Hard Times

The other night, in a moment of rage, my kid yelled that her father and I had failed her as parents for her entire life.

Extenuating circumstances: she had been missing one of her meds. And of course, the world. And she hasn't lived long enough to know that that it's really, really destructive to hit someone you love in their most tender spot during a fight. Maybe she doesn't even know what a tender spot it is. I managed not to make the obvious, unforgivable retort, because I do know.

But I'm having a lot of trouble forgiving her. I'm angry because I feel like we've done nothing but give of ourselves for her her entire life, no matter what it cost us. And maybe also because, in some part of me, I believe she was right.

Deep Thoughts on Safety Pins

Today I saw my therapist for the first time since the election. I didn't really feel much like talking, so we did bodywork designed to help me feel supported and contained.

At one point I got hysterical thinking about my son, and how he's regarded by the people now in power here. And my therapist helped me through with a loving-kindness meditation, emphasizing the safety of my space and connecting it to a matrix of the many other people who are frightened right now, and how we need to help each other feel safe.

Wow, this shit is hard to describe. Anyway, I felt like I'd been giving a missing piece. (I first mis-typed 'peace', a truly subconscious typo.) I'm doing as much activism as I can. My family is giving money, making phone calls, joining action groups. But support for the emotional aspects of living in this time is important too.

And I remembered the poor "safe space" safety pin. I wore one for two days, before it was inevitably ruined and perverted by sabotage from the right and disgusting expensive jewelry versions. And... by anger from people I consider friends online.

And I don't want to blame or shame anyone for their anger. But I can't help feeling that anyone who said "the safety pin does nothing, it's only actions that matter" missed the point. Of course actions matter. They're vital, especially now. But feelings also matter. The safety pin was a way for me to express, "I'm frightened. I'm sad. If you're frightened and sad too, we're together in this. Let's help each other."

It really hurt me that people were so angry at me for making an effort to have that in my life. And I closed off. So I''m glad to be reminded that it's important to connect. It's important to feel for each other.

How Empathy Works for Me

Yesterday I read this in the Washington Post: https://www.washingtonpost.com/news/early-lead/wp/2016/10/31/a-black-autistic-teen-got-lost-running-a-5k-then-assaulted-by-a-man-who-feared-getting-mugged/

(Warning for the usual sort of non-thinking, inherently-ableist reporting.)

To summarize the story, Chase, a black, mostly non-verbal autistic teen, was assaulted by a much larger white man while running a marathon with his team. His family is having difficulty getting justice for him.

Sadly, this is a fairly common sort of story in America. And I felt the usual feelings about it. Outrage and disgust at the obvious racism that provoked the attack. Outrage and disgust that justice wasn't being served. A cynical relief that at least the poor boy wasn't shot, as so many black and/or disabled people have been.

And then I got to the rest of the story.

Chase has refused to run since this happened. It was formerly his favorite thing. It brought him joy, and a place in a community.

That's when I started to cry. Because I know this. I know what it's like to have nasty people ruin something you love. Sometimes it feels like that's my whole life now. Just one big reaction to trauma.

So I cried more for Chase than I have for people who've actually been killed. Because I know what he's going through.

I was remembering something that happened after 9/11. I was 8 months pregnant when it happened, and I posted somewhere online about how upset I was for the women who were near term or in labor in New York -- how terrifying it must be in the midst of all the chaos and loss of essential services and such. And I got a response so sarcastic I could barely parse it, but I think the message was it was disgusting that I was thinking about that instead of the loss of lives.

Well, the two aren't mutually exclusive. Of course I was horrified and saddened for the people who died, and the people who lost loved ones. (We didn't know for awhile about the people sickened by the smoke inhalation.) I felt a great deal of sympathy for them. But my most immediate empathy went to the people who were experiencing something like I was experiencing.

Similarly, when Katrina happened while I was the mother of a young child, my thoughts were largely with other mothers. I gave money for diapers for the refugees, as well as for drinking water.

Is this weird? Or bad? Or is it unreasonable of people to expect true empathy for everyone in every situation? How much can anyone stand to empathize when there's so much suffering in the world?

The Worst of Both Worlds

I got in someone's way today.  Or something. I was on my way to a seat in voice class when someone said "Excuse me," in an aggrieved tone.

This seems to encapsulate my entire life. I am always in someone's way, always offending in some manner that I don't understand. I get yelled at. I get honked at. I get nasty notes left on my car.

And they never forgive. Today I said "oh, sorry" and she didn't even respond. It's very weird to me because I'll forgive just about anything. But NT people seem to hold onto anger forever, no matter how much you apologize. They decide you shouldn't have been behaving like that and that's it.

I can read voices and body language, at least to some degree. But I'm starting to think it's not worth it.

In Which I Mix Metaphors

I had a huge public meltdown the other day and am still shocked and embarrassed and all that good stuff. I saw my therapist today, and she put a weighted blanket on me and talked about my struggling nervous system and expressed sympathy for me having to go through that.

It made me feel so bad for every time I've been impatient or angry with my son. How often does he get unconditional support? Well, more often than some, I'm sure, because we really do try... but not often enough. He should never be made to feel bad about something his neurology/nervous system is doing to him.

And I realize now, that makes it so much worse. Part of what made me melt down was that there were suddenly landmines everywhere in a place that should have been safe... and none of the other people there, my friends and family, realized it. It's like being squeezed by a monster, and only able to squeak out a tiny call for help that no one understands, and when the monster realizes how helpless I am, he squeezes even harder.

Functioning and Quality of Life

As a follow-up to my last post, this very interesting post goes into some more of the issues with assessing autistic people as high or low functioning:

For autism research, measures of success and function might better be tied to what is, after all, considered to be a core deficit of autism: social communication challenges and impairments. For people like my son, the answer to the question, “Is he high functioning?” isn’t the one the doctor probably has in mind. Yes, my son has good cognitive skills. But his ability to respond to cultural and social demands and expectations is what defines his functioning — and his autism. The doctor should really ask my son, “How satisfied are you with your quality of life?”

 We had a prime example of this recently.  My son is doing very well in piano class. His class was performing at an evening concert, and I was so happy that this was something he could participate in, with all the other kids.

We dressed up nicely, even getting him into a button-down shirt, and arrived at the scheduled time, only to discover that the concert was in progress and children were already at the keyboards and there was no empty spot. My son, being faceblind, couldn't tell if it was his class or a different class. He stood there desperately flapping, trying to get the attention of the teacher, but it was dark and noisy. By the time we established that it was his class, it was all over. And he wondered if he'd been deliberately left out because people thought he'd ruin the concert.  When you feel freakish a lot of the time, your mind tends to go to places like that.

It turned out that there were specific verbal instructions which my son missed, because he wears headphones in class. Or possibly because he spaced out or got distracted. Why his freakin' AIDE didn't make sure he got the info... in any event, the school let him down. And my son was left not feeling good about the fact that he can play piano well, but lousy about the fact that once again, everyone else knew something he didn't.