TL;DR

Why We Build TWO Broadforks..

Notes. Thoughts. Big Green Ideas.

I'm sorry Mr Functional Neurologist. It's just me.

wade neumann

Jan 27, 20265m ago

Categories

Autism
I-Wish-They'd-Get-It
Rants
Hopium

Dear clinicians,

I want to write this as a kind of apology — or maybe an explanation — Sometimes it looks like I must be totally checked out on you.

It's that moment when you're sitting across from a parent like me, sharing what are genuinely good results, and instead of relief or celebration, I go Nicole Kidman on you..

I ought to be lit up with excitement.

I might look down, or away, or suddenly very still.

Yesterday, that parent was me. I'm still embarrassed.

You were legit pointing out improvements in my autistic son — real clear signs of progress. The kind that on paper, absolutely deserve celebration. And I could feel your enthusiasm in the room, doing what it's meant to do: reinforcing progress, building momentum, reminding us that the work pays out.

And yet, I felt myself withdraw.

Not because I disagreed, or felt hopeless, or wasn't quietly excited..

I went quiet because I was guarding myself.

Parents like me often look flat in those moments, but inside there's a very active calculation happening. We're weighing how many times we've felt this feeling before. How often early gains turned out to be fragile. How many times we celebrated too soon and then had to carry not just disappointment, but the emotional fallout of having believed too hard. There's a knife in the heart and many in the back of parents who represent a kid this much..

So I get reserved. And yes I know you need a response from me.. I mean, you invested this whole hour in my family. At that price I ought to be holding a parade for you. Cause it's good news.

Instead of smiling.. I pause.

Instead of saying "That's amazing," I say, "Let's see."

Honestly, mate, you're asking a lot...

In other worlds — like trading — there are crude words for this: hopium, copium, doomium. They're ugly terms, but they name something real. And every #autismparent knows this stuff.

Hopium is what happens when hope gets inflated beyond evidence. Copium is what we reach for later to justify the cost of having believed. Doomium is when hope has failed often enough that suffering itself starts to become how you identify as yourself... Dont get to that point!

Parents of children with disabilities don't get to avoid this cycle. We live inside it.

So when we seem guarded in response to good news, it's often because we've learned that hope isn't free. It comes with interest. And once you've been called short a few times, you become very careful about when you let yourself feel it.

I still see potential. I'm not in despair. I haven't given up. I still show up, God knows I try to still engage, still do the work. But I've learned to let patterns emerge before I let optimism run away with my soul.

oh yeah, so many people think that Hopium is the fount of progress.. it's just not sustainable!
- It's Copium that drives the tractor of Parental stoic-ness..

The hardest thing to explain is that the most durable form of hope I've found only exists when its uglier cousins are kept under control. When hopium is strangled before it becomes addictive. Late nights and dreams and despair, and withdrawals. It's all there.
When copium isn't allowed to rewrite history. When doomium doesn't get to Netflix your identity.

That kind of hope is quieter. It doesn'tcome across well in the room. It doesn't always mirror enthusiasm in real time. But it is there.

So if you ever notice a parent go still when you share good news — if my eyes soften instead of brighten, if responses get slower instead of bigger than my lived reality — please don't assume indifference or denial. I'm justs hella bad at processing my daddy-guilt..

Sometimes what you're seeing is someone protecting their nervous system while scratching the sides of the deep-dark-pit to be staying fully present.

I can't afford to be reckless.

This isn't a criticism of clinicians. It's an attempt to describe what long exposure to uncertainty does to hope.

And if we can meet each other in the middle — your enthusiasm and our earned caution — maybe we can build something strong enough to last long enough to actually help our kids.

much high regard.

me.

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