Autism: ISM-ing and joining

For those of you who don't know, one of my very favorite things to do in the world is to spend time playing with very amazingly beautiful children who are on the autism spectrum. Over the last 2 and a half years I've had the privilege of spending hundreds and hundreds of hours playing one on one with a number of these delightful little ones--children whose parents have chosen to use the SONRISE program to try to help their little ones learn to connect with themselves and other people.

My very favourite thing about the SONRISE program is it's unique perspective on the exclusive repetitious behaviors in which many children on the autism spectrum engage. In the wider autism community, these behaviours are often referred to as "stims", and inside the SONRISE community, we like to refer to them as "isms". My belief is that everyone, including neurotypical people, have isms--behaviors which we like to do more or less alone, that we do over and over again, because for whatever reason we find them comforting, or relaxing, or centering, or what have you. Like nail biting. Or zoning out on the internet (teehee).

The perspective that the SONRISE program takes on isms is very different from the perspective that many autism professionals as well as many families of those with autism take. We engage in something called joining. It means that when the child with autism is isming, we do the activity with them. We don't just mimic, however. We really get into it with them--whatever they are doing, we really try to understand it, and really do it with them, exactly as they are doing it, with the same real delight and enthusiasm and concentration with which they are doing the activity. It's our way of saying "We love you, and we think you ROCK, and we think whatever you do ROCKS, and in fact we feel that way so strongly that we want to do it with you.". It's also my belief and observation that when I really join a child with autism in their exclusive repetitious behaviour, I can in a sense almost make that behaviour more effective for them--so that whatever they are trying to get from that behaviour, for themselves, they actually somehow get more of it, faster. The end result is that they do the behaviour less. Many SONRISE mums and dads will bear witness to this--that when they started joining their children, their children's amount of isming went down. Of course there are no guarantees, but this makes a lot of sense to me. I'm much more willing and able to engage socially with others when my sensation is that they totally accept me and are totally stokishly happy to do whatever I want to do.

Anyway, today I was playing with a beautiful little boy on the spectrum, and he was doing this awesome ism for about 15 minutes, and I so enjoyed joining him that I wanted to share with you my experience:

N was standing on one side of the little wooden table, holding a shirt. He stayed standing, but he gently shifted position occasionally, as if to find the optimal position for what he wanted to do. So he'd move back from the table a little, and then move toward it a little. He'd move a bit to the right, and then a bit to the left. All the time during this he was deeply engaged in two things. Firstly he was deeply engaged in the tabletop. He was studying it like perhaps a master antique wooden table expert might study it, or perhaps a master lifelong carpenter who only ever built tables. Secondly, he was deeply engaged in the shirt he was holding, studying its texture, its edges, its shape and color and just deeply fascinated by it. It was as if he was looking for the perfect way and place to hold it in order to use it to engage with the table JUST SO. Then he would swing it in these perfect little circular swings against the table. Also during the entire time, he was vocalizing these beautiful vocalisms--kind of a fascinating vowel somewhere between "eee" and "aaaa". These vocalizations would go up and down in pitch and in loudness.

So I joined him in all these wondrous delightful things. I got a pink sari to use as he was using a shirt, and I got on my knees so I was about the same height as him from the table, and I became deeply absorbed by the patterns of the wood grain on the table top, and by the strange sweet music N and I were making, and by the shape and feel and colour and texture of my sari, and by how the shadows on the tabletop changed as I shifted, back and forth, left and right. Obviously I don't totally understand exactly what N is getting for himself from this exclusive activity, but I can say this--it feels deeply centering. I always feel somehow like I'm the lucky one, when N chooses to ISM while I'm the room with him--like he's sharing this profoundly beautiful experience he creates with me.

A dialogue

I'm choosing to feel really angry.

How come?

Cause this person asked me a question that appeared to be sincere, and as soon as I answered it they attacked my answer and me personally.

And given that they asked you a question and then attacked you and your answer--how come you feel angry?

Cause it felt like a setup--like ... I felt excited that they were engaging me as a human being, that they wanted to know about my beliefs and experiences, and then when I shared myself, they said my answer was clearly wrong, and accused me of unkindness toward my wife.

So which part do you want to talk about--the statement that your answer was wrong, or the accusation of unkindness toward your wife?

Both, really--it was more the whole setup. I feel like I fell for it--like I should have ... been aware that this person wasn't a safe person, and thus I shouldn't have shared myself. I feel like I set myself up for being vulnerable to being attacked.

Given that you knew that this person wasn't a safe person, why did you make yourself vulnerable like that, Benjamin?

I feel like I was sucked in by the question. I had shared something about myself, and the question they asked about it was just so inviting--as if they really wanted to understand me.

Okay--so given that you saw the question and felt really invited to share, and then this person attacked you after you shared--how come you feel angry?

It doesn't feel so much like anger anymore--it feels more like a feeling of not being safe.

What do you mean by not being safe?

I mean ... it feels like there are just these people out there who are going to ask questions that look really inviting and curious and non-judgmental, and then when you stupidly go for the invitation, they attack you. It feels like this nasty setup like a clever fisherman making a really alluring lure, I feel angry that this person would treat me like that--pretend with the pretty lure and then take out a knife and gut and scale me.

So how come you're seeing this person's response that they believe you're wrong, and that they believe you're unkind to your wife--how come that bugs you so much?

It's 'cause I grew up in this system (haha--that's funny 'cause 3 weeks ago I decided to stop believing in systems). Anyway I was gonna say that I grew up in a system where I was treated like this a lot--there was this superficial niceness, but it was contingent on agreeing with the consensus belief framework. So ... I felt like I had to really fight to get out of that system(haha--there's that word again)/community, and now somehow that makes me vulnerable to this sort of thing.

What do you mean by "vulnerable"?

I mean that I feel like I'm a bit of a sucker for this sort of thing.

What do you mean by "sucker"?

I mean that I set myself up for the fall on these things. It happened last week too with another unsafe person. I open up a little bit and be authentic with people who are pretty clearly unsafe--the sort of people who just attack other people's beliefs and opinions willy nilly, and they inevitably respond by attacking me.

Why do you do that, Benjamin?

I don't know.

Take a guess.

I do it because I'm hoping/longing for genuine connection. I want to give people the benefit of the doubt. ... I want to change them. WOW. there's a huge insight. Yep. I feel like somehow giving these people an opportunity to interact with me--a person who is self aware and safe, will help them come to understand what fucks they are, and thus enable them to become less of a fuck and more of a self aware safe person like me.

Why do you choose to feel unsafe around certain people?

It's the element of nasty surprise. Oh my God. I totally do that to my kids--that nasty surprise thing. Like everything will be going along hunky-dory, and then I'll see that they've caused some shocking mess somewhere, and I'll use anger to motivate myself and to get them to do what I want.

Why do you believe that this person saying they believe you're wrong and accusing you of unkindness toward your wife is nasty?

Because it's not what I expected. I wanted them to respond by either saying that my answer made sense to them, or else saying that it didn't make sense to them, but then follow that with another question. Or at the very least to respond by talking about their own experience. I massively dislike it when people talk about my experience in a judgmental way. Why can't they just shut their face?

Why did you dislike it and feel angry when this person talked about your experience in a judgmental way?

Because ... I think I disliked my own sort of instant response--it felt very sympathetic nervous system. You know that fellow who is the cello teacher in Boston, he talks about how his students when they make a mistake they have this judgement about it, and they can then freeze up and get all tight--like a rat gets when it's scared--that frozen, curl in on yourself thing. He makes his students who do that put down their cello and stand up and throw their arms out in the air and shout with exuberance "HOW FASCINATING!". He makes them do it every time, 'til it's habit. Wait a moment. What if I chose to have that response instead today to this person attacking me. I'm gonna try it--one second.

Wow that felt really good. I'm gonna imagine that I just had that experience where this person attacked me, and I'm gonna do that response immediately. Hold on.

OK. Hot damn that feels so good and so much better than my original response. In future, whenever someone verbally attacks me, I'm gonna do that right then and there. WOOOOOOOOOOOOOOT!

Do you feel finished with that?

Yep! Thank you! =)

Mostly on facebook now

Just a note. I'm mostly posting on facebook now. I might write here again more often eventually, but I see it's been a month and a half. You're welcome to friend/follow me at facebook.com/oxymoron

Notes on the death of my grandfather

A gentle warning--this post touches on physical and sexual abuse. Please be gently forewarned if you suffer from PTSD around these issues.

I learned today that my grandfather David "Buddy" Eaton died on July 1st, 2011, one week ago. He is survived by four of his six children and seven grandchildren and a bunch of great grandchildren.

This is my story about my granddad.

I'm pretty sure I met my granddad three times during my lifetime--Once when I was very young, my family visited Boston--I remember being at his house, and seeing him with two of his beautiful fascinating colorful parrots, who were riding on his left and right shoulders. I remember he seemed to have a funny egg shaped bump on his forehead, and a funny egg shaped concavity next to it, and thinking they balanced each other out somehow. I remember him talking to me a little bit about birds, and learning that he was president of the local birding society. I remember his house, in which my mother grew up, seeming very large, with multiple floors going up and a basement going down. That would have been in Saugus, Massachusetts, a suburb of Boston. All this must have been around about 1980.

I didn't see him again until 'round about 2004. But first, I should tell you that I learned in ~2001 that my grandfather was a pedophile. He raped my mother many times during the years of her adolescence. He was also psychologically, verbally, and physically abusive toward all his 5 children. He used to hit the children in the face with a fork at dinnertime if they did something wrong. Apparently both my mum and all her siblings left home and got as far away as possible pretty much the moment they turned 18--all joining the U.S. military, I believe. In the intervening years, they all settled in the general vicinity of Seattle, Washington, pretty much as far away as you can get from Saugus, Massachusetts and still be in the contiguous U.S. At some point my lovely amazing grandmother learned some of the details of what her husband had done to her children and she divorced him and moved to the Seattle area as well.

Back to 2004. In 2004 the extended family heard from an old neighbor/friend that Buddy was very sick, was refusing medical treatment, and was probably going to more or less die in his own shit in his home in the near future if nothing was done. At this point, having been taught a rather toxic brand of forgiveness by the Christian church with which they were involved, my mum and dad flew to Saugus, helped my granddad, apparently more or less against his will, sorted his affairs, sold his house, and brought him back to live in their own home in the Seattle area.

Here's to inviting toxic monsters into your home in the name of God.

Having lived in the same home with her childhood nightmare for a year, in 2005 my mother was diagnosed with ovarian cancer. She died of it in June 2008. By the way, you can read my eulogy for my mum here. She was an amazing person.

Anyway, in 2004 when my grandfather was living in my parents' home, I went to meet him. I just wanted to tell him thank you for the $120 he had given to help start a college fund for me back when I was a very young child. I did tell him that, and he didn't seem to totally understand what I was saying, but we did have a little connection--he looked at me and verbally responded in some way. My dad overheard that conversation and explained to me afterwards that it was actually my godfather, a different man altogether, who had given that $120. Ah well.

After my mum was diagnosed with ovarian cancer in 2005, the decision was made to place my grand dad in an assisted living facility in Monroe, Washington, close enough that my dad could still go take care for him there, but far enough that my dad could mostly focus on spending time with and caring for my mum. My granddad was at that facility from 2005 until ~2010, when the exorbitant monthly fees finally depleted his substantial life savings and he had to be moved to a government funded facility nearby. It was at that first facility, Merrill Gardens in Monroe, that I met him for the 3rd and last time. I decided to go spend father's day with him one year--I think 2009. I went and had dinner with him in the dining room, and hung out with him and some others who lived there. He was I think 82 years old at the time, and pretty much unresponsive. You couldn't really have any sort of conversation with him. I didn't see him again.

During 2004-2008, there were multiple instances where my mother's extended family were getting together for various occasions, such as Thanksgiving or Christmas, when I had to clearly explain to all them that I and my little family with two young girls would not be coming if grand dad were invited, because I didn't want him around my young daughters. I was usually roundly castigated for this, and sometimes they agreed not to have him come, but other times he was invited and thus our little family didn't go.

Other bits and pieces: My understanding is that my granddad fought in WWII in Europe, but I'm not totally sure about that. Also, he worked for many years as a chemist, I'm pretty sure, for some petrochemical company in the greater Boston area, from which he retired when he got to the age for retiring.

It's also my understanding that he made inappropriate and illegal sexual advances and comments toward the young nurses who worked at the assisted living facilities he was at from 2005-2011, and that the police were called multiple times because of this.

I'm glad he has died. He was an ongoing financial and emotional drain on my dad, who has enough of his own stuff to deal with, but who promised my mum before she died that he would look after my granddad.

Finally, if you or someone you know is committing or has committed sexual abuse of children, please call StopItNow's free helpline at 1888PREVENT. The folks at stop it now have a lot of experience helping abusers find the help they need to stop abusing and become safe people. And if you know of a situation of ongoing abuse, please act now to protect the victims--the phone counselors at Stopitnow can guide you as to what steps you can take to protect the victims and prevent further abuse. Even if you're just suspicious and want to know how to tell, they can help you with that as well. If you're not in the U.S., please find an organization in your own country that can help.

Notes on my visit to Carmel Welsh Presbyterian Church, Sebastopol, Victoria, Australia

I had a lovely walk through small-town Oz to the ancient-by-Aussie-white-person standards lovely old bluestone block church building—built in 1865. I came in a little late just as they were greeting one another. I was delightedly overwhelmed as person after person came up to me to introduce themselves, wish me good morning, and shake hands. They were using a karaoke machine to stream lyrics to a television set on a tall stand at the front so folks could sing along to praise songs. The regular organist was out sick, so the gray haired pastor, Bob Gray, played with gusto as everyone sang. There was a mixture of modern praise songs and seriously old-school hymns. I love singing and knew all the hymns from growing up in another old-school church, so I sang out, though I was slightly shocked at some of the lyrics.

Hanging from the rafters near the front was a Welsh flag—a gorgeous red dragon on a white and green background. There’s a fascinating Wales/Australia/Philippines connection here. The church was founded by the Welsh mining community hereabouts during the Aussie gold rush. They’re proud to bits about this, having last Sunday had their 150^th anniversary celebration with some 200 people in attendance. Today there were about 30 in attendance. There were various mentions of connection to the Philippines, and several of those in attendance were from there. In the bulletin there were top quality eggs on offer, $3/dozen, from Brenda, with all proceeds going to feed malnourished children in the Philippine city of Salamanca, the home village of Jun, Ailyn, and Ivy--all church members. This same Jun came up to me in the very back row during service to introduce himself and welcome me. A bit later, during the offering, 68 year-old Reverend Bob himself came back and asked all our names, giving Megan a gracious if perhaps slightly forward kiss on the cheek. A bit later, Bob welcomed the five of us by name from the pulpit in the most gracious, delightful, countrified way, acknowledging as Megan had told him that she had ancestors who attended this church in the late 19^th/early 20^th century. He seemed truly delighted to have us.

The church was focused on temperance—a fascinating experience for me, as I grew up in a teetotalling church, and never drank a drop ‘til the age of 26, when my much freer Anglican-raised Australian wife brought me to a pub for the first time, during our courtship in Italy! =). There was bragging about the church having been at the cutting edge of temperance in Oz for nearly 100 years. “How far ahead of their time were they, standing up against drinking and gambling—ahead of us in this modern Victoria that we live in where you can’t walk down the street in Melbourne without getting bashed by some drunk”, said Reverend Gray from the pulpit (more on which later). A lady who didn’t look a day over 50 proclaimed “I’ve got a card at home that I signed in 1941 that I would never drink—and I’ve never drunk!”

The sermon was drawn from Exodus 33, with myriad other proof texts thrown in. There were three points, all answering the question “How can we know God?”: 1. Faith in his word. 2. Focusing on his way. 3. Full surrender to him. I found the sermon to be an endless series of delightfully shocking quotations. It was almost as if a caricature of fundamentalism had come alive and was standing before us. I include a few below, with my favourite bits bolded.

• “Moses knew that knowing God is tied up with national security. We have divorced, of course, state and church, in our so called democracy, and we do this of course at our eternal peril”
• “We live in this evolutionary age that says there is no god. You can’t get a book on plants and animals today that doesn’t mention evolution. Been around for millions of years—rubbish—no wonder our children don’t know God. Even those who claim to be Christians don’t want to stand on the truth of God’s words and tell these evolutionists they’re wrong. Any medical doctor will tell you that Monkey blood has no comparison with human blood! The Bible says very clearly the life of the body is in the blood.”
• “My guilt and shame--Jesus took it all on Calvary. Exactly what are we without him?: the heart of man is desperately wicked. That heart needs to be broken. We need to be focused not on saving the planet, but on saving souls.”
• “365 Old Testament prophecies were fulfilled in the New Testament. Many of the Old Testament prophecies are being fulfilled today. ‘There shall be wars and rumours of wars.’ II Peter 3 talks about meltdowns in nuclear reactors! The time for Christ to return is growing very close. The book of Revelation warns of 666 on forehead/hand. They’re practicing on animals at this moment. That’s why councils are insisting on dogs getting these implants. They’re preparing so they can do it to humans next.”
• (Finally, in reference to the wine and bread for Communion, and just in case any stray Roman Catholics were in the building) “At no point do these elements become anything other than what they are: bread and wine.”

After the service, Reverend Gray came and talked with us a bit. I gently mockingly told him we were from Melbourne, and (referring to his quote above about Melbourne and drunks) that we were regularly accosted by drunks in the street. He replied by sharing with us a story. When he was 13 years of age (that is, in 1956) his father, an engineer, was bicycling home from work and was hit by a drunk driver, leading to many years of back problems and back pain as well as (according to Bob) an aneurism which eventually killed him. Since then he’s had “no truck” with alcohol nor with those who do have truck with it. I expressed sympathy for Bob and his father, though his story leads me to conclusions about driving and drinking rather than about alcohol generally.

After that, we all retired to the church hall for tea, coffee, and cake. I got to see the small but growing church library, and met and talked for a bit with Peter and Gracie and their lovely family of three girls—about my own girls’ age. Peter gave the children’s sermon during the service, using (seriously old-school) a felt board! He told the story of Zaccheus, whose name he pronounced, much to my delight “ZAK key us”, which is rather different from the “zak KEY us” which I learned as a child. Peter recently finished his bachelor of ministry at Bible College, and works for a company which provides assistance devices such as wheel chairs. He wants a full time ministry position, and I think it would be lovely if he became minister at Carmel Welsh when Reverend Gray retires. His telling of the story of ZAK-key-us was connective, almost post-modern, delightful, funny, and he had all the adults and all the children, who had gone up front to sit and listen, raptly listening—in the palm of his hand. During the service Peter told everyone about the small library, which is his project, and asked folks to donate books, as apparently there is no theological library anywhere in Ballarat for those interested in studying more deeply. Hurrah for education and opening minds!

Joe asks an interesting question

In this post, he asks "How many cups of coffee does a man have to drink alone before he is a failure?"

What do you think?

It pays off