Monday, March 23, 2009

I'm not a warrior

I'm not a warrior. I'm not battling anything.

(Well, sometimes misperceptions. Sometimes my own exhaustion.)

There's nothing to cure. There's no one who needs to be recovered.

(My son isn't lost.)

That doesn't mean there isn't a lot of awfully hard work to do:

Building up the skills that don't come naturally.

Weaving a safe cocoon and unraveling it bit by bit, sometimes before we feel ready.

Trying each day to keep the scales tipping towards joy rather than towards frustration.

Finding the teachers and others who can help him find his footing in the world.

And that doesn't mean that I, like every parent, don't wish from time to time that my child was different in some ways.

(Like when he's wide awake between 2 and 5 in the morning.)

But this is who we are. This is our way of being in the world. And I'm not at war.

Thursday, March 12, 2009

Tilden School to stay open

Tilden exterior.JPG

Several weeks ago, I told you about Ben's school, Tilden Elementary, and how the school district wanted to close it next year and relocate the students and teachers to several other schools.

Apparently, having too many special needs students at a school violates Federal Disabilities Law. This seems so strange to me.

I understand that the law is intended to prevent students with disabilities from being hidden away and isolated from typical peers. That's a good thing.

But the students at Tilden are anything BUT hidden away. All kids at Tilden - whether they are general ed or special ed - are just that: students. There is a focus on difference rather than disability and that means that every child is seen as being on a continuum of learning needs. Whether he or she has an IEP or not.

Isn't this the ideal? Shouldn't this be the model?

Integration should not be measured in ratios of "how many of these and how many of those."

Integration is about culture. And while the school district should and must examine how to balance special ed and general ed in accordance with the Federal Laws, it's not right to destroy a real culture of integration in the process.

A culture that does exactly what that Fedral Law was designed to promote: maximize success for ALL students.

And this is what I had the opportunity to say at the Oakland Unified School Board meeting last night.

Dozens of us: parents, teachers, children and community members stood up for Tilden and asked the school board to postpone the closing and relocation of Tilden until the district could implement a better planning process that includes teachers and families.

It was inspiring to hear so many people spoke passionately about the wonderful culture of this school and hear what Tilden has meant to them.

The school board heard us. They voted unanimously to postpone the closing of Tilden for one year.

As I said in my previous post, since Ben's IEP recommends a full-inclusion program next year, we won't be staying at Tilden. This is only because Tilden does not have any classrooms that are technically inclusion classrooms, having almost exclusively general ed students.

However, I hope to continue to work with the parent organization to get the word out about Tilden, increase general education enrollments and hopefully show the school board that Tilden's model is viable.

It needs to be there for the families who come after us. For the shell-shocked, post-diagnosis, worried families who have just been told their three year old is autistic, that he will be in special education and oh, by the way, that he will ride on a bus. By himself.

Those families need a safe, welcoming place with loving teachers to know that it's going to be okay. More than okay. That it's going to be amazing. Because that's what Tilden is. Amazing.

tilden sign.JPG

Monday, March 9, 2009

Train Story

Here's a blogging tip: Never write in a public forum that your child is no longer doing something, especially with an air of celebration. He will immediately start doing it again with a vengeance.

I had written a few weeks ago that Ben was no longer playing with trains obsessively, but now they are back, and it seems that every room in the house has either train tracks or train catalogs all over the floor.

Ben studies the Thomas the Tank Engine catalogs night and day as if he's doing doctoral research. He takes them everywhere. This morning, he missed spitting his toothpaste in the sink because he wouldn't turn his head away from his catalog.

He plans his expanding empire, telling us, "I wish I had the Mountain Bridge. I wish I had an Action Canyon Adventure Set. I wish I had Toby's Windmill." Or suggests, "Hey, I have an idea! We can go to Target today and bring home a new engine!"

He can occupy himself for such long stretches at a time that I worry sometimes that I'm not engaging him, forcing him to interact, doing Floortime stuff.

But my gut tells me that, since he's in a social setting for six or more hours a day, he deserves a break. I want home to be the place where it's safe for him to disappear into his trains (or whatever special interests he develops) when he needs to.

It used to be that Ben would recite Thomas the Tank Engine stories while we was lining his engines up or pushing them around on the tracks or stacking them into odd configurations only understood by him. His verbal and kinesthetic activities seemed unrelated except in their theme.

But now he plays with his trains, well, appropriately.

By appropriately I mean that he uses them for bona-fide imaginative play: acting out stories that he makes up himself. While he still peppers his stories with bits and pieces of memorized scripts, his material is essentially his own creation. Sometimes this original storytelling goes on for nearly an hour without interruption.

I've been trying to transcribe a sample of his stories for months, but when I asking him if I can, he says "no" or when I sneak up to him with my computer - court reporter style - he stops self-consciously.

A couple of weeks ago, I sat down quietly with my laptop and started to transcribe his story. This time he ignored me.

After awhile, he looked over my shoulder and I explained what I was doing. He silently read the what I had typed and I could sense the lightbulb going off.

He went back to the tracks and continued the story for a few lines, then looked over my shoulder again to check the accuracy of my transcription. Satisfied, he continued, checking again after a few more lines. When I asked him to repeat a line that I didn't quite get, he obliged. This continued until he ceremoniously announced, "The End."

Here's a small excerpt of the much longer story:

It was a beautiful day on the Island of Sodor. All the engines were working hard, pushing and pulling trucks up and down the line. A new engine had arrived on the Island of Sodor.

"Wow," said Thomas. "I bet he can pull a heavy load."

"Yup," said James. "He’s strong and he’s fast. He can pull a heavy load all the time."

"Well, sort of. I’m not sure," said Thomas.

"Excuse me now, I must get my cars," said Henry.

"These are my cars."

"Wait!" cried Thomas. He coupled up to his coaches and went along, but Henry kept going.

When they reached the forest, they saw the old bump, then stopped. Henry’s truck had bumped him, reeling him toward the old bump.

"Look out," cried Henry's driver. Henry was sunk.

The fat controller came to see Henry.

"You are a very naughty engine."

"I do sir. I can’t sir."

Then Edward put the tracks back on to the rails. "Thanks, Edward," said Henry.

The End.