“What’s that thing on their shell again? The breathing hole?”
“Aaah, what?”

Exasperated sigh and theatrical roll of the eyes. A script of how to react in frustrated disgust to a parent she now has down pat yet she has a way of doing it that you can tell she’s not fully committed. I smile and raise my eyebrows in mock fear. She smiles with pride at getting a reaction.

“What are we talking about?”
“That breathy thing on a snail.”
“OH! The breathy thingee, well that is a “pneumostome”.”
“Oh, RIGHT, a new-go-stone.”

I laugh and pour cereal into bowls for them as she labors over another diagram of a snail. She finds a new interest and all other interests in the world are lost on her. I admire and envy her focus. Once upon a time I could do so marginally without any interference of responsibility or obligations. Now? It takes me months to read a book and weeks to complete even a simple blog post. My whole life has been consumed by the needs of my kids.

Calling a kid with autism “special needs” is an understatement and an insult in my mind. Their needs are no more special than the next kid but they do require a larger amount of patience. Yet everything else they require is no different than anyone: acceptance, support, understanding, kindness, love, friendship, and an education. Yet my kids struggle to receive any of those things once they leave their home not because their needs are special but because most people are @ssholes.

The weight of navigating the bureaucracy, the research, the notes, the meetings, the constant strategizing, the networking,… I watch Nora work diligently on her gastropod diagrams that she’s created for fun. Where’s my pneumostome? Where’s my direct pipeline to the additional air that I need to stay afloat? How could anyone be around this kid for ten minutes even and begrudge her the opportunities she has every right to and deserves?

There’s days where I’m so low I’m ashamed of myself. Lower than PPD, lower than when I was addicted to drugs in my teens, lower than when I was in an abusive relationship, lower than when I was homeless after that, lower than all the times I lost it all financially and had to scrape my way back. Because there’s nothing lower than resenting your life while fiercely loving the kids that make your life so difficult with the demands that it takes to keep all of the working pieces of our family functioning.

This has been the most challenging phase of my life. The revelation and the acceptance of having a family that is neurodiverse. I know other phases will follow but every day lately feels like a constructed test scenario for research on resourcefulness and resilience. Juggling two different schedules for two very different kids who attend completely different schools where I get hit up for volunteering and donations all while being turned away for accomodations or support for my kids.

“Tell us what we can do to support you and your child.” I’m not sure how many times I’ve had that platitude slung my way in a canned email response from one of my kid’s schools. Before I responded politely and civilly with a nicety to show them I received their response and there’s no hard feelings. Now I respond with, “My kids need a proper education without discrimination.” Period.

I’m grumbling to myself as I slurp my coffee and mulling over these thoughts when I’m interrupted.

“Hmm, yeah?”
“I think I want to sing “Firework” for the talent show.”

I start to cough and sputter on my coffee.

“Uh, ok…there’s a lot of lyrics…have you been practicing?”
“No, mama, you’re going to help me.”

Oh, #uck’s sake.

I start to pat my back and twirl in erratic circles like a dog. She looks at me strangely and laughs, “Mama, what are you doing?”
“I’m trying to find my pneumostome.”

2 thoughts on “Pneumostome

Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s