Tuesday, June 16, 2015

Exposed



My daughter’s speech therapist had her give a presentation on Autism to her class at school a few weeks ago.  Shane and I arrived a few minutes late, so the lights were already dimmed, and the class was already entranced by Isabel’s power point run down on what Autism is, complete with some of the different ways it can present itself. 

Isabel had asked me for some pictures of our family in the days leading up to this, and had asked me how she should explain the differences between her own Autism (Asperger’s, or, what the psychiatrist prefers to call it now, Pervasive Developmental Disorder), and her little brother, Cale’s Autism (the non-verbal, naked in the sunshine with the exception of a pair of purple, flowery boots on, kind).  And there it all was, spread out on the screen in front of the entire class (although I thankfully hadn’t actually given her any naked pictures of Cale).

Isabel is ten years old now, and is in the fourth grade – a complicated social time for little girls already – so the speech therapist and I had explained to Isabel, as best we could, what it might mean for her to tell her whole class that she has Autism.  Then we left it up to her to decide whether or not she really wanted to go through with it.

When the lights came on again, Isabel opened the floor for questioning.  And she expected questions.  Immediately.  The class, however – an assortment of scruffy haired children in brightly colored, mix matched clothes, and many with names like Sage and Mango and Canyon and Pine Tree (this is Missoula after all, and yes, I am making up Pine Tree, but the rest, I swear, I am not making up) - sat there staring at Isabel as though she was different.

Isabel’s presentation did explain a lot about her.  It explained why she doesn’t always understand all of what is happening.  It explained why she gets so upset sometimes – why she occasionally crawls under her desk and plugs her ears and cries.  It explained why she is pulled out of class for friendship group and counseling, and why she gets all of that extra help with her math.  But I think that the class may have been thinking something else as well. 

Those kids seemed to be examining my daughter for any indication that she realized what she had just done.  And I wouldn’t say that it was a negative examination.  Rather, they seemed genuinely flattened by her unguarded openness, by her guts, and by the fact that she trusted all of them with this.

“Well?” Isabel finally said in her stiff little, monotone way, “What are your questions?”

“Come on guys,” the teacher said, “You can ask anything you’d like.”

One little boy slowly pushed his hand into the air.

“Yes?” Isabel said.

“How old were you when you found out you have Autism?”

“I was four,” Isabel answered, “NEXT.”

A series of muffled giggles rolled through the class, mine included. 

“How old is your little brother now?” one little girl asked.

“He’s eight.  NEXT.”

“And he doesn’t talk at all?”

“No.  But he screams all the time.  NEXT.”

Shane and I glanced at each other, repressing giggles.  It is true that just because Cale doesn’t talk doesn’t mean that he is quiet.  It was also clear that our daughter could use a little work on the finer social graces of question answering. 

This went on for a few more minutes, with equally pat questions and answers.  And finally, the teacher said, “One more question now.”

Three children raised their hands at the same time.  Isabel pointed at the first little boy that had raised his hand.

“I just want to thank you,” he said, “for doing this I mean.”

I suddenly found my eyes filling with tears.

“Me too,” said the other. 

“Me too,” said the third.

“You’re welcome,” Isabel said, shrugging her shoulders and smiling big.

In the days that followed Isabel’s presentation, I kept asking her how everything was going at school. 

“It’s going good, I think,” she said to me one day, “A couple of kids that weren’t my friends before my presentation are friends with me now.”

“That’s wonderful, sweetie!” I said.

“But there’s this one boy (she told me his name) that keeps making fun of me.”

“What does he say exactly?” I asked.

“He says, ‘You have Autism, get away from me!  You’re different!’”

“Oh?”

“And I don’t like that,” she continued, “I don’t want to be different, Mom.’”

“Different, huh?” I said, “Is this the little boy that had the long, blond dread locks, and the avocado green beanie on his head?”  

“Yes.  Why?”

“Just wondering.”

Somehow it doesn’t help my daughter to be told that everyone is different, that it is perhaps the only way in which we are all the same.  She just doesn’t hear it.  So I found myself telling her something else entirely instead.

“When you share something about yourself with people, Isabel, you are giving them a special gift.  You are giving them a piece of who you are.  And it isn’t fair to assume that everyone will love that gift.  Some may even really dislike it, because it makes them uncomfortable.  But there are also always those whose hearts you might touch in some way.  And they are worth it.  And heck, even if there aren’t, so what?  Never let the opinions of others stop you from being who you are, because you are absolutely beautiful.”

“Like you, Mom,” she said.

“What?” I asked, “I’m beautiful?”

“No,” she said.

I think my chin actually landed on my chest.  She giggled. 

“What I mean is you with your book,” she said, “Hey, when do I get to read your book anyway?”

And like a boomerang, my own reasoning came back on me.

*

It has been such a pleasure to write this book of mine, which, at the moment, I still refer to as a baby alien rather than a coherent story.  It’s better than it was before.  It now begins where it should begin and ends where it should end, instead of the other way around.  I have removed pieces that shouldn’t be there at all, and am filling in missing pieces.  And the whole thing seems to be balancing itself out, whereas it used to lean so heavily to one side that I sometimes wondered if I should just let it tip over.  It’s looking more and more human every day, and I must say that the part that has been the most fun has been in allowing other writers into the process.  It has been in the sharing.

This was rather tedious for me at first, because I felt like I was coming to the table a little too late in life – like I was in the bathroom while everyone else was going over the directions, and was suddenly having to guess about things that everyone else clearly already knew.  I thought that there was good writing and bad writing, and that I must learn a whole, new, purely intellectual kind of knowledge to be able to differentiate.  Yet as I have gone along, I have come to believe that there is really no such thing as good writing and bad writing.  Rather, and like anything else I suppose, there is conscious writing and unconscious writing.  There is soul-filled writing and there is dead writing.  

I must say that I don’t think dead writing is always dead because it necessarily comes from an emotionally void writer either.  Rather, I think that cracking one’s soul open with chisel and a hammer and allowing the contents to leak out onto a page, takes some time.  It takes some practice.  And it takes some ego deflation, which means that it also takes a lot of safety and an almost ridiculous overabundance of encouragement.  This is why, while reading each others’ writing, the women in the workshop I am currently attending and I may think, Wow, this reads just a little bit like a book report, but what we actually say is, “I can tell that you love this part and this part, so I would love to see some elaboration those parts.  But over all you are doing a great job!”

It is a dance with the devil. 

I think that the devil, if given the opportunity, would stop a writer’s writing before it ever even really began.  I should probably also mention that the devil I am talking about here is nothing more than ego.

I have only had one chapter, so far, make everyone that has read it very uncomfortable (and this is probably only because no one has read my whole story yet – there are undoubtedly more).  I have also been given some feedback about what to do about this.  And here is how that sort of thing seems to go.  One person says, “Maybe you could give us a little warning, a little something that says the whole story isn’t going to be this dark,” which is of course immediately followed by someone else saying, “Hey, darkness isn’t darkness if you know it’s going to end, right?” 

And it seems like the more people that give feedback, the more, different and sometimes opposing, answers I get.  Things don’t become clearer.  They become less clear.  I went crazy over this for a few days after letting others read that chapter in fact, until I had a friend remind me that the only one I really need to please is me.  And I do agree with this in that I cannot take the opinions of others so seriously that it keeps me from moving forward, yet I believe there is a definite place for these opinions as well.  This is because I believe that the single, largest combatant of self-centered ego is others.

I think my ego sometimes likes to tell me that my story is really good and really important, or that it is really bad and boring and unimportant, while the opinions of others, overall, seem to be telling me that the truth is neither of the above.  My ego likes to tell me that I have to be interesting enough, or clever enough, or whatever enough, to be able to write, while the opinions of others seem to be telling me that I don’t have to be anything in order to be able to write.  And my ego likes to tell me that there is a definition of good (even though no one seems to know exactly where to find such a thing), and that if my writing isn’t good, that I need not bother to continue with it, while the opinions of others seem to be telling me that I need to be willing to look bad just as much as I want to look good – that I can learn a lot, probably need to learn a lot, from both.

It is a dance of energy, if you will, rather than a dance of answers.  It is about keeping a right-sized perspective on something that is still very much out of my control.     

I have a friend that likes to say that over-sensitivity can be one of the greatest handicaps a person can have.  I have another friend that likes to say, “Loving (and loving and writing are synonymous in my opinion) is at least in part about growing thicker skin.”  So that is what I am trying to do.  I am trying to grow thicker skin.  Therefore when I got the comment, “There are parts that are really starting to shine!” on the last chapter I had edited, I did not hear, “Wow, after all this time, this is still mostly garbage!”  Okay, maybe I did for a minute.  But I also let the “shine” part get in.

I was sitting in my writing workshop the other day, looking around at the group of women that I was with – an assortment of women from all different places, all of whom have a fascinating story to tell, and some who are grieving the losses of loved ones, lifelong relationships in fact – women who I have heard say things like, “Oh, who cares whether or not it’s good?  I’m old.  I’m just doing this for fun anyway,” about their own writing, I found myself thinking about my conversation with my daughter again.   

I am sometimes amazed by how grounded these women seem to be.  And I am reminded, yet again, that it doesn’t actually matter whether or not my story is garbage.  It might make people uncomfortable, and/or it might touch someone’s heart.  And it might not.  It is simply a piece of who I am.  And it matters to me that I am writing it down.  It matters to me that I am trying to give a gift.

These women would love my daughter I think.  They would probably tell her to never stop talking about who she is.  So that is what I did, again, later that same day.  I did not tell her, however, that these women would probably also tell her to find that little boy and tell him what she thinks of his dread locks.  I was tempted.  Yes.  But I did not actually do it.

1 comment:

  1. I am so proud of you girl. I am all crying and thinking about your family struggle and my own personal struggles. Keep writing good stuff

    ReplyDelete