the evening because something might be *gasp* wrong with her precious poppet. I hate that I can’t be hopeful and positive about neurodiversity today, not even here on Substack, the place where I’m trying to carve something out of knowledge and experience and the hope that there might be some goodness along with the disorder. I hate that I’m a therapist who is currently absolutely not being therapisty, wishing I could hold myself and my family with greater dignity and grace.
I do know that this isn’t about me. I truly do.
I hate that it’s so hard to explain the tension of believing both things: my son is simply utterly absolutely himself, and wonderful — and — I wish I had not unknowingly, unwillingly inflicted the curse of difference on him.
I hate knowing that the worst moments of my own neurodiversity have all been when someone I love has wished I am something other than what I am. Not in words, usually. In subtle pressure, in quiet eye-rolls, in innard-squirming once-over glances. In silent sadness. In spooked-horse fear when I’m overwhelmed or agitated. I’m trying, I’m trying, I’m sorry, I’m sorry. I wish I wasn’t weird way more than you, I promise.
I must be so very careful not to do the same to my boy. I try to breathe, and think my thoughts, and sit with it all. I put the wine away after the second glass.
He’s very probably neurodiverse. That’s all.
He’s alive. He doesn’t have cancer, he hasn’t been blown into bloody meat in a war zone. He’s beautiful, and funny, and smart. God, he’s so smart. He’s relational. He’s phenomenal. Loving him is as effortless as breathing.
My mother used to tell me I was hard to love. At least — at least — he will never know what that feels like.
Anyway. Next week, some jokes.
Writing for a Cause
All subscription funds raised by Painting with Lightning go towards funding independent research in psychotherapeutic treatment development. My areas of experience and interest include suicide bereavement, sexual trauma, ADHD, addiction, and the use of AI in psychotherapy.
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This is beautiful, Skye. Your love for your child is so apparent through these heartfelt words. The last line says it all.
Being a parent is, IMO, the most heartbreaking assignment in the world. We can handle our own suffering, but knowing we’ve created a being that will suffer, perhaps because of us, can feel so unbearable.
In writing about your experience you gave us all- and yourself- the gift of connection. You’re not alone. You are building community here, among people who share your pain, and heartache, and yes- “other”-ness. 💓 Misfits perhaps, but misfits in solidarity.
Oh Skye. Been here, still here many days, sitting with those questions, dark feelings and fears, and at the same time the simplicity of who they are, the love. Thank you for writing it so honestly and purely. The weight of what we burdened them with is so heavy sometimes. Sitting with you there, reaching out a hand if you want one to hold. I know I do.