Hangin' with Nick

Nick's part of our world now. He's still Nick, and he still has autism--he loves lines, letters, numbers, and hand stims as much as ever. It's not so much that he's changed, but that he is sharing who he is with the rest of us.

He's become social in his own beautiful way. When people he likes come into the house, he'll look them in the eye and say "tickle!" And then they tickle him. No, it's not the neurotypical "hello," but I'd say it's far more cool and interactive.

And he's sharing things with me. He wants me to be part of his experiences. I love it when he takes me by the hand and leads me to whatever is interesting him at the moment, like a ceiling fan. He'll tell me about it in his limited language, "fAn!" with a long, high-pitched "a." It's a conversation, a social interaction, and I love it.

There's so much talk of being cure/anti-cure. One side says we should accept our children for who they are, the other side says we should do all we can to free them from autism. I suppose I found a third space that doesn't fit into that dichotomy. I love my son and embrace all the beauty of who he is, and yet I'm thrilled that he's connecting with the world and will do all I can to help him do it more.

Putting the key in the lock

Our world is based on words. They are the way we share our feelings and fears, our hopes and needs. Whether they are signed, written, or spoken, they are the way we communicate with one another.

But imagine that you never understood that words were communicative. You spent your life around them, and maybe even used them to label things in your environment, but you never understood that they could be used to convey your wants and emotions to others.

Imagine that, and you know what life has been like for Nick.

Nick is almost five years old, yet he'd never made the developmental leap that infants master: understanding that the sounds one makes are a way to influence those in the world around him.

The irony isn't lost on me; here I am, the writing teacher who believes in the ultimate rhetorical power of words to shape and change the world, and my own son is oblivious to the power I preach.

But Nick got it today.

It started on Thursday when Jerrud was working with Nick. Nick usually uses PECS cards to communicate, but when Nick was wanting chips, Jerrud was pushing him to say the word. "Chhhh-ip," he modeled for Nick.

For some reason, Nick decided to go ahead and copy Jerrud. And magically he was rewarded with the chip he wanted and lots of praise.

Nick didn't think that was so bad, so he played along again. And got his chip.

He started putting the pieces together: "I say this group of phonemes, and someone gives me a chip. Cool."

Friday, Saturday, and Sunday we practiced the word "chip." Sometimes I'd manipulate the situation, getting chips and then asking him what he wanted as he drooled over my stash (actually, that's also how I taught him to use his first PEC, which was a chips card). Other times he'd request chips all on his own, bringing me his chips PECS card but saying the word when he made the exchange.

Today, though, Nick learned to transfer the skill he learned with the word chip to other contexts.

First it was "pretzel." But the cutest imaginable version of the word *ever*. It was more like two words, actually: "Pweh. Zil!" After some frustrations, he deftly navigated through the linguistic landscape, saying "chip" when that was what he wanted and "pretzel" when he wanted something different.

Of course, salty snacks make a child thirsty, so how about some juice? I filled his cup with apple juice . . . and he said the word when he wanted Jerrud to give him the cup! Awesome!

So we spent the early afternoon cycling through these three words when I got curious. What else would he say?

I brought in a 16-ounce bottle of Coke, which he loves. I gave him a choice between the apple juice and the Coke. "Nick, what do you want?"

"Co," he answered.

Sweet!

I hunted down a bag of M & Ms, and my child asked for the candies, over and over and over again, by saying "M" (this worked for me; I mean, there's just one "m" on the candy so why should I make him say two of 'em?).

Next I brought him some cookies, and again, success.

Nick has had some language since he was one year old, back when he'd read the letters and numbers off the license plates of cars. He's babbled in his own language, and he's labeled things in his environment as he attends to them. But his words only reflected context. Today, though, my son became a rhetor and learned about audience and purpose. He realized that he could guide his audience (me) to a specific purpose (to get him stuff he wanted).

How many times I have drawn that tired old triangle on the board in my writing classes, telling my students how important it was that their message take into account audience, context, and purpose? I preached it for years . . . but I never really understood its significance until today, when my child finally put all three together and opened a door to a new world.

Winter Break Makes My Brain Hurt

Ahh, winter break, a break from the scholarly life and a chance to kick back a be a mom, and nothing else.

Ow, does it make my brain hurt.

Noah has been asking me questions all week, the kinds of questions that feel a lot more challenging than the ones I got thrown at me during my comprehensive exams. Because at least those questions were limited to a specific field of inquiry. Noah's questions are from all over the place.

Just today he was asking what another word for "superstition" was. It threw me off a bit. I mean, first of all, what eight-year-old child is concerned about synonyms, and why did he need a synonym for that word, anyway? And what would the synonym be?

Tonight we were driving back home from some big excitement--we drove the car through the car wash, and Noah thought it was *just* like a storm--when Noah started asking questions again.

"Mom, how old were you nineteen years ago?"

Oh, frick, I had to count. How old was I now, anyway? Take away ten, then take away nine, and . . . "Seventeen."

"Did you have a boyfriend?"

Hmm, wasn't expecting THAT one. "Yes."

"What was his name? Wayne?"

"No, honey, I didn't even know your daddy then."

"So what was his name?"

Oh, frick. How the heck do I answer this one? It was my senior year of high school and I'd sort of dated several people that year, though it was innocent enough. I began the awful task of counting back. Let's see, I'd broken up with Robert a few days before my seventeenth birthday, so he didn't count, and started dating Joe right before I broke up with Robert (I know, I know, I feel bad about the timing) . . . then I think there was Lee . . . then Joe . . . then Matt and Nicco . . . then Joe . . . then Bill.

Yeah, I wasn't at all ready to explain such teenaged-girl capriciousness to my son, so I picked my two favorites and gave my son their names.

I braced myself for the next question, fearing what he might come up with.

"Did you graduate from high school that year?"

"Yes," I breathed a sigh of relief, happy to have a question about my academic self because that's the realm where I always have the answers.

My Best Christmas Gift

It's Christmas Eve, which means I have yet to open all the packages underneath the tree. I don't know what rests in the boxes and bags, but whatever is there, it can't be better than the gift I already got.

My little boy is celebrating Christmas with me, for the first time.

Nick is almost five, but he's never really celebrated Christmas. Sure, Christmases happened around him, but he never took part in the celebrations. I'd take his hands and make him place ornaments on the tree. I'd take his hands and make him tear wrapping paper off his gifts. I tried to drag him along into the celebration rituals, but he seemed a bit oblivious to it all.

This year, though, Nick is there with us, really there. This Christmas Eve he's done so many of the things that, well, most any kid would do on Christmas.

It started with a present from Grandmother. He looked at it for a bit, and then he did something that any sneaky little kid would try to do--he started to rip it open. Silly, sneaky boy!

After the sun set we took a walk around the neighborhood to view the Christmas lights, and he looked at them in excitement. Before we came into the house, I took him to sit in front of the blinking snowflakes in our own yard. "Look," I said, "look." And he did. He looked and laughed and enjoyed.

We came into the house and I plugged in a string of lights that drape our living room wall. Nick's eyes lit up. "Look," he said, "look."

After that we brought out a cake. It's a ritual that Noah insists we keep--we have a birthday celebration for Jesus since, after all, Christmas is Jesus' birthday. We sang "Happy Birthday" and when the song ended Nick spoke some words, slowly, laboredly, as if it took a lot of thought to get them out. "Happy . . . birthday," he said.

When the birthday cake plates were finally cleared from the table, Noah decided he wanted to hang a few more Christmas ornaments. Noah pulled out five glittery silver balls and started to hang them. Nick came over and, without anyone's interference he picked up one of the balls and carefully hung it on a tree branch, then reached down to grab another and carefully hung it on a branch.

I started to cry.

The best Christmas gift isn't something that has wrapping paper or bows; it is being able to share Christmas--really share it--with both of my boys.

Sticks and Stones

Words are nothing, these tiny units of sound. Except, they are everything. They reflect and create our realities. They include and exclude people.

Some have said that disability rights is the last great civil rights battle to be waged. Over the decades we've seen women and people of color and people of a variety of sexual orientations make progress in the civil rights arena. Those gains have been reflected in the language our culture deems acceptable. In a staff meeting, it would not be acceptable to call a female colleague a bitch, or refer to an African American colleague with the n-word, or to call a gay colleague a fag. Yes, such horrible language can still be heard behind closed doors--a sign that these groups are still marginalized and that we need to continue to work for equality--but in our public personas, we know such language is not okay and so we don't use it.

I wish that we had such critical awareness of the language we use to address people with disabilities. Because I have been in staff meetings where colleagues used the word 'retards,' and no one seems to cringe the way they would have if someone had used a racialized term or a gendered term.

My sons have autism, something you certainly know if you've read this blog even once. They are not typical, and yet I do not see them as disabled. They are both incredibly abled, each in his own way. Nick is a gifted builder and mathematician. Noah is a gifted linguist and scientist. They are incredibly abled.

And yet they are different. The icon of the autism community has been the puzzle piece, as if people with autism are a bunch of puzzle pieces that need to be put back together (or fixed) in order for them to make sense. My sons aren't puzzles; they are complete and full human beings . . . the rest of the world just, far too often, fails to stop a moment to look at them and see who they truly are.

So often others focus so much on how different my sons are that they fail to see how similar they are to the rest of us--they are human beings with emotions, desires, and hurts.

Perhaps it's that difficulty of seeing the similarities between "us" and "them" that makes it okay in our culture to use disparaging language to describe people who are differently abled. I mean, "we" don't see "them" as like "us," as human, so we can't fathom that "they" would have emotions and desires and hurts. Sticks and stones can't hurt them.

It's not just college staff meetings where that language pops up. It pops up in elementary schools, too. There's a girl at Noah's school who has picked up on his differences and calls him "freak."

Think about that word. Does it shock you? Unnerve you? Maybe a little?

But not as much as if someone had called him the n-word, huh.

We still have a cultural tolerance for disparaging labels applied to people who are differently abled.

Here's the thing, though. The words hurt. Even if they are culturally acceptable, they still make my son cry. They reflect and create our realities, making a world that makes it okay to categorize others. They include and exclude people, cementing the categories of "us" and "them." They focus on what makes someone different rather than the so many things we all have in common.

We need to be conscious of our language. Disparaging language is not okay. And I'll fight to make sure that someday words like 'retard' and 'freak' will someday become as unacceptable as racial slurs.

Yay for tattling!!

Tattling is typically one of the most annoying of children's behaviors. Ugh. Who wants to hear, "Mommy, so-and-so did such-and-such!!!" over and over again?

Me, apparently.

Today Nick and Noah were in my room. Nick loves my room--he's always jumping on my bed, snuggling in my blankets, or harassing the cat who co-inhabits the room with me. Noah finds the room less thrilling . . . except for when his little brother is in there, for all big brothers like to taunt their little brothers every now and then.

I heard crying and did the mommy-sprint to the room. Noah was on the floor; Nick was on the bed, holding his hand and crying. Usually I'd ask Noah what happened, since Nick is pretty much non-verbal. But Nick came over to me, crying still. He lifted his hand up to me and said, "Noah B."

Nick's first time narcing on his brother. I love it :)

From "phew!" to more work

My project this fall has been to get Noah ALTCS approved (which would mean that Noah would get federal dollars for autism services). Sure, I've been through the ALTCS hoops with one child already, but it was so much more of a pain this time around, for two reasons 1) it's budget crisis time, so no one wants to approve new spending, and 2) Noah is no longer preschool-aged, which means the approval criteria he has to meet is much more strict.

It's been arduous trying to get him approved. SO much paperwork to compile. Oh, and the school wasn't incredibly helpful, making me wait for the new evals and IEP that the ALTCS worker kept nagging me for.

But it all paid off! Noah was approved for ALTCS this week! Phew.

Except . . . I talked to Nick and Noah's AWESOME DDD case manager Friday and realized that the approval just means it's time to work on even more stuff. We need to try to get Noah approved for specific hours for services now, which means a new ISP meeting and a habilitation plan submitted to tech review and all sorts of other goodies . . .

The work is so worth it, though. Did you know that the cost of caring for someone with autism over a lifetime is about $3.2 million dollars, according to the Harvard School of Public Health? Holy expensive! Noah's ALTCS approval means that we'll get financial help with his medical and therapy costs, which is miraculous. Thank freakin' God.