March 2015

A story

Her body parts were fighting.

They had forgotten how to work together, and they were all complaining. All trying to get the most pity. All trying to make it clear that they were the root of all of the problems.

They couldn’t even remember how they started fighting. It just happened sometimes. The harmonious friendship they had would start to unravel, bit by bit, until rather than working as a team, they were all enemies. Pulling, fighting, arguing.

Blood wasn’t flowing at the same rate that Heart wanted to pump. Head pounded at an entirely separate pace. Right Eye hurt. Neck formed a rock of tension. Lungs wanted to breathe at its own pace, and not communicate with Heart or Mouth.

And so, Brain was exhausted, and Core was exhausted. Listen to each other, they pleaded. Work together, they encouraged. You are a system, they reminded.

But the parts would not listen. And now they had all become so stubborn, that even if they wanted to unite once again, they didn’t even remember how.

Brain and Core had one last idea. Let’s go to yoga, they wearily suggested. Well, the parts started to argue. But Brain and Core mustered all of their energy and put their foot down. We are going. Get into the car, they said, the way you’d talk to a small child throwing a tantrum.

And so, they went to yoga. And despite their determination to work on their own and not be team players, Heart and Lungs began to talk. And as she moved from pose to pose, flowing her body through sequences, Legs had to talk to Arms, who had to talk to Hands and Wrist. Because if they didn’t, she might fall, or get hurt. And while they didn’t have much respect for each other at the moment, they did respect and love her. And Heart and Lungs began to coordinate their breath with Legs and Arms. And Neck relaxed as Lungs exhaled. And they all noticed that she looked calmer than she had in days, and that made them feel good.

By the end of class, everyone had put aside their stubborness, animosity, and negativity. They had decided to move on and forgive each other. After all, they couldn’t even remember what they were fighting about. They couldn’t even remember why they decided to go their own ways. They felt so much better working as a team, flowing as one unit. And more importantly, she was happy. Brain and Core relaxed for the first time in days.

And they all walked out of the studio, together, as one.

Google Glass: Brain Power for autism

My dad sent me this article, knowing I would have thoughts. The article is called, “Can an app for Google Glass offer a path out of autism?”

I become suspicious, immediately, of anything promising to “cure” or “fix” or “save kids from” autism. So, my defenses were immediately engaged.

I have read a little bit about Google Glass over the last year or so, but am certainly no expert on the technology, nor do I claim to be. But, the idea, at least as I understood it, is this app (called “Brain Power”) would be used to encourage autistic children to make eye contact. The app flashes cartoon characters on the screen where another individual’s face is (e.g., a parent), to “lure” their eyes up to the individual’s eyes. Essentially, tricking them into making eye contact. Once they look up, they receive points, and the character is taken away.

First of all – I am a huge fan of technology. Almost every single one of my students use it for learning in some form, and I believe its implications are limitless. So my issue with Brain Power is not the fact that it’s technology. In fact, I believe that Google Glass in general could absolutely be added to the arsenal of tools that benefit our autistic kids.

Several things bother me. For starters, I have said many times, and it is no secret that I believe, that autism is not a “condition”, is not a “problem”, is not an “epidemic.” And I have a lot of reservations for a company who operates with this fundamental belief, as Brain Power seems to. Autism comes with its challenges, but so does neurotypicalism.

The next issue is what Brain Power is aiming to do. Is it REALLY aiming to improve social communication, and social thinking skills? Or is yet another behavioral approach, aimed at reducing certain behaviors? Because I am thinking the latter. I believe in Social Thinking, in teaching social communication, at breaking down the fundamentals to help our kids understand social interaction. I teach it every day of the year, and I’m all for it. But teaching kids how to interact, why to interact, is not the same as a strict behavioral approach. We are not requiring our kids to do something without helping them understand why.

Another app digitally accentuates the person’s eyes to attract attention, because autistic children are known to focus on the speaker’s mouth.

Well, I can’t tell you how many autistic kids and adults have expressed that they can’t make eye contact, because it’s too damn painful. We actually teach kids to look at a mouth, or a nose, or an ear – we teach them to fake it, that no, we aren’t going to force them into making direct eye contact, but by looking in the general direction of someone’s face, they are still showing that they’re listening, paying attention, showing interest. Yes, there are kids who truly don’t understand the concept of why they would need to look at someone’s face to begin with. So we start there. But it’s not looked at as a problem to be fixed. Of all of the zillions of challenges that come with autism, I have never, nor do I know anyone who has ever, thought, “Oh! You know what? A really important thing that we need to fix is make all of our kids make eye contact.” Because it’s just not crucial. Communicating wants and needs is. Coping strategies for anxiety is. Making the world functional and accessible is.

And I wonder, why is Brain Power so intent on increasing eye contact? Is it truly because they think it’s better for the autistic kids themselves, for the kids’ quality of life, or is it to try and fit our kids into a mold of “normal” that in reality doesn’t exist? Do their beliefs come from the same people who believe that we should eliminate scripting and stimming? Who are they really looking to benefit here?

The article concludes with:

Attending were Sara Gaynor, a special-education teacher, and her 11-year-old son, Sean. After trying out Glass, Gaynor said her son told her: “They’re awesome. I think those glasses make me smarter.”

Later, Gaynor recounted how Sean jumped up, arms outreached, and told her, “I think I am breaking out of an autism prison!”

I don’t know Sara Gaynor. I don’t know her son. I do believe that he liked the glasses. Like I said, I think a lot of kids would. I think the glasses hold great potential. But the way in which this quote was written into the article makes it sound like glasses = smarter, because autism = dumb. And Sean’s quote at the end? I don’t know how much I believe that this boy truly said those words. But if he did, it breaks my heart. Because it means he was raised believing his autism is a prison. And what implications for any autistic kid reading that article – to plant the thought in their own heads that their neurology, their wiring, is something so terrible that it should be compared to a prison.

I need to do more research, I need to read more about the company and their studies and their beliefs. Again, I do not claim to be an expert on this, to understand all of it, to fully know every detail about how the app would work. But at first glance, I am more than a little concerned.

Month-old journaling bits, day-old responses

I want to write, so badly, that I can’t. This is not a new feeling. I keep opening word documents, blank blog posts. I know I just need momentum. I know once I get going, I’ll go. But that blank page – it puts pressure on me, to write something extraordinary. And the more pressure, and the more want, the less I can do it. I go back and forth between “I have so much to say” and “I have nothing to say”. I have thoughts, snippits, of ideas of topics – but when I allow them to settle into my fingers, I get all blocked up. Every idea and thought I have sounds stupid.

Just write, just let the words pour out of your fingers. There is no expectation, there is no requirement. You write for you, and therefore, whatever you say is just fine.

Sometimes I wish I wrote fiction.

You could. You could write fiction. Just like you could write poetry. There are no standards, just the ones you fear exist.

I wanted to write about the “too much” vs. “not enough” thing. I don’t really know how to explain it, though, only just feel it. With someone people I worry I’m too much. Too needy, too anxious, too dependent, too self-centered. With others, I worry I’m not enough. Not caring enough, I don’t check in enough, not funny enough, not supportive enough. I’m not good enough in general. And all of that results in a lot of spinny thoughts, ruminations, anxieties. I wonder what it would be like to just…be. I wonder why I automatically jump to the conclusions and fears of being simultaneously too much and not enough – and I wonder, does anyone else do that? Is it yet another “Jen thing” or can anyone else relate? What is it like to just be and do without a constant analysis of real and perceived events and outcomes?

Remember that you certainly do not always feel this way. It’s been a theme in your life, but it is not a constant of a day to day. Remember how many interactions and moments you have now that you don’t analyze or question, and you felt this way in this moment when you wrote this, but you don’t feel this way all of the time. You are very good at just being. You’ve come so far. Remember that your analytical, anxious, obsessive brain will always have a tendency toward this, but it no longer consumes you. Remember that presence of thoughts matters far less than reactions to those thoughts.

Half an inch

And as the seamstress asked, “Do you want me to take it out half an inch, and not pin it so tightly?” I smiled, and said, “Yes.”

Let me back up.

I was at the seamstress for my second wedding dress fitting. She had tentatively pinned several parts of the dress that needed to be taken in, and I was trying it on to confirm before she cut into the fabric. (Let me just say that no matter what size you are, no matter what shape, no matter what your history with your body, it’s never a super comfortable feeling for someone to pull fabric tight around every crevice of your body). She zipped the dress and I immediately felt like I needed to suck in.

“Remember, you want to be able to sit down, you want to be comfortable,” my mom said, as she caught my eye, watching me note that it was a little tight in one part of my back. And I needed that reminder of her saying that, because all along, that was my criteria with my wedding dress. I wanted to feel beautiful in it. And I wanted to be able to breathe. I did not want to spend my wedding day focusing on sucking in my stomach or breathing with shallow breaths because a full, deep, wonderful breath was restricted by my dress. I didn’t want my dress to restrict anything. Of all days, I do not want any restrictions on my wedding day.

I thought about it. I focused on my body. I noticed that I could only take shallow breaths, with the dress pinned that tightly. I noticed that I wanted to suck in my stomach. My initial reaction, which I think will always be my initial reaction, was to think, Okay. I can do this. Challenge accepted. I’ll cut out a few calories. Go to the gym more. Lose a half inch in the circumference of my back. Then it will fit perfectly. Perfect. This is perfect. 

And I did at first, say to the seamstress and my mom, “No, I think it will be okay.” But my voice trailed off. And my mom knows me better than that. So as she said, “Are you sure?” I thought.

The difference between Then and Now, is my reactions to those thoughts. I used to panic when I noticed the thought. I thought that meant I had failed, that I would always been trapped by the thoughts. It took a lot of time, and work, to realize that the thoughts are going to come. They just are. Maybe they don’t come for everyone, but everyone’s story is different, everyone’s reasons and causes are different, everyone’s wiring is different. And for me, the thoughts will come from time to time. But that actually doesn’t matter. Because what matters is my reaction to the thoughts, not the thoughts themselves. If I act on them or not. If I let them become actions and reality.

So I took a shallow breath, because that’s all I could do with my diaphragm compressed that tightly. And as the seamstress asked, “Do you want me to take it out half an inch, and not pin it so tightly?” I smiled, and said, “Yes.”

It’s a half an inch. Barely noticeable. Makes no difference. And back Then, a half inch would have been everything. But Now, that half inch is nothing. Comfort is everything. Feeling beautiful is everything. Breathing is everything. And if it takes a half inch for that, it’s okay by me.

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