Susan's Blog

Sunday, July 10, 2011

Turned my whole world upside down

I was pedaling hard up a hill today, listening to Layla.  I reached the blissful pinnacle of the hill just as those first brightly colored piano chords struck, and the song shifted into Jim Gordon’s second part, so different from the first.  Where the beginning verses of Layla — Clapton’s — are passionate, lusty, angry, frustrated, the second part is pure yearning.  Maybe even a letting go, as those birds tweet twice at the very end.

The song shone in my ears and it tore my heart at its most tender spot, right where I keep Nat.  There on my bike I wanted to cry, thinking about this morning, when I had told him about his autism.  This morning, in the quiet fresh light of the early sun, I had suddenly realized that it was time.  “Nat,” I began, “I want to tell you something important, about yourself.”  His eyes were on mine, focused and interested.  “You know, you have something called autism,” I said, slowly.

“Yes,” he said, listening.

“You probably hear a lot about autism.  Bad things.  But what I want you to know is, you are not bad at all.  You are good.  But autism is a disability.”


“So that means — a disability is something that makes things hard.  You have a hard time talking.  That is autism.” He waited for me to go on.  “A lot of people have autism.  I don’t have autism.  Max doesn’t have autism, that’s why he can talk a lot.”  I paused.  “Your brain works differently because of autism, and makes it hard for you to talk.  But you are doing so well with it!  Your emailing is so great!”  I was smiling.  Ned was watching intently, I could tell from the corner of my eye, but I did not want to see what he thought.  If he was skeptical, I did not want to know.  I was not skeptical.  I feel that Nat understands, and so now I was acting accordingly.

“I write a lot about you, to tell people about how much you’ve learned.  They read my books because it makes them happy about their children.  I teach them things about autism.  Because you’ve done so great!”

He sat very still.  “Yes,” he said.  Did I see a flicker of something?  Was he sad?  Confused?  Did he finally understand why life feels the way it does to him?  Of course I don’t know.  I felt I did the right thing.

But as Layla flew upward and my bike sped downward, I wondered if I had helped Nat or hurt him.  It was so late in his life to tell him this, but it is only now that I feel he would understand.  I believed that he probably wants to know why he is different from others, even if he does not articulate it that way.  He needs to know that he is different, but not bad or inferior or broken.  He needs to know how great a person he is, how bright and strong.

But did I convey that?  Or did I just open a door to a dark and scary place for him?  Or did only some of it get through?  I know I’ll have to revisit this, often, to check in with him, make sure he is handling this news okay.

I believe people have the right to know important things about themselves, but they need to know them at the right time.  Nat, with all of his growth this year, in spoken and written communication, seems to be ready for emotional growth.  It is time he took his place in the world, as a man, and the best way to confront such a place is armed with self-awareness.

Still, my heart is hurting for him, because he is so new at all of this.  He has awakened, but it is only 3am in his life.  But just like any of my kids waking up scared, I’m here.  Tweet, tweet.


There is so much in this which speaks to my heart…and my fears about having this conversation one day with my own son. Like Nat, he is not ready at the age of seven and a half. *sigh* I will be interested to learn more about the process of discovery as it unfolds. I always learn something so important from you and Nat. Thank you.

— added by Niksmom on Sunday, July 10, 2011 at 2:27 pm

Awe that was really touching.

I’ve just always talked about it with my son, who is 5, so he knows he has it and that it’s just something about him. He tells everyone it makes him smart…which is true.

For your son, I would point out all the wonderful things he does. Loads of verbal praise, make sure he knows how special he is!! I’m sure you already do.

Nice blog, I just found you through twitter 🙂

— added by The Informal Martriarch on Sunday, July 10, 2011 at 2:37 pm

I think you did a great thing by telling him. You said it with love in your voice, so I’m sure that took away any fear that he could have had. Don’t doubt yourself. It happened just the way it was supposed to, and you balanced the truth about his difficulties with all the great things he’s accomplished. That took courage. Pat yourself on the back.

— added by Candy on Sunday, July 10, 2011 at 10:53 pm

I love that you told Nat what an encouragement he is to so many people – myself included!! His hard work and determination and your beautiful family make me hopeful.

— added by Suzette on Monday, July 11, 2011 at 12:33 am

Susan,you handled telling Nat beautifully,in a way that is both honest and encouraging.

— added by Nick Marchioli on Monday, July 11, 2011 at 8:03 am

What is it about the song Layla that does that to people? Everytime I hear that song it’s like this thought-provoking mini emotional journey, and the scenerio is always different, depending on what’s going on in my life when I hear it.
I understand why you couldn’t talk to Nat about autism till now….but just think how far he has come for you to think it was time…wow!!! Big stuff!!!!
Maybe someday I will be able to have that sort of conversation with D, but for now he thinks he is the “best boy in the whole wide world”. That is how he always describes himself…to him it’s all so perfect, and so is he!!!

— added by Eileen from Florida on Monday, July 11, 2011 at 9:01 am

I have absolutely no doubt, with the close relationship you have to Nat,that you’d know the right time for “disclosure”. I’m bookmarking this one for when it’s time for me and my boys to have our talks. Thanks for this!

— added by kim mccafferty on Monday, July 11, 2011 at 1:12 pm

I think your timing was appropriate. Mothers seem to instinctively know when it is the right time to give information to their children. We know when it’s the right time to have our typical children stay home without a babysitter, or when it’s the right time to trust their ability to go outside and ride a bike without supervision. The right time is different for everyone.
The important thing is that you are giving Nat the opportunity to understand how he is different, but doing it in a loving way and pointing out all the positives about him. Explaining autism by using examples that apply to him alone will make it easier for him to understand. I believe it will make the label sound less scary to him. He’s still the same person, just better, because he’ll be able to hopefully reach a point where he can understand the reasons for why he is the way he is. It’s always less of a puzzle when there’s a name for something.

— added by Sherry Rubin on Tuesday, July 12, 2011 at 10:36 am