[Scene: ISAAC is at home with ANA, his nanny. She is trying to get him to eat his carrots.]
ANA: Isaac, papi, have a carrot!
ISAAC: No.
ANA: Isaac, come on these carrots are so good! [Eats one]. Mmmmmm!
ISAAC: Ana likes the carrots, Ana can eat the carrots.
And here we are. He walks into assembly at school now, completely untroubled. Months ago, he refused to go near the place with its linoleum floors, bright lights and deafening clamor. The anxiety is still there, as is the elevator obsession, joined by a new companion: buses.
These days, I awake as often as not to a recitation of our municipal bus lines. It's part of the deal, our special interest, if you will. It doesn't faze me too much--I remember my grand passion for escalators at that age--but then the world has a way of intruding into our snug little cocoon.
The world loves norms, doesn't it?
*
When my mother died, a part of me watched with detachment as I moved through the stages of grief--frequently all at once. But one thing people don't tell you is that your friends and acquaintances move through those stages with you as well. They have a timeline too.
They begin with shock, as we the bereaved do. Then kindness (sometimes distancing). Food is brought, hugs given, long weepy monologues patiently listened to. Assurances--"whatever you need..." are made. But then, at some predetermined yet mysterious moment, there is a shift.
You are supposed to be better. You are supposed to be back to normal. Because--let's face it--we humans are made profoundly uncomfortable by variations from the norm.
But the truth is that the bereaved accommodate as well. We try to pass. We pretend to feel better. We pretend to be back to normal. We simmer with anger. Or we express that anger.
Because then we have two things to battle: the grief, and the illusion that the grief is gone.
And this is where we are, in a way. As my boy matures, behavior that was passed off lightly at two or even four is now so much more evident. When he is overcome at school and lies on the classroom floor, or when he refuses to exit the elevator, demanding yet another ride, the climate shifts, and everyone has to accommodate themselves to this departure from the expected.
They want him to be normal, because, you know, it's so much easier.
But here's what I've learned. My normal has stretched to accommodate a lot more than it used to. And with that comes a certain serenity about what is happening at any given time.
So here is my advocacy project, my challenge to you and to the people around you. If you really want to make a difference in my son's life and the lives of people like him, challenge that unease you feel. Provoke it. Stretch your normal.
*wild applause* Yessssss! I love this! This is exaclty what I did with Nik during all of my husband's commencement-related activities...Nik came to every single one and we just did our thing —whatever it was in the moment— and expected everyone else to simply deal with it. And, remarkably, most of them did! :-)
Posted by: Niksmom | May 16, 2009 at 09:08 AM
I love this. It's simply so logical and beautifully written. Thank you, Susan. Isaac is so lucky to have you on his side. We're all lucky to have you on our side.
Posted by: kristen | May 16, 2009 at 01:44 PM
I know just what you mean, you express it so well.
Posted by: kal | May 16, 2009 at 06:44 PM
Bravo! This is wonderful, Susan. Beautifully said.
Posted by: Jordan | May 16, 2009 at 07:57 PM
yay! that's it exactly susan! i'm with you entirely!
Posted by: kyra | May 17, 2009 at 06:09 AM
Susan, this is so very much related to what I'm going to be writing for BlogHer on Tuesday, and exactly the kind of post I've been trying to find. And here you wrote it two days ago!
Your eloquence and love for Isaac make your blog glow, softly but so brightly.
Posted by: shannon | May 18, 2009 at 12:00 PM
Thank you. This is very thoughtful and inspiring.
Posted by: HKW | May 20, 2009 at 04:25 PM
Gorgeous. And true.
Posted by: drama mama | May 20, 2009 at 09:12 PM
I really liked this entry, both as it relates to autism but also beyond. Thanks Susan.
Posted by: Beth | June 03, 2009 at 04:26 PM
I wanted to write sth...but u wrote it all and so to beautifully!!
Posted by: b | August 19, 2009 at 09:53 PM