104. Under the Rubble

“Under the Rubble’

Holidays are one of the more difficult parts of being an autism family. They are rarely restful, nor do they usually feel celebratory when joining in crowded activities is not always possible. From being on various online autism support groups, I am keenly aware that our experience is not unique. Some of the things other moms express tear at my heart. We are all together yet we are pushed apart by our circumstances.

This kind of parenting pushes many buttons which are difficult to even acknowledge. Dreams of a certain kind of family life extinguished. Constant guilt. Isolation. Caregiver fatigue. Unbearable tedium. Interrupted sleep. Interrupted conversations. Fried brain that has to be constantly alert. Hearing loss from being around relentless screaming. Suppressing our normal range of emotions till we no longer react even when we should.

There are no facile solutions. We still have our duties. And we have to function in the world, where we are expected to compartmentalize. How do you treat autism parenting as a moveable piece when it is so decidedly not? You cannot. To try to do so is ludicrous.

When called on recently to describe honestly how I have felt all these years, I said, “A building fell on me, and now that rescuers have reached the cement blocks that are directly on top of me, they have to proceed with extreme caution because, if everything is removed at once, I might hemorrhage.”

Patience. Honesty. Accepting harsh truths. Owning grief and rage. Tossing aside the mantle of self denial. Refusing to wear any descriptive labels that don’t fit. Forging lasting steadfastness, not fleeting bravery.

Slowly I am learning to tell myself these things: Before I love anyone else, I will love myself. I will accept with openness the sincere help offered to me. I will open my heart to healing my grief. I will refuse to paper over my true emotions. And I will restart my pulse with conscious intent, a will to survive, and a nascent belief in my own endurance.


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