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.