Weekly Photo Challenge: Pattern

Seeing the light in the pattern

Bricks.

To most, they aren’t very interesting.

They’re just little 4″x8″x2″ blocks of clay used in construction. They’re everywhere.

I didn’t pay any attention to them.

That is, until one September day almost 21 years ago when for a half an hour I stood a foot from a wall and watched my 13 month old be completely mesmerized by bricks.

Yep. While the other kids were on the playground, we were studying a brick wall. It was as if the rest of the world had melted away, for he was engrossed in, and so completely disinterested in, anything but the pattern of the bricks before him.

I looked at my boy with the same intense curiosity he looked at the wall. And as his pudgy little toddler finger tracked along the mortar little did I know I was getting one of my first glimpses into the workings of an autistic brain.

He is keenly sensitive to pattern and I will forever associate pattern with him, and to bricks, and to the day the two of us first took notice of both.

For more Patterns check out Weekly Photo Challenge here

On Finding The Holy Grail of Role Models For My Son With Asperger’s

the Holy Grail

Ask anyone who knew my son when he was little…

What brought more smiles to his face than practically anything else?

HA! That’s so easy…

POKEMON!

Here’s some of those smiles…

1

and…

These are smiles from a boy who knew his share of adversity.

Who knew what it was like to struggle through a day of school.

A boy who more than once tried to run away from school.

A boy who, because he grew up in a label generous society was frequently told he had Asperger’s and Asperger’s meant to him that mom had to go to his school, a lot. Mom had a notebook dedicated just to paperwork and went to meetings, and there were all these people she had to know because of Asperger’s.

Ted knew Mom was often stressed because he had trouble controlling himself at school and she got calls, a lot, because of him, because of Asperger’s. When he got picked up at in the afternoon there would be long conversations about what he did, about why he hit the kid, who had been calling him names, or how he slept in class and how the teachers punished him and he was in trouble once again because of Asperger’s.

He knew that unlike anyone else in his school, because of Asperger’s, he had a paraprofessional, which to him meant he had an adult whose day was dedicated to being with him, doing for him what no other kid apparently needed help with because no other kid had an adult sitting just with them. Not only was this paraprofessional with him, but she also talked to other teachers about him, Special Education teachers which most of the other kids didn’t even know and she talked to mom, a lot. They talked about almost everything he did. Mom would ask questions about what he did, and why he did it.

He knew different schools and classes too because of Asperger’s. One of these classes, in one of the schools, removed him from the general school population. The unseen thing called Asperger’s put him in a class with kids who threw furniture and brought razor blades to school. This room even had a place called an isolation booth in it where kids had to go to “control yourself.” He knew too the police visited this classroom to take home some of his classmates when they couldn’t control themselves.

He knew at times because of Asperger’s he was ostracized. Kids instinctively know which kids are “different.” He was different because none of the other kids had Asperger’s.

In his young mind I imagine there was nothing positive about Asperger’s.

Sure he was smart, and told that when you have Asperger’s you can be super smart. But what does being ahead of your peers on silly things like academic achievement tests mean when you are seven? What does it get you? To Ted, being smart at school meant he made the teacher mad when he worked ahead in his text books. Or, instead of working ahead, if he slept through instruction, he got in trouble for that too. It didn’t matter that he aced the tests. He quickly learned the teachers wanted him to conform more than they wanted him to get A’s. And he knew because of Asperger’s he couldn’t conform. He knew, for him, the game was over a full decade before it really, officially could be.

And the kids, the kids he was told over and over again he should make friends with, who didn’t have Asperger’s, well, when he tried, when he started conversations about stuff he liked such as subatomic particles, well he soon found his fellow first graders laughed at him and called him names and thought he was totally weird because he made up weird stuff.

That was Asperger’s to Ted. He didn’t live in the adult world of outcomes, of potential, of the work towards and hope of a positive prognosis. No. He lived in the very clear, here and now world of childhood and that world told him over and over that having Asperger’s was nothing but negative.

Then, this past weekend, long after the end of Ted’s childhood, I learned something. Something that blew my mind. That made me stop in my tracks. Something that brought perfect order to my universe. To my son’s universe.

Satoshi Tajiri, the creator of Pokemon has Asperger’s.

The man who created Pokemon, the sanctuary, the safe place, my son’s favorite destination – that man has Asperger’s too.

Of course.

The world of Pokemon was Ted’s refuge. It’s where he went, and still goes, because he understands the characters and their actions make sense. He likes it because their intentions are predictable and he can anticipate them and thus participate. Since 1998 he has enjoyed this world, quite honestly more than he enjoys the rest of the world, and doesn’t it make overwhelming sense that he enjoys it because it was created by a mind very much like his own.

Ted admires Pokemon. He respects it. He doesn’t admire and respect many things. He says Pokemon is well designed, well crafted. He told me, in very technical terms why he loves Pokemon and as he did, he glowed. He knew all the aspects of its design. He knew the entire history, the dates of every release and he celebrated that he got to grow up with Pokemon. He was grateful that he was the perfect age of seven when in 1998, Pokemon Blue was first released in the United States, and that he had it, that he still has it. He told me he considers still owning that game as, “a point of pride.”

And although he knew most of Tajiri’s biography – he knew how he collected bugs as a kid and how that interest inspired Pokemon, but what Ted didn’t know, the real kicker of his biography is that Tajiri has Asperger’s. When I told Ted he said, “You just told me something I didn’t know. That could explain a lot.”

And I thought about Teddy, my little boy who loved the world of Pokemon and I wondered about, how while he was growing up, when there was nothing positive, nothing tangible, nothing identifiable about Asperger’s to his young mind, imagine the power six additional words added to the sentence he so often heard, imagine if he had heard,

“Teddy, you have Asperger’s just like the creator of Pokemon!

computer discovery

Teddy taking apart electronics just like Satoshi Tajiri, the creator of Pokemon liked to do.

Life&Ink Celebrates 1000 Ausome Things #Autism Positivity 2013

deaf donald with black

Yup.

This pretty much sums it up.

What “ausomeness” is and what the lessons of nearly 22 years living with someone who is autistic has taught me.

It’s understanding that people can communicate in many different ways, and what they have to say, regardless of the way, is meaningful, significant and absolutely worth hearing.

Deaf Donald by Shel Silverstein 

Inviting the Tiger that is Fear to Tea. The End of Ted’s Medication, Part 2

The Tiger That Came To Tea

What I so vividly remember from the afternoon of June 24, 2004 was Kate, our Nurse Practitioner shaking her head no. She had been doing it since she first looked at Ted’s chart and saw the 200 mg dosage of Zoloft the pediatric neurologist had been prescribing my 12-year-old.

She just kept shaking her head. No words came out of her mouth, but they didn’t need to. Her head shake said it all.

When Kate finally stopped shaking her head and spoke she explained to me that when the dosage of Zoloft was too high the drug can actually enhance the very behaviors we were trying to reduce. Yeah. Enhance. Then she said it, the words I knew were coming because I’d been hearing them for almost nine years…

“So here’s what we are going to do…” Continue reading