Daffodil Dance

Treasure Days

2011-12-28T09:30:00.000-08:00

I know that these are common moments for most parents, but they are the ones that leave me in awe.

Beh has been so happy all winter break. Indescribably so. It's like he's beaming rays of joy. Laughing, singing all day. Even yesterday when I had to take him with me to pick up my new glasses, he was happy. I'd really hoped that I wouldn't have to have him with me, but alas there was no such respite. To be honest, I got tears in my eyes when I realized that I'd have to bring him with me because I feared the worst. On outings like this I find myself chanting a prayer in my head over and over as I drive along, "Please stay calm, please stay calm, please stay calm." New places are often traumatic for Beh, and I never know how he's going to react.

He reacted, well, just like any other six-year-old. He didn't have a meltdown; he just got a little squirrelly after a few minutes.

It's not only that he's been happy; he's also been understanding me when I talk to him. I ask him to get his shoes and put them on . . . and he does. Last night I asked him to finish the game he was playing on my iphone so he could go to bed . . . and he finished the last two moves then stood up and walked to his room, then crawled under his blankets.

In stunned amazement, I kept turning to Joe for the next hour and saying, "Did you see that? He went right to bed!"

It's such a simple thing to have a child go to bed when you ask him to, something that I'm sure a lot of parents take for granted. But for Beh, this is giant. Giant.

And just now I walked into his room . . . to find him making his bed.

This is Nick's winter break pattern--he thrives during these downtimes. Two years ago it was during winter break that he figured out how to use words. I know that school will start again next week and that Beh will be mentally taxed. He'll be in a state of sensory overload by the time he gets home and won't be able to process all that I say to him. I know that the joy exuding from him now will be replaced by exhaustion.

So I'm treasuring up in my heart all of these moments of awe. And trying to stop myself from scooping him up in big hugs every five minutes and telling him how grateful I am for these moments (boys don't want moms to interrupt their play that much, after all).

The Other Brother

2011-11-14T15:32:00.000-08:00

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

2011-10-03T20:35:00.000-07:00

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.

Sleeveless

2011-08-30T20:00:00.000-07:00

Today Nick got to have two speech therapists instead of one. The guest therapist, who owns the clinic, came out of the room first. "He had a just phenomena session. He is so adorable--such a calm and peaceful spirit."

Laura, our regular SP, followed with Nick a moment later. "I can see why you say people fall in love with him. He's such a joy."

They were seeing the Nick I see, the Nick so many people have, unfortunately, missed out on.

*********

Last year, in the aftermath of the teacher-abuse incident, the school started sending home daily reports on Nick's day. The forms listed out what he ate, how he focused, when he went to the bathroom . . . and how he behaved. The school tracked every scream, every bite, every scratch, and every time he hurt himself with tick marks on the page. Every day the tick marks were sent home, with comments like "He threw himself to the floor and screamed for no reason" (grr, there is *always* a reason) or "Nick got very upset when we tried to bring him into the classroom and scratched an aide." Perhaps I would've scratched people when they tried to take me back into places where I'd been hurt, too.

But here are some of the notes from Nick's teacher this year:

8/12: "He was very happy and smiling."

8/16: "Good day today. He transitioned well."

8/17: "Good day! Nicholas transitioned very well."

8/18: "Nicholas had a great day today! He is really starting to understand the routine of the day. He is participating in calendar and has done well during math and reading."

8/22: "Nicholas had a great day today. He is doing great during transitions, is smiling more, and participating more as well."

8/23: "Nicholas had a good day today. Did well with transitions today :)"

8/24: "Nicholas had a really good day again today! Nicholas has been doing so well transitioning. He is participating every day at calendar and is doing work at math and writing time. He is still really enjoying tinker toys and playing in the sand."

8/25: "Nicholas had another great day today! He is talking more and seems very happy at school."

He seems very happy at school. That's a sentence I'd never seen, never thought was imaginable.

*********

The proof, though, is in the pudding . . . otherwise known as the squishy part of my arm. It's where Nick takes out all of his frustrations, all of his confusions, all of his fears. When the world has him freaking out, he needs an immediate outlet for all the tension inside, and that outlet is often in the form of an ungodly sharp pinch. My arms were a watercolor of purple, green, magenta, blue.

On the first day of the semester I prepped for it, as always. I pulled together an outfit that would've made Stacey and Clinton proud--fantastic black heels, stylish grey trousers with red and light grey pinstripes, a delightful ruffled red blouse, and of course, a jacket--a grey Anne Klein blazer that I got for under $20! As I drove to campus, I wondered about how often I'd have to take the blazer on and off to get through the day. I mean, my classrooms were in different buildings on campus, and I didn't think I'd want to wear a jacket outside in the 113-degree heat, and some of the classrooms have crappy AC . . .

I looked down to check the damage to see if it was mild enough that a little concealer could mask it if I had to go jacketless during a class, and I was shocked.

There wasn't a bruise. Anywhere.

Sometimes as parents our guts tell us exactly what we need to do for our children, and although something inside us knows, absolutely knows it's the best thing, our minds tend to come in with their sneaking suspicions--what if uprooting the boys is the wrong thing to do? what if this new city won't be as wonderful as I think it will be? But always, it seems, we find in the end that our gut was right all along.

Moving the boys to Phoenix is the best thing I've ever done for them. They are happy, successful, content in ways they never have been before. That's not to say that they don't have bad days--believe me, there have been a couple--but the good is so much better that it has ever been and the bad is dramatically less frequent.

Finally, the world gets to know the happy, sweet Nick I know . . . and I get to go sleeveless to work ;)

The Waiting Room, Redux

2011-07-20T17:11:00.000-07:00

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.

Don't Worry: The Blog Lives!

2011-07-19T13:30:00.000-07:00

So many of you have been asking about why I haven't posted and when I will post again. Moving has sapped up my time and my creativity, thus the lack of posts. But things are returning to normalcy (whatever that is in autism world) so I should be posting again soon!

Ain't Talking 'Bout Love

2011-04-14T12:26:00.000-07:00

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

2011-03-30T17:19:00.000-07:00

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.

The Photograph

2011-03-18T10:06:00.000-07:00

I needed a picture of the chumba cat. Beh's kindergarten class is studying animals right now, and the teacher asked for us to send in pictures of our family pets.

I figured Noah's photo album was the best place to look for pictures of the cat, so I went into his room, pulled his album off his bookshelf, and opened it.

A scattering of pictures that he'd never put into the album were stuck in the front. The picture on top was of Beh.

The second I saw it I started to cry.

The picture dated back to the B.A. (Before Autism) era. There Beh was, about eleven months old in an adorable blue and red striped baseball outfit, standing in the kitchen. He looked right into the camera, smile beaming.

He was looking at the camera, smiling.

He doesn't do that anymore.

Now I chase him around for half an hour, snapping picture after picture, hoping to get one where he happens to be looking up. Such a picture is rare.

I'd forgotten that there was a life before autism, a Beh before autism, until that picture reminded me.

For a year a had Beh. All of him. Unclouded by autism. For a year I did.

I'm so thankful for that year, but I wish then that I'd known it was going to be the only one we'd have before autism came in with its ice storms. I would have spent less time striving for perfection in my graduate courses; actually, I would have dropped out of school completely. I would have spent more time sitting on the floor with Beh, playing with stuffed animals. I would have spent more time playing peek-a-boo. I would have spent more time staring into Beh's eyes if I'd know we'd spend the next five years trying to re-teach him to make eye contact. I would have told Beh a million times a day when he could hear me, I mean really hear me, that I love him.

I miss him. I accept him for everything that he is without waiver, but I miss the boy who didn't have to struggle every day to climb over the wall of autism.

A Tough Mom Day

2011-01-06T13:07:00.000-08:00

Nick has come so far in the past three, almost four, years since he was diagnosed with autism. He went from not being able to communicate at all, to communicating with PECS cards, to finally using words. He went from not seeing me at all to staring into my eyes. He went from not wanting to be with others at all to wanting to snuggle with me all the time. He's a different person than he was when he got diagnosed. He's in our world now instead of lost in his own.

And I'm so freakin' proud of him. If you've read this blog, you've seen it. Every little step is a giant triumph. My beautiful boy is struggling through something more daunting than I can fathom, and he's persevering. To be five years old and have to work so hard all the time, to have your mom carting you to therapists, to have other therapists showing up at your house . . . it's so much to ask of a child. But he does it. For about forty hours a week, he does it.

All the time I'm focusing on how far Nick's come rather than how far behind he is. Well, almost all the time. Every now and then something intrudes and reminds me of how far we have to go . . .

Today I got back the results of Nick's most recent speech evaluation. I was really looking forward to the numbers because I wanted to see quantified just how far I *knew* he'd come. On his last eval three years ago, most of his scores where in the 6-9 month range. That was when he was two. He's worked so hard and grown so much; I knew he'd jumped far beyond that. I just knew it.

I read the black letters on the blinding white screen:

Interaction-Attachment: 15-18 months

Pragmatics: 18-21 months

Gesture: 18-21 months

Play: 18-21 months

Language Expression: 12-15 months

Language Comprehension: 12-15 months

I know they are just numbers. I know. I know that numbers cannot accurately represent the awesomeness of my child. I know. But to see my almost six year old labeled as being at the level of a one year old . . .

I just sobbed. That's all I could do.

The last part of the report, though, was worse than those cruel numbers.

Nick's issues are too severe. The speech therapist doesn't want to take him on as a client because his autism is too severe.

God, I hate this town. I hate that I live somewhere where there is such a shortage of speech therapists that they can pick and choose who they want to work with, and they pick and choose the easy clients. I hate that the children who need therapy the most are unlikely to get it. It seems so unfair and cruel that a beautiful boy who is working so incredibly hard hasn't had a speech therapist for six months because of the shortage, and when we finally found someone who had a couple openings in her schedule, she didn't want to take him on because he was too much of a challenge.

It's a tough mom day today. I feel adrift, nothing to cling onto. I think the numbers, as hard as they were to read, would have been tolerable if I knew I could get speech services to help Nick work on his delays. It's just hard knowing that he's struggling so much . . . and there's no therapist who wants to step in and help him.

So I'll sob a little more today. And then tomorrow, the sun will rise again, and I'll put on my big pants and make a new plan for Nick. I'll keep him moving and growing; I promise him I will.

When the right person comes along

2010-11-30T15:21:00.000-08:00

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

2010-11-03T09:51:00.000-07:00

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

2010-11-01T16:49:00.000-07:00

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

2010-10-29T18:27:00.000-07:00

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

2010-10-23T22:38:00.000-07:00

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

2010-10-19T08:37:00.000-07:00

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

2010-08-11T12:07:00.000-07:00

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

2010-08-09T00:02:00.000-07:00

"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

2010-07-29T20:17:00.001-07:00

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

2010-07-20T14:56:00.001-07:00

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

2010-07-18T18:33:00.000-07:00

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

2010-06-28T12:43:00.001-07:00

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

2010-06-22T22:14:00.000-07:00

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

2010-06-11T18:31:00.000-07:00

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

2010-06-09T23:56:00.000-07:00

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

2010-05-21T19:49:00.000-07:00

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

2010-05-09T16:38:00.000-07:00

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

2010-05-05T18:51:00.000-07:00

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

2010-04-11T21:44:00.000-07:00

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

2010-02-10T06:52:00.000-08:00

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"

2010-02-01T19:27:00.000-08:00

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

2010-01-29T21:30:00.000-08:00

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"

2010-01-27T14:47:00.000-08:00

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!

2010-01-17T21:53:00.000-08:00

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

2010-01-15T11:17:00.000-08:00

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

2010-01-04T16:24:00.001-08:00

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.

Winter Break Makes My Brain Hurt

2009-12-29T18:27:00.000-08:00

Ahh, winter break, a break from the scholarly life and a chance to kick back a be a mom, and nothing else.

Ow, does it make my brain hurt.

Noah has been asking me questions all week, the kinds of questions that feel a lot more challenging than the ones I got thrown at me during my comprehensive exams. Because at least those questions were limited to a specific field of inquiry. Noah's questions are from all over the place.

Just today he was asking what another word for "superstition" was. It threw me off a bit. I mean, first of all, what eight-year-old child is concerned about synonyms, and why did he need a synonym for that word, anyway? And what would the synonym be?

Tonight we were driving back home from some big excitement--we drove the car through the car wash, and Noah thought it was *just* like a storm--when Noah started asking questions again.

"Mom, how old were you nineteen years ago?"

Oh, frick, I had to count. How old was I now, anyway? Take away ten, then take away nine, and . . . "Seventeen."

"Did you have a boyfriend?"

Hmm, wasn't expecting THAT one. "Yes."

"What was his name? Wayne?"

"No, honey, I didn't even know your daddy then."

"So what was his name?"

Oh, frick. How the heck do I answer this one? It was my senior year of high school and I'd sort of dated several people that year, though it was innocent enough. I began the awful task of counting back. Let's see, I'd broken up with Robert a few days before my seventeenth birthday, so he didn't count, and started dating Joe right before I broke up with Robert (I know, I know, I feel bad about the timing) . . . then I think there was Lee . . . then Joe . . . then Matt and Nicco . . . then Joe . . . then Bill.

Yeah, I wasn't at all ready to explain such teenaged-girl capriciousness to my son, so I picked my two favorites and gave my son their names.

I braced myself for the next question, fearing what he might come up with.

"Did you graduate from high school that year?"

"Yes," I breathed a sigh of relief, happy to have a question about my academic self because that's the realm where I always have the answers.

My Best Christmas Gift

2009-12-24T20:40:00.000-08:00

It's Christmas Eve, which means I have yet to open all the packages underneath the tree. I don't know what rests in the boxes and bags, but whatever is there, it can't be better than the gift I already got.

My little boy is celebrating Christmas with me, for the first time.

Nick is almost five, but he's never really celebrated Christmas. Sure, Christmases happened around him, but he never took part in the celebrations. I'd take his hands and make him place ornaments on the tree. I'd take his hands and make him tear wrapping paper off his gifts. I tried to drag him along into the celebration rituals, but he seemed a bit oblivious to it all.

This year, though, Nick is there with us, really there. This Christmas Eve he's done so many of the things that, well, most any kid would do on Christmas.

It started with a present from Grandmother. He looked at it for a bit, and then he did something that any sneaky little kid would try to do--he started to rip it open. Silly, sneaky boy!

After the sun set we took a walk around the neighborhood to view the Christmas lights, and he looked at them in excitement. Before we came into the house, I took him to sit in front of the blinking snowflakes in our own yard. "Look," I said, "look." And he did. He looked and laughed and enjoyed.

We came into the house and I plugged in a string of lights that drape our living room wall. Nick's eyes lit up. "Look," he said, "look."

After that we brought out a cake. It's a ritual that Noah insists we keep--we have a birthday celebration for Jesus since, after all, Christmas is Jesus' birthday. We sang "Happy Birthday" and when the song ended Nick spoke some words, slowly, laboredly, as if it took a lot of thought to get them out. "Happy . . . birthday," he said.

When the birthday cake plates were finally cleared from the table, Noah decided he wanted to hang a few more Christmas ornaments. Noah pulled out five glittery silver balls and started to hang them. Nick came over and, without anyone's interference he picked up one of the balls and carefully hung it on a tree branch, then reached down to grab another and carefully hung it on a branch.

I started to cry.

The best Christmas gift isn't something that has wrapping paper or bows; it is being able to share Christmas--really share it--with both of my boys.

Sticks and Stones

2009-12-12T14:22:00.001-08:00

Words are nothing, these tiny units of sound. Except, they are everything. They reflect and create our realities. They include and exclude people.

Some have said that disability rights is the last great civil rights battle to be waged. Over the decades we've seen women and people of color and people of a variety of sexual orientations make progress in the civil rights arena. Those gains have been reflected in the language our culture deems acceptable. In a staff meeting, it would not be acceptable to call a female colleague a bitch, or refer to an African American colleague with the n-word, or to call a gay colleague a fag. Yes, such horrible language can still be heard behind closed doors--a sign that these groups are still marginalized and that we need to continue to work for equality--but in our public personas, we know such language is not okay and so we don't use it.

I wish that we had such critical awareness of the language we use to address people with disabilities. Because I have been in staff meetings where colleagues used the word 'retards,' and no one seems to cringe the way they would have if someone had used a racialized term or a gendered term.

My sons have autism, something you certainly know if you've read this blog even once. They are not typical, and yet I do not see them as disabled. They are both incredibly abled, each in his own way. Nick is a gifted builder and mathematician. Noah is a gifted linguist and scientist. They are incredibly abled.

And yet they are different. The icon of the autism community has been the puzzle piece, as if people with autism are a bunch of puzzle pieces that need to be put back together (or fixed) in order for them to make sense. My sons aren't puzzles; they are complete and full human beings . . . the rest of the world just, far too often, fails to stop a moment to look at them and see who they truly are.

So often others focus so much on how different my sons are that they fail to see how similar they are to the rest of us--they are human beings with emotions, desires, and hurts.

Perhaps it's that difficulty of seeing the similarities between "us" and "them" that makes it okay in our culture to use disparaging language to describe people who are differently abled. I mean, "we" don't see "them" as like "us," as human, so we can't fathom that "they" would have emotions and desires and hurts. Sticks and stones can't hurt them.

It's not just college staff meetings where that language pops up. It pops up in elementary schools, too. There's a girl at Noah's school who has picked up on his differences and calls him "freak."

Think about that word. Does it shock you? Unnerve you? Maybe a little?

But not as much as if someone had called him the n-word, huh.

We still have a cultural tolerance for disparaging labels applied to people who are differently abled.

Here's the thing, though. The words hurt. Even if they are culturally acceptable, they still make my son cry. They reflect and create our realities, making a world that makes it okay to categorize others. They include and exclude people, cementing the categories of "us" and "them." They focus on what makes someone different rather than the so many things we all have in common.

We need to be conscious of our language. Disparaging language is not okay. And I'll fight to make sure that someday words like 'retard' and 'freak' will someday become as unacceptable as racial slurs.

Yay for tattling!!

2009-12-06T16:11:00.000-08:00

Tattling is typically one of the most annoying of children's behaviors. Ugh. Who wants to hear, "Mommy, so-and-so did such-and-such!!!" over and over again?

Me, apparently.

Today Nick and Noah were in my room. Nick loves my room--he's always jumping on my bed, snuggling in my blankets, or harassing the cat who co-inhabits the room with me. Noah finds the room less thrilling . . . except for when his little brother is in there, for all big brothers like to taunt their little brothers every now and then.

I heard crying and did the mommy-sprint to the room. Noah was on the floor; Nick was on the bed, holding his hand and crying. Usually I'd ask Noah what happened, since Nick is pretty much non-verbal. But Nick came over to me, crying still. He lifted his hand up to me and said, "Noah B."

Nick's first time narcing on his brother. I love it :)

From "phew!" to more work

2009-11-14T14:29:00.000-08:00

My project this fall has been to get Noah ALTCS approved (which would mean that Noah would get federal dollars for autism services). Sure, I've been through the ALTCS hoops with one child already, but it was so much more of a pain this time around, for two reasons 1) it's budget crisis time, so no one wants to approve new spending, and 2) Noah is no longer preschool-aged, which means the approval criteria he has to meet is much more strict.

It's been arduous trying to get him approved. SO much paperwork to compile. Oh, and the school wasn't incredibly helpful, making me wait for the new evals and IEP that the ALTCS worker kept nagging me for.

But it all paid off! Noah was approved for ALTCS this week! Phew.

Except . . . I talked to Nick and Noah's AWESOME DDD case manager Friday and realized that the approval just means it's time to work on even more stuff. We need to try to get Noah approved for specific hours for services now, which means a new ISP meeting and a habilitation plan submitted to tech review and all sorts of other goodies . . .

The work is so worth it, though. Did you know that the cost of caring for someone with autism over a lifetime is about $3.2 million dollars, according to the Harvard School of Public Health? Holy expensive! Noah's ALTCS approval means that we'll get financial help with his medical and therapy costs, which is miraculous. Thank freakin' God.

Nick's EEG

2009-10-30T11:39:00.000-07:00

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

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

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

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

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

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

Immense Contentment

2009-10-15T12:52:00.000-07:00

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

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

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

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

That's all.

Sometimes the universe gives you just what you need

2009-09-27T13:05:00.000-07:00

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

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

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

Yeah, my battery decided it was done.

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

No.

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

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

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

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

2009-09-23T23:09:00.000-07:00

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

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

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

Yay for comps.

Deceitful Nostalgia

2009-08-28T09:21:00.000-07:00

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

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

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

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

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

Then I left. Quickly.

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

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

No Dogs Allowed

2009-08-23T14:22:00.000-07:00

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

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

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

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

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

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

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

Snoopy needs to be allowed in the building.

Crying over class postings

2009-08-03T19:08:00.000-07:00

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

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

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

I cried.

***********

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

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

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

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

Ooops

2009-07-31T14:28:00.000-07:00

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

The Power of Teachers

2009-07-23T10:10:00.001-07:00

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

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

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

He's simply brilliant.

He also happens to have disabilities.

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

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

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

She'd defeated him.

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

Writing a love letter in a coffee shop

2009-07-19T17:04:00.000-07:00

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

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

WTF.

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

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

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

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

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

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

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

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

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

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

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

Yeah, f*** the IRB paperwork.

Kitty White

2009-07-18T17:45:00.000-07:00

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

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

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

"Mommy loves you so much, Nick."

"I miss you."

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

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

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

"Kitty White. Kitty White."

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

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

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

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

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

Repeated messages

2009-07-13T12:16:00.000-07:00

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

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

"I've missed you."

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

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

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

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

(Denise puts aside blogging to call a friend.)

This is autism too

2009-07-05T15:04:00.000-07:00

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

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

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

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

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

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

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

A Land Flowing with Milk and Honey

2009-06-28T16:23:00.001-07:00

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

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

Autism Heaven on Earth.

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

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

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

Dx soup

2009-06-26T13:32:00.000-07:00

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

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

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

Sensory Integration Disorder, which I already knew.

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

The other two were new, though.

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

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

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

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

Apparently, I have a dangerous pelvis

2009-06-19T13:05:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

Mean Sarah McLachlan Makes a Boy Cry

2009-06-13T14:11:00.000-07:00

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

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

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

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

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

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

2009-06-09T21:36:00.000-07:00

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

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

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

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

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

Spidey Heart

2009-06-09T15:05:00.000-07:00

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

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

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

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

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

Wow. Much weightier than I had expected.

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

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

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

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

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

I wanted to cry, too.

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

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

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

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

2009-06-08T20:26:00.000-07:00

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

It was tranquil. So different from my day.

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

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

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

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

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

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

I was pissed.

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

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

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

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

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

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

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

Yeah, she didn't come today.

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

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

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

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

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

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

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

My take on "curing" autism

2009-06-05T19:56:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

How autism has made me a better me

2009-05-28T19:18:00.000-07:00

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

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

Um, can you say anal?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Return of the Leash Lady

2009-05-21T08:49:00.000-07:00

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

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

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

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

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

LANGUAGE!

2009-05-15T17:57:00.000-07:00

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

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

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

Holy cow!

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

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

Three new words in less than five minutes.

That's just freakin' huge.

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

2009-05-13T08:13:00.000-07:00

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

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

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

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

Doctor Day

2009-05-12T14:28:00.001-07:00

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

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

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

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

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

I'll leave you all on that lovely note.

Mothering and the Academy Don't Mix (?)

2009-05-08T09:05:00.000-07:00

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

Hah.

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

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

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

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

Not good.

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

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

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

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

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

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

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

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

Oh.

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

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

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

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

In theory, it sounds ideal.

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

Tha Vagabond Blogger

2009-05-06T10:45:00.000-07:00

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

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

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

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