Autism Awareness Meets Quilly's Three Word Challenge

It's Thursday, which means that it's the arrival of Quilly's dreaded Three Word Challenge. She gives us three obscure, look-em-up-in-the-dictionary words and asks us to use them. Agh. Today's words (and their meanings) were:

propinquity - Kinship or nearness
susurrus - whispering sound
nescience - ignorance

Unfortunately, it is usually only when we are brought into propinquity with a child or children with autism that interest and concern begin to whisper in our ears, to be a susurrus, awakening our consciousness and breaking through our nescience, our ignorance and lack of concern. Today is Autism Awareness Day. Two of my favorite bloggers who put a human and tender face - who put heart and tender honesty - onto this subject are Linda at These Are the Days and Michelle at Full Souls Ahead. I hope you'll take the time to visit them and learn a bit about what it's like to have a child or children with autism and what it's like to BE a child with autism. Or an adult....

Michelle today wrote about a woman she knew in nursing school who was "different" and how she wished she had known then what she knows now. (She's much more eloquent. Please read her own words). It made me think about people who have passed through my own life. When I lived and worked out in the world I was always a magnet for odd people. They seemed to find me and glue themselves to me, probably because I was kind. I would listen and talk. I would make an effort to include them. Truth be known, though, much to my shame I wasn't always very sincere. I often resented it. In those days nobody knew what autism was. I didn't, anyway. Maybe some of these people were autistic. Probably they were. In retrospect, instead of resenting them, I should have been impressed that they were out in the world working and functioning. There was a woman at my church who nobody could stand. I was pretty much the only person who talked to her and she hung around me a lot. She was brilliant but she had trouble communicating. I used to try and help her find better ways to talk to people. Thinking back, I suspect she was autistic. Should I have had to know that to feel more compassionate about her? I've always thought that when we reject people because they seem different, we re-enforce their differentness. It has always bothered me but I won't claim that I'm above it. Part of me resented this woman's intrusion into my life. My own insecurities screamed to attention when all the odd people in the world glued themselves to me. Would people think I was one of them? (Was I? Was that why they liked me so much?)

In Arizona, I met my friend Sue and her son Nicholas. Nicholas has Asperger's Syndrome. He was 7 when I moved out there. Sweet and smart and articulate. And ever so slightly odd. The kind of differentness that makes the rest of us when we are at our worst move aside. There isn't necessarily any kind of cruel shunning (though there well may be that as well), but there is still an instinct in all of us to move away. Because we don't know any better. Because we are afraid as children and as adults of being judged. Nicholas is probably 12 or 13 now. I haven't been in touch with his mother as much as I used to be. I know they decided to start home schooling him as he moved into puberty because they thought the social problems at school might be too devastating for him. Nicholas has a wonderful imagination and a big heart and a sweet sense of humor. People who don't get to know him don't know what they are missing.

I don't know what my point is. I wish we lived in a world where we were able to be kinder to one another. Whether the differentness is autism or obesity or blindness or some other disability, I wish we were actively taught to reach past or initial impusle at rejection. We are too often ruled by the susurrus - the whispering voices of wanting to fit in, of not wanting to be bothered, of not wanting to be different by association.

I hope that somehow Autism Awareness will not just knock down walls but will also build bridges, not just teach us what autism is and how autistic children (and adults) are different, but also - maybe more importantly - teach us how those who live with autism are the same and how we can reach across what seems like a chasm but is often only a crack in the sidewalk.

I hope the day will come when people like my friend Nicholas and countless others will be less isolated by their condition because the rest of us will know that they are not so different after all.

Autism's Friend in Name Only: The Fruit Fly Controversy

My friend Linda, whose young son has been diagnosed with autism, asked me to write something about the questionable nature of Sarah Palin's alleged support for families coping with autism and other disabilities. In a recent speech - her first major policy address - Mrs. Palin apparently dismissed some of the most promising research in the field of autism (work with fruit flies) as "wasteful earmark spending." As with her research into what the job of Vice President might entail, what a precondition is, or a host of other topics, Mrs. Palin apparently hasn't bothered to learn much about her pet cause of helping families struggling with disabilities either. Glibness may be entertaining in the short term, but glibness, especially when there is little or no substance behind it, has the potential for disaster in the long run. My own knowledge on the subject autism research is decidedly lacking, but here is a wonderfully concise explanation for how far off the mark Mrs. Palin's speech was.

Families who think Mrs. Palin and Mr. McCain will be their allies might want to think twice. It seems like another thing they share with Mr. Bush is an complete absence of understanding of the meaning of words like compassion and empathy.

Check out Linda's These are the Days blog for more information on autism and this subject.

One Single Impression: Stranded

The prompt for this week's One Single Impression is "Stranded." This seems to have tapped into my gloomy side. I thought about trying to art this week's poems up but they are very different from each other and I couldn't think of a way to do it, so... just stuck with naked words this week. The last poem is not haiku or even quasi-haiku, but is my effort to acknowledge Autism Awareness Month. I hope you'll visit the sites I have listed and find out a little bit more about a condition that very few of us understand.


Stranded on the shore
Does the old boat long to sail
On waves of memory?


~~~~~~~~~~~


Too often alone
Stranded in my baseless fears
Agoraphobic


~~~~~~~~~~~


She does not know him
The old man plaiting her hair
Strand by strand with love


~~~~~~~~~~~


stranded by autism's cruel grasp
locked inside himself
he circles, rocks or flaps his hands
his mother hugs him with her voice
because he cannot handle touch
or look her in the eyes
he does not speak a lot
but he can hear her love
can feel it with his heart
love is so much bigger
than the limitations we put on it
when we are ready to learn
he will teach us





I hope you will all take a minute to remember that this is Autism Awareness Month. The following blogs and posts offer an opportunity to put a human face and heart on something which for most of us is just something we have heard about but don't really understand.

These are the Days
Forks Off the Moment - We are All Unique
Mother of Shrek
Full Soul Ahead
Down River Drivel
Look Me In The Eye

The Circle Game

I'm a word person and sometimes a new word gets stuck in my head. This week, I've been reading my friend Linda's posts about autism and one of the things she wrote about was something called "stimming." Stimming is a way that autistic children (and really all of us on earth) find to cope with feelings of stress. For autistic children, it might involve flapping their hands and sometimes - as in the case of her young son - walking in circles. For myself, I play computer games or watch TV. If I could walk, I might pace, but that's not an option any more.

Anyway, Linda's article on stimming was in my head last night as sweet Tara Grace acted out the damage of her early life in her kitty version of stimming which involves muttering and circling the house, around and around and around... sometimes she just circles the window and my desk, making sure to stomp on my keyboard over and over (aggggh). I was watching a movie on the computer last night and she managed at one point to mute it. After I spent 10 minutes figuring out how to undo that not too good naturedly, I might add - she did it again. Within minutes of the movie's end, she stepped on something that took it right back to the start. Ironically, at the moment of this little act of torture the human, a little girl in the movie was singing Joni Mitchell's magnificent song, "The Circle Game."

After my very very worst self emerged and shrieked at poor Tara for just being herself, and as guilt and embarrassment at my reaction set in, my brain made a link to her behavior and stimming. Tara, I thought, is kind of like a feline version of a very mildly autistic child, only because she's a cat and not a child it's so very different. There's an element of humor in it. Her routine is so relentless, her muttering so passionate... it can make me laugh. It also worries me, though. Some days I feel like she will wear herself out and I feel so sad because she's not able to allow hugs. She will sometimes stop for petting - I think that's what she's seeking ultimately - some form of comfort. She's still too damaged from her early life to allow hugs. I can't pick her up and hold. I can't soothe her stress.

And I was thinking that this is just the tiniest taste of what it must be like for parents with autistic children. Tara Grace, after all, is a cat. She is my child equivalent, but she lives a cat's life. Nobody judges her for her circles. If anything they endear her to my friends. And she does not have to go out into the world. No ignorant adults or foolish children will stare at her or judge her because she's "different." She will never have to cope with the realities of operating in a world that doesn't always welcome eccentricity. Tara Grace won't have to go to school. She won't have to face the insanity of puberty with the extra burden of being different. She is safe here and sheltered from the difficulties of the wider world. As my cat, she is an eternal child and while I may worry about her, I know she's going to be ok.

I don't know how parents of even "typical" children do it, how they balance the joy and fear and responsibility of parenting. It has always seemed wrong to me that the "game" of life should be harder for some than others. At the same time I try to feel empathy for people struggling with the pain and beauty of their autistic children, I realize that I don't have a clue or a hint of a clue as to what it's really like. I have so much to learn.

I am anxious about this post. I don't know if I should post it. I don't want anyone to think that I'm comparing my cat to their children, that I am making light of something so serious and painful. I'm not. Obviously I've decided to post it in spite of my reservations. I tried to change the subject but it has refused to change and I've found that when that happens, there is usually some purpose that I don't understand. So I will risk it and hope that there is some value in these words that I can't hear through my anxiety and with the plea of forgiveness if I have offended in any way.

Just because I love it so much, I thought I'd share the Circle Game and it's lyrics. We really are all on a circling carousel in some ways. I've heard life compared to an onion where you peel away the layers as you move through experience. Either way - carousel of onion - it is an amazing ride.

Yesterday a child came out to wonder
Caught a dragonfly inside a jar
Fearful when the sky was full of thunder
And tearful at the falling of a star
Then the child moved ten times round the seasons
Skated over ten clear frozen streams
Words like, when youre older, must appease him
And promises of someday make his dreams
And the seasons they go round and round
And the painted ponies go up and dawn
Were captive on the carousel of time
We cant return we con only look behind
From where we came
And go round and round and round
In the circle game.

Sixteen springs and sixteen summers gone now
Cartwheels turn to car wheels thru the town
And they tell him,
Take your time, it wont be long now
Till you drag your feet to slow the circles down
And the seasons they go round and round
And the painted ponies go up and dawn
Were captive on the carousel of time
We cant return we can only look behind
From where we came
And go round and round and round
In the circle game

So the years spin by and now the boy is twenty
Though his dreams have lost some grandeur
Coming true
Therell be new dreams, maybe better dreams and plenty
Before the last revolving year is through.
And the seasons they go round and round
And the painted ponies go up and down
Were captive on the carousel of time
We cant return, we can only look behind
From where we came
And go round and round and round
In the circle game

Heads or Tails Tuesdayand Some Thoughts on Autism Awareness Month

Well, I brooded and pondered and wondered and thought about different ways to approach today's Heads or Tails Tuesday post hosted by Skittles. I thought about writing about the Fool in the Tarot Deck, about the Native American "wise fool" heyoka, similar to the court jesters of the Middle Ages. I had a couple of other ideas, but all of them required more effort than this poor fool was willing to put into it, so I decided to go for quotes, especially because I also wanted to talk about something totally not related to fools. But lets get the fools out of the way first. Here are some wonderful quotes on the subject for your entertainment:

“It is better to keep your mouth closed and let people think you are a fool than to open it and remove all doubt.” - Mark Twain

Abraham Lincoln said much the same thing: "Better to remain silent and be thought a fool than to speak out and remove all doubt."

"Only a fool tests the water with both feet." - African Proverb

“Any fool can make things bigger, more complex, and more violent. It takes a touch of genius-and a lot of courage-to move in the opposite direction.” - Albert Einstein

“He who asks a question is a fool for five minutes; he who does not ask a question remains a fool forever” - Chinese Proverb

“I must learn to love the fool in me the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries.” - Theodore Isaac Rubin

Theodore Isaac Rubin also said this, which I thought was very wise: "The problem is not that there are problems. The problem is expecting otherwise and thinking that having problems is a problem."

"Even a fool knows you can't touch the stars, but it doesn't stop a wise man from trying." - Harry Anderson

I add this one with some bitterness, although I didn't vote for the current non-elected president either time he stole the office: "Vote: the instrument and symbol of a freeman's power to make a fool of himself and a wreck of his country." - Ambrose Bierce

"A fool sees not the same tree that a wise man sees." - William Blake

"The serpent, the king, the tiger, the stinging wasp, the small child, the dog owned by other people, and the fool: these seven ought not to be awakened from sleep. " - Chanakya

"The cleverest of all, in my opinion, is the man who calls himself a fool at least once a month. "
- Fyodor Dostoevsky

"Mix a little foolishness with your prudence: It's good to be silly at the right moment." - Horace

"Our wisdom comes from our experience, and our experience comes from our foolishness." - Sacha Guitry

I love quotes and I could go on and on, but I'll stop here because there are more important things to talk about.

It's Autism Awareness Month

My very wonderful and very wise young friend Linda (aka Snoopmurph) whose blog These are the Days is well worth reading on any day, for it's gentle wisdom and its reflection of the beautiful soul who writes it, is writing this month on Autism Awareness. She is the mother of a young cute, sweet young son with Autism and is on a learning journey of how to best nurture and nourish the spirit of young Connor and also be fair to her older son Ian, who is not autistic. From what I can see, she and her husband are awesome parents on all fronts. I hope you'll join her on this month's exploration of Autism.

Oddly, the subject of autism came up right here in my little house in Hancock this morning in conversation with the kind gentleman who supplies me with food. I always try to respect synchronicity, so I'll share the story here as best I can and hope that it was given to me for some purpose.

A little background: Eight years ago, when I was living in Arizona, a friend of mine out there had a son - the magnificent Nicholas - who has a form of Autism called Asperger's Syndrome. Nicholas and I became great friends during my 18 months in Arizona. I practice a kind of healing called reiki and I sometimes use my voice in something called (or that's what I call it) "toning," when I reiki certain people. Nicholas loved reiki and he especially loved the sound. When I decided to move back to New York State, Nicholas was a bit upset, so I put some of my toning on a tape for him. I had that tape running this morning though I almost never listen to it - synchronicity again - when Tom, the Schwann's man, arrived with my groceries. I discovered a while back that Tom makes and plays Native American flutes and we have talked about that on a number of occasions. When he heard the tape and said - "oh, your listening to flute music" (How's that for a cool compliment?) - I told him the story behind the tape and he told me the following story from his days on the Pow Wow circuit. He gave me permission to share it. I will do so here as best I can, but know that I have not really done it justice.

Years ago, Tom was selling his flutes at a Pow Wow in Oklahoma He was sitting playing one of his flutes to entertain himself and pass the time for a while, and also watching the people coming and going. He noticed one young couple and their young son as they walked along. He said he could tell that the boy was a little different in some way from the way - he wasn't sure how - from his body language, probably. Anyway, the boy was just following along with his parents, but not really seeming engaged in the world around him. As the family neared Tom's booth and the sound of the flute became audible, the little boy stopped dead in his tracks, clearly mesmerized by the sound, completely focussed and absorbed. His parents were thrilled by this and explained to Tom their son was severely autistic and that it was always exciting for them when their he made that kind of intense connection. When Tom stopped playing, the boy didn't want to leave (Tom tells this story so much better than I do) and so he played a bit more and then on impulse, asked the parents if he could give their son one of his flutes. They were thrilled to accept since they couldn't afford to buy one themselves. He said the boy just stood there and hugged that flute like it was the most precious thing in the world. He didn't try to play it, but stood there hugging it and hugging it, looking ecstatic. And then - I was already crying at this point - he ran around the table, threw his arms around Tom and shouted "Thank You!" - the first words he had spoken in three years, according to his parents.

This story speaks to me in so many ways. It speaks of the pain and isolation of autism and how hard it must be for parents to have their beloved children locked away from them. It speaks of the power of music. And of course, it speaks to me of the power of simple acts of kindness and the power of love.

I don't really know very much about autism. I know that my young friend Nicholas has as heart as big as the world. I'm learning a bit more as I read Linda's posts about her son Connor and the journey she and her family are taking along with him. Autism is so prevalent these days that I doubt anyone reading these words doesn't know an autistic child or have a friend or family member who is living with and loving an autistic child. It would be wise for all of us to learn more about this condition. I hope you will join Linda as she explores autism all this month.