When the right person comes along

Being a habilitation therapist is one of the most challenging, most important jobs in autism world. A hab is in the home, day to day, working on all the most significant skills with a child. While a child might only see a speech therapist or occupational therapist once a week, the hab is there with him or her during every aspect daily life, working on speech skills and daily living skills and school readiness skills and social skills and feeding skills and everything else you could possibly imagine. It's the most important job in autism world.

And, like I said, the most challenging. Not everyone can do it, or do it successfully. We've had around twenty different people in and out of our home. There was the girl who always tried to get me to leave the house during her sessions (um, illegal!). There was the girl who didn't know what a belt was and flashed my son with her g-string. There was the guy who thought the military approach was best and would pin Beh's hands to the table until he "complied." There were a couple of talented people who would've been great if they'd showed up to work consistently, and without tell-tale red eyes.

The toughest situations were the ones where wonderful people who I really liked just weren't wonderful habs. One person was with our family for about a year, and while I loved her and knew she'd do anything for my kids, the chemistry just wasn't right with the boys. Another person I thought would be amazing, and I spent $500 I didn't have to get my consultant to train her (thank you student loans), but she just didn't have the gift.

But there have also been a few really gifted people, the rare treasures in the gravel. And we lost all but one of those gifted people because Nick aged out of early intervention or because they were so awesome they decided to go off to medical school or OT school to become even more awesome.

With all the habilitators who have filtered through our lives, I've never seen anything like this one, though.

She's a young college girl who has never been a habilitator before. Beh is her first and only client. Her only real experience is the time she spent in her mom's classroom over the years, seeing first-hand what life was like in a special needs classroom.

But she has the gift.

Rather than being timid or afraid or looking to me to tell her what to do, she just stepped in and played with Beh just like he was any other kid (which I, of course, think he is, but most other people see the autism first). She was calm and unafraid. The first couple of weeks were challenging as Beh was trying to figure out the relationship, but then it just *happened.* The magic.

She figured out what he loved and used it. He liked Goldfish crackers, so she rewarded him with those. He loved his Thomas the Tank Engine books, so she brought them to the table to work on letter writing. He would happily write J for James and E for Edward.

Whereas most other habs had struggled to get him to do things, all she has to do is speak to him. "Let's go write letters," "Let's go to the potty," and Beh jumps up, following after her.

Today, though, I saw the most amazing thing. After school Beh and his hab have a routine. She gives him a snack, then she takes him to the bathroom, then they do some school readiness skills at his little table. Today he finished his snack and took her hand to lead her to the bathroom.

So many habs have thought of potty training Beh as a battle they couldn't win. But here was Beh, going off to the bathroom--unprompted--taking his habilitator by the hand.

It's so simple, really--you take the time to know and love a kid, and he responds. It's so simple, but it's something that is so hard for most people to figure out.

She's going to head off to OT school someday so that she can work one on one with kids like Beh for the rest of her life, but until then, I'm going to hold on to her. Tight. Don't any of you think of stealing a single hour of her time for your kids! ;)

When your worst fears become reality

I love Nick for exactly who he is. As Shakespeare says, "Love is not love / Which alters when it alteration finds / Or bends with the remover to remove / O no! It is an ever-fixed mark." Autism does not alter my love for him, and I do not wish to remove any of who he is. I accept him for exactly who he is: a beautiful, joyful little boy who doesn't have many words to communicate with me.

My fear, though, is that the lack of words would keep me from knowing if something was wrong. What if he was sick? What if he was in pain?

What if someone hurt him?

Last night around 6:20 the principal of my boys' school called me. She needed to talk to me. She asked if she could come over to my house. She said she'd be here in ten minutes.

For ten minutes I worried and wondered. Did Noah get into trouble at school? Did Nick bite one of the children in his class? I feared she was coming to tell me that one of my kids was being expelled.

Instead she told me that it was an adult who had done wrong.

It wasn't the first time we'd had a conversation like this, about the same teacher. During the early weeks of school, while Nick was still absolutely freaking out about the transition to kindergarten (routines and consistency are so important in autism), Nick had gotten upset about a door. It seems like a simple thing, I know. The class was in the computer lab, and the computer teacher's office door was cracked open a little bit. Nick is horrifically OCD about doors--they NEED to be either all the way open or all the way shut--but he didn't have the words to tell this to the teacher. Instead of nicely sitting at a computer, he screamed and tried, over and over again, to run to the office door and shut it. His teacher tried to get him to work. She sat down in a chair in front of a computer and put Nick on her lap. She wrapped her arms around his torso to keep him still (basically restraining him), and my child is afraid when he is restrained. He bit the teacher.

And instead of gently pushing into the bite to free herself, she hit his face to get free. In doing so, she caused a lot of damage to herself--Nick's teeth tore at the skin and she began to bleed.

I listened to all of the perspectives. I talked to the district about trainings for dealing with aggressive behaviors. I provided options that work when Nick is upset. I thought that maybe, just maybe, the teacher didn't think clearly in the panic of the moment of being bit and that having trainings and options for dealing with Nick's tendency to bite when he is scared would make the difference.

Ten days ago Nick's class was in the library. Nick was sitting in a chair, as were all of the other children, and I'm completely thrilled that he was sitting along side his peers--this is major progress in our Autismland. Apparently Nick was swinging his feet, which all kids do, autism or no. The teacher grabbed Nick's feet to hold them still, grabbed them so hard that she threw my child to the floor. For swinging his feet in a chair.

He could have gotten a concussion when his head hit the floor. He could have broken his tailbone when his bottom hit the floor. And he wouldn't have been able to tell me any of it.

The teacher's responsibility when any child gets hurt is to report it immediately. Immediately. The teacher didn't. Eventually someone else who was in the library that day made their way to the principal and shared what they saw.

The district is promising "disciplinary action." But that doesn't help. My stomach still feels sick. How many other times did this teacher hurt my son in the ten weeks he was her student? How many other children have been hurt by her?

How many traumas have been unspoken?

The district is making new protocols and policies, and adminstration is making frequent visits to the special ed room. But none of it makes me feel any better.

My child was hurt, and I wasn't there to protect him. My child was hurt, and he didn't have the words to tell me about it.

There's nothing worse than that.

Airplane Love

It's funny how the little things can change the world for a kid, especially a kid with autism.

Nick has kept to the same obsessions for most of his life. Letters. Numbers. Street signs. Trains. Cranes. He'd build and create the most elaborate of structures, but they were always based on the same small cluster of obsessions. He'd write words on the walls with wiki sticks, write lines of numbers up to 100 with chalk, build trains and cranes and street signs with Legos and waffle blocks and Brio sets.

And then, last month, something new came into his world.

It wasn't a planned gift at all, more of a "here's some kid stuff I have lying around--do you think your kids would want it" sort of thing. But the haphazard re-gifting reshaped Nick's reality.

It was an inexpensive glider, the kind where the wings slide into a slit on the body. I gave it to Noah, thinking he'd enjoy using a rubber band to launch it . . . but Nick was drawn to it. Intensely drawn to it.

All of the sudden there was a burst of language tied to the airplane. He'd ask to go outside because that was where the plane was, and once outside he'd say "airpwane, airpwane" until I retrieved it. He couldn't figure out how to make the plane fly, so he'd bring it to me to throw. "Ready, steady, fly!" he'd say when he wanted to see it soar. Soon he added "high in the sky."

The airplane got dirty and lost its nose; it got covered in red when Nick had a nosebleed yet didn't want to relinquish his toy. Eventually the airplane died, never made to withstand the love of a five-year-old boy.

But Nick wasn't deterred. Yesterday he took his Brio blocks outside . . . and built his own airplane. Throughout the day he added detail after detail, making the plane come alive.

This morning, after Noah went off to school, Nick asked to go outside. It was one of those amazing November mornings that you get only in Arizona--the air was alive with the warmth of spring, ignoring everything the calendar had to say. Nick and I played in the sun, taking turns flying the plane. I'd run around, flying the plane throughout the yard, up and down, dip and turn, while Nick chased after me, laughing. "Airpwane fly, high in the sky!" he'd say as the plane pirouetted in the air.

Soon it was time to come inside and prepare for kindergarten. Nick brought his airplane inside with him, and when it was time to take a bath, the airplane joined him. When it was time to eat a snack, the airplane was on the table next to his plate. When it was time to go to the bus stop, the airplane came along, too.

It's probably the only Brio block airplane to ever follow a boy through an afternoon of kindergarten.

Others of us might have been deterred when our original airplane died. Having invested so much love into it, we might have lost ourselves in tears or tantrums (for there are adult versions of those). Nick inspires me: he found a new love, loved it with all his heart . . . and when he lost what he loved so much, he made his own airplane, one much more beautiful than anything anyone could have ever purchased, one so much more amazing than anyone could have imagined.

The beauty of loss--there is so much to gain from it.

Good Things Come in Small Packages

Sorting the boys' clothes to put them away is the hardest part of my laundry rountine.

The shorts are the worst to figure out. Looking at the tags doesn't help much--a 5 could belong to either Noah or Nick, depending on how tight or loose the waist is.

Noah is nine and Nick is six, but their clothes are nearly the same size.

Noah has been slowly dipping down on the growth chart over the past several years. As an infant, he was right at the 50th percentile--absolutely average--but now, at nine, he's in the 1st percentile--absolutely tiny.

The percentile isn't so important so long as it's consistent. If you start out at the 10th percentile and then stay there throughout childhood, you're good. But if your growth curve dips, that means something is wrong.

Noah's bone age scan shows that his bones have only developed to the age of a six year old. He got into an argument at school yesterday because some kid thought he was a first-grader. He's the size of a first-grader. But he's in fourth grade.

Noah's classmates are feet taller than he is, and Noah only has a couple of inches on his baby brother. That he is four years older than.

Obviously his body isn't properly producing growth hormones. So what do we do? Wait. And wait. The first appointment we could get to see a pediatric endocrinologist is the end of January. Gotta love the doctor shortage in this town.

Hopefully Nick won't surpass Noah's height in that long wait. And hopefully Noah won't beat up too many kids for thinking him a first grader.

The Girl of 1000 Husbands

My neighbor thought I was Mrs. Robinson.

I mean, there I was, taking a walk through the neighborhood with a seriously talk and dark 21-year-old and my two kids. The neighbor was, sans leash, taking his tiny little terrier (which looks like a puppy but is actually twelve) on an evening walk as he approached the four of us. Usually when we're on walks and encounter the duo, Noah and the dog spend a lot of time playing together, but this evening was different. My neighbor saw the young college junior and I speaking to each other in hushed tones and said, uncomfortably, "I'm sorry to interrupt," and scurried away.

Then there was that other time when I was at McDonalds with my kids and a different man, an older man, and a few days later a teenager who worked there said to me, "I saw you this week," with a subtle tone that she'd caught me cheating.

Ah yes, to the people who don't live in Autism Land, I'm the freaky girl who's always with a different man.

My boys have habilitation therapists who work with them on lifeskills in both the home and the community. Nicholas has 25 hours of habilitation a week, and Noah has 15. That means there are a lot of habilitators in and out of my house in a given week. And since Noah is nine years old--an age when it is totally not cool to have girls hanging around--all of his habilitators are male. The habilitator who has most of Nick's hours and has been with our family longer than anyone is also male.

Nick has goals in his program that require him to practice things like ordering at a fast food restaurant ("chicken and fries and co-o-ke," he always says). Noah's program is filled with social goals, learning how to interact and play with peers. So, of course, the habilitators and I are out in the community with the boys a lot.

On the evening my neighbor freaked about my young companion (which, eww--not only are college students gross, but as a short girl I find super tall guys even grosser), the habilitator and I had taken the boys on a walk; the walk, of course, was just a cover for working a habilitation goal because we knew the neighborhood boys would be around the corner playing. We casually walked near where the kids were playing and Noah asked, "Can I play with them?" Of course! We gave Noah his space--it's so not cool to have grown-ups hovering over play when you are nine--and kept walking along with Nick, making sure we stayed in eye-shot and ear-shot just in case we needed to intervene.

Which, unfortunately, we did. One of the older kids was being a little mean to Noah and refused to share the toy guns with him; Noah responded like a kid with autism would. It was ugly and I got tears in my eyes watching my son, who longs to play with the other kids, get his feelings hurt yet again.

But I didn't let Noah see those tears. Instead, the habilitator and I helped Noah walk through and talk through his hurt, and, while Noah was distracted with the sight of the little dog, we took a second to whisper a few things to each other about the situation out of Noah's hearing.

LOL, I guess they seemed like intimate whispers.

I enjoy the irony of it, the presumption that I am doing something dirty, when the truth is the furthest thing from that. Yes, there are men who show up at my house throughout the day, men who you might just see me with at McDonalds. But if you only stopped to eavesdrop on me and these men, you might hear us talking about . . . children's bowel movements. PECS cards. Stims. IEP goals.

And that's about as un-Mrs. Robinson as you can get ;)

This is how you know that I love you

I spent my weekend in my pajamas, curled up on my bed with the sixty papers I HAD TO grade before Monday. I graded until my eyes didn’t seem to work anymore late Sunday night, wanting to push through the last fifteen papers but not able to decode a single sentence. I was exhausted; I needed to sleep . . . but my brain was so wired from the grading marathon that sleep was hard to find.

Two hours of sleep and it was time to get Noah up for school. Breakfast ready, lunch packed, child dressed, and finally we were ready to walk out the door to the bus stop. I opened the door, and that’s when Noah said it. “My stomach sorta doesn’t feel so good.” Oh no.

I quickly jumped into triage mode—no fever, no vomit. Noah and I decided that he’ll give school a try.

We blew kisses to each other through the bus window, and then I went back into the house, so torn about how I would spend whatever little bit of time I had before Nick woke up. There are fifteen papers left to grade, and I HAD TO have them finished today. But I also had to drive to Tempe and back and didn’t want the police to find my car in a cotton field after I fell asleep behind the wheel.

I climbed into bed.

An hour later a phone call woke me up. It was Noah’s teacher. He was unusually quiet—believe me, this is notable thing—and had complained about his stomach not feeling well. “He doesn’t have a fever, though. I figured I’d keep him here as long as I could and I’ll call you if it seems he needs to go home. Are you in Phoenix today?”

I told her that I would be up there later and that today was a Dad day—I made sure she had his number in case Noah needed to come home.

Nick woke up and it was time to get medicines and breakfast in him. This is not as easy as it sounds. At some point I found five minutes to jump in and out of the shower. I got dressed, then tried to throw some clothes on moving target Nick. That’s when my cell phone rang.

“The school nurse just called me. Noah’s there and doesn’t feel well. Could you call her and see if he needs to come home? Here’s her number.”

So much for it being a Dad day.

I somehow managed to get clothes on Nick and get him into the car, but it took some creativity. His obsession of the moment is Goldfish crackers—he wanders around the house saying “Goldfeesh!” all the time—and he didn’t want to leave the house and crackers behind. Tupperware, thank you. Nick, the goldfish, and I went to the health office to retrieve Noah. Apparently, that day was the first time the nurse had bothered to read his health card because she peppered me with questions. “He has seizures? Are they grand mal? What do we need to do if he has a seizure at school?”

Back to the house and I got myself ready for school and Nick ready for kindergarten. I put Nick on his bus right as a van pulled up and it became a Dad day after all. I kissed Noah goodbye and jumped in the car for my hour and a half drive to work.

I got to ASU thirty minutes before class started. SO not enough time to finish the fifteen papers I HAD TO have finished today. But at least it’s enough time for me to read the essay I’d assigned to my students for that day.

I taught four classes back to back, stopping at the vending machine to get a bag of Cheetos for lunch at around 3:15. I ate the Cheetos as I taught my 3:30 class about the changing modes of writing in the Web 2.0 world.

7:45 came and I was done teaching. I’m supposed to stay for office hours, but I was so tired. I got some Jack in the Box and drove back to Tucson.

There’s so much to do when I get home. There are still those fifteen papers that I HAVE TO get done before Wednesday. Really. It’s been over a month. I have to finish these papers.

But instead I looked over Noah’s lab results, which had just arrived in the mail. They were awful. Awful awful. I renewed my hate of autism and plotted to figure out how the hell I could reduce the toxic levels of lead, cadmium, and arsenic in his bloodstream, how I could increase all the good minerals he was deficient in.

The papers would have to wait—I needed to sleep. I took some melatonin and thanked the universe that I was going to get some rest.

At 1:38 AM Nick came into my room, with that boundless, frenetic energy that autism brings in the middle of the night. I re-renewed my hate of autism.

A little after 6 AM I finally got Nick back to sleep. I drifted off to sleep myself just as my alarm went off—it was time to get Noah ready for school.

The rest of the week will be just as chaotic. An ISP meeting, an IEP meeting, an OT session, a follow-up appointment with Noah’s autism specialist, an MRI that Noah will need to be put under for . . . and all the post-anesthesia vomiting that I’ve learned to expect with my boys. Somewhere mixed in will be teaching and lesson planning, and maybe even perhaps grading. Maybe.

This is how you know I love you: in the midst of all of that, I made time for you. It wasn’t as much time as I wish it could be—the people I love deserve so much more—but I deliberately carved it from the chaos for you because you matter. There was that text message I sent you, the encouraging note I left on your wall, the phone call where I strained as hard as I could to hear you over the squealing children beside me, the beer we grabbed, the lunch we worked to reschedule for the fifth time because our schedules are so nutty.

All of those were deliberate choices I made because you matter so much to me—and I realized I just don’t say that enough.

Noah the Rockstar

I'm in awe of how incredibly well Noah has been handling all of this new seizure stuff that's been thrown in his lap. That kid is a rockstar.

He wasn't thrilled about adding yet another medical professional onto his already-full dance card of doctors to visit. For days before the first appointment with the neurologist, he kept telling me, "But I don't need a neur . . . what? A neurologist. I don't need a neurologist." As we sat in the waiting room, that refrain returned. You know, if I was a nine-year-old kid, I wouldn't want a neurologist, either.

But then he got into the exam room, and I was in awe. I just sat back quietly and watched during the first half of the appointment as Noah, in such a mature way, answered the doctor's questions about his health and sleep patterns. It was only when she got to tough questions about his birth complications and autism that the doctor had to turn to me for answers. I was so proud of my boy for taking ownership of his own healthcare, being his own advocate.

The most amazing part was when she examined Noah. He HATES having doctors examine him. I mean, he's got all these sensory issues and doctors come along and touch his body and shine lights in his eyes and jam sticks in his mouth. But Noah was incredible. He sat, he listened . . . and the only time he had any issues was when the doctor had to shine a light in his eyes. I was so proud.

Of course, it was the same thing that I heard with Nick--the doctor thought Noah was probably fine, but we'd do an EEG just to make sure.

Noah was a rockstar with the EEG. He had so much fun staying up late, and he was nothing short of incredible during the procedure, letting the tech place all of those electrodes all over his head even though he hates people touching his head. Simply amazing.

And then, of course, I got the same call that I'd gotten with Nick--the "wow, mom, you were right about the seizures!" call.

I sat down with Noah on his bedroom floor and explained to him about the excess electrical activity in his brain and the effect it has on him. I described the precautions we'd have to take now, explained he'd have to take medicine now, talked about the benefits that the medicine will have.

I expected him to get frustrated or upset--he hates taking medicine--but he didn't. He just calmly accepted it all with maturity and grace.

Noah has had to carry so much more than most kids would ever have to. Not only does he have his own medical issues to contend with, but he also has a severely autistic brother that often challenges his patience and understanding. He has his moments when it's all a little too much for him, but I'm surprised at how rare those moments are. He carries more weight that most adults do, and carries it better than most adults would.

That's what makes him a rockstar.

The Parent Volunteer

"No parent has ever offered to do that before," Beh's shocked yet excited teacher said.

His new teacher had called last week, just one of the things that shows how wonderful she is--she took the time to call in advance of school starting to touch base with her students' parents.

We had a really wonderful conversation, one that lasted about twenty minutes, and toward the end I offered to volunteer in the class on Tuesdays and Thursdays.

She was ecstatic and welcomed having a parent in the room . . . but was shocked because no parent had ever offered to volunteer in her class before.

She teaches at the school that, while it is the smallest in the district, also happens to have the highest number of parent volunteer hours in the district. The parents at the school are active and every time I've been there to volunteer for something in my older son's class, I've had to wait in line to sign in because there were a lot of other parent volunteers signing in ahead of me.

What makes Beh's energetic, student-centered, call-parents-just-to-touch-base teacher's class different then? Why at a school that thrives on parent volunteers are there no parents volunteering to come in to help run centers or read stories or make photocopies?

The only difference is that she teaches the cross-categorical class for students with special needs.

I've been thinking about that phone call all weekend, and the more I do, the more bothered I am.

For far too long in our country, we've Othered children with special needs, sending them off to the classroom at the end of the hallway and forgetting that they were there. I look back on my own educational experiences, and the only time I was even conscious of a "special ed" room existing was when I was in high school and my Halloween costume was voted the best in my first hour class; I, along with the winners from the other first hour classes, went to the special ed room, which was empty of students during first hour, for the final round of the costume contest (and lost). The room was right next to the bathroom at the end of the English hall, and I'd used that bathroom a hundred times during my years at the school but never once thought anything about who was in that room.

I look back now as a mother and I want to cry, thinking about the sons and daughters who lived a life of isolation in that room, so isolated that no one even knew they were there.

I guess that maternal response is what makes me so troubled by the fact that in Beh's teacher's long career, not a single parent would volunteer to help in her class. Why wouldn't they? They'd volunteer to help in their typical children's kindergarten classes, wouldn't they? Why would a parent of a child with special needs treat that child's education any differently?

We've heard it and lived it so many times--you are your child's best advocate. As parents of children with special needs we become medical experts and legal experts. We advocate fiercely for our children in IEP meetings to demand that the school do all it should for our children. But why on earth would the school take our children's education seriously if we ourselves don't? What's to stop them from marginalizing our kids if we ourselves treat them as unworthy of our time?

I will be there this year. I will run errands to the office and clean whiteboards and grade papers and sing songs and read stories. I will be there. And I hope to God that other parents join me.

A big brother's love

Nick got home from OT and was miserable. He'd cry and scream off and on. He was miserable for some reason he couldn't communicate (it was so reminiscent of some of our earlier days with autism). Noah, however, didn't have much compassion and would yell "Don't scream!!!" every time Nick screamed. And so I yelled at Noah not to scream at his brother. A lovely cycle of yelling ;)

Nick laid down on his back on the living room floor and his face was red with misery. "Let's go night night sleeps" I told him, thinking that some rest would make him feel better. He gave me a look that said, "Heck no! The sun hasn't even set yet!"

"You can choose anywhere you want to lay down," I told him. And he went right over to the couch and laid down. (I love that my child can now actually understand and respond to things I say!)

I got his blanket for him and after a few minutes I looked over to find him fast asleep. "Look," I whispered to Noah, " Nick's asleep."

Noah turned to look at Nick, then got up from his chair to gently pet his brother's hair.

Noah has been watching Cartoon Network for the past hour, and even though he's very engaged in his shows, he keeps stopping every now and then to check on his brother and pet his hair.

Brothers may make each other yell, but there sure is a beautiful love there.

This is what it's like to be loved

I came in to find Noah had settled himself into my room, a little bed of blankets spread out on the floor.

"Mommy!!" he said as he ran to hug me. It's his typical greeting for me . . . I can go outside for 45 seconds to put the trash in the dumpster and he'll greet me with the same excited "Mommy!!" that I'd hear if I'd been gone for five days.

"Are you sleeping in here?" I asked.

In the sweetest, most sheepish voice he replied, "I want to be close to you."

Who am I to argue with that?

He set about arranging the room for sleeping. He got his Lightning McQueen nightlight and plugged it into the wall. Then he tucked me in, making sure I had all my pillows and blankets. "Here's a nice spot for your cell phone," he said, taking it from it's typical home under my pillow and setting it on a shelf right next to my bed. "Oh! And don't forget your night guard!" he exclaimed like a good parent as he brought me the case from my dentist's office. It's supposed to stop me from grinding my teeth at night . . . "supposed to" but I didn't know for sure because I'd never made it a full night with it in. I put the night guard in place and Noah shut off the light.

Even with a visit from an incredibly powerful thunderstorm, I had a soothing night's sleep with my son sleeping on the floor next to my bed, and I didn't even grind my teeth once.

Discovering Scent

A smell is a powerful thing. It can scare you away from milk that's too old, it warn you of a fire, it can make you smile as you touch a t-shirt that has your boyfriend's smell. A smell is a powerful thing.

Noah never had a sense of smell. There have been a lot of theories on the matter, from genetics (his dad has smelling difficulties, too) to birth trauma. Whatever the cause, there seemed to be little we could do about it. A neurologist once said, "Oh, that's interesting," and left it at that. Um, thanks for the helpful input, doctor.

A strange thing happened, though, when Noah and I were working on his science fair project a few months ago. We were using this heavy-duty, kill-your-brain-cells kind of glue to put fins on his little rockets, and, it took about twenty minutes or so for him to process anything, but finally, out of the blue, Noah said, "What's that smell!!??" as he clutched his nose in horror. He smelled the glue!

He didn't have any other smell responses, though . . . that is, until the past couple weeks.

Within the past two weeks, Noah has been grossed out by the smell of coffee, gasoline, and my nail polish. And then, today . . .

I was vacuuming, as I do at least twice a day to keep up with the damage the boys do to the living room, and I happened to use some vanilla-scented carpet sprinkles this time. Noah stopped me mid-vacuum. "Does that have a smell?" he asked.

"Yes . . . can you smell it?"

"I can! That smells gooo-ood!" he beamed.

My child can smell. The only thing I can figure is that a year of sensory integration therapy is having an impact. I'm glad, for safety reasons, that he can now smell noxious things and get away from danger. But my heart is even more glad that he smelled a beautiful thing for the first time today. I love that my son will someday be able to smell a perfume in a crowd and be reminded of his girlfriend's scent, or smell cookies baking and be able to anticipate tasting them. I love that my son can smell.

Hide and Seek with Noah

Yesterday Noah and I were playing Hide and Seek. And Noah couldn't find me . . . so he decided to call my cell phone.

You'd think he'd just listen for the sound of the phone to figure out where I was, but no. I answered the phone and he said, "Mommy, I just threw up" in his sad, miserable little boy voice.

And I went into mom mode, in search of my sick little boy.

I walked into his bedroom and he said, "Ha ha, I found you!"

Yeah, that child is a sneaky devil. He's gonna keep the world on its toes, that's for sure.

The Most Vulnerable Population

Here are a few horrifying statistics for you from Darlene Barriere:

• Mencap, the largest charity in the United Kingdom for children with learning disability, reports that 1400 new cases of sex abuse against people with a learning disability are reported per year in the U.K.--only 6% of which reach court. Conviction occurs in only 1% (Mencap, 2002³)
• For girls with developmental disability, the average estimate for sexual abuse victimization was 1.5 times higher than the general population rate; for boys with developmental disability, the rate was roughly double (McCreary Centre Society, 1993, p. 9⁴).
• 83% of women with disability will become sexual abuse victims with disability in their lifetime (Alberta Committee of Citizens with Disabilities, 2002⁵).
• One hundred sixty sex-related incidents were reported at the Washington State School for the Deaf between September 1998 and February 2001. At least 100 other incidents including rapes, attempted rapes, and dozen of molestations were reported (Seattle Post Intelligencer, 2002⁶).

I have two sons with autism. My older son is higher functioning so I don't worry quite as much about him being sexually harmed, but my little Beh . . . he doesn't have the words to tell me that someone has harmed him. I'm deathly afraid of someone hurting him and me never knowing about it.

Our recent experiences with a stranger heightened those fears.

My older son started attending a social skills group at our local autism resource center. The first few weeks Dad took him, but when the semester ended I took over. During the sessions, I hung out with Beh in the waiting room. At first I didn't pay much attention to the others in the waiting room because I was so focused on Beh. Keeping a child with severe autism happy in a very small waiting room is quite an undertaking, so I devoted all my time to engaging Beh to make the time fun for him. I spoke to the other moms in the room only a little--they were awesome about complimenting me on how great I was with Beh, and their words meant the world to me . . . because as fellow autism moms, they knew.

And then, during a session a few weeks ago, I got more involved in the conversation in the waiting room.

A couple of the moms and I got to talking about education issues--a major thing for all spectrum families--and as we spoke there was a man, who'd stayed mostly quiet, who joined our conversation every now and then. He was older and wasn't a parent; apparently he'd befriended a family and had brought their son to his social group. I noticed that he was watching Beh . . . a little bit too much. Okay, a LOT too much. He watched my beautiful five-year-old as if there was no one else in the room. Granted, I know Beh is adorably handsome and has a charisma that wins people over, but . . .

The feeling I got was the same one I felt once before, when I was sixteen or seventeen and a friend's father, someone who apparently had high standing in the Mormon church, was giving me and another girl a ride home in his van. He reached all the way across from his seat to where I was in the passenger seat and moved his hand slowly along my lap. "I just needed to make sure you had your seatbelt on," he said. Yeah, right. The danger and fear I felt then were exactly what I felt when I saw this stranger look at my child. And if parenting my sons has taught me anything, it's to implicitly trust whatever my feelings are telling me.

The next week the man was there again, but without the child he had been taking to the group. He was there just to see my son . . . and to bring him an expensive gift.

After that I decided Beh was NEVER going back to that waiting room again.

Last week I had someone else take my older son to his group and try to scope out the stranger. That wasn't too fruitful; his only report was "the guy didn't seem so weird."

This week I made sure Beh was in safe hands at home when I took older brother to group. The stranger was there with his teen-aged charge . . . and he was kind of a jerk to the kid, telling him to read his book when he tried to join the waiting room conversation. I took myself outside, sat on a bench under the window where my son's session was taking place, and listened to the cacophony that was my son's social group.

I finally went back into the waiting room, and after a few minutes the stranger stood up and handed me a bag. "Will you give this to Beh?" I opened it--a plush toy and another book.

He said that he had the teen in his charge search through the entire bookstore to find that one book for Beh.

I cringed.

************

I'm taking precautions and exploring avenues to investigate the stranger--yes, I'm going to ensure that my son is never again in his presence, but I still want to investigate who the person is because if he is someone who harms children I want other families who have children with autism to be aware so that they can protect their children, too. I'm not writing this blog because I'm seeking advice about how to handle the stranger; I'm writing it because this episode is indicative of a much larger issue that will always confront Beh.

As a male with a developmental disability, Beh has double the likelihood of being sexually abused. It's an ugly, horrific truth. There are people out there who would prey on his inability to speak and seek to take advantage of it. Sure, I can keep him away from the stranger in the waiting room, but what about the people I can't keep him away from? What about the older child at school, the aide on the bus, the counselor at the summer program? I have a hard time stomaching that I cannot always be there to protect my child.

And if anyone ever does hurt him when I'm not there to protect him, they better pray that they have people there to protect themselves.

A Child's Grown-up Worries

Nick, Noah, and I had finished up with dinner--carry-out from Pizza Hut--and Nick headed to the back porch to enjoy the wind while Noah stood up to clear his plate.

Noah paused, the plate still in his hand. "Mom, if Nick and I have autism, the disease will never stop."

I couldn't quite process the words. I had him sit down next to me on the couch and explain it to me.

"If Nick and I have autism, the disease will never stop. Our sons will have it, and their sons will have it, and their sons will have it, and their sons will have it, and their sons will have it, and their sons will have it, and their sons will have it, and their sons will have it."

I wanted to cry. Here was my nine-year-old son, worrying about his tainted genetic legacy. He was scared that he would give his disease--DISEASE! Where did he get that word!? I only ever talk about autism as difference!--to his children. Noah understood enough to know that his autism was likely the result of his own father and grandfather's autism, genes they passed down to him.

Instead of crying, I asked Noah how he felt about it.

"I think the autism should end," he said. And in that moment, though I think my sons are incredible and perfect and I'd never want to change them, I wanted to take the autism away so that my Noah would never have to hurt and worry over it ever again.

Diss research makes me teary-eyed

So I'm writing this diss chapter on pedagogy, advocating for practices in the writing classroom that embrace neurodiversity. I was dealing with research on the writing practices of students on the autism spectrum, supposed-experts arguing that because of the "mindblindness" of people with autism, they are oblivious to the perspectives of others and therefore do not appeal to audiences or include background information or transitions. I, of course, wasn't happy with the over-simplification of mindblindness, so I looked further.

I found compelling research that indicated that rather than mindblindness, people with autism are overly sensitive to the world around them . . . so much so that at times they have to shut down just to survive. Neuroscientists Henry Markham, Tanis Rinaldi, and Kamila Markram call this Intense World Syndrome.

Strings of articles led me to research on the limbic system and the amygdala. This is the area of the brain responsible for memory, emotion, and fear. Oh, and smell. (Odd combination, it seems, but ever notice how smells trigger memories? I suppose that in earlier stages of our evolution this was important for finding a mate . . . so memory, emotion, and smell do fit together if you think about it.)

People with autism have amygdalas in overdrive, hyperactive compared to a typical person. Memory, emotion, and fear . . . intensified. Imagine remembering everything and feeling the emotions and fears related to those experiences far more intensely than a typical person would. It's not just that people with autism remember a lot, which they do. The way memory modulation works in our brains is that emotional arousal solidifies our remembering of an event. The greater the emotions, the more we remember something. Thus someone like Daniel Tammet can remember pi up to the 22,514th digit because he has an emotional attachment to every single number.

But . . . think of all the things that suck in life. The dog that barked and scared you. The seatbelt that was too hot and burned your hand when you tried to fasten it. The teasing you encountered on the playground. Imagine feeling all of the negative emotions and fears related to these daily sucky experiences a thousand-fold. Wouldn't you be walking the world in fear that all of these horrible things might happen again?

The amygdala is also the area of the brain that triggers our fear responses. Like immobility and freezing. Like fight or flight.

That emotional shutting down we think we see sometimes in people with autism--that immobility is a fear response. The fighting meltdowns we sometimes see in people with autism--that fight or flight is a fear response.

My god, my children live in fear, I realized. My heart hurt for them and my eyes filled with tears as I put the neurological pieces together.

No wonder routine is so important to Nick--he's probably afraid that he'll encounter negative experiences that trigger so much emotion and fear, and staying to routines reduces the chances of that happening.

No wonder Noah is a walking extreme of emotion--loving so tenderly, laughing so loudly and joyfully, hurting so incredibly. Like his brother, he has an over-active amygdala.

And . . .

All this research finally put one piece together that doctors have always scratched their heads at. Noah can't smell. When I asked why, the best I ever got from a doctor was a shoulder shrug (although an OT suggested it was caused by birth trauma). But here I found this one little area of the brain that explains everything. My boys obviously have amygdalas that function atypically--and this is the area where we process smell. It makes perfect sense that if this area of his brain is affected by something that his sense of smell would be affected too.

I really don't have that cape

Nick's been having an "off" week. That's the term that comes up in discussions with his therapists and teachers during times like this. It seems that with all their thera-speak and edu-speak that they'd come up with something fancier, but "off" is the word of choice.

And always, when he has an off week, I am thrust into the role of detective, trying to figure out what went wrong so that the off could be turned back on again. Was it the allergies? The slight increase in Depakote last week? The nosebleeds? The end of the school year? A decrease in calcium or Omega 3s or Vitamin D or Selenium? The therapists and teachers add pressure to my obsessive sleuthing, pelting me with question after question about what might have changed to make him off.

A lot of times, I can figure out what triggers him. He's OCD about some things, which a lot of people with autism are, and I've become rather expert in memorizing those things. If we're going to the school bus stop, we need to walk down the left side of the driveway, and then we have to close the gate to the neighborhood ALL the way, and then we need to stop at a certain spot to play in the dirt. Mess up one of these things, and the aide on the bus gets scratched by an angry child who needs to finish his rituals before being buckled into his seat. But I've memorized them all, and learned how to speed through them when the bus shows up too early, so Nick's usually okay.

But there are some things that I just can't prepare for.

Nick and I went to the store this evening. Not the crappy discount store around the corner, but the nice store a few miles away where I could buy some nice things. I remembered that the last time we went to that store that Nick got upset and so I proceeded very carefully and cautiously. I was living sunshine, making the store as bright and as wonderful for my son as I possibly could.

We got the cart and, doing my best rendition of cheerleader-mommy, I settled Nick into the seat. And . . . nothing! He sat down happily in the cart! This is usually the battle line--if we can cross it, we're golden.

But then I buckled the seatbelt.

It wasn't really a seatbelt; it was an armpit belt. And Nick FREAKED OUT.

I could totally understand his freak-out; in his world, seatbelts NEEDED to be on laps. It made sense. And so I unbuckled the seatbelt.

Nick freaked out even more. Because a seatbelt gives him security: YOU CAN'T BE IN A GROCERY CART WITHOUT A SEATBELT!

And so I took him out of the cart, talking to him in my most soothing mommy voice, reassuring him that it was going to be okay. He cried and fought to pinch me in his frustration, and I continued to soothe. A woman trying to get around us to reach the kiwis shot me a dirty look, and I decided that rather than yell "What the fuck is wrong with you, lady? Haven't you ever seen a kid with autism?" that I would just ignore her and continue to soothe my son.

He screamed and cried and said "bagel, bagel" in between the screams and cries . . . which totally made sense to me because carbs make me feel better when I'm upset. And so I scooped up the battered pears, the victims of Nick's angry kicks, settled them into a safe corner of my cart, and took my son over to the bread aisle.

I found bagels. I lifted them up as an offering . . . and he shoved the bag away and screamed.

Because we weren't at the crappy store around the corner and these weren't the cheap Sara Lee bagels he was used to. The unfamiliar bagels were probably more stressful than the misplaced shopping cart seatbelt.

We made it down one aisle. I talked to Nick and soothed him, staying calm and loving the whole time. And then we went straight to the checkout line where, thankfully, there was only one person in front of us. As we waited the short wait and Nick cried, I reached for a chocolate bar, opened it up, and offered a piece to Nick right there. He took the piece, crumbled it in his hands, and screamed. I scooped up the bits of broken chocolate from the floor, hoping they wouldn't melt in my pocket before I could get to a trash can.

And, and long last, we made it to the car . . . with inedible pears and a crunched-up chocolate bar in our bag of purchases.

In the car we'd be okay. Nick likes riding in the car. He has the security of his five-point car seat harness to make him feel safe, the rumble of the road to relax him, and the sights zooming past us to keep him enthralled. In the car we'd be okay.

And so I drove along until it was time to make the turn off the main road. As I did it I had the realization that I was doing it ALL WRONG, but it was too late.

Nick screamed and cried and kicked my seat. I'd waited a millisecond too long to move the car over to the right, and I hadn't moved far enough over, either.

I soothed Nick through the turn with my gentle voice, telling him that it was all going to be okay.

And then we turned to enter our neighborhood, and the car before me had triggered the gate . . . which meant I didn't have to stop for a moment and wait for the gates to swing open.

Nick screamed again, and kicked again . . .

and I screamed too.

"Calm down, Nick! We're going to make it home! It doesn't matter if we stop or not!!"

My god, I screamed at my child.

We pulled into the driveway and I apologized to my son. "Honey, I'm so sorry I yelled at you . . ." and then, out of nowhere, I started to sob. "I love you. I love you so very, very much. And I'd do anything for you," the tears were streaming down my face now, "but sometimes it's hard. It's just so fucking hard."

And my son, hearing my sobs . . . laughed. Because he doesn't know how to decode the emotions of others. I mean, really, if you think about it, a laugh and a cry sound a lot alike.

So we got out of the car. We walked up towards the house, and something somewhere along the sidewalk wasn't quite right and Nick dropped to the ground in tears. I picked him up and we walked into the empty house, crying together.

---------------

Denise was off today. The detective tries to piece together the reasons why. Was it the chaos of getting her boys through the last week of school? Having her allergies transform into a sinus infection complete with sore throat and earache? Waking up at an ungodly hour because Noah is on his summer schedule, awake and ready to take on the world when it's impossible to wake him during the school year? I mean, it must have been something; why else would she have yelled at her son and broken down into sobs?

But you know, maybe there's no smoking gun for why I was off or why Nick was off. Maybe it's just that sometimes autism is hard.

When I Fell in Love

I never saw myself as a baby person. I remember when I was in my mid-twenties and my friend Beth had a baby . . . I held that thing and was completely FREAKED OUT. Beth's baby fell asleep in my arms and I didn't know what to do. "He's asleep," I said in panicked whisper, and Beth calmly replied, "It's okay; you can just keep holding him." So I did, freaked out as I was.

A couple years later I was in the bathroom at my mom's house with my cat, Nutmeg. She sat with me as I waited for the plus sign to show up on the pregnancy test. Which it did.

I instantly loved that person who I just learned was living in my womb. I remember going to the mall and buying the baby a present--a yellow rabbit beanie baby named "Grace." Although I wasn't expecting or planning to be pregnant at that point in my life, grace seemed like the best word to describe how I felt about that little person, like God had given me a gift in His grace.

Though I still didn't see myself as a baby person. Fortunately, I thought, I happened to be married to someone who *was* a baby person. He was the kind of guy who would always talk and wave to the babies in the supermarket . . . and I always tried to get him to stop because I was sure the moms would be freaked out by this stranger cooing over their baby. He was the kind of guy who cried at the tiny baby booties I bought at Target . . . I think we both figured that he'd be the one who did the bulk of the baby stuff, since that was his thing, and I'd sort of take over when the kids got older.

Of course, that's not how it happened at all.

The baby was born . . . and since he was a boy the name "Cosette Grace" didn't really fit him. But Noah did.

The first few weeks were a blur. I was recovering from both labor and a c-section, adjusting to the irrationally large hoards of laundry that such a tiny person produced . . . but then, after those first few weeks, something amazing happened. I fell in love.

I'd loved Noah ever since I'd seen that plus sign in an abstract sort of way, but it took time for me to fall into that absolute, indescribable sort of love. I think it's because I've always only been able to fall in love with people I knew well, and Noah was a stranger at first. But once I got to know him, there was this love that I never fathomed was possible.

That first summer is the summer I know I will look back most fondly on for the rest of my life. The semester didn't start until September, so I had three months of glorious time with Noah. I'd nurse him and he'd fall asleep in my arms . . . and rather than being freaked out like I was with Beth's baby, I loved ever second of him there asleep next to my beating heart. I didn't take him to his crib to sleep, but instead I sat there with him, holding him, for hours upon hours.

And I loved the tough times too. When he was sick and I rocked with him in the rocking chair in the corner of his room, I remember feeling so THANKFUL. It felt like such a gift to be able to be the one to hold him and help him when he was hurting. And when he coughed so hard from croup that he puked, I caught the puke in my hands as I held him. Yep, that's when I *really* knew I was a mom.

A few years later is when Nick came along . . . this time the baby was planned. And again I fell in love, but this time it was faster. I remember not wanting to leave the hospital because I loved the quiet time Nick and I had with each other there. To love two people, so fully . . . I never knew it was possible.

It's Mother's Day so I'm thinking about these two great loves of my life today. Is it hard being their mom sometimes? Yes, sometimes. Autism can be a bitch, and every now and then I wonder what it would be like to have a week without habilitation therapy and occupational therapy and speech therapy and IEP meetings and doctor's appointments. Oh, and those cold, calloused people who don't give my children the compassion they deserve as human beings. But would I ever, ever trade my boys for a moment? NEVER. They are the two most amazing people I've ever met. The loves of my life.

And when I focus on that love, it makes all the other decisions in life easy to make.

Empathy

They say that people with autism lack empathy. There's the whole theory of the mind hypothesis that says people with autism have mindblindness--they are blind to the thoughts and experiences of others.

Today Nick proved those theorists wrong.

Nick was in a sensory-seeking mood as he was trying to calm himself down from the trauma of a dog visiting the house (unfortunately the therapy techniques that work for Noah don't work for Nick). And so in his frantic moment he reached for the nearest person--Noah--grabbed him by both arms, and in a split second had bit his bicep.

The bite broke the skin. It was the ugliest Nick bite I'd ever seen and, my friends, I've seen a lot of Nick bites.

I quickly shuffled Nick off to his room and focused on Noah's wounds, making them feel a bit better with band-aids and Bacitracin and ice packs and lots of mommy kisses. Then Nick came out of his room.

I did it mostly for Noah, because I wanted him to see that I treated his brother's misdeeds the same way I treated his, and not because I thought it would register with Nick. I brought Nick over to where Noah and I sat on the floor and had him sit with us. "You hurt Noah," I told him.

Nick looked at his big brother, who was still working to control the sobs, and when he saw the sadness in Noah's face, his face immediately changed to match the sadness. I thought that *he* was going to begin to cry.

"Noah sad," he said with a heartbreaking tone in his voice.

"Yes, Noah is sad," I told him. "Noah is sad because you hurt him."

"Oww, oww," Nick said, acknowledging his brother's pain.

"You need to say sorry to Noah," I said. Nick was silent. "Say sorry to Noah," I repeated.

"I sorry Mommy," Nick said.

And then I had the brothers hug.

****

Six months ago I wouldn't have been able to get Nick to focus on looking at his brother's face. Six months ago Nick wouldn't have been able to speak the words he did today--he was still using PECS cards to communicate.

Those two things are miraculous. But the most miraculous thing is the way he looked at his brother and felt his pain. I've never seen empathy and compassion like that. He saw his brother in pain and immediately he felt that pain, too.

I love the way Nick pushes the boundaries every day, challenging what all the theorists and experts said about what he'd be able to accomplish. He started speaking when they thought he wouldn't. He went from one-word utterances to complete sentences in mere months when others thought it was impossible. He demonstrates compassion when the very term that labels him, autism (derived it from the Greek word αὐτός, meaning self), says he is so into himself that he can't sense the feelings of others.

Ha, take that experts--a five-year-old has thwarted you again.

My Autism Awareness Button

It's April, which means Autism Awareness Month. It's the month when we change our Facebook profile pictures to autism graphics, the month when we wear autism pins on our lapels. We wear puzzle piece buttons with pride, wanting to share autism with the world.

But how much can someone learn from a button, really? I mean, can a graphic of a puzzle piece really tell anyone anything about my sons? I don't think so.

It's spring in Arizona, which means the temperatures are close to 90 degrees. It's the time of the year when I get creative in my dressing, wearing lightweight long-sleeved shirts or toting along a lightweight cardigan to put on when I have to interact with someone (especially at work). It's a masking game I play, I suppose.

Tonight as I sat in my office, it was too warm to keep the sweater on, though I figured I could throw it back on if one of the tutors had to come in to talk to me. As I sat there at the table, I looked at my arms, my living autism awareness buttons.

It's my right arm, mostly--that's the one Nick prefers. It's covered in scars, scratches, and bruises. When people see it, they usually say nothing, though others ask about my cat. I usually let them think it is my cat, rather than telling them the truth.

My son *loves* me, more that he loves anyone in the universe. And because he loves me, he wants to experience me. A typical child might just snuggle next to mom to satiate the need Nick has, but his sensory system is under-responsive; he simply wouldn't feel anything from a gentle snuggle. He wants to pinch me and bite me--hard--so that he can feel and experience me.

Yes, I'm doing all the things the so-called experts have told me to do. Behaviorists say to ignore the behavior to extinguish it, but that doesn't work for Nick--I mean, it's not like he's doing the behavior to get a reaction from me, so the whole principle doesn't apply here. I am having some success with replacement behaviors--I'm teaching him to squeeze instead of pinch and to give super-hard kisses instead of biting. And he likes to push his forehead into mine to get that physical sensation he seeks. Slowly, we're replacing the destructive with the acceptable, but it takes time.

And so, for now, my arms carry the scars of my son's love, tokens that most parents never get to carry with them as reminders of how much their children love them. I think that for Autism Awareness Month I shall just wear the scratches and bruises uncovered as my autism awareness button. Perhaps not as pretty as a colorful puzzle piece, but far more accurate.

I'm going to step into the vaccine mess

Sometimes being in the autism community is like living in Port Charles or Salem--we've got as much drama as a soap opera.

Maybe you heard the news a couple of weeks ago, the news that stirred up all the drama and fighting all over again. Dr. Andrew Wakefield, the British researcher who published an article linking the MMR vaccine to autism, had his work retracted by The Lancet because of some unscrupulous research practices.

The publishing of the retraction might as well have been a bell ringing at a boxing match because as soon as many people within the autism community heard it, they were ready to rumble.

The community has been polarized, and viciously so. People on both sides are calling their opponents ignorant nutjobs. And it's everywhere I go in the autism community--on blogs, on listservs, on Facebook. People everywhere are writing angry, impassioned messages about how stupid the other side is.

I think, perhaps, the way this is playing out is demonstrating something about the roots of autism that Wakefield's research didn't address--that autism has genetic links. In these autism moms and dads, I see mindblindness, black and white thinking, and social impairment that are all indicative of the autism spectrum.

I can understand the people on both sides of the debate. Wakefield's research practices run contrary to all the ethical principles I adhere to as a researcher, and I am deeply concerned that medical journals do not require the authors of studies to disclose their financial stake in the research. (Ethics are incredibly problematic in medical journals: click here and here for stories from NPR.) And, honestly, before autism hit my boys, I thought that parents who assumed their children's autism was linked to vaccines were just grasping at straws to try to explain away (and blame away) their children's illness. Then my little Nick was born and had some auto-immune issues. He was on antibiotics pretty much constantly throughout his first year of life. Then he went to his one-year check up. He got all of his one-year shots, plus a flu shot . . . plus all of his nine-month shots all over again because the float pool nurse who got pulled in to cover that day didn't know how to read an immunization chart. About a week later, Nick had a dangerously high fever that even had the doctors scared, and then he lost so many of the skills he'd gained in his first year--waving hello and goodbye, kicking a ball, speaking a few words. About two years later, when I took him to a specialist who ran every test imaginable on him, I found he was *still* fighting an active measles infection.

Here's the thing that makes me sad: so many people will only read half of the above paragraph. They will see my critique of Wakefield's research practices and assume I'm one of the evil people after their savior, or they will see my narrative about Nick's post-immunization horrors and call me a loon for even thinking the shots and the regression could be related (even if medical tests showed an active measles infection).

As a scholar, I am passionately committed to what Krista Ratcliffe calls "rhetorical listening" or what Mark Osteen calls "empathetic scholarship." I believe that in order for us to make any progress, we need to listen to one another and understand one another's positions. In my scholarship and in my pedagogy, I make strong calls for such rhetorical listening; I demand that the neurotypical listen to and respect the neurodiverse. I find it sadly ironic that the neurodiverse and their advocates are failing to listen to one another.

And so here is what I propose: shut the hell up. Everybody. Stop calling each other names and listen, truly listen, to what others have to say. That is the only way that we can find a shared common ground that can be a true basis for change.

Saying "I love you"

Nick had slipped out of his bed, yet again, but he was being so cute that I didn't have the heart to say "night night, sweet Nick"--the words that always make him run to either his bed or mine and throw himself under the covers.

I was sitting at the dining table working . . . okay, I was harvesting some trees on Farmville, but I was going to start doing some work soon, really . . . and Nick climbed behind me in my chair as he loves to do. He leaned around and put his lips on my cheek, the trademark Nicholas pucker-free kiss, and then decided to climb up on my shoulders. I was struck by how funny a sight it must have been, Nick perched on my shoulders as I "worked" at the computer, and I momentarily thought about how I might capture the sight on my camera phone without letting Nick slip from my shoulders.

That's when he said, "Tee-cle!" My phonetic spelling *so* does not do justice to the the cuteness that is Nick saying "tickle."

"Hey, how am I supposed to tickle you when you're up there?" I jokingly asked. And then, with my right arm carefully wrapped around his leg in case he lost his balance, I reached my left arm behind me to tickle Nick's ribs.

He laughed and then said, "I wuf you."

(Okay, my eyes filled with tears again just typing that.)

Maybe he was saying 'I love you' because I say it to him all the time when I'm tickling and cuddling with him. Maybe he was repeating the words he'd heard so many times before without understanding what they stood for.

But one thing I do know: Nicholas knows what it means to love. My little boy loves me.

And tonight he said the words. They are the most beautiful three words I have ever, ever heard.

So typical; so beautiful

Nick and I were early. Noah's after-school science club meeting was still in session, so Nick and I made our way over to the playground. He climbed up on the play structure, then ran back and forth across the bridge in joy.

A couple of little girls came over and climbed up the steps to the slide then slipped down.

Nick watched them from the bridge and laughed. "Slide down!" he said and went over to join the girls in their play. The three of them slid down the slide, time and time again, and sometimes Nick would get so excited about sliding that sometimes he forgot to wait, sliding into the girl in front of him, laughing all the way.

*******************

Such an unnotable, typical day at the playground for just about any parent. Any parent, that is, except for an autism mom. I watched my child play and wanted to call every single person in my cell phone to scream out my excitement.

You see, six months ago, Nick would not have even noticed the girls. Six months ago, Nick would not have been able to say "slide down." Six months ago, Nick would have never gone over to other kids and joined them in their play.

It's the most average, typical things that are the most precious; they are the things I celebrate, the things that make me cry.

"That sounds far-fetched"

That's what I was told when by district transportation today when they finally called me back about my report that my child had been assaulted by seven children on the bus this afternoon.

"That sounds far-fetched."

You've *got* to be freakin' kidding me.

He made this judgment before talking to the bus driver, before interviewing a single passenger, before reviewing the video tape.

I guess that in the Amphitheater School District in Tucson, Arizona, the idea of actually investigating a group of neurotypical children attacking a child with autism on the bus is far-fetched.

I guess that believing the wounds on my child came from his bus ride home would be far-fetched.

I guess that thinking the transportation department that once dropped off my severely autistic, non-verbal son AT THE WRONG LOCATION would care at all about the children with disabilities that they transport would be far-fetched.

But if you have a child with a disability and you live in the Amphi District, I don't think it would be far-fetched at all to move. Right now.

Damned Lemon Blossom!

The boys and I were in the backyard as the sun was creeping down toward the horizon. I sat on the porch proofreading my book chapter (which Noah felt was wholly unimpressive) while Nick planted himself in the sandbox and Noah perched himself on top of a little ladder to check out the lemon tree.

"Mom, how does the flower turn into a lemon?" Noah asked as he touched a lemon blossom.

I'll admit, I was geeked. I was going to get to talk to my son about cool science stuff! I went over to the tree to talk with him about pollination.

In language he could understand, I told him about the sperm and the ovules and how bees fly from tree to tree bringing the two together. He already knew about a sperm and an egg coming together to make a baby, so I said it was kind of like that--the bees bring together the sperm and the ovules in the flower, and a baby fruit is born.

I was going to tell him the part that I thought was really cool--that less than one percent of flowers ever become fruit--when he asked me a question.

"Who brings the male and female parts together?"

"The bee, honey," I answered.

"No, not in the flower. With people."

I'm not uncomfortable talking about sex; many of you know this about me. But somehow, in spite of myself, my face flushed and I struggled to find words.

And so I skirted the details, and felt completely lame for doing so. I told him about how a man and a woman decide to mate and then bring their egg and sperm together.

"Do you know what 'mate' means?" I asked.

"Yeah. Marry. Mate. Then die," he answered.

I laughed warmly. It's actually not too different from the way many men I know see the reproductive cycle. "Where did you learn that?" I asked.

"In the butterfly unit at school," he answered. Okay, fair enough. I guess a butterfly doesn't live for too long after mating.

"But how does the sperm get delivered to the egg?" Noah asked.

I knew that I had to answer the question now. For some stupid reason I was still flushed. "It's something you can't talk about at school, okay?" I said, fearing the calls home I would get when a teacher heard him say something about penises on the playground. This stuff happens. Like when Noah got obsessively interested in movie ratings, and his dad made the mistake of telling him that X was the worst of the worst movie ratings . . . Noah had no clue what the content of an X-rated movie was, but next thing I know, his teacher is complaining that Noah is talking about X-rated movies at school.

Noah agreed not to talk about it at school, and then I started to explain. "The sperm comes out of the man's penis and goes into the woman."

"This is a weird conversation," Noah said.

I laughed. "I know, honey." And just then, with our joint admission that it was weird, the nervousness was gone.

I took my son over to my chair on the porch and sat him down on my lap. I explained the nuances of male and female anatomy and how the two came together. Noah listened and put the pieces together in his head, with just a little confusion when he thought at first the belly button was the opening I was talking about. And then, when he'd learned all he needed to know, he said, "Okay, time to change topics."

So we talked about video games, and I realized my son wasn't a baby anymore.

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.