Day 49: Back to School

6:05 AM: Wake up from crab-fishing dream. I was throwing the hook and doing really well on the Cornelia Marie. Side-effect of watching Deadliest Catch episodes on Netflix before bed.

6:06 AM: Put some clothes on. Renew my yearly resolution not to be that mom who puts her kids on the bus in her flannel monkey pajama pants. Resolution should be broken by October.

6:07 AM: Wash face, look at my Zyrtec and Symbicort on the counter, decide to take them after I get the kids on the bus.

6:10 AM: Go out to kitchen to find Noah has all his medicine ready (I didn't know he even knew how to measure the doses!) and is getting his breakfast ready. He reports he's been up since four.

6:14 AM: Prepare breakfast for Nick only, since Noah is some fancy grown-up junior high kid now and doesn't need mom to make his.

6:20 AM: Go in to wake up Nick. He's wet his bed. Clean child. Strip bed.

6:26 AM: Very tired Nick tries to go back to bed. Not happy that his bedding is gone. Lays down on towel.

6:29 AM: Try to dress limp noodle child.

6:35 AM: Finish dressing limp noodle child, except for shoes.

6:38 AM: Bring Nick his Risperidone. He takes it on the first try. Phew.

6:40 AM: Offer Nick his favorite breakfast. He screams.

6:45 AM: Nick gets angry and tries to pinch me. And pinches me more. He's starting to build up a tolerance to Risperidone. Boo.

6:50-7:05 AM: Try to get shoes on Nick. It doesn't go so well. Noah gets so fed up with Nick's screaming that he starts screaming. Send Noah to his room.

7:08 AM: Send Nick to his room because he's gotten too violent about the whole shoe thing.

7:11 AM: Go outside to meet Nick's bus. It's disgustingly Florida humid out there. Tell driver Nick's too upset to get on bus this morning.

7:20 AM: Retrieve Noah from his room. Try to comb out his cowlick.

7:29 AM: Try to comb out cowlick again. Give up and decide he can impersonate rooster at school.

7:32 AM: Noah and I go outside to wait for his bus. They tell you it's a 10-minute window on either side of the official time so we should be out there 10 minutes early, but I want to avoid the disgustingly Florida humidity and wait until five minutes before.

7:37 AM: Official pick-up time. No bus.

7:37-7:47 AM: Anxiously wait for the far-too-wide 10-minute window to close so that I can call and ask where the eff the bus is. Mosquitoes nibble at my feet an ankles, a side-effect to the disgustingly Florida humidity.

7:48-7:51 AM: Call transportation. Dispatcher dispatches wrong driver, the one who goes to the wrong junior high. Dispatcher then dispatches correct driver. Mosquito bastards bite more, prompting runny nose and watery eyes.

7:52 AM: Go back into house to find happy Nick jumping on his bed. Phew. Throw Nick's school stuff into my car.

7:54 AM: Throw children into car, too. Air conditioning sooo much better than disgustingly Florida humidity. Wait for Noah's bus.

8:07 AM: Noah's bus arrives 30 minutes late. Drive Nick to school.

8:10 AM: Asthma attack from stupid evil mosquito-bite allergy begins in car. Denise had decided to take her Zyrtec and Symbicort after getting the boys off to school. Oops.

8:23 AM: Pull into Nick's school. Before getting Nick out of car, watch Noah get off his bus up the hill at the junior high. Aide meets him and he bounces into the school to start new life as fancy grown-up junior high kid.

8:24 AM: Put shoes on Nick. Unbuckle his car seat.

8:24 AM: Nick takes off his shoes.

8:25 AM: Decide shoes aren't important. I mean, really, aren't they just part of a heteronormative patriarchal ideology of conformity anyway? Decide Nick should challenge hegemonic forces and stage a shoeless rebellion against the man.

8:30 AM: Deliver Nick and his footless shoes to his teacher.

8:45 AM: Return home to my beloved Symbicort and Zytec. Rejoice that school days are so much calmer than the chaos of summer.

The Other Brother

I've always been the little sister. I've never had a younger sibling to deal with, especially not one with a developmental delay, so I can't fully understand exactly how Noah feels as Nick's big brother.

Not only does Noah have his own milder autism (and all the struggles that come with that) to manage, he also has his brother's autism to manage. He doesn't get the brother he always wanted who would play video games with him and share a room with him. What he does get is extra responsibility. I try to limit it, I do. But sometimes, when you're in line at Papa Murphy's and Nick melts down, you just gotta give Noah $20 and ask him to get the pizza. When it's a choice between not letting Noah get the pizza he really, really wants and asking him to be in charge of paying for it, I choose the pizza because I don't want Noah to lose out on anything because of his brother.

That's my goal--I want to do all I can to make sure Noah doesn't miss out on anything because of his brother.

Sometimes, though, there is nothing I can do.

One of the habilitation therapists who was working with Noah quit on him, three hours before her next scheduled shift, because she was afraid of Nick.

I'll let you take a moment to process that. A therapist whose job it is to work with kids with autism was afraid to work with one of my autistic children because the other had her scared.

The whole idea that Nick is someone to be afraid of pisses me off to no end, so let's not even address that for now. That's way too much Momma Bear for one blog post.

Think about what it was like for Noah. He spent all this time building a relationship with someone . . . and then she disappeared. Without warning, which sucks for a kid with autism who craves consistency. Without so much as an explanation or a goodbye, which sucks for, well, any kid who has someone they care about leave their life.

Yesterday he was asking for her because it was a day when she'd normally come to work with him. What do you say to spare a child's heart? Not the truth. Because he'd either resent his brother, or the therapist who bailed on him with not so much as goodbye . . . or both.

It's a no win.

I wish I could put a bubble around my boys to protect them from the world's misunderstanding of autism. In that bubble, no one would ever look at Nick like he was a monster, no one would bail on Noah or Nick and disrupt their consistency and routine. There's no such bubble, though, so all I can do is protect them as much as I can and buffer the blows when they come.

Another Blog on Why Moving Is the Best Thing I've Ever Done

Today was the fifth grade awards assembly for the first quarter. Noah came home with an award for the most improved student of the quarter.

School has always been a nightmare for Noah. Imagine being a kid with autism and ADHD and trying to survive in a general-ed classroom of 35 students with little to no support. There were some fantastic people along the way who did their best for Noah, but with the administration limiting what supports they would give to Noah, there was little these fantastic people could do. Finally, in fourth grade, Noah got to have an aide with him for a little bit of the day (a battle I'd fought for three years), and the time she spent with Noah increased throughout the year. But it wasn't enough. Noah was falling more and more behind, getting more and more frustrated.

Then we moved and Noah found himself in a school with a different way of looking at difference: their strategy was to give students as much support as they needed from the start and help them become less dependent on those supports as they gained the skills to thrive in general education. Shocking, I know.

And so Noah started off his school year in a classroom with just five other students and staffed by a teacher and two aides. [I just heard a bunch of jaws drop. The stuff of fairy tales, right?]

Noah had a rather difficult start to the year as he tested boundaries and learned that they weren't as flexible as the boundaries he was accustomed to. After all, with thirty-something children in his previous classes, he was able to get away with not doing much at all. But here he was expected to actually work and follow the rules and be responsible.

Once he figured out the structure, he thrived. He started attending P.E., music, and art with a mainstream fifth-grade class. He won a Distinguished Dolphin award and got to eat lunch with the principal. And, now, the Star Student award . . . he's thriving.

Noah's teacher is thrilled about his progress and has arranged for Noah to start Junior Achievement with his general education peers. "I love to reward good behavior," she said, "and it is always my goal that my students rejoin their general education peers when they are ready. I think Noah is ready!"

He is ready. He's already made friends in the class he'll be mainstreaming into so there will be friendly faces to greet him when he begins Junior Achievement on Thursday. And then, as Noah is successful in general education, he'll spend more and more time with his fifth-grade class.

Five years of struggling and fighting and trying to get Noah the education he needed. Five long years of Noah living in misery. In just nine weeks, though, Noah has become a child who jumps in excitement, beaming the brightest of smiles when he gets off the bus because he had a fantastic day and feels proud of what he accomplished. Most days when I see that smile of pride I have to fight back tears--it's a smile I've always know was there and have been waiting so, so long for.

And that's another reason why moving is the best thing I've ever done.

The Waiting Room, Redux

Once again we find ourselves in a waiting room. This time we're at the allergist--with the boys out of school and camp and no respite services set up yet in our new city, they have no choice but to come with me for my weekly injections. It's a lot of waiting. I wait to be called, and after my shot I wait 30 minutes before they call me back again to make sure I'm not having a negative reaction to the shot.

As always, I bring my mommy bag of tricks to entertain the boys. For Noah, it's books and markers and drawing paper and Hero Factory creations. For Nick, it's a laptop and a horde of Thomas videos.

We claim our seats--the ones right by the outlet so that the laptop stays juiced--and settle in for a long summer's wait.

While Noah plays with his heroes and Nick watches Thomas Sing-a-long Songs, a mother and her two sons step in the door. The mother takes a seat across the waiting room from us but her older son, wearing crooked glasses and shaggy blonde hair, notices Nick's video playing and is absolutely mesmerized. He wanders over to us and his younger brother soon follows. The mother, nervous, immediately calls out to her sons to come sit with her, but they don't seem to hear.

The boys sit down on the floor next to Nick's stroller and the older boy, struggling to enunciate the words but eager to voice them, begins peppering me with questions. What is he watching? Why is there smoke coming out of the train? Why is he in a stroller? Why is that train sad? His younger brother joins in with a few questions of his own. What is his name? Can you get Club Penguin on that? What is he doing with his hands?

Their mother stands nearby in the watchful hover-stance I know so well, at the ready for whatever may come. It is the Autism Stance, the one all of us autism moms have perfected. We never know what might happen, so we stand prepared for everything.

As the boys chat with Noah and me, we learn that the older boy is 14 and the younger is 5. The older boy's autism is more pronounced (his speech is at about the level of a typical four year old), but the younger boy has some severe sensory sensitivities; when his brother lightly touches his stomach, he shrieks as if he's been stabbed. His mother scoops in and promptly redirects him.

I know I've complained about children in waiting rooms before, but these children absolutely delighted me. I loved their inquisitiveness, their eagerness.

The mother and her boys are ready to leave before my after-shot wait is over. As she shepherds them toward the door, she stops and turns to me. "Thank you for being so nice to them," she says with eyes that reflect both gratefulness and tears.

"Of course!" I respond, and wave an enthusiastic goodbye to the boys.

As the glass door close behind them, I realize that she probably had no clue that I was another mother who lived the Autism Stance. I mean, Nick was so engaged in his video and Noah was so engaged in his toys that they didn't seem very autistic today. The boys themselves may have noticed Nick's autism (asking what he was doing with his hands when he was stimming), but the mother was so focused on her children that I don't think she saw it.

If she'd been there last week as we sat in the waiting room, she would've seen the autism. I mean, the woman sitting right next to me that day did, and she made a loud production of moving herself and her daughter far away to the other side of the waiting room when the autism seeped out.

That's why the mother of those boys had tears in her eyes. She'd undoubtedly experienced 14 years of people moving away from her children, as if their autism was a communicable leprosy. But here was this one person today being nice to her kids, sharing her son's DVD and smiling as she answered their questions . . . and my eyes filled with the tears that her eyes held when she left the office.

Ain't Talking 'Bout Love

My pet peeve today: love.

Not the concept of love--that I like--but the word love, used too loosely.

Autism means dozens upon dozens of people moving in and out of your children's lives. OT, SLP, PT, hab . . . these service providers waltz in and out, an never-ending revolving door of service. They move away, they take new jobs, they go to graduate school. In and out, in and out. Longfellow's tide rising and falling for an eternity.

What bothers me, though, is when these service providers claim to love my children.

Of all the people who have made their way in and out, there are only two who I can say really loved my children (John and Allie). My kids weren't just a job to them; my kids were in their hearts. They didn't just disappear when the job was done; they still keep up to date on them. Allie comes by during her breaks from med school, armed with presents for the boys and immense love.

But the rest, they aren't the type to keep in touch when the job is over. They move on, and the kids are just a distant memory to them.

Which is okay. I mean, they are professionals and many of them maintain a professional distance, which actually makes some of them better at their jobs.

The people who bug me, though, are the ones who claim to love my children, when they really don't.

"I love your kids so much." "The boys are like family to me." "I love your kids with all my heart."

Which is, well, bullshit.

Love is an ever-fixed mark, Shakespeare tells us. It doesn't quit when you get called out on falsifying data, it doesn't quit when something gets annoying. Love is staying up 'til 3AM when a child can't stop stimming. Love is taking scratches and bites and bruises from a child with autism and returning those with a hug. Love perseveres through the ugliness and difficulties. Love doesn't quit when things get uncomfortable.

I'm okay with people not loving my children, though I think they deserve love. What I'm not okay with is people saying they love them when they don't. I'm not okay with people telling my children they love them when they don't. Because, well, my kids will believe it. Their autism doesn't let them see through lies; they take what they hear as truth.

You know, only to get their hearts broken when the person bails.

They deserve better than having adults who should know better break their hearts.

So don't use the word love if you don't really mean it. Certainly not with my children.

The Weighting Room

We spend our lives in waiting rooms. Autism as brought us occupational therapy waiting rooms, speech therapy waiting rooms, music therapy waiting rooms, neurology waiting rooms, endocrinology waiting rooms, developmental pediatric waiting rooms, behavioral health waiting rooms . . . oh, and then there's the regular waiting rooms most kids visit, like pediatric waiting rooms and dental waiting rooms.

I think this must've been what Prufrock felt like when he lamented that he'd measured out his life in coffee spoons, but in my case I've measured out my life in stacks of waiting room Legos that probably have germs from a thousand kids.

I hate waiting rooms. It's not just because I've inherited my dad's impatience for waiting, though. I hate the kids. Not mine; other people's.

It sounds terrible to hate the kids, I know. But, see, waiting room entertainment is a laborious science for me because I'm always trying to think ahead of autism. Noah and Beh both have their waiting room tote bags, packed with Plan A, Plan B, Plan C, Plan D, and Plan E to keep them contented. In the event Beh is no longer entertained by his goody bag, I switch over to working to get him interested in the assorted waiting room toys lying around. I know that if he isn't engaged in something that he'll start to stim, and his favorite stim right now is turning light switches on and off, which isn't really socially-acceptable behavior in waiting rooms. I'm working hard in the waiting room . . . and often other parents aren't. They get lost in their magazines and cell phones, and inevitably their children, who are bored and lonely, start talking to me, wanting to play with me. And I'm working; I don't want to be interrupted.

On Tuesday we went to the dentist. Noah was happily entranced by the movie playing in the lobby, so I focused all my song and dance on Beh. I entertained him with the waiting room toys. First we labeled all the plastic foods (he named them all, well, except for the tomato that he called an apple, but I'll give him that one). Then we played with nesting blocks, then nesting eggs, then ABC blocks.

Next to us was a little boy playing at the ubiquitous waiting room feature--the magnet table where kids can move objects through sand by moving a magnet on a string underneath the table. He was about four, toe-headed, and mohawked. There wasn't a parent in sight. Of course he started talking to me. He had cavities, he told me. His dad got angry at him about his cavities, apparently. Then he started trying to nose into everything that Beh and I were doing. Which, when you've got a child with severe autism who doesn't understand the concept of "share," doesn't work well. Mohawk boy kept talking and talking and talking, and I silently prayed that the hygienist would call him in next.

Then a little girl came along to join in at the magnet table. She'd just finished her appointment and her mother had left her in the lobby as she took a bathroom break. She couldn't have been three, a tiny little girl, toe-headed too, and pig-tailed. As she sat at the table, she started talking, in the most adorable little girl voice: "Sugar makes me fat and ugly and no one will love me no more."

Mohawk boy said nothing, and neither did I, too astounded to speak. Here was this tiny little girl, far too young to even be left alone in a waiting room, rehearsing the most horrific of scripts. Teen-aged girls are bombarded by it, that pressure to be perfect and beautiful because they fallaciously believe it to be equated with love . . . but here was this toddler, far too young to read teen magazines or watch Gossip Girl, reciting a horrible ideology that will likely damage both her spirit and body. She should be playing in sandboxes, not worrying about her weight.

How many times had she heard her mother say it if it was so ingrained in her that she spoke it to strangers in a waiting room?

Her mother exited the bathroom, and I noticed her twice-a-week tanning-bed-visit bronzed skin and her hair, dyed blonde to match her daughter's. I found myself wanting to put my foot out to trip her as she walked by . . .

I hate waiting rooms. Hate them.

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 ;)

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.

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.

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.

"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.