Friday, September 07, 2012

Because Stimey Rocks My World.

Watch this awesome woman talk about her son, Jack, and how he is just as awesome as he is.

"Not Even Wrong"

If we all work together, I bet we can make a world like this. Or at least a nice comfy corner of it. For Jack. For Joey. For Sam, and Quinn, and Andy. And for your loved one, too.

Thursday, September 06, 2012

Walking the Tightrope

Middle school is coming.

Joey started the fifth grade this year. He's ten years old. We have long been in the process of preparing him for the next step, the dreaded Middle School, where kids get nasty, life gets harder, and social circles dominate the school life. As such, my ears have been pricked up more than usual for stories and information about autistic and other disabled pre-teens and teenagers, especially how they are spoken of and perceived. Fortunately, I am not reliant on mass media, or I'd be running screaming into the night.

Uneven development is often mistaken for far greater disability than it actually is. When I see masses of comments about autistic people "with the mind of a 5-year-old," I worry- there are far too many of those comments. Yes, intellectual disabilities do appear in autistic people, just as they appear in people generally. On the other hand, I still have a book I received from the doctor's office when Joey was diagnosed, saying that 75% of autistic kids are "mentally retarded." I realize now that this is how we feel about people who communicate differently and develop differently- whether they have actual intellectual challenges or not.

I got Joey's SOL* scores yesterday. I don't understand them at all. We are talking about a child who, at the start of the third grade, passed the end-of-year tests in math for fourth and fifth grade, and yet barely passed the math SOL. His reading score... the child who can read anything... "Fail- below basic"(yes, that's very bad). History? Fail. He can recite all the facts about Jamestowne at me, but can't pass a test on it. And why?

Well, since understanding questions and how to answer questions is one of his major issues, that could certainly explain it. His differences in communication and language use make learning to take tests a serious problem. When you have a variety of ways to "show what you know," you have more opportunities to prove you understand material and can apply it. When there is only one way- and one you find particularly difficult- then what you show is that you are not very good at that testing format. (Yet his school's funding and his teacher's pay are both tied to that testing format... something is very wrong here.)

Joey stands out socially, too. Everyone knows Joey. He's a cheerful, friendly person who likes to connect with people.** We have already seen both the good and the bad that goes with his semi-celebrity at school. Most of the kids know him, and he is very likable (hard not to like someone who greets you with cheerful smiles and fusses over you like a mother hen if you get hurt). There are the bad apples who think he is funny (not in the good way) and taunt him, teach him foul language, and try to get him to exhibit his deficits for their own sick amusement. My job is to teach him how to identify these people, avoid them, and manage himself when they try to bully him.

But there is something more, harder to lay your finger on. He is not intellectually challenged, but his emotional development is definitely different. Other ten-year-olds run around playing active, dynamic pretend play- with boys, that tends to involve guns and bad guys. Joey's idea of a "bad guy" is a Thwomp. Ten-year-olds around here are into  Transformers and Star Wars and fancy video games. Joey is in Mario Brothers and Angry Birds, but more in the way a younger child might display such a liking- imitation, echolalia, and obsession. For example, most ten-year-olds do not wander about the house and the grocery store in a full Luigi costume. Just saying.

Most ten-year-olds are also not interested in hugging their teacher. Or quoting Little Bear. Or actively giggling hours upon hours about Shaun the Sheep. Most ten-year-olds read chapter books, like The Wizard of Oz or How to Eat Fried Worms. Joey isn't interested in all those words at once (I still think if I put one sentence per page, he's read them fine). His friends are noticing. The world is noticing.

We are entering an age when Joey's volume control issues and repeating are getting more stares than knowing smiles. He's grown out of many of the "oh, well, my little one does that, too" comments, because Their ten-year-old stopped doing these things when they were six. Why does it bother people to have a ten-year-old in the grocery store telling his mother about a Mario Brothers Level by reciting it step-by-step? What was cute when he was four is no longer "cute."

But it is who he is. We have come to the point of the tight-rope walk, balancing social acceptance with comfort. We all have to wear fancy itchy clothes sometimes, because it is expected that we not show up at a formal occasion in a t-shirt and jeans. Yet if the clothes are too itchy, the occasion becomes not just a chore, but torture. How to balance comfort with expectations? How do we balance out teaching Joey what is socially appropriate without squashing who he is?

It is a knife's edge in parenting, and in growing up. Andy seems well-balanced on it. For example, he loves Timmy Time, a preschooler show. He finds it funny and comforting. But when choosing items to take to school for show-and-tell, he chose to leave his Timmy doll at home, telling me he knew quite well it was a "baby show" and that it might be embarrassing to talk about it in front of his friends. Then he sat down and gladly watched it. Hey, I still love my Disney movies, and I'm 40. But I also know not to dress up in a blue Cinderella dress and dance around the Walmart singing the Work Song at the top of my lungs.

If I think this is a narrow path for me to tread, I can't imagine the anxiety it may be causing Joey, or about to cause Joey... if I let it. He is the real tightrope walker, I'm just down at the bottom holding the net.

And my breath.

*SOLs are "Standards of Learning", the standardized testing for our state.
**For folks new to the blog, yes, you read that correctly. He is autistic, and likes to connect with people. He always has. And before I get a mountain of "he must not be autistic!" email and comments, I recommend reading our blog, and allowing me a pre-emptive "bugger off" to those comments and emails. Joey is autistic. If this statement bothered you, you need more exposure to and understanding of autism.