137. Across Worlds

I am away in Singapore for a family wedding while my husband holds down the fort in the US. All of the Memorial Day weekend, I’ve been cognizant of him pulling solo duty so that I can be part of extended family happenings. We knew there would be lots of travel and separation involved when we embarked on an international marriage, but this stuff is high stakes, and I am not able to find words for how it makes me feel.

A has been using his speech app to say “I want Mom.” Every time I think of that, murky things happen in my heart, so I made a little video of all of us here saying hi to him, telling him we love him, and that he is handsome and fabulous. I’m told he has been watching it avidly. Isn’t technology something?

R has been his dad’s right hand man. As the hero to A’s laughing sidekick, he knows his own worth, and wears the mantle with the casual disregard which it behooves a sibling to assume. He gave up something too–since we had no sitter this past weekend, he played piano at a recital in New York City with no family member in attendance to cheer him on. I watched the video, but am going to have trouble forgiving myself. Thank you to our dear friend P who drove him there along with her own stunningly talented son.

We text all the time, though. Last night, at around 2.30 am, I answered a funny message of R’s, and he scolded me the way I would scold him: Why are you still awake? Go to sleep. Zzz. 😉

There are many autism heroes. They don’t wear capes or uniforms, but they are instantly recognizable to me. They are my family, the people who work with us, the people who support and uplift us, the people who listen, the people who nurture us in ways unrelated to autism. I pick up on all the ways you offer your energy to me and mine, and I want you to know that I receive it with humility and wonder every time.

They are also people like A. In all the ways that matter, he gives up the most when one of us is away. He gives up certainty. He has no real way of seeking information as to why his core circle has diminished; if he asked, he could not immediately process the answers. So he has to wait, and hope, and stim, and watch everyone, and everything that happens, searching for clues. Perhaps one day soon, his dad will engage in a fit of frenzied cleaning, and A will know that I am returning.

There is no real stepping away from Autism Land. I carry it in me always. Even when I am able to participate in events and interact in neurotypical ways. I am acutely conscious of it being just one way to exist in the world. “Normal” is forever changed for me. Even while I celebrate the respite, drink in the accomplishments of the young people I am visiting, and socialize with people I don’t get to see enough, I long for my weird little clan. We may not travel as a collective much; social life will never be our strong area; the daily tasks of life are often a complicated tangle for us–but we exist in a sphere of acceptance.

They are every bit as much here as I am.



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