God is the madwoman in the attic.
I'm camped out on the threshold with my journal, camera, and plenty of snacks.

Thursday, January 09, 2014

I am sad… that Little N has Autism

We had an important meeting this week at Little N's school.  It was his Special Ed reevaluation and Individualized Education Plan meeting where the school psychologist and Little N's teacher and in-school therapists discuss his current scores on their examinations of him with us, his parents.  We also planned the goals for his next year of school.  It was an in-my-face discussion of all the places where Little N continues to fall behind peers his age.

I was anxious and preoccupied leading up to the meeting.  When we first received the notice for reevaluation I was nervous.  Little N was thriving in the Special Ed class, what if they wanted to pull him out of it! Then we received his report card.  Little N was scoring below average in most areas of the report.  What if he never got out of Special Ed?  What if he could never hold a job, make friends, offer compassion to someone… the fears and questions took over.

During the meeting, I took notes on all of Little N's challenges.  They are painful to me.  It's as if Autism gets in his way of being him.  But then I also try to be pro-Neurodiversity.  I try to acknowledge and accept and advocate that there are many ways of being, perceiving, and expressing oneself in the world.  We've got a smattering of typical, acceptable ways to be in society but kids like Little N reveal more of what's possible.  Autism doesn't necessarily get in the way of him being him; it's part of him being him and part of what he offers his family, classmates, teachers, future employers, and all the folks that come in contact with him.

I put a good face on it on Facebook.  And it was a good meeting.  Little N is a joy to work with.  Each one of the experts in the room repeated that in one form or another.  They enjoy working with him.  He's eager, playful, fun, retains what he's learned, makes excellent progress.  And... he scores below average on all of their tests.

I brought all of this to my much-loved therapist.  "I'm sad," I told her.  She murmured understanding.  Then she asked me, "How sad do you feel?"  I couldn't answer.  I need time to sit with myself and just feel all the emotions tangled up in my son's Autism.  She could have said, "It's not all about you."  But she didn't.  Because my feelings about my son's challenges are about me.  I'm allowed to feel sad sometimes, even as I get to be encouraging and curious and supportive a lot of the time.

I have some sense of where the sadness comes from.  My grief that the perfect, typical boy I thought I had is gone, along with all my unarticulated dreams and expectations for him.  My memory of the close relationship between grades and self esteem: A means I'm awesome, D means I'm dumb.  What could "below average" possibly mean in that matrix?   My fear of the world out there, of cliques and cruelty, where there is very little room for someone different.  My pervasive doubt that I can in any way equip him for that world and the challenges that await him there.

It was a good meeting.  Little N is a joy, to me and to his team.  He is making progress that all of us can see and celebrate.  Someday he will be mainstreamed into a general ed classroom.  I have reinforcements in the form of his team, and even those dreaded reports, to help me teach him the tools he needs for the days ahead.  All of this is true at the same time that my sadness is true.


Bright Side of Life said...

I hear you. It is sad. I have been there and at times still go there. Sending you a cyber hug from a complete stranger (me!).

Jenni said...

Thank you for the hug! I appreciate your comments. Thank you!

zannejude said...

Finally got around to reading this, Jenni. Grief seems pretty integral to this whole parenting process even without autism. Know that you are loved. So is N.