Monday, December 28, 2015

Finding Neurodiversity in Fiction: The Innocents by Margery Sharp

Content Warning: use of R word

The Innocents, published in 1972, has been one of my favorite books since I was a teenager. The narrator is an elderly woman in a small English village who, because of World War II, sort of accidentally adopts a young girl named Antoinette who is intellectually handicapped. She becomes very fond of Antoinette and finds herself going to extreme measures to protect her.

It is absolutely fascinating to me to examine this book as the person I am now. My first thought was that it holds up surprisingly well to a modern reading because it's very unsentimental about disability. Antoinette is not "inspiring" or sweet or attractive; she loves dead things and poop and has a tendency to throw up when stressed. Her foster mother (I don't think she's ever named, which is interesting) nonetheless loves her just as she is. The more I think about it, the more I realize the book is actually a fabulous blueprint for loving and accepting a neurodiverse person.

Antoniette's foster mother fulfills her needs for quiet and routine, while gently encouraging her to develop without pushing or forcing. She lets her enjoy her solitary pursuits, puts up with Antoinette's love for keeping dead frogs in her pockets (only making sure to wash her hands well before meals), and even plays tiddlywinks with Antoinette's preferred pieces:

"Tiddlywinks, played with rabbit-droppings instead of ivorine counters, is naturally a slow game, in fact not the same game at all, but suited Antoinette all the better, who needed in everything to go slowly."

She finds a way to introduce Antoniette to the company of other children in a non-intimidating way, though horseback riding (something now often used as a therapy for disabled children), and encourages her to speak by reading her interesting sounding words. A perfect example of how she modifies the traditional upbringing of children is that she always recites a bedtime prayer to Antoinette, and is thrilled when the little girl starts chiming in at the "amen" with "vermin," one of her favorite words and a term of affection.

Antoinette, who is almost completely nonverbal, is specifically diagnosed as "simply retarded, not autistic." Having read Neurotribes, (which everyone needs to read!) I understand now how meaningless that diagnosis was, because the definition of autism at the time was extremely limited. If Antoinette were diagnosed today, I think the outcome might be quite different.

Either way, I think Sharp was outlining a wonderful example of how to parent a neurodiverse person with love and acceptance. And to make it more fascinating and still relevant, the danger that Antoinette is faced with, from her returned biological mother, is that of living with someone who refuses to accept her needs and will attempt to force her to conform to societal convention. Without spoilers, this is a danger taken very seriously by the book, the narrator, and by Antoinette herself -- who may not be verbal, but who clearly does have feelings, thoughts, and agency. The story's ending is morally ambiguous but an absolute validation of Antoinette's rights as a human being.

Wednesday, December 9, 2015

Put On Your Yamulke...

I grew up with the knowledge that I was Jewish, a fondness of Israeli dances, and a small vocabulary of Yiddish exclamations and curses. That was pretty much it. Although I've tried at various times to add more Judaism into my life, it never really took. My husband took "how to Jew" classes with me when we were newly married, and he's the one who remembers stuff, so he's the one who cooks the latkes and explained the concept of Tzedakah to our son this year.

When our son was in a Jewish preschool, it was much easier to remember and celebrate the holidays. But he's in high school now and we've gotten pretty lax.

The one thing we always do is the very minor holiday Hanukkah, and it's not to compete with Christmas, which my husband utterly adores. I think it's partially because it's easy, and partially because it's pretty -- lighting candles and singing blessings, what could be nicer? -- but also because as I get older, Christmastime is the time of year when, paradoxically, I feel the most Jewish. I'm always grateful when they fall sufficiently far enough away from each other that the Menorah lights aren't overshadowed by Christmas tree lights.

Thursday, November 5, 2015

A Family Guilt-Off

The other day, my son and I were working out together, and he asked me a question about whether I would change anything about how I've been a parent.

As it happened, I was totally primed for that question. While seeing him off to school that morning, I had noticed someone riding a bike with a kid's bike attachment behind it. And it reminded me that I had always wanted to get one of those for him, but it hadn't happened. And I realized... I don't care. It didn't matter. And I felt really good about how much I'd let go of expectations and wishes and accepted how things are and that the past is past.

So I told him that and we had a really good conversation.

But the thing is... he kept asking the question of me and his father. At first I thought it was because it was such a good conversation starter before, but it started to have undertones. Undertones of "if you and dad had done this, maybe I wouldn't be so messed up and unhappy now." Then the undertones became actual overtones. And I started to get really mad. And insist that no, we couldn't have done things any differently than we did.

Today, I was chatting with some people on twitter about early days of parenthood, and someone said this: "The first few years I think guilt was my default emotion."

And I realized, this is why I've been so upset about my son's questioning. Because I lived with guilt for so many years, about what I did or didn't do to completely fuck my child up, and I had finally worked through a lot of it with my therapist. And now it was all coming back to me.

I went and told this amazing insight to my husband and he said, essentially, "Yeah, I know, and that's how I explained it to Son."

Wednesday, October 14, 2015

Overheard at the Gym

gym employee: "Hi, how are you?"

gym patron, through gritted teeth: "I'm here."

A woman after my own heart!

Saturday, October 10, 2015

The Trouble With Empathy

Over at Queer Romance Month I saw this video about empathy:

It's thoughtful and funny, well worth a watch. But for me, it kind of scratches the surface of what empathy actually is: it's more about offering an empathic response. You see it a tiny bit -- the bear gets a cloud over her head -- but you don't really see the bear taking on the fox's feelings with her.

I've always had problems with empathy, and I still do. When my son tells me about something wrong, my instinct is often to distance, to argue, to try to convince him that no, it's not really wrong, or we can easily fix it. And why?

Because empathy HURTS. It's not just saying the right things instead of the wrong ones. It's really feeling. And taking on the depths of my son's pain is agonizing.

I see this in my son too. When he sees me in pain, he's in pain for me. Anything that goes a little wrong for me hurts him. It's a hard way to live. Luckily I'm a grown up and can usually brings things down: "It's okay, it's just a little scratch, happens all the time." But that doesn't work when it's his pain.

Friday, August 14, 2015


My mom always speaks admiringly of how well my son expresses his feelings.  I always had tremendous difficulty talking about what was going on with me; she's told me that once during a very bad time she broke her own strict rules about privacy to read my diary but it was no help at all. I didn't even write about my feelings. Possibly I didn't even understand them myself.

Son has always been encouraged to understand and express himself, with additional expert guidance since he was 3. Today I noticed an unexpected benefit of this: when you have words to understand your own feelings, it's much easier for someone else to explain their feelings to you.  Telling him "please be quiet because your dad is stressed" brought out frustration and stomping. Reminding him that noise is one of the worst things when he's feeling stressed brought peace and a loving apology.

He absolutely has empathy, no question of it. As with so many issues regarding disabilities, it's just a matter of the right access.

Friday, July 10, 2015

Innocence Lost

Yesterday, while I was in the middle of a medication change and a stress attack and a million different tasks, son asked for a hug. Instead of asking him to wait or get his weighted blanket or saying I just couldn't hug right then, I gave him a mean hug. It hurt him.

He was so shocked. It's not that I've never lost my temper with him before,,, we clash and hurt each other fairly often, as people who have similar issues often do. Usually if I get mad he just gets mad right back. But I really went beyond the pale there.

He forgave me immediately, but I don't think either of us is over it. I woke up crying. Because I ruined the purity of The Hug.

Wednesday, July 8, 2015

Upside Down and Inside Out

My family saw "Inside Out" the other week, and it really struck a chord in all three of us. ("Lava" I pretty much loathed -- for God's sake, if you're going to tell a story in song, get a decent songwriter!) Son was intrigued by the idea of all the different emotions working in the control center and we had some great conversations about how seemingly negative emotions can actually be helpful, unless they become monsters -- like fear becoming an anxiety monster, for example. Hub saw a metaphor for depression in Riley getting cut off from both joy and sadness.

What most spoke to me was the islands that form personality, and their destruction. This is pretty much how my life has been for the last 10 years. I spent a lot of time building up some wonderful islands -- "salsa dancing island," which also really built up my neglected "friendship island"; "cooking healthy foods island"; various social networks. And then they all started crashing down on me, leaving me with less and less.

My big question about the movie was, which came first. Did Joy and Sadness and the rest make things happen that affected Riley, as depicted? Or did their adventures follow Riley's feelings? It makes sense for me to wonder that, because for years now, doctors have been telling me that my exhaustion is caused by depression, while I've believed that I have an underlying undiagnosed health issue causing the exhaustion, which brought down all my islands, which caused the depression.

Either way, it helps to have a metaphor.

Monday, June 22, 2015

Sing Low, Sweet Chariot

I'm taking a class on singing and dancing Broadway style. Yesterday I did a solo part in my belt voice and today tried one in my high voice. I was really struck by the difference I felt. Being in my high voice makes me feel shy and diffident. Belting fills me with confidence.

I felt terrible about how badly I did today, but the teacher asked if I can belt it, so I have another chance tomorrow. Hoping I will score a solo for our performance.

I think I've read that speaking in a high voice makes a person seem younger and less assured, but I hadn't realized it feels that way to the speaker, too.

Thursday, April 9, 2015

Clash of the Sensory Needs

While reading autism-related blogs/boards, I've come across a particular fantasy several times: AutismLand, a community where autistic people can just be themselves and not have to try to fit in, and everyone around will understand and not judge.

It's a lovely idea, but it has several major flaws. One is that autistic people, and those who love them, aren't automatically free of judgement of others. One is that not all autistic people have the same needs. And one is that even people with similar needs can clash horribly.

My house is a freakin' sensory nightmare of noise and smells and mess and chaos lately. I'm very lucky to have my own space... but it's not soundproofed. And I can't hide there all the time.

Wednesday, March 25, 2015

I have a Doppledeaner! Or a Deanleganger!

This post... it's me. Almost every bit of it. I'm going to steal her phrase for a tagline. (and by steal I mean, ask for permission to use.)

Monday, March 2, 2015

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.

Saturday, February 28, 2015

Just As It Should Be

A little over a year ago, I started blogging about autism by writing about my son's uncomfortable reaction to an Autism Speaks fundraiser at Toys R Us.

Today, my son is working on a youtube video about how autistic people are treated in the media.

He's speaking for himself now.