A Necessary Conversation

“But know everything lost will be recovered
When you drift into the arms of the undiscovered
And I don’t know if I’ve ever loved any other
Half as much as I do in this light she’s under”

-“Me and Magdalena” The Monkees, with Ben Gibbard

••••••••••••

The amount of time I have put into this battle for my child’s development is unbelievable in the two weeks since I learned that this was most likely what was happening to us. I am up at night. I am on my phone during the day. I am constantly looking for some sort of clue as to my next step in all of these processes. Great, the school district has my paperwork. But now what? I am teaching myself vocabulary, clinical and behavioral processes, and patience and I am doing it non stop on autopilot.

Hey there. You, here. I noticed you have been ignoring me. You won’t stop talking to strangers. You know we don’t like calling strangers. You just made your gynecologist appointment on the internet. And the rate at which you are making me remember all these new words. You are astounding and I hate you. What are you doing to us?

In between my time out this past weekend, recovering from the weeks behind me and enjoying the company of supportive and loving friends, I put together a chart in order to track our morning routine. So far, on this, day one, she is understanding the idea of follow through and the reward afterwards (one sticker each task). I have tried to get her to participate in the bonus sticker, which is cleaning up, well, anything, but we aren’t there yet. Five of those stickers and she gets a small toy. Getting her to understand cleaning up as well as many other social cues (going to sleep, not eating from the table with her face only, not using the walls as places to draw, using a potty) will all come with time and effort. The chart is the start of many charts, and the eventual use of timers to give her the idea of time and restriction.

Whoa, whoa, whoa. Wait a second. You are doing arts and crafts? Where is the final draft of this book we poured almost a decade into? And timers? You are a hippie, you don’t run on the man’s time!

I got through new appointments and waiting lists today. We were up since 5am so there were a few lulls where I was able to focus on researching a developmental pediatrician. I also discovered a few other things that will be useful to this whole adventure we are on. I endured a few scratches, the meltdown this evening was rough. We will need to figure out the best way that we can get her a good night’s sleep. She fell asleep at 11:30pm after trying for almost three hours on and off to get her settled. “I hold you,” she says to me, grabbing my arm and pulling it over her. She only knows how to ask me by repeating what I always say to her.

Waiting lists? Adventure? A few scratches? Let me explain something to you from up here in your head, lady. I think today, after 28 years, you have reached peak pressure. Your attempts at patience are no longer laughable, they are actually beginning to work.

Oh yeah, you. I didn’t ask you.

Your anxiety was bubbling. Tears were waiting impatiently behind your eye balls to make their big entrance. You had a panic attack over the rice! You consistently stare at the computer screen, typing in every possible combination involving the word “autism.” Little sleep, you are forcing yourself to eat and smile. Do you realize I know what that feels like? How it hurts me on the inside? What about me? I have needs!

Shut up.

You spent a whole day smiling through actual physical pain. You did not whine once. Not one scratch. There was an actual drop of blood. You offered hugs. What are you on?

I am on love, dipshit. Undying, incredible, maternal love. And you are just going to have to grow up.

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2 thoughts on “A Necessary Conversation

  1. LOVE the end to this piece. I can so relate to parts of this … the talking to strangers. Uggh. I made so many phone calls and had so many meetings to advocate for my son’s services. Definitely outside of my comfort zone!

    • Absolutely out of my comfort zone! Things like Seamless and Grubhub were the best things to ever happen to me because I hate even ordering food! But I’m prepared now. Two weeks of this has already made me numb! And of course, anything for her. 🙂

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