Tuesday, January 30, 2007

My daughter's been on my mind extra much lately. She's three, and she only has about 50 nouns and two or three verbs so far. No, she's not one of those kids who just talks late. She also only just started pointing; usually she uses a doll to point for her. She is incredibly happy and sweet; she has a lovely personality. She smiles with bright eyes, and laughs in all the right places. We think there's a bright, beautiful kid in there, but she's either mildly autistic or something called PDD-NOS. For us that means a big hunk of autistic non-communicativeness with little bits of autistic rigidity and, fortunately, no autistic oversensitivity as far as we can tell.

If you offer her a banana, she doesn't look at you. She looks at the banana.

And she's having a lot of trouble learning to talk. She's talking about as well as a one and a half year old.

I'm a writer, and I can't tell my daughter about ponies or clouds or the Good Folk. I can't even tell her about the Cat in the Hat.

I love her. I wouldn't trade her for another kid that was normal. I just want her to get better.

Yeah, and we've got professionals who work with her and all. And she comes home from those sessions and she's beat. It is exhausting for her to make contact.

I want to tell her it will be okay, but she doesn't know anything's wrong. I guess that's a blessing.

When this first came on, we thought she couldn't be broken. She's so happy. And lovely. She was just confused which language to speak. And then I thought, if she could just realize that she could get stuff by talking -- at that point she was only taking us by the finger and leading us to food -- the dam would break and she'd learn to talk.

I'm just coming to terms with the idea that she's not going to snap out of it, and that I don't know how much of this can be fixed and how much of this is going to stay.

It was a rough day today because she came back from a session of playing with other kids with problems, and she was so tired she could barely look at me. She was just out of it. When she's tired, that's when she has the most trouble connecting.

I'm a little bit like that. No one I know would consider me shy, but I find being with people exhausting. I just do it because I have to.

When I was her age, I'm told, I didn't want to be held. There are no pictures of me with my mom's arms around me. I used to think that was all her fault. Now I'm not so sure.

At least Jesse loves to be held. Not for long, but she loves it.

Today was not a good day. Lisa's in New York giving a talk (go Lisa!), and Hunter was home from school because of a disagreement with another kid that did not, um, turn out well.

I love being a father and a husband, and my life is blessed in ways that many people only dream of. I guess this is the rain that falls into my life.

In three days, we are halfway out of Winter. That gives me hope.

Labels: autism, kids

9:36 PM

8 Comments:

PDD-NOS diagnoses often have the brightest outlooks longterm.
As for not feeling that you're able to share some important things with her, you may find in years to come that she has things to share with you that you may never have guessed at - it will make them all the more precious because of that.
Best wishes
http://whitterer-autism.blogspot.com

By  Anonymous, at 10:46 PM  

Just wanted to say I'm hoping for the best for all of you.

By  Will Shetterly, at 12:33 AM  

Don't stop sharing with her. My son remembers things from his early childhood that we thought he hadn't even noticed. You are going to need to take up the lion's share of figuring things out for her but she will catch on, often suddenly and wih wonderful insight.
She's not broken, she just sees things differently.

By  Hawise, at 11:15 AM  

Thanks for sharing that... Interesting how the title of your Blog doesn't just apply to screenplays. I just read an article somewhere about an Autistic adult who had the same type. He is practically cured (if that's the rtight term) because his folks continued working with him. Wishes can come true.

Best,
Chris

By  savinoboy, at 12:43 PM  

Wow. . .I can't even start to imagine what you're going through. Nonetheless, despite the difficult times, it sounds as if you approach it with grace and delicateness. At least, moreso than I have seen other people do so.

I raise my glass to you.

By  Anonymous, at 9:50 AM  

First, THANK YOU! Your work is a huge inspiration (thanks to your book, so many nuanced, subtle concepts leapt off the page and into my head) - just amazing stuff!!

Next, have no clue if this helps, but wanted to reach out - hope it's not too personal or weird, but whatever...

My brother is autistic. Or was - OK, it's the diagnosis on his records, but with a lots of early intense work, he grew out of it - but somehow managed to hang on to the good stuff. Who knew autism would give him an edge? He hates when my family talks about him... he thinks it's no big deal. Normal school, normal life, the whole deal. But he's immensely creative and focused with a crazy-unique vision - autistic traits maybe, but art school genius-factor that comes in pretty in handy junior year of college. He's worried about internships and portfolios and animation jobs. And if his hair looks cool. (it does) Normal, right? But in my head, the memories of his toddler days are so vivd. Watching my parents deal with the pain? Not always being able to reach their son? The worst. The frustration when he zoned out? The living room turned into a fuzzy petting zoo of chicks and bunnies for sensory therapy? (when I had a date?!) Not fun. The whole family learning to sign so he could tell us "more cookie"... breakthrough. A kitchen full of crayola... the list goes on and on... (& the expressive art thing obviously stuck). But by around four he could talk normally. And his current slacker-speak? More Kevin Smith's fault than autism, dude.

Don't know what my brother's toddler memories are like, but he says love was always black and white - an absolute that he understood was just true. We love him. He loved us. That was that, so he didn't always remember to show it... But he learned to be demonstrative. Anyway, me, my brother, we're total strangers to you. (& apologies for being presumptuous) But my point? Your family is not alone. And your beautiful daughter - even when she isn't looking at you - absolutely knows you are there and that she's loved.

Hope you're finding lots of support. There are so many schools of thought and different treatments. But you have the most important part covered - it's all about love. Wishing you and your family all good things.

By  Anonymous, at 12:34 AM  

I can't even imagine how this has affected your family. I think that love and faith can conquer a lot and Jesse is very lucky to have you as her rock, and if she's happy and joyful, with work and the support of you all, it will come. I believe and will keep you all in my prayers. Go Jesse, you can do it, sweet girl.

By  Anonymous, at 10:54 PM  

just came across this wired article and the similar characteristics described reminded me of this post. this child suffers from spd, sensory processing disorder.

By  deepstructure, at 8:52 PM  

Post a Comment

Back to Complications Ensue main blog page.