the missing tooth

He pulled it out at school!

And here it is:

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.

gratitude Sunday: robot costumes

from this...

to this!

Historically, Little N does not like Halloween or costumes. We've never pushed the issue and let Halloween be about pumpkin carving.  This weekend, his dad suggested that there might be robot costumes.  That was very exciting!  And we found one!  A yellow Transformers costume.  Little N says it makes him very fast.

commonplacing: TAZ

In my small group at WPUMC we're reading Brian McLaren's Naked Spirituality: A Life WIth God In 12 Simple Words.  It introduced me to the concept of a Temporary Autonomous Zone (TAZ).

"...rigid conformity and emotional inhibition stultify the human spirit, and so occasionally people defy the authorities and dare to dance.  They create what author Kester Brewin describes as Temporary Autonomous Zones (TAZs), places where the normal patterns of hegemony and homogeneity are broken."

This is taken from page 65, quoting Barbara Ehrenreich, and citing examples like Woodstock, Burning Man, Mardi Gras.  These events, at their best are about jubilation, freedom, and connection.  He continues on page 67.

"Could it be that the kingdom of God is the ultimate TAZ, the ultimate liberation from the normal oppressive patterns of hegemony and homogeneity."

When I was single and child free it was a lot easier for me to resent and resist hegemony and homogeneity.  Certainly they were always there, but I did feel freer to choose people, interests, and expression that were outside the norm.  I didn't dream of marriage, family, and home ownership.  I dreamt of living purposefully, finding a way to make a difference, to be my own, and to be different.

That desire was part of why I chose the graduate school and program that I did.  Whole Systems Design (WSD) at an alternative university.  My dream took the shape of wanting to write, specifically articles about good news, and then maybe start my own program focused on that kind of story.  Producing the stories.  Training people to seek, articulate, and promote good news.  But WSD didn't work that way for me.  It focused on talking and small groups.  Not my areas of professional interest.  Worse, to me, it didn't help equip me to navigate or talk back to the "real world" of hegemony and homogeneity.  I graduated more adrift and vulnerable than I started.

Reentering the "real world" I married my grad school honey, started an interim job, and suddenly fell pregnant.  Six years later I'm still at the job working as the sole provider for my little family.  I feel trapped in the hegemony and homogeneity of job, home, and child rearing.  Any little gap for autonomy is savored, celebrated, and jealously guarded.

These days I find my Temporary Autonomous Zones in my small groups (ironically enough given the grad school debacle), both the Christian group and the Pagan group.  Granted, we are not dismantling patriarchy or otherwise disrupting the status quo in publicly recognizable ways.  But we are peeling away our conformity and inhibition to unveil to ourselves and these trusted friends our thoughts, feelings, and private realities.  And in Pagan ritual we even "dare to dance."

Today it is easy for me to accept grace as the thing that pierces hegemony and homogeneity and frees us to be authentic souls liberated from the rules that stultify human life.  This definition holds true to the example of Jesus's life - practicing a life of loving others that put him outside the rules and mores of the law and the culture of his time.  He stands as the model of how Christians too ought to live lives of love, lives changed by that grace.  I experience this kind of grace in the Pagan rituals as we minister to each other in ceremony, raise energy together, and "party like Pagans."

But it's challenging me and yet I'm hungry for it, to have this grace in the rest of my life in the "real world."  (I guess that's why they're "temporary" autonomous zones.)  How do I live a daily life of such grace, outside the bounds of hegemony and homogeneity?  Is it just part of being fully human that we develop and abide by these conventions?  To live in this world, a soul and a body, means we entangle ourselves in these invisible, powerful things.  And it's a life of spirituality, of practice and of hunger, that manifests the desire for grace and the means to be grace to ourselves and others.

pit stops

Little N and L are on a road trip today.  Kiddo is on spring break from preschool.  They'll camp out  and drive home tomorrow.  I'll have our place to myself tonight.  (It's a treat for all of us.)

gratitude Sunday

It's an experiment that Little N did with L!  They collected rainwater in a special jug outside in yesterday's big storm (thunder, lightning, hail, gusts of wind, rain).  Then they brought it inside so Little N could paint it green (his favorite color?).  The theory behind the experiment is that the rain comes from the clouds so painting the rain green is the kind of like painting a cloud.  More specifically, it's about change, a word and an idea that Little N has been working with all week at school (blending colors and planting seeds).  Here we changed the color of rainwater.  

What I love about this and am grateful for is Little N's imagination continuing to appear in our daily life.  And I'm grateful that L is so keen to respond to, expand, and carry out experiences like this with Little N.  It's the best part (and we're keenly aware of the worst parts) of having L home full time as a stay-at-home dad right now.  He can support Little N in these explorations in a way that he likely couldn't if he was working full time.

As for me, my nights and weekends are fuller and richer as Little N invites me to play with him a range of imaginative games like being salmon in a river or battling laundry baskets as sparring robots.  And then there are new concepts he's trying out like "work" as in sitting down and doing a bunch of puzzles together.  I feel more engaged with him and like I'm getting to know him better as his ideas and interests are expressed in ways I can understand and participate with.

We're the lucky ones.  And I feel that keenly as well.  We have a child on the spectrum who can speak, play with us, and continues to develop his self expression in ways we can access.  I didn't know if we would have these things when they handed us the diagnosis of Autism Spectrum Disorder.  I grieved the loss of them and tried to loosen my expectations for this child, to wait and see what would be, but still I hoped.  I hoped for ways to make sense to each other, hoped to know his thoughts and interests, hoped to connect with him.  And it's all happening.  Gratitude isn't a big enough word to express my joy, relief, and delight in knowing my son in these new and fun ways.

this is what progress looks like: spaghetti sauce

We've added chunky spaghetti sauce to Little N's list of foods!

His favorite way to eat it is on top of pizza.

He's very proud of the fact that he eats the chunks of vegetables and green leaves in the sauce.

We're pretty proud too.

Here's a photo he took of what he usually eats. 

Yogurt, applesauce, and pasta with green bean puree.

In addition to these he eats: bread, apple slices, bananas, and milk.  It's a pretty short list.  So we celebrate every new little addition.  Daddy saw him eat graham crackers and raisins at school!  We've got to figure out how to get that to happen at home too.

oh fiddlesticks!

L has been asking me about a toy he remembered from childhood.  It was wooden, and there were these round wheels and then different lengths of spokes and you used them to build.

I found them at our local toy store under the brand name of Fiddlesticks, although they also go by Tinker Toys.  I picked up a set of them to keep Little N and L busy together during the Thanksgiving break.  The toys practice kiddo's fine motor skills, his imagination, his verbal skills (asking for help) and his social skills (building with L).

First night with the new Fiddlesticks and they are a hit!  For kiddo and his plush pals.  

this is what progress looks like: successful IEP meeting

Parent Teacher (& Kiddo) Conference this morning at Little N's school.  We met with Little N's teacher, his Occupational Therapist, and his Speech Therapist.  (They look so young to me!)  We learned that he is making progress on all of his goals and has actually achieved a few of them.  We also received some helpful suggestions on what we can work on at home to help him to continue to progress.  We are so grateful for this terrific team and their work with Little N.

To celebrate the good news, and Little N's good behavior during the meeting, we visited the Goodwill store on the way home.  Sitting next to the bicycles was one scooter.  Kiddo has been asking for a scooter for months.  I looked up at L, "Is this for sale?"  And $8 later it we were walking it out to the car.  Kiddo was ready to ride it immediately.  A quick trip to the park and he was on his way!

Next meeting: preparing for the transition to Kindergarten...!

first week of school

First day of school!

We resumed preschool this week.  Little N is in the same program but with a new teacher.  A few of his old classmates remained and of course the aides and therapists.  We are thrilled to say that he loves school and has adjusted back into the routine very smoothly.

Adding to our joy - he's eating new foods!  Kiddo is a severely picky eater.  He only eats 5 foods.  But each day this week we've received a note home from his teacher detailing what new foods Little N has tried during snack time.  We are so excited and proud of him!