An interview

The marvelous Shannon Des Roches Rosa posted an interviewed with me and a review about Gravity in her column at blogher.com.

Gravity excerpts–Anjie Kokan

Glimpse the purity of a child’s delight in Anjie Kokan’s poem, “Watching My Son Watch Sleeping Beauty.” today over at Gravity .

A word about PACE and being mid-air

I’ve been writing blog posts about PACE in my mind ever since we returned from our week there last November. I have a friend who’s been twice now and one of the many helpful things she’s said is that the learning she gleaned took about six months to sink in. So, I guess I have a bit more time before I can expect sparks of insight and the concomitant behavioral harvest.

Ahem.

We’re revisiting a lot of volatility lately, explosions of temper, waves of recalcitrance, surges of inflexibility, a general narrowing of activities that Fluffy finds acceptable. Unfortunately, this coincides with a significant dip in my own resilience, patience, creativity.

There are times when things click into place after a particularly worrisome period, times when I can actually see the shifts, the release, the letting go in my son’s shoulders, the movement of his arms, the muscles of his face. Those are the times I bask in the glow that trusting in my son’s own developmental time table emits. But I daresay, the times I need that trust most are when he is still in the struggle.

When he is still up near midnight, wringing his hands, talking about the fear shooting in at his head. When the first thing he says upon opening his eyes is When will I get computer time? And asks and asks and asks and asks and then negotiates for more time and then plays and then talks about the game over and over and over and over. When he grills me about the day, What will we do? When we will do it? How long will it take? Do we have to walk Beegu?  What about tomorrow? But how long will it take? What if it’s raining? Can we just go around the block? How long will that take? Do I have to go? What if I can’t find my water bottle? What if I forget to bring it?

That water bottle. He wears it slung over his arm all day. In the house. Fills it carefully before bed each night. Carries it from his room to the bathroom at 2 o’clock in the morning. How do I know? Because he comes to get me first.

I’ve become friends with my neighbor, the one with the storybook children who keep ringing our doorbell to play with Fluffy every few days, even when he says no. Even when he yells at them. Even when he looks right through them as if they aren’t there. Because he sometimes throws the door open wide, says yes, invites them in, pulls out the games he knows they like.

Thank god for those kids.

We’ve been living in this rental for going on two years now. We’ve known for a long time that the owner wants to sell come spring and even though it isn’t really the best house, we’re buying it, largely,  because of those kids. We’re not going to have any other kids and I’m not sure when Fluffy will be ready for the world of school out there. I desperately want Fluffy to grow up with other kids, to log some hours with his peers, get to know them, care about them, have them get to know and care about  him.

So, we’re buying our son a house so the kids across the street can easily skip over. I told my neighbor, “Well, that’s it. Now you can never move.” I told my husband, “Well, that’s it. Those kids better never stop ringing our bell.”

This morning I shared with her about our rough patch, the computer talk, the difficulty in getting outside and she said, “Have you considered a computer moratorium and more scheduled out-of-the-house time?”

Ah! The innocence of the uninitiated!

I wish it were as simple as scheduling more out of the house time. I do. And I wish we had never stepped into the realm of computers but that’s done now. Done.  That pandora’s box was openned long, long ago. And the truth is, we’ve been through delicious stretches of engagement many times over these years even with computers in the mix. So, I don’t think it’s all about the computer, per se.

As always, I search for the middle ground, sometimes finding it, sometimes missing completely.  Home-schooling or un-schooling or free-schooling, whatever we’re doing over here affords us plenty of opportunities to ride the moving line between clamping down on what a child does because we judge it as a fixation and allowing the child free reign to pursue their favorite topics and activities.

The guiding principle has always been attending to my child’s safety needs. The insight I gained at PACE has been in how I interpret what that means. Our kids, all of them, derive a feeling of safety by knowing they are in the hands of someone Bigger, Stronger, Wiser and Kind. This unconscious sense of their parents as BSWK allows them to leg go, relax into this larger system holding them, guiding them, allows them to sink into their experience, to get out of their comfort zone in small doses, risk doing something new.

If a child doesn’t have that innate sense, they can never truly let go and so there is a way that they are always on guard.

That’s autism. At least, that’s what I recognize in our house.

We adults must hold the container for the child. We know more. We have more wisdom. We are the guide and the child needs that, requires that in order to feel safe, to know where they are, to push up against the boundary. If they don’t have that, they are holding too much responsibility and even though it may LOOK like that’s exactly what they want, ie, to call the shots, to boss us around, to control their world, if we let them take over that role, unconsciously or consciously, their own exploration, discovery and freedom is short-changed.

One of the activities at PACE was a super high zip line. Fluffy climbed 28 feet into the air to a platform where Eric, our facilitator, waited. Fluffy was harnessed to ropes and such. Dave and I inspected the set up many, many times, yanking on the metal foot rests sunk into the trunk of the towering pine tree. How many inches do they go in? Ever had anyone fall? Slip? Any equipment failure of any kind? That sort of thing.

It was quite a process for Fluffy to make that climb. Eric coached him beautifully, guiding him up in stages, up then down, up a bit more, then down again. He eventually made it to the top and he was enormously pleased with himself. I climbed up after him and the three of us stood on that six foot square platform, up in the branches, Eric leaning cavalierly at an angle, Fluffy and I clutching the bark.

I had done the zip line first so I knew how much fun it was but also how crazy it felt to some part of me, the part that was always alert to danger. You’re going to what? It was screaming. I don’t think that’s a good idea at all! Eric told me sit on the edge and when I was ready, lean forward until I was airborn. The line ran to another gigantic pine tree about 100 feet away. I sat on the edge, my heart pumping hard, my breath quivering in my throat. I was excited but also terrified.

“You know how you’re feeling right now?” Eric asked me. “It’s how your son feels a lot of the time. He may not even be able to put words to it but the things your body’s doing happens for him every time he’s asked to step into an unfamiliar situation, to do something he’s not sure he knows how to do.”

I sat on the edge of the platform, looking down to see Fluffy staring up at me. I hated to think of him with this fear coursing through him. “Hi Mom!” he said, his eyes wide. “Is it scary?”

“Yes. But also great!” I answered.

“When you first push off the platform,” Eric continued,  ”the wire will sag considerably as it adjusts to your weight. You’ll sink down a good six feet and it will feel as if you’re falling. But an instant later, the system will pull you back up and will hold you. You’re be entirely secure. And you can just go for the ride.”

“You sure it will hold me?”

“Yes.”

“It won’t break.” I said, more of an incantation than a question.

“It won’t break.”

I yelped out loud when I pushed myself off the platform. I fell. My stomach rose up to my neck and then slammed back down into place as the wire held my weight. I felt the harness hug my back, my chest, hold my pelvis in place and I dangled there 28 feet in the air, flying across the yard. It was absolutely exhilerating.

I saw it happen for Fluffy too. He fell, he screamed, and then he whooped and hollered with glee when he knew it was okay, his legs doing a spastic dance in the air and he rocketed away from me. As soon as it was over, he asked to do it again. And he did. Two more times, in fact.

Bigger, Stronger, Wiser, and Kind. That’s what I’m trying to be for my son. I’ve seen how it works. I’ve seen the shift when he’s able to push off the platform and let go into something, really let go.

I only wish I had a more constant sense of something BSWK operating in my life for me. I need to let go into something and feel the harness tighten around my chest, feel the freedom that comes from dangling while being held sure. Because when I don’t, I understand why my son finds it hard to let go. In those moments, I may be bigger, I may be stronger, but I’m certainly not wiser.

Gravity excerpts–Janet Kay

In her essay, “A Child Blink,” Janet Kay writes that “in spite of the abundance of literature on the subject, there is no clear road map for communicating with an autistic child.”

Come read more about her journey with her son Michael today at Gravity.

Gravity Excerpts–Kimberly K. Farrar

Come hear what the poet, Kimberly K. Farrar, has to say about talking to an autistic child today over at Gravity.

Back to our Gravity programming…

Come catch a theatrical high with Drama Mama over at Gravity Pulls You In.

Today, I hate this whole damn thing

I started this blog because I had to find a place to write through the dark feelings. And at the beginning–riding in my rickety ship through stormy seas, there were a lot of them.

The biggest storms have blown away but we’re still in our own little boat, still paddling along looking for fellow travelers, still only making it to the shore about half the time.

Today, I can’t see the horizon.

Today is a bad day.

Bad.

Today, Nurtured Heart is a distant memory.

I feel frustrated and stuck, furious at my inability to be effectual, to help, to guide, to teach. I feel like a failure. I’m failing. I’m failing at the most important thing, helping my son connect to the world.

Today, I don’t know what to do. Today, I want to shout, Please listen to me! Care about what I say! Stop fighting me at every turn! Please care about pleasing someone else!

I’m not saying my son doesn’t care about anyone else. I know he does. I know his heart would fill the night sky with a pulsing brilliance but today I can’t see it. I only feel the heat of the fire.

Today, my words erupt from my chest where they’ve been pounding with their fists. And they come and they come and they come, saying more things that I hope will get through, that I know won’t, that I know are only shutting down his ears more and more.

Today, my hands itch for shoulders to grab and shake, Stop it, stop it stop it.

Today, I’m tired of the resistance, the arguments, the behavior that comes from anxiety, from trying to be in control, managing uncertainty, keeping it all at bay.

Today I don’t have the stamina, the resilience, the patience, the perspective. And I hate that.

Today, I suck at being Fluffy’s mom.

Today, I hate this whole damn thing.

MothersVox & Anonymity

Step over Autism’s Edges and into the world of MothersVox today at the Gravity site where she writes about blogging anonymously.

Gravity excerpts–Grey Brown

What happens when sound hurts? Grey Brown guest-posts today at Gravity.

Gravity excerpts–Kristen Spina

Birthday party invitations can stir up a complex swirl of feelings. Come over to Gravity’s site and read Kristen Spina’s most lovely prose.