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.

Nick's EEG

Something wasn't right with Nick's brain. As a mom, I knew that. And so, a year and a half ago, after Nick had an episode where he zoned out and lost all color, I took him to our primary care physician . . . who told me it was no big deal. And a few months ago, when he slept for seventeen hours, I took him to the developmental pediatrician . . . who told me not to bother going to a neurologist.

But I knew they were stupid, so I decided to drag Nick to the neuro anyway.

Last Friday he had an EEG. It was a special kind of hell. His arms were pinned to his sides, and he was wrapped up tightly so that he could not free his limbs to fight. Then the long, long process of prepping for the EEG began. The tech took tons of head measurements, which Nick so did not love keeping his head still for, then he put goo in the places he'd marked with a Sharpie while doing his measurements, and then he finally put the electrodes on. Nick screamed a deafening scream the entire time, and I held him tightly to keep him still enough for all the things the tech had to do.

He passed out in exhaustion when we got home--poor little dude.

Today we got the results of the EEG: "moderately abnormal." So, yes, there is definitely something going on in my little man's brain. I'm excited to know it for certain, to have medical evidence back up my hunch. I'm also glad to know that I didn't torture my child for nothing.

So now we'll see the neuro again, and I'll learn all about a new field of medicine. I swear I might has well as gone to med school for all I've learned through my boys' challenges :)

Immense Contentment

Yes, several of you have reminded me that I've been MIA. I blame all the comps miserableness. But you all will be happy to know that I have completed my evil written exams. Thank freakin' Demeter.

Being done with my written exams is freeing me to do more important things. Like have drink with friends. Like text message until midnight. Like hang with my awesome dudes.

Speaking of hanging with an awesome dude, it's what I'm doing right now. Noah and I just finished playing pool, and we both sucked equally. I couldn't remember most of the rules so we made things up as we went along. Now he's playing his favorite video game--The Fast and the Furious--as I sit here and watch him play. Awesomeness.

It's the simple things like playing a game of pool or watching Noah dance to the music coming from the Dance, Dance Revolution game or breathing in the smell of a campfire that make me feel this immensity of contentment lately, make me feel thankful.

That's all.

Sometimes the universe gives you just what you need

It was a melancholy sort of day after a melancholy sort of night that gave me, perhaps, about an hour's rest. I just wanted to curl up into a ball and sleep--deeply--for a few days, but comps were just three days away and I didn't have the luxury of delicious sleep. And so I took a shower, threw on some clothes, brushed a bit of lipstick on my lips and dragged a comb through my still-wet hair before heading out the door.

I went to a coffee shop across the street from my old high school (even though I've been back in this town for four years it still feels creepy and weird to go anywhere near that building) and I read and wrote and prepped, trying to make sure I'd sound smart when I answered a question about ASD pedagogy during my exams. I worked until I got too fidgety to stay there any longer--grad school on-set ADHD--and I went over to the Starbucks in Barnes and Noble for round two.

Only six tables have access to an outlet, and I took a table that would allow me to watch all six--I needed to pounce as soon as a spot became available because someone else was sure to try to steal it. I read and wrote and prepped, trying to make sure I'd sound smart when I answered a question about rhetorical listening as a means of bringing Osteen's "empathetic scholarship" to the composition classroom. The battery indicator fell lower and lower, and just as the yellow caution sign popped up I was wrestling with Lott's claim that bringing disability into the classroom is imperative to reflecting democratic ideals, and realizing that to make Lott work for my argument that I was going to have to bring in Isocrates or some similar dead rhetorician, and wondering if there was something, anything, in the classical rhetoric notes Amanda gave me that would help me with my dead rhetorician weakness . . .

Yeah, my battery decided it was done.

I wandered around a bit, trying to see if there was somewhere else in the store where I could plug in my laptop. I found nothing. I went outside--yes, there's seating out there; there certainly would be an outlet.

No.

I felt a little lost for a moment--where was I going to work? Ugh. I turned around and started walking toward my car.

"Hey beautiful lady," a kindly older man said, "Looking good today." The inflection of the words made them kind rather than creepy.

I turned around, smiled, and said thank you. And, I don't know, something about a stranger being kind made the melancholiness better.

Excuse me; do these comps make my ass look big?

My first comprehensive exam is in one week. And I've been prepping lots.

It's kind of like the intense zone that I get into when I writing something that I think is smart (and may or may not realize later wasn't as smart as I thought it was). I get in the zone, and I can sit and work for hours as all the neurotransmitters fire like I just took speed or something. I sit and write and munch incessantly. Comps prep is like that, but for way longer than my typical two-day writing bursts.

I pulled out the Wii Fit two days ago, and it reminded me that it had been two weeks since I'd visited. Yes, thank you for chastising me, you stupid animated balance board. Then it told me that I'd gained five pounds.

Yay for comps.

Deceitful Nostalgia

The semester was going to start itself up again, and so I spent a summer day on campus, handling the minutia of academia. I stopped off at the new Writing Center space that would be my home, navigating my way through the labyrinth of shiny glass walls and the smells of new furniture.

And then I took a walk four buildings down to my old home, the former space of our campus Writing Center. The space is housed in Bear Down Gymnasium, a building with a rich historical tradition. Listed on the National Register of Historic Places, Bear Down is one of the oldest buildings on campus and bears (haha, no pun intended) the name of the university's athletic slogan. As the story goes, in 1926 John "Button" Salmon, starting quarterback and student body president, was in a fatal car accident. Before he gave up the ghost, he had one last message for his team mates: "Tell them . . . tell the team to bear down." Thus a quarterback died and a legend was born.

Then, in the 80s, the gym was used in Revenge of the Nerds. That gym the nerd guys are sleeping in when they have nowhere to live? Bear Down.

So as I stepped up to the door and slid my key into the hole, I felt a bit sad to be letting this place go. It wasn't just that it was a legendary space; it was a home, the place where I had to kick tutors out of my desk so that I could have somewhere to sit, the place where I watched tutors catch mice with plastic cups.

I fought with the knob, and the door finally opened. I was greeted by a burning stench of mouse urine and rotting mouse carcass, a smell so insipid that it burned my nose, burned my throat. I went over to my desk to round up a few items that hadn't made the move to the new location yet, and I saw that the filing cabinet next to my desk was littered with mouse feces. I set about gathering my things--quickly--and felt the sweat beginning to roll off of my skin in the hotly humid room, air conditioned by an archaic system installed probably half a century ago.

Then I left. Quickly.

I wonder how many things in life are like that old, mouse-infested Writing Center. They are the things we've known, and so floods of nostalgia make us feel sad about leaving them. How many relationships and jobs do we hold on to because they are what we've known and thus fear to give up? How many of those things would we find to be mouse dens if we only took the time to step away from them for a bit?

I haven't been back since that day. I'm content to leave familiarity behind . . . and make a new home.

No Dogs Allowed

When I was a kid, the movie Snoopy Come Home stuck with me, haunted me. Snoopy tries to visit the beach, go to the library, and ride on a train, only to be taunted by ominous "no dogs allowed" signs. He tries to visit a sick little girl named Lila in the hospital, who needs his company to feel better, but again those "no dogs allowed" signs thwart Snoopy.

All he wants to do is be with a little girl who needs his love, and a heartless institution refuses to see the healing he could bring.

A news story this week brought back all the memories of that childhood trauma about dogs not being allowed to help a sick child, but this time the story was real, not fiction.

Most of you know about my love affair with autism service dogs. Service dogs help children with autism make emotional connections, help soothe them as they negotiate the stressful world of neurotypicals, prevent them from running into a street, and act as a retriever when a child with autism wanders away (as they are apt to do). Organizations like Dogwish help families raise money for autism service dogs. I sooo wanna get one of those dogs for Nick.

But if I do get a dog for Nick, it is questionable whether or not his school would allow his canine companion on campus.

Six-year-old Kaleb Drew's family is fighting for Kaleb's right to bring his service dog to school. The school cites issues such as other students' pet allergies in their argument against Kaleb's yellow Lab, Chewey. And yet, according to Alejandro Miyar from the Department of Justice, under the Americans with Disabilities Act, "a person with autism would be considered a person with a disability in nearly all cases, and a service animal is any guide dog, signal dog or other animal individually trained to provide assistance to someone with a disability." And thus you would think that Kaleb would be allowed to bring his dog to school. The Villa Grove School District in Illinois doesn't see it that way.

So it goes on to a judge to decide in November. My only hope is that the courts will see the healing potential of service dogs and force schools to pull up their "no dogs allowed" signs.

Snoopy needs to be allowed in the building.

Crying over class postings

It's the day we've been waiting for: class postings at Noah's elementary school. Yes, school starts Thursday, and they only posted classes and supply lists today, but that's how it works at his school.

I went to campus do to some course-prepping of my own, then I stopped by the elementary school on my way home to find out who Noah's teacher would be this year. I found his teacher and wrote down a name I didn't recognize--it looks like his teacher is new to the school.

And then, I don't know why, I glanced across all the other listings. Second grade, first grade, kindergarten . . . and then, right next to kindergarten, a paper labeled "multicategorical" with the names of eight children.

I cried.

***********

Nick's ISP meeting was a couple weeks ago, and as I sat with his DDD case manager I saw all the goals I'd laid out for my son over the years. I still remember sitting down with John as Nick was leaving early intervention to chart out those goals for the first time. The very first one that I asked John to write down was that I wanted to see Nick mainstreamed (possibly with an aide) by the time he reached elementary school. Each year, every annual ISP meeting, I see that goal again. And each time I see it, I realize it's less and less feasible.

Nick will start kindergarten next year. He has maybe eighty words, but none of them are really conversational. Well, that is unless the conversation is about trains, then "stop, train, stop," "Percy slow down," "Thomas, Toby, James, Edward, Gordon, Percy" (in that exact order, always) are conversational. He's beautiful and intelligent and sweet, but he's nowhere near ready for a neurotypical classroom. Nowhere near ready.

And so next year I'll see Nick's name listed under "multicategorical" when I drive up to the school to see the boys' placements for the year. And I'm okay with that, okay with who he is . . . I'm just a bit sad as I mourn the dream I had for my son.

But dreams can always be replaced with new dreams, which is the beautiful thing. And Nick, he's utterly irreplaceable, which is the other beautiful thing.

Ooops

I accidently broke the comment function awhile back, but I think I fixed it now! Feel free to comment away!

The Power of Teachers

I have this ritual at the end of a school year. I go through all the school stuff Noah's saved up throughout the year and send some to the recycle bin, and save some for a special box that has a slot for keepsakes from each school year.

I'm running a bit behind (the new school year is two weeks away), but I got to his second-grade things this week. And I found whale mobiles and dinosaur paintings and manduka lifecycles. I also found a pattern of descent.

Noah is smarter than any of you. Don't feel bad; he's smarter than me, too.

He's simply brilliant.

He also happens to have disabilities.

In first grade, Noah had an awesome teacher. She knew how to support him; she knew how to work with his abilities to help him thrive. And she genuinely cared about him.

But in second grade, Noah had a different sort of teacher. The kind that wouldn't let him use the bathroom when he asked, leaving him to sit half the day in urine-soaked clothes. Yeah, I don't have enough words to say about her . . . so I won't.

I looked through Noah's work of a year and saw a pattern. He started out with stellar grades. 100%. 98%. 107%. As the year went on, though, those scores dropped. 65% became far more common than 107%.

She'd defeated him.

I look at the advent of the new school year with trepidation. What kind of teacher will Noah draw? Will we be lucky and get someone like his first-grade teacher, or will he be cursed with someone like his second grade teacher? And if he does get someone like his second-grade teacher again, will he ever be able to recover from that devastation?

Writing a love letter in a coffee shop

I’d claimed the perfect table at Starbucks, right next to a column that both blocked me from visual distractions and gave me access to that most prized of things—an outlet. I plugged my computer in, swallowed some caffeine, and set to work on my soul-sucking IRB paperwork.

That’s when he came over, a man with glasses and thinning brown hair. He pulled two chairs up to my table: one to set his laptop bag on, the other to set himself on.

WTF.

I looked around and the tables were pretty full. I think they all were occupied save two, and those were cluttered with magazines and newspapers. Okay, I supposed that I could share my table. But, dude, he could have at least asked before claiming the space.

When he ambled around, trying to find a place to plug in his i-pod, I noticed there was something not so typical about him. He seemed perplexed when he finally spotted the outlet, only to find that I and a seventy-something year old man in Nikes had swiped it already. So he ambled back to our table and sat down.

“I’ve never connected to the Internet from here before,” he said after taking a sip of his Strawberries and Creme Frappucino.

“Oh, you haven’t?” I said as an acknowledgement. And I turned back to my soul-sucking IRB paperwork. I had to get it done, you know. It’s why I left the house after all . . . and I’d told myself I wouldn’t go home until the soul-sucking paperwork was done.

But then he started asking me spelling questions. The first word was “tournament.” I whipped out the spelling because that’s what English teachers are supposed to do—it’s the parlor trick the rest of the world expects of us. Except, I got two letters in and he stopped me. I was going too fast.

So I slowed down. One very slow letter at a time. And I realized that there really was something not so typical about him.

I had the soul-sucking IRB paperwork to complete. I needed to get it done. But . . .

I got pulled into a conversation with Matt. He was writing a letter to his girlfriend, Tanya, who lives in Yuma. She is the first girlfriend he’s ever had and he just met her at Camp Tatiyee (it was the first time she’d ever gone). There is an age difference—he graduated from high school in 1999 and she graduated in 2003—but he didn’t care that she was an older woman. Yes, I know those numbers don’t make sense, but since she is taller than he is he knows she's older. What matters is that he was twenty-eight and in love for the first time.

He asked me for help composing his letter, and this is what he had at the end:

Dear Tanya I wish u were here in Tucson Arizona. I’m gonna see u at the basketball tournament in Mesa. Can’t wait to see u again at the camp next year. I had fun with u at the dance and the go-carts and the fishing. I love u. I want to see High School Musical and Twilight with u. Will u marry me.

I’ve spent over a decade tutoring writers, helping them find a way to convey their messages to their audiences. But sitting with Matt in Starbucks, helping him write a letter to the woman he loves, was the most rewarding experience I’ve ever had with a writer.

Yeah, f*** the IRB paperwork.

Kitty White

I spend most of my moments keenly aware of how lucky we are. I’m reminded time and time again that things could be a lot worse for Nick. He could have violent tantrums multiple times a day. He could pound his head against the wall just to stim on the blood pouring from his forehead. I know that things could be a lot worse.

But lately I've been watching some things unravel for my little boy. When we started seriously implementing biomedical interventions in December, Nick made tons of progress. Tons. His eye contact improved, his stims decreased, his sleep patterns normalized, and his chronic diahhrea healed. And then it seemed the progress decided to back pedal. Nick's stims are steadily increasing again (so much so that I lovingly gave him the nickname of Super Stim). His sleep patterns . . . well, I guess I can't use the word "patterns" because there is no pattern at all anymore--he's as likely to be awake at 4 AM as 4 PM. His stomach--that's the worst part. The chronic diahhrea has returned; he must feel miserable.

Last night I was tucking him in for about the tenth time because he just couldn't get settled enough to fall asleep. He'd look at a book, then stim on his hands (I finally figured out that he's imitating train signals with his arms--I think that's kinda cool, actually), then he'd get up out of his bed. I finally pulled out the lotion and rubbed his feet while he stimmed, giving him the deep pressure he loves. I rubbed and rubbed . . . and cried. I was doing everything I knew how to do to make him feel better--all the therapies, all the doctors, all the vitamins. I felt like there had to be some way to make him feel better, because I had seen his health improve so much just a few months ago, but I had no clue what it was. And so just I rubbed my son's feet and talked to him.

"Mommy loves you so much, Nick."

"I miss you."

Nick was right there next to me, his growing feet in my hands, but I still missed him. I missed hearing him tell me about his day. I missed hearing him tell me about the thing going through his head that made him laugh so hard. I missed hearing him share his hurts with me so that I could comfort him. And just because I've never actually heard him say any of those things doesn't make the missing any less real.

I wiped a tear and started rubbing the lotion on his hands, wrists, and arms. And he started one of his verbal stims, one that I'd heard before. "Ki-dee-why," he said. Time and again.

But here's the thing: his pronunciation got clearer each time. It began to sound like "Kitty Why." And then . . . then I heard it.

"Kitty White. Kitty White."

I said it back to him and he smiled that content Nick smile that creeps across his face when he realizes someone gets him. "Kitty White," he said, eyes locked onto my face, and I said the phrase back to him.

Then I ran out of the room. To find his Kitty White.

I scooped Mitty up from her peaceful sleep and plopped her down on Nick's bed. "Kitty White," he said and laughed. "Meaaaaa-ow!"

I left Nick with his Kitty White . . . and, miracle of miracles, the restless boy found his sleep.

That wise little boy. Nick had done more than say "Kitty White." He'd answered me. He let me into that world that I'd been missing, told me that he'd been laying there thinking about his cat. That calm little smile that had crept across his lips winked at me. "See, Mom. I'm right here," it said--nothing to miss.

Repeated messages

Here are some of the things I've been hearing lately:

"I haven't seen you in so long!"

"I've missed you."

"It's been a year since we've hung out."

Add any variation you like to that, and I've probably heard it recently.

I guess that work and autism have sort of overtaken me.

I love my work. I love my boys and all of who they are. But I love my friends too. I miss them.

(Denise puts aside blogging to call a friend.)

This is autism too

Our culture overflows with autism stereotypes. Auties are these people with amazing mathematical abilities but who are for the most part emotionally blank (well, except for when it comes to the occassional feeling of fear). Just think Rainman or that kid in Mercury Rising. Brilliant, yes, but neither ever smiled. Even representations of high-functioning Aspies are narrow and stereotypical. There's Jerry on Boston Legal--you know, the guy who barks and does weird things with his hands but never smiles. Then there was Grey's Anatomy's attempt at bringing Asperger's to the small screen. As Dr. Virginia Dixon, Mary McDonnell embodied just about every autism stereotype for three episodes. And, of course, she never smiled.

I remember going to see The Black Balloon a few months ago with some friends and being in awe as I watched it. There was someone with autism. And there was someone who laughed and smiled and enjoyed life (and yes, he had his share of "autistic" behaviors too). It was the first time I'd ever seen a representation of autism on the screen and saw even the slightest traces of Nick.

Our culture seems to enjoy focusing on the dark, "freakish" aspects of autism, highlighting the car accident so that Americans will slow down to stare. Lord, you only need to take a look at that Autism Everyday film that Rochelle pointed out (and that I got so flippin' angry about). Trantrums and freakish behavior--yep, that's how autism is rhetorically constructed.

Granted, yes, people on the spectrum may have tantrums and may do things that are not socially acceptable. But, along with that, there is the beauty and awe . . . the awetism.

Yesterday we celebrated the 4th with a little backyard barbeque. As the burgers were grilling, Nick climbed up on this little ladder we have in the yard . . . it was once a pool ladder, and Noah was so taken by it that I spent $5 on it at a neighbor's yard sale. Nick stood on the top and looked up at the sky. He laughed and laughed and laughed at the clouds and the trees. His joy is the purest, truest joy I've ever seen . . . so beautiful. How often do the rest of us stop to look at the beauty of the sky? How often do we drink in that joy so deeply that we bubble with laugher for several minutes? Not enough . . . not even close to enough.

When darkness came we went to watch the fireworks with friends. Nick watched the light show, reaching for the sky and saying "oh-fie-y, oh-fie-y." And then we braved the traffic, joining the host of others trying to cram their cars onto the freeway. Most of us respond to traffic jams less than positively . . . but Nick's beautiful laughter returned as we sat in the line of cars. He was looking at the trees on the side of the road. "Twee, twee," he'd say between giggles.

So beautiful that my eyes fill with tears thinking about it now. That's awetism.

A Land Flowing with Milk and Honey

I've been dreaming about the job market, about shopping myself around and finally landing that tenure-track job at the PERFECT place. In the shower, daydreaming about it. At my desk, daydreaming about it. At the park with the boys, daydreaming about it.

But my daydreams aren't rooted in comps doldrums, as you might think. No, they're rooted in the Promised Lands I've been hearing so much about, these magical places that actually have manna from heaven everywhere you step. STs and OTs and SI therapists and developmental specialists everywhere you go.

Autism Heaven on Earth.

Lately the Holy Land that has most caught my attention is Dallas/Ft. Worth. There are maybe three SI therapists in all of southern Arizona. But just one office in the Dallas area has double that. Wow . . . can you imagine making an appointment without sitting on a waiting list for 6-9 months? I can almost taste the manna!

And so while my mind should be focused on other things, I find it drifting to all the professional contacts I have in DFW, all the job opportunities there . . .

Don't worry. Next week I'll hear about all the amazing specialists in Atlanta or some other place and be daydreaming anew.

Dx soup

Here's the funny thing about ASDs--no matter how much you know, there's always, always so much more to know.

June has been "drag Noah to the doctor" month. Oh yes, he loves me for this. OT evals and speech groups and developmental ped appointments. Yay fun.

Today we went back for a follow up with the developmental ped and she gave Noah four dx's.

Sensory Integration Disorder, which I already knew.

Inhalant Allergies, which I could have told you any of the millions of times he's played with his cat and then turned into an allergy ball.

The other two were new, though.

She diagnosed him with Autism Spectrum Disorder. Yes, of course I knew he was on the spectrum, but the interesting twist here is that she DIDN'T want to give him an Asperger's diagnosis (the label he's had for two years). While he does have some of the defining characteristics of Asperger's, there's other stuff that is beyond Asperger's. This distinction she's made is super cool: it means Noah can potentially get services now that he's classified with autism. Phew.

Last but not least, Developmental Dyspraxia. This is the one I had to Google. Basically, it relates to both his motor planning issues and his language difficulties. He has difficulty planning a sequence of coordinated movements and executing plans.

The ped gave me pages of new homework assignments. I need to schedule appointments with speech specialists and allergy specialists and endocrinologists. I need to get computer-based math programs. I need to buy chewlery. I need to record descriptions of Noah's bowel movements in a stool log. I need to start him on a bunch of new suppliments. The list goes on and on. Good thing I don't have a new job starting or comps to prepare for or a fall course to plan or anything like that.

I may have a bunch of new things to learn and do, but I am excited for Noah. Answers, even partial ones, are wonderful things.

Apparently, I have a dangerous pelvis

On Thursday I was finally able to take Noah in for an OT/SI evaluation with the Super Amazing SI Therapist who's been working with Nick for a few weeks now. Before running Noah through all her tests, she asked me some premilinary questions about my concerns regarding Noah. I told her about how he can't moderate himself, getting overly amped up in sensory-stimulating environments, told her about how his sense of hearing and sight and touch are hyper-sensitive, but how he can't smell at all.

When she heard that, she stopped me. "What was his birth like?" she asked.

Noah was born nearly two weeks late. I was having contractions all that time, enough to keep me from sleeping but not enough to get the child born. The OB decided we needed to induce. And so we got to the hospital at an ungodly early hour (I think we were supposed to be there at 5 AM) and waited. And waited. And waited. Labor and Delivery didn't have any beds so they eventually sent us home. By afternoon they called to say they had a bed and we went back. Pitocin was started. Contractions increased in intensity, but I was too scared of the needle to get an epidural (stupidity, as I later learned). I still wasn't progressing enough so they broke my water for me. Late into the night it was finally time to push. I pushed and pushed and pushed for two hours. I was so exhausted that I kept falling asleep--W or a nurse would wake me up to push every time contractions showed up on the monitoring screen so that I could push again.

I may be small, but I'm TOUGH. I pushed the heck out of that child.

Midnight approached and my OB wandered in and slumped into a tired pile on a chair in the corner. He told me my baby was transverse; he'd hoped that pushing would straighten the baby out, make it go the right direction, but it hadn't worked yet. I could keep pushing, which would likely lead to vacuum extraction or the use of forecepts, or I could have a c-section.

And so I went off to the OR, got the spinal (a needle prick that I barely noticed), had a c-section and a healthy baby boy.

Noah's head was completely smooshed from all that pushing. It looked awful. The doctors and nurses laughed--it was FINE and would reshape itself. Noah's APGARS were good so there was nothing to worry about. He was FINE.

The Super Amazing SI Therapist said that the area where Noah's skull got smooshed by my pelvis is right where the sensory processing area of the brain is. She thinks that some nerve or neuropathway got pinched by the skull bone, leading to his sensory processing difficulties.

In short, my pelvis broke my baby's ability to smell.

I'm still sorting out how I feel about this. Part of me is angry at the doctors and nurses who reassured me that Noah was FINE; if I'd only known that my labor experience could have led to difficulties for Noah, I might have been able to watch for signs, get him help sooner. Part of me is sad that doing the most loving and natural thing for my child--trying to bring him into the world--wound up hurting him. Part of me is frustrated that it took eight years for a doctor to tell me any of this.

There was a lot more to the appointment, and I'll probably blog about it more later.

Mean Sarah McLachlan Makes a Boy Cry

Noah was playing with some PlayDo when a commercial nearly identical to this one (but for the US and not BC) came on.

Noah watched, transfixed. When the commercial ended, he came over to me. "Mom, I want to go to the pound to get a dog," he said as emotion threatened to overtake him. "There's a dog that needs a home."

I wrapped my arms around my boy, who was on the verge of sobbing. I wanted to run out right then and get him a dog. My sweet tender-hearted boy!

And if it weren't for the fact that Nick pulls animals' tails--and would surely get bitten by a dog for doing so--I'd be at the pound right now with Noah.

Maybe I really should get one of those autism dogs . . .

New under the heading of "you've got to be f-ing kidding me"

Mkay, apparently the Bible has prophesy about autism. Lots of it. Wait, you say you didn't see anything mentioned about autism the last time you read the Bible? Why, that's because you were looking at the words themselves, silly. You needed to take away the spaces between all the words, organize the letters into columns, and then run a computer program to find the Bible's hidden messages. Gosh, didn't you know that?

Since you're so silly to have not figured this code out yourselves, you can watch the enthralling video. Or you can visit this website. 

Now, see, the lovely part of this code is that you can find whatever you want to find with it. Like the matrix from Matthew 2:22-2 Peter 2:20. 

They found the word "autism" vertically. Then they found the word "pollution" horizonally. Therefore, of course, pollution must cause autism. But, wait, I saw the word "father" in the first line of the passage. So I say we throw out the pollution theory and just blame bad fathers for autism. Hey, Michael Savage said it, and now the Bible says it, so it must be true.

Lord, I need to go bang my head on a wall. 

Spidey Heart

The boys and I were on the way to Noah's social skills group on campus (only on the waiting list for a year--SOO excited for the first session finally). Noah noticed various things has he gazed out the car window. First it was a "lost cat" sign. Lost pet signs are rather disturbing to him; whenever he sees a cat or dog wandering around the city, he wants me to stop and get the strange animal in the car so that we can return the lost pet to its home. 

We continued along and then Noah noticed a cemetery. There were a couple of diggers--backhoe loaders? Noah would know the exact term--and he wanted to know what they were doing in the graveyard. I explained that they were digging a new grave.

We continued along and then Noah announced: "I'm only afraid of two things."

My interest piqued. Before he always said he was only afraid of one thing (the dark); I was curious to hear about thing two.

"I'm only afraid of two things: the dark and death."

Wow. Much weightier than I had expected. 

As I drove, we talked about death. He told me how it was something that he worried about all the time. I gently listened. I said some comforting things, but I also believe he deserves the respect of my honesty, so I didn't paint pie-in-the-sky visions of some heaven with candy-lined streets or anything like that. 

Then the conversation quieted, and we continued along, Noah quietly watching the world outside his window. 

I heard him sniffling. Once, twice, again. "Noah, do you have the sniffles?" I asked.

"No," he said as I turned onto Mountain Avenue, "I'm sad. I miss Nutmeg."

He was crying for the cat I'd had for sixteen years, the cat that he'd known since birth, the cat that passed away in November.

I wanted to cry, too.

Instead I reached behind my seat and pet his leg as I drove, told him I missed her too and that I knew it hurt.

Soon we'd pulled into the parking lot at the speech clinic and took my son in my arms as he cried for his cat. I held him for as long as he needed.

When Noah tells people about his Asperger's, he says he has "Spidey Senses." It's true. He has a heightened sense of awareness when it comes to sensory details. Sounds are louder, colors are brighter. But I also think he has spidey senses of the heart, feeling things more deeply than the average person. It's a beautiful, sometimes sorrowful, thing.

Today, guest starring in the role of angry mom, is Denise

I ended the day sitting on the back porch, sipping a margarita, watching the wanna-be monsoon clouds drift across the sky as the trees danced in the wind. 

It was tranquil. So different from my day.

Last week Kristina Chew blogged about this article that shared a scientific study's findings that mothers of kids with autism produce much lower levels of the stress hormone cortisol than typical mothers. My unscientific take is that if our bodies responded to the sorts of things that would trigger stress in a typical person that we'd be such ginormous stress balls that we'd drop dead, so it's a self-preservation thing. 

Ya, well, pushed to the limit, those stress levels can be boosted again. Oh yeah.

Today it started with all the plans I had for Nick's schooling for next year crumbling before me. At his last IEP meeting, I arranged for him to attend a different school, one with a classroom designed specifically for kids with autism. I was so excited. We switched speech therapists to get Nick ready for using the PECS system more consistently so that he'd be well-prepared for the way the class functioned. It was going to be awesome.

But then someone from the district's transportation office called me; she was setting up Nick's transportation for next school year. She had the pick up and drop off locations right . . . she had the school wrong, though. I told her the name of the school that he was supposed to be attending.

And she told me that the preschool on that campus had been closed. 

What followed was me calling four different people at the district's special ed department, trying to get answers. I mean, how can you shut down a preschool program and not inform the parents of the children who are supposed to attend that program? If it hadn't been for that conversation with transportation, would I have showed up to drop Nick off at the first day of school just to find locked doors?

I was pissed.

By the end of the morning, this is what I had learned: thanks to the lovely legislators who think kids with disabilities are a wonderful thing to swing their budget cut ax at, the preschool program was shut down, and the classes have been redistributed to various elementary schools throughout the district. The autism class, gone. Completely. Fabulous.

But here's some good news. I was able to get Nick into a class a Noah's school. And the teacher from the now-dead autism class is the teacher for this class. For once Nick will have a teacher who actually knows a bit about autism, so that's a good thing.

But dude, really, how could they NOT tell the parents about all this? Really.

My adrenaline was certainly pumping from the experience; I was ready to punch anyone who even sneezed at my kids. Yeah, you gotta watch this petite thing when the adrenaline is pumping--I'm dangerous (some of you know this!).

Eventually I calmed down. Fortunately my obligation at campus for the day was reduced; I only had to be there from 3-5 instead of 1-5. I've been using respite to help me get through my June obligations. It's taken some finagling. Because I couldn't find one person who could cover all the time, I've had two people in overlapping shifts. 

Thank goodness I only had to be there from 3-5. Thank goodness, or Nick would've been stranded today.

You see, the first person stays until two, then leaves to pick up another child from school. The second person comes at two.

Yeah, she didn't come today. 

I was watching the clock, cortisol percolating. By 2:15 I was loading both boys into the car. Hey, I could give presentations to hundreds of incoming freshmen with a squirrelly autistic four-year-old with lots of verbal stims at my side . . . right? 

The adrenaline was pumping again. How could she leave my kid stranded like that? How would I manage to get to campus on time? What was I going to do with Nick? An undergrad was going to hang out with Noah and keep him entertained, but I couldn't imagine how she'd be able to manage Nick too. Especially when I didn't have time to go over the Autism 101 primer.

Dude, how do you just not show up when a kid is counting on you? 

I expressed this to her supervisor, who I spoke to from the car in the midst of all this.

W. left work, met me in a parking lot, and took Nick. Then Noah and I rushed away. We pretended to be Speedy Gonzales because we were certainly speeding. We miraculously got to campus then ran to where his sitter was waiting. And then I ran to where a co-worker would be waiting for me to give our four presentations in a row to hundreds of freshmen.

I walked in the door with the freshmen. Sheesh. But at least I made it.

And now I'm hoping the cortisol will work itself out of my system so that I can sleep. Hopefully tomorrow will be a better day. 

My take on "curing" autism

Today one of Nick's habs gave me the best compliment. She said she loved that I had fun with my boys, loved that I accepted them and adored them for who they are. And I was like, "Well, duh, they ARE awesome" (except I used my grown-up mom words). 

It's true--those kids are awesome. I love how Noah not only memorizes the dialogue of movies, but that he also memorizes the characters' movements, too: he knows the choreography of an Indiana Jones fight scene down to every jump, kick, punch, and whip-crack. And Nick is a blast, too. We had the best party last night, thanks to his crazy autism-influenced sleep patterns. We played with his train, and he'd say "All aboard!" and wait for me to echo him; if I didn't he'd touch me to get me to say the phrase. Sure, being up in the middle of the night sucked when I had to wake up at 5:30 to proctor a writing placement exam, but it was so fun to hang out, just the two of us.

The hab agreed that my kids, like the others she works with, are awesome, but then a sad expression crept over her usually-happy face, "A lot of moms don't see it like you do . . . unfortunately."

As she said it, memory flashes of times I'd spent with other moms told me she was right. I've watched moms get angry at their sons for hand-flapping. I've watched moms freak out and forcefully intervene when their sons lined up toys. When I see my boys do those sorts of things, it doesn't bother me because I get it. I know they are over-stimulated or just simply in need of some way to organize the chaos. I get it. No big deal. In fact, it can be beautiful.

I adore the boys for exactly who they are, so it comes as a surprise to some that I use biomedical interventions with them. Why would I try to "fix" them if I really do accept them for who they are?

The rhetoric scholar in me is painfully aware that the language of the "cure" debate is a minefield. Words like cure and fix imply non-acceptance--my child is wrong and I need to change who he is. Ugh, I don't like that rhetoric. It reflects such narrow-minded absolute-ism. An absolute-ism very, very few of the parents who use biomedical interventions would ever espouse.

So if I do accept my boys for the brilliant, funny, unique little guys that they are, why am I pursuing biomed?

For me, it's that I can't stand seeing my boys in pain. No, I don't think that the traditional traits of autism are painful for my guys--the verbal stims and the spinning and the obsessive interests and the rocking. But there are other things that cause them pain. Like the chronic diarrhea Nick suffered for 3+ years. Like the pain Noah's extreme sensory sensitivity causes him, so bad at times it brings him to tears.

Because of the pain, I've been trying to treat their symptoms. With Nick, for instance, I tried to get all the information that I possibly could through lab tests, and then I worked to treat the things I found. Nick had extreme deficiencies in many of the basic nutrients and amino acids our bodies need, so I gave him supplements to give his body what it was missing. Nick had an on-going low-grade measles infection, so I treated that. Nick had dangerously high levels of lead, cadmium, and arsenic, so I began the process of getting those toxic metals out.

When I started doing these things, Nick started to change. His skin's ghostly-white hue changed to a healthy glow. He started to have long, peaceful nights of sleep. His sick stomach got better. And, yes, he started looking me in the eye and started focusing on the world around him in a way he hadn't before. 

He still has his kung-fu hand stims and he still obsesses on trains. He still loves numbers and letters. He still wrestles with his brother. He still laughs like mad when he watches Wipeout. He's still Nick, he's still awesome. He just has a healthier body.

Do I hope Nick's communication flowers someday? Of course. I want him to be able to tell me his needs the way his brother can. And do I want to teach my boys to interact with neurotypicals?Yes. But I happen to think that embracing neurodiversity is a two-way street, that neurotypicals share the responsibility of trying to understand different ways of thinking--it's absolutely unfair to place the burden of understanding on the autistic alone. 

I'll continue to do all I can to give my sons healthy, happy lives . . . and I'll continue to think that they are the most awesome dudes I've ever met, no matter what. 

How autism has made me a better me

Comprehensive exams . . . ah, the fun. My comps process has dragged out much longer than it has any right to, but the reasons behind said dragging are the topic for another blog (and besides, a lot of you have already heard me rant far too much about the whole thing). Anyway, as the semester wrapped up, I threw myself into comps prep. Which led me back to the resources I've collected since I began graduate school . . . and a lot of laughter. At myself.

I found the three-ring binders I kept for every graduate seminar I've ever enrolled in. And, holy frick, for that first year of my PhD program I was obnoxiously organized. I had color-coded binders. One color for each class. And inside each binder was a notebook--which matched the color of the binder--for my notes. And, oh!, I mustn't forget the tabs! I created tabs for every article in the binder for easy retrieval. Of course I labeled each binder with the course number and course name--on the front and on the spine.

Um, can you say anal?

It was during that first year of my PhD program that the word autism crept into my tabbed, labeled, and color-coded world. My first suspicions that Nick had autism hit during winter break when my almost two-year-old kept sneaking out to the garage during a family get-together to read off the numbers and letters on license plates. Then, during the spring semester, we went through the long, long dance of "finding out"--I took Nick to his pediatrician, to an audiologist, to a speech evaluation, and eventually to weekly speech therapy appointments, and he finally got his first label: "severe language delay."

That summer, the first summer of my PhD career, my boys got more decisive labels, both on the same day: Nick got "autism" and Noah got "Asperger's."

The binders changed after that. The tabs disappeared. The color coding vanished.

By the end of my coursework, the binders were simply the place where I threw the disorganized leftovers of a seminar. I didn't even bother to place a damn thing in the rings. And labels with course names and numbers--ha, I don't think so.

By now you might be wondering about the title of my blog. How could my descent into messiness correlate with a better me? Oh, but it certainly does, it certainly does.

You see, autism taught me the things that really matter and taught me not to waste time on the things that don't matter. Here are some of the things I learned:

1. Neatness and organization are completely over-rated. Yes, I have very neat, very organized files for the boys' medical information. That stuff needs to be organized because it's vitally important that I be able to pull lab reports and speech evals and progress reports whenever a therapist or doctor or teacher or case manager asks for them. But, dude, how important is it that I have old course readings organized? Not at all.

2. Traditional home-making tasks are over-rated, too. Here's where you, some of my dear friends, annoy the hell out of me (if you don't mind me saying in the most loving way). I see some of you stressing out so much about having The Right Furniture and The Perfectly-Cooked Meal and The Coordinating Throw Pillows and The Immaculate Lawn and The Dust-Free Bookshelves and The Witty-Yet-Cute Christmas Letters. My goodness, if you could only hear how much you stress over these sorts of things. How much time do you waste on creating The Perfect Home when you could be, I dunno, finger-painting with your kids?

I don't have a coffee table because my kids, well, they have ASDs and love, no NEED, to spin and run back and forth. I have a ball-pit instead of a dining table in my dining room. I let my kids cover themselves from head to toe in shaving cream because it fulfills their sensory needs.

My house is clean, but it will never be magazine-worthy. And so what? It's a home where my children can thrive, and that's what matters.

3. Competition isn't all that important. Now this may sound like a weird thing for me to say . . . because I've always been competitive. I love to win, I love to be the best. But I realized the other night when I was having drinks with a couple of girlfriends that somewhere along the way competition had lost its value. One of my friends was talking about how it was hard to go out with groups of her grad-student friends because there was always that pressure--everyone had to top everyone else with their stories of their kick-ass achievements in the academy. She was talking about the pressure she felt to match (or exceed) the successes of her colleagues . . . and I realized that pressure was foreign to me. Don't get me wrong--I'm a good scholar and I work hard. I just don't drive myself into the ground for my work like I would have before I met autism. I work faster and revise much less because its more important to me to help Nick learn to say one word than it is to turn 5000 of my brilliant words into amazingly brilliant words.

4. Leave bullshit at the door. I suppose it wasn't until my time became so taxed that I realized how much bullshit there was in my life. I think we all have some bullshit to varying degrees in our worlds. That "friend" who always makes you feel a little smaller with her digs. The leech who drains your soul. The obligations you hate but feel obligated to follow through on. I probably would have let the bullshit continue to suck the blood out of me if it hadn't been for the demands autism and grad school put on me. There was just so little of me left over after dealing with those two things, so very little, and I just couldn't spend the little left on bullshit.

So I stopped doing the things that I didn't want to do, and I stopped spending time with the people who drained me. I became a healthier person because of it (though I was critiqued by some for it).

5. I learned to treasure joys even more than before. Maybe it was seeing just how draining the bullshit can be that made me realize how precious the joyful things in life are. Yikes, I'm sounding greeting-card-like, I fear. But the things and people that make me smile, I heart them.

6. I am eminently stronger than I ever could have dreamed. Eminently. Okay, I don't want to sound like I'm one of Jenny McCarthy's "Warrior Mothers" (because I'd like to think I'm more complex than a societal stereotype), but autism taught me I can kick much ass. Clawing to get your child approved for ALTCS, firing habilitators and OTs and STs that aren't giving your child what he needs, battling through IEP meetings, fighting the state when it wants to cut your child's services . . . man, that makes you strong. Incredibly freakin' strong.

Return of the Leash Lady

Once upon a time there was a little boy who happened to have autism. He was a wonderful, wonderful little boy, but he just needed people to understand that he was a little bit different from other little boys. All he needed was a tiny dose of compassion and understanding, and he was golden.

But there were some evil beings who refused to give the little boy compassion and understanding. One of those evil beings was the Leash Lady. She ignored the little boy and pretended that he was just the same as other little boys. And then one day she invited the little boy and his family to come to her house. On one condition: she wanted the little boy's mother to buy the little boy a leash so that she could "control" the little boy if mother was ever out of the room.

Mother was not very happy with the Leash Lady's suggestion, not at all. And so she refused to take her little boy to the Leash Lady's house.

And so the little boy and his family lived happily without the Leash Lady. That is until one dark Monday when the Leash Lady called on the phone and said, "I'm coming for a visit this Friday."

Now the little boy's mother is wondering how she will deal with the Leash Lady coming tomorrow, wondering how she will keep herself from slapping her. Most of all, she wonders how to best protect her little boy from the Leash Lady.

LANGUAGE!

Today Nick and I were sitting on the living room floor, playing with this:
















He started to pick up the pieces, one by one, to add to the felt board. The first one he picked up was Harold the Helicopter, and as he set Harold in the sky I said, "Harold!" (you know, in that happy, exaggerated, speech therapist kind of voice). Next he picked up the giraffe and set it in the sky opposite Harold, because of course giraffes belong in the sky. But when he placed that giraffe, he did the most amazing thing: he said "giraffe." Or an approximation of it. Holy cow.

Then he grabbed the tree, put it in the sky between the giraffe and Harold, and said "twee." I cheered. He touched the tree and said "twee" again. Then he did it again, and again.

Holy cow!

I'm always giving verbal labels to the objects that matter most to Nick, pounding the words into him. But giraffe? Tree? I haven't really focused on those, well, at all. It's stunning that he pulled those out. Stunning.

We continued to play and he said "Thomas," a word he's had for awhile because that silly train is his world, and then he pulled out yet another new word, "tracks."

Three new words in less than five minutes.

That's just freakin' huge.

hmm . . . pot as a treatment for autism . . .

I read this article and, well, I'm really intrigued. I've made a choice to take the most natural approaches to the boys' autism and Asperger's treatments. I've focused on vitamins and diet, giving Nick some pharmaceuticals (like Diflucan), but treading cautiously because I don't want to over-task his liver.

I made this determination because once upon a time, I gave a magic pill to Noah. His doctor said it would help curb his ADHD, make him focus and behave better at school. Strattera as savior.

By the third day on that drug, my child turned into someone, something else. I had to go pick him up from his after-school program because he'd flipped out--screaming, hitting, throwing furniture. I got there and looked at this visage that seemed so . . . abused. He looked like he'd been in a torture camp, his brown eyes glossed with anger and encircled by reddened, puffy skin. I looked into those eyes and thought, "I did this to my child."

So no more pharmaceuticals for my boys. And, no, don't worry, I'm not rushing out to get them bongs, but I do wonder if marijuana could be a better treatment for the pain and anxiety people with ASDs face.

Doctor Day

Today I took Nick for a follow-up with the local DAN! doctor. Mom was very, very smart and brought along The Hab Who Nick Loves. Best. Decision. Ever. He kept Nick happy and entertained the entire time, which meant I actually got to have a conversation with the doc! Amazing. I told him that needs to go everywhere with us from now on.

Our new doc isn't as brilliant as the DAN! we were seeing in Phoenix (and paying three times as much for), but I do like that she's less medically-invasive. For instance, the old doctor's solution to Nick's yeast issues was keeping him on a high dose of Diflucan for months and months, but the new doctor is looking for natural ways to balance the flora in his intestinal track so that the yeast won't grow. I also like that she is always looking for ways to save me money on prescriptions and labs. I guess the old doc was making so much money charging three times as much for an appointment that she didn't think to consider that maybe some of her patients couldn't afford to spend $1000 on a lab test.

So, the newest thing we're going to do--we're going to start chelation. Half of you are thinking, wow, that's a dramatic step. And the other half are thinking, um, what is that? Chelators are organic compounds that latch onto metals. Put chelators into your body, they latch onto the heavy metals, and--VOILA!--you pee them out. (That's my super-scientific explanation.) Nick has dangerously high levels of lead, cadmium, and arsenic in his system, according to his blood tests. These, of course, are neurotoxins, so I'm hoping that if we get them out, Nick's cognitive function will increase.

There are several ways to do chelation, the most drastic of which is IV chelation. Yeah, I'm not doing that to my son, for so many, many reasons. Instead, I opted for suppositories. I'll give him these for three days, then on the third I'll collect his urine, which I'll send off to the lab to see which metals his body is purging.

I'm not sure what I dread more--giving him those suppositories, or trying to collect that urine.

I'll leave you all on that lovely note.

Mothering and the Academy Don't Mix (?)

Yesterday was Dead Day. You know, the "quiet" day on campus when there's nothing to do but grade.

Hah.

I spent my morning at Campus Health with the most recent contestant in the "Let's Try to Figure Out the Mystery Abdominal Pain" trivia game. Yet another doctor stumped, so I was shuffled off to the lab for tests. Gosh, you'd think that with the number of people who've played this game that someone would be a winner by now ::sigh::

Then I grabbed some lunch and scooted off to my study carrel to grade portfolios in the bit of time I had before I needed to be at the WC to interview the next crop of potential interns.

That's when my cell phone rang. Uh oh.

It was Nick's teacher. "I think I got confused," she said. Apparently, she thought for some reason that I'd be picking Nick up . . . and didn't put him on the bus to his daycare.

Not good.

I called W to see if he could pick up Nick, and it was taking painfully long for him to call me back so I frenetically scooped up my things, ran down three flights of stairs, ran over to the parking garage, ran up three flights of stairs. I was already to my car when W called back and said, "I wanted to do this for you, but it's a bad day at work . . ."

I raced off to Nick's preschool, trying not to burn my fingers on the steering wheel that had been baking in the 100-degree heat, consistently breaking speeding laws all along the way.

When I got to his school, Nick was out on the playground with an aide. "I thought he was supposed to get on the bus. I told the teacher that," she said.

I know the kind thing would have been to engage in conversation a bit, to thank her for watching out for Nick, but I was rushed. I mumbled something brilliant like "it's okay" (which, you know, none of this was okay), and steered my child toward the gate.

"Nick, let's play GO!" I said. And my child and I ran hand-in-hand to the car.

I got Nick to his daycare on the north side of town and rushed to get him unbuckled and into the building. I took him straight to his classroom and opened the door. He promptly threw himself to the floor and started screaming.

In autism language, that means, "Yikes! Someone's messing with my routine and I'm freaking out!"

Nick's teacher just sort of stared at all of this (super helpful--thanks), but fortunately a teacher from another class said, "He needs to go to the playground when he first gets here."

Oh.

So I scooped up the mid-meltdown child and led him to the playground. Then I went back to my car and choked down a sob before starting the engine.

I rushed and rushed and rushed back to mid-town. My cell phone rang with "where are you?" calls. I pulled into a parking spot and ran to the WC. I think I got there four minutes before the interviews were scheduled to start.

I put on my game face, and I don't think the eight undergrads that came in that afternoon could tell that I'd been racing across town like Speedy Gonzales on crack moments before.


All of this crazed running made me think about whether or not mothering and the Academy really can mix. People from outside of the Academy think I have a great gig--they think I can schedule classes for when my kids are in school and that I can do work when the kids are asleep.

In theory, it sounds ideal.

In practice, I'm racing through town mid-day, praying that I can make it back in time.

Tha Vagabond Blogger

Let's see: it's the end of the semester, and I have a pile of student portfolios to grade . . . must be time to procrastinate with some blog housekeeping!

Welcome to the new home for Daffodil Dance. I'll still keep the old archives at http://daffodil-dance.livejournal.com/ (unless I find a way to move them over here), but new posts will be in this new home. Why? 1) It's the end of the semester and I need a project to distract me from grading. 2) Very, very few of my favorite people have LiveJournal accounts, which made it annoying for them to try to comment on the blog, and I hate it when my favorite people are annoyed. 3) I can sign in with my Google ID, so I don't need to remember multiple log-on names (you can sign in to comment with your existing IDs, too). 4) Once, when that creepy dude from high school (you read about him in my MySpace blog or my Facebook notes, very likely) was trying to proselytize me, I sent him a link to one of my LiveJournal blogs--I figured it was easier to let him read something I'd already written about my religious views rather than spend my time responding to him. But then creepy dude got creepier, and I don't like the idea of him reading my blogs and following my personal business.

(So what have we learned about Denise? She's a lazy procrastinator who hides from creepy dudes. But she also loves her people and wants to make it easier for them to follow her blog.)

Anyway, welcome and I'm glad you're here. I hope you enjoy reading about our fantastical journey through autism and other miscellany. Follow me and comment on my entries--I love hearing from you!