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!