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.
