All Rileyed Up

Talk About Curing Autism, or TACA, is a support network for families affected by autism.

Where is My Brother? is doing a giveaway to encourage people to donate to a cause. And how cool is this – she’s giving away kimonos! Did you know that for my whole life, I have always wanted a kimono? Really. It’s true. If I win it, I’ll post a picture of myself wearing it. Unless the picture comes out bad. In which case, I’ll have my son draw a picture of me wearing it, and I assure you, the likeness will be impressive.

Anyway, rules are easy enough. Make a donation, then leave a comment on her post letting her know you donated.

(P.S. Should you choose to donate, and then win my desired kimono, just know — I can be bartered with.)

Recently, two celebrity remarks have generated buzz in the autism community—

Actress Amanda Peet said in Cookie magazine: “Frankly, I feel that parents who don’t vaccinate their children are parasites.”

Radio talk show host Michael Savage said: “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”

Peet apologized, and said, among other things, “I still believe that the decision not to vaccinate our children bodes for a dangerous future. Vast reductions in immunization will lead to a resurgence of deadly viruses.” and “In the fifties, vaccines were recognized as life-saving. My mom had polio and was quarantined when she was 6 years old. It’s so hard to appreciate vaccines now that so few children are dying from preventable diseases today, but that could all change if we’re not vigilant.”

Savage and his network have apologized, and defended his remarks with “Dr. Savage [according to Wikipedia, he holds a PhD in nutritional ethnomedicine] has clarified that his July 16th statements concerning autism were not directed at those who are in fact challenged by this horrible affliction, but were instead addressing efforts to broaden the concept of autism beyond those who truly are autistic to a broader “autistic spectrum” of behavioral symptoms which are also manifested by persons who do not suffer from autism, and his concern that many children are being misdiagnosed as autistic due to the subjective nature of autism diagnosis (due to the lack of known biomedical indicators, such as blood tests, to definitively confirm or deny the actual existence of autism). Dr. Savage has also explained his belief that there have been efforts by certain professionals and professional organizations to expand diagnoses of autism more broadly, for various reasons, and his concern that this victimizes and stigmatizes children who are misdiagnosed as autistic.”

The apology statement went on to point out that “The purpose of talk radio is to raise the level of public discourse by introducing commentary on controversial issues.”

So the real question is, why didn’t you guys just #@&! say that in the first place?

Commentary on controversial issues does not mean speak like a close-minded jerk. If you wanted to address the concerns of overdiagnosing autism or the importance of vaccines, you didn’t need to classify an entire group of people as brats or parasites to get your point across.

I especially liked (and by liked, I mean rolled my eyes) this blurb from Savage’s network’s statement concerning “his brief 84 seconds of commentary”:

“In the context of his broader concerns, it is clear that Dr. Savage’s comments were intended to suggest his opinion that, in the vast majority of cases, most children throwing tantrums, or refusing to communicate, are not autistic. Unfortunately, by condensing his multifaceted concerns into 84 seconds of commentary, the necessary context for his remarks was not apparent, and the few words he used to express his concerns were, in this instance, inartfully phrased.”

What “vast majority of cases” is he referring to? Children in general or cases of autism? If the former, duh, of course temper tantrums and refusal to communicate don’t mean they’re autistic. Who even thinks that? If the latter, how could he possibly formulate such an opinion without reading enough autism diagnoses to say “a majority of cases.” Here’s the criteria for DSM-IV Autism. Clearly, more than temper tantrums and refusal to communicate are necessary. Is the wording vague? Yes. Is there room for misinterpretation? Yes. Did a neurologist once explain to me that autism diagnosing was similar to art appreciation and that everyone views it differently? Yes. These are very important things to consider if you think your child has autism or you disagree with a DSM IV diagnosis, and I think Michael Savage would agree, but the seriousness of his subject was lost to his “inartfully phrased” comments. Is it just me, or are the words “inartfully phrased” the most ridiculous thing you’ve ever read? He called 99 percent of autistic kids “brats.” That’s not “inartfully phrased.” That’s rude, demeaning, insulting, offensive, generalizing, judgmental… take your pick.

What bothers me about media focal points like Peet said parasites or Savage said brats are the that they bury the real concern – children’s health – under name calling.

I don’t care about Amanda Peet or Michael Savage and they don’t care about me. They will insult me today and apologize tomorrow and I will be no different as a result. We do have a shared concern for the health of children, though. So the next time Peet and Savage have the opportunity to use their celebrity status to bring attention to something important, I hope they don’t waste it on an insult, er, inartful word.

At the beach, it is calm and sunny. The water is too cold for the kids to wade in (this is California after all, where no matter what they say, the water is COLD. I grew up in Florida – that water is warm. This is not), so we sit on the sand and play.

There is a group of teenagers near us. Maybe nine of them. An uneven number of boys and girls. There are two couples, based on their hand holding, their giggling into one other’s shoulders over little inside jokes. The rest of them have that awkward not-too-close-but-close-enough-to- show-an-interest-in-being-closer proximity between one another.

“Can we build sand castles?” The Boy says. I nod. He sits across from his sister and digs into the sand. She joins in. I pull my journal out and note: 5-word sentence; asked to build sand castles; initiated activity with no help from me, sister joined in. Their idea of a sand castle is an anthill-style pile of beach sand. The Boy grabs a stick nearby and sticks it into the top of the sand pile. “I made a birthday cake!” he says. “Let’s sing Happy Birthday.” What follows is a rousing rendition of “Happy Birthday” that ends when he blows out the ‘candle.’ We sing it again at his behest for Little No Limit to have a turn to blow out the candle. And then one more time so that Mommy can blow out the candle. I jot notes on this as well. Imaginative. Concern that his sister and mommy share in the fun. And yet, the neurology clinic determined he had the emotional capacity of a one year old, that he doesn’t do cooperative play, and that he shows little age-appropriate imaginative play.

And I wonder, do these people simply not see him the way I do or am I missing something?

The teenagers shriek with laughter. They have started playing I Never. I used to play it in college. You tell people something you have never done and the people who have done it take a drink. The game starts off innocent enough, “I never rode a horse” or “I never cheated on a test,” but as the drinking continues, so the tastefulness deteriorates. “I never participated in a threesome” or “I never had (insert undesirable position) sex.” And by the end of the game, the most immoral, unethical, or pathologically lying one in the bunch is slobbering drunk (indeed, a FABULOUS party game). These teenagers at the beach play a different version of the game, though. Instead of taking a drink, they are taking one step closer to the cold water. I cannot hear their “I Never” claims, only their laughter when a few of them take steps. Before you know it, one of the guys is in the water.

I look at my children, who are arranging stones around the castle, and consider how vastly different my claims in the world of I Never have become.

I never thought it would be so hard to know whether or not to trust my instinct when my instinct says my children are fine and the doctors who meet with them for a couple hours (with numerous accolades on their walls and unattractive coffee stains on their shirts) toss out a diagnosis that says my instincts are all wrong.

I never thought so many strangers would have such strongly formulated opinions about my kids and their development.

I never thought I’d question myself so many times in a single minute.

I never thought I’d hate the term “special diet.”

I never. I never. I never.

I chuck my pen across the sand. The Boy and Little No Limit both look. Little No Limit says “Pen!”

The Boy gets up, runs to the pen and brings it back. “Mommy. I found your pen.” He says it with such pleasant surprise, I wonder if he remembers I just threw it, but then he says, “Why you do that?”

“I don’t know buddy. I just felt like it.”

He nods very knowingly, then holds his finger up. “Only this time. Don’t do it again.”

Is he aware of what he is telling me, or is he mimicking what I have said in the past?

We build another castle and I look over at the teenagers. Most of them are now either wet or on the brink of getting wet, except for one sweet innocent standing at the starting point. In a white bikini, no less. Have I wandered onto the set of a teen movie? I wonder if she is horrified by what the others have done that have led them into the water, if she thinks they have made many mistakes or if she wonders why she hasn’t done more, lived more.

I have no dissatisfaction over how I’ve lived my life. I’ve done a lot of things, moved on a lot of whims, and enjoyed life. Sure, I’ve made mistakes. I’ve learned from them and moved on. And it’s been great. But now, for every mistake I make, my kids are directly impacted.

And I fear I am on the brink of making huge mistakes.

I’ve been a mother for five years and I feel something I’ve haven’t felt in years. I don’t know how to trust myself anymore. I don’t know who to believe.
The teenagers are squealing with laughter because one of the guys picked up the good girl, and dropped her in the water. Okay, I guess I am on the set of a teen movie. The girl gets out, laughing, and pushes the guy. She says something and everyone laughs. They make their way back to their spot and grab towels and dry off. They walk back to the parking lot.

The Boy is still piling stones around his anthill sand fortress that now has three feathers stuck in the top. Little No Limit has taken the stick/original birthday candle to draw circles in the sand. After completing each circle, she looks at me and says, “Circle!” (Irkel!)

A flock of birds glide by. The kids both stop what they are doing to stand up and watch them. Then Little No Limit starts running after them, shouting “Birds! Birds!”

“Hey!” cries The Boy. “Don’t do that! Mommy, she’s running away!”

I get up and run after Little No Limit, who has managed to cover quite a distance for such little legs. I bring her back and a new sand castle is in the works. Another anthill style castle. Another feather sticking out the top. Another circle of rocks surrounding it. Repetitive behavior trait? Typical kid behavior? I pull out my notebook and add it to my observations.

I can hear the teenagers drive away. They beep their car horns at one another. Laughter escapes from their open windows. See you at so-and-so’s! I wonder what they will do tonight, who will end the night laughing and who will end the night crying, because they’ve added another moment to their life that will put them one step closer to the water in the next round of I Never.

I flip back to the other page where I had written down my I Never claims, and add one more.

I never thought I’d be that vulnerable again.