June 20, 2013

Doughnuts and Inspiration

Photo by Salim Virji
I've seen a few inspiring videos circulating social media lately. I'm not talking about what is sometimes called "inspiration porn," videos, in which, for example one "normal" person does something nice for a disabled person, and we can all pat ourselves on the back and go about our day. I'm talking about videos created by people who themselves have struggled. This video of a Chris Varney's TED talk called "Autism--How My Unstoppable Mother Proved the Experts Wrong," is particularly good.

I watched that video and thought, "Okay! It won't be easy, but we can do this!" It goes along with the new and improved attitude I've been trying to embrace, something bold and fearless but never self-aggrandizing. I've contemplated a tattoo, but my dad said he'd be very disappointed if I got one. (Yes, I am forty years old, why do you ask?)

Jeff and I had a great talk a couple of weeks ago about finding ways to move past Moe's challenges. We had a nice father's day weekend, which even included lunch with my parents and their friends at a restaurant. Moe, as if reading our minds and also adopting this can-do attitude for himself, was so well
behaved and ate an entire pizza.

I've been worried, too, about the effect Moe's behaviors and poor sleep are having on Jelly. Jeff and I spoke about that as well. Even though this isn't the dynamic we imagined for our kids, they still do have a relationship that is all their own and will continue to develop. Jelly, who is incredibly bright and sensitive, could really become an extraordinary person because of her brother. Of course, she could do this on her own, and her relationship with Moe is valuable in itself. But having a sibling with special needs, I hope, will give her a perspective others may not have.

So...even with the last two days when sleep has kind of fallen apart again, Moe has been working and trying really hard. We are seeing progress. Jelly has been enjoying swim lessons. Moe and Jelly have had some really sweet moments together. Other good things happened. I watched some videos.

Enter, the doughnut.

Our nanny is on vacation for a couple of days so I had both kids this afternoon, and nothing planned. Even with the building confidence of the successful restaurant outing and inspiring videos, I know my limits. A visit to the park is out of the question. Jelly wanted to go to Target and even suggested Moe could stay in the cart and she would walk with us, but I declined this clearly well thought out offer. Instead, I thought of doughnuts. Moe loves a relaxing car ride, so I thought we'd go to Krispy Kreme, get a couple doughnuts from the drive-thru, and have a little treat. I'd even put on Jelly's playlist, consisting of a dozen crazy-making pop songs from "Call Me Maybe" to "Party Rock Anthem." Everyone would be happy.

The car ride was fine. Jelly got a doughnut with sprinkles. I was sucked in by the seasonal promotion and got a key lime cheesecake doughnut, which I do not recommend. I should have stuck with my standard lemon filled. I got Moe a plain sugar doughnut.

We pulled into the parking lot. I smiled and handed back the sugary treats. Moe (and there really is no other way to describe this), lost his shit. I have no idea why. He saw his doughnut and was literally frightened by it. This from the kid who has a reputation for cupcake eating. This was not his first circle of fried dough. But he wouldn't touch it.

I took a little video of this. I am not posting this because I am teasing him, or because I think it is funny. He was clearly really upset and I don't know why. I'm posting this because sometimes, when I say something like "Moe was manic" or "Moe freaked out," it's hard for people who haven't been there to know what that means. Today, this was what it meant. And though Moe has had many meltdowns, I have never seen him like this before.
video
I was not going to force my kid to eat a doughnut (though I did once basically force a date to eat a cupcake) and decided that our best course of action would be to start driving again, which did calm him down. At one point on the way home, Jelly offered Moe a white sprinkle, calling it "coconut." When I asked why, she responded that she knows Moe likes coconut so she called it that so he'd try it. He did. I then handed her a small piece of his doughnut to see if he would take it from her. He took it without incident, though he threw it on the floor.

We got home and I put on the second half of Finding Nemo for Jelly so she could finally see the end of that movie. Moe wanted a snack so I put the rest of his doughnut on a plate and set it down on the table. He looked at it, touched it, and then devoured the whole thing.

This is the thing about autism, or maybe just about Moe. He is unpredictable. I can do everything "right." I can create my "I can!" network, and I can presume competence and I can read blogs and watch every video of Carly and Temple and everyone else and on any given day, I don't know what will be our undoing. Today, it was a doughnut. But you know what? We got past that moment together. Moe ate that doughnut.

And it was good.

3 comments:

  1. That looks like Princess triplet when we get stuck at red lights. She can hold it in for a little bit, but in the van & not moving (or as I've heard, on the bus and not moving) can cause distress like this for her. It wasn't always this way. I can trace it back to when we had to wait in the van for a really long time in order to pick up her teen sister from school. Ever since that day, she has hated any time of being buckled into a car seat but not moving. I'm hoping we'll get through this phase and she'll get back to a place where red lights aren't so horrible.

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  2. My son has awful moments of losing his shit. It is heart breaking for me. And there are times when I too lose my shit. It's not good. Some days I'm full of hope and positivity and I love hearing/reading about all the great ways that other autistic people have turned out I all the amazing things they have accomplished .... but then there are moments when I just can't see the up-side to any of this and all I want is for my son to not have these issues. If that means he would also not be autistic anymore then I'm ok with that. I know that's a controversial thing to say these days and I don't mean to insult any autistic person reading this but the tantrums and the VERY limited communication and all the rest of it, is hard on me and it's hard on my son and it's hard on my husband and on my other son. It's just hard.

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  3. Experienced that & worse for seemingly innocuous situations. Sunday night, my husband made pizza & my son ate it very happily, having asked for it all day - we keep pre-made pizza crust companies in business. We purposely saved a few slices for the kid, as we always do. Monday & Tuesday night, I offered him a slice, only to have him instantly scream "no pizza! no pizza!" scream wordlessly, throw stuff, curl up into a ball & bang his head (fortunately, into a couch cushion). The same pizza that Wednesday (tonight), he ate happily again without incident. I don't get it. I wish I did.

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