The Traditional Mom

It's All About Numbers

The Traditional Mom — Mon, 02 Apr 2012 03:58:57 GMT

Tuesday night I had the privilege of attending my middle son’s DARE graduation at the local high school. I hate to admit that I was more than a little bit preoccupied from all the emails, news tips, and web stories I had seen for the prior couple of days about the CDC’s expected upcoming “big” announcement about an update in autism incidence rates in the U.S. I found my thoughts focused on the kids that were sitting in the bleachers on the other side of the gym floor from me. Watching. Listening. Observing. Based on the then-current CDC rates (which was actually survey data from 2006 looking at kids born in 1998), there were about 4 kids in those bleachers with autism.

I was saddened to observe two young men that I am pretty sure made up half of that statistic in the bleachers. One sat alone, slightly removed from his classmates, rocking slowly but noticeably in his seat. When the kids erupted in applause for the officers leading their program, his hands slapped over his ears and the rocking intensified. A staff member comforted him and he spent much of the remainder of the program staring up at the lights on the ceiling.

A second little boy could not stay still in his seat. Could not – not “would” not. He stood and sat, he moved places and hopped around, he walked up and down the bleacher stairs, and waved his arms when corrected by a staff member. Near the end of the program, he appeared to be counting the treads in the stairs, making his way to the bottom where he hopped and waved his arms more.

Do I know that either of these young men are on the spectrum? Do I know that either or both have IEPs in place to address their special needs in the classrooms of my son’s school? No. But I think the chances are pretty good. And if not the two sweet souls I observed – then, statistically, there were at least two others (four after Thursday’s announcement) I did not. And then there’s my own son…

And I was thinking about a blog entry – and had a couple of lines down on a page waiting for time to finish it, when the CDC made its announcement. 1 in 88. 1 in 54 boys. That’s the “new” number of children with autism. But there’s so many things wrong with that number. It doesn’t tell the true story of the epidemic facing our children.

So what’s wrong with the number?

It’s a survey, rather than a census

The CDC relies on its ADDM Network (Autism and Developmental Disabilities Monitoring Network) – a surveillance system of 14 sites that estimates the prevalence of autism among 8 year olds. Estimates. Based on 14 states. 8.4% of the U.S. population of that age group. That’s it. And that’s the rate that’s set. Apparently, the CDC thinks the other 91.6% of the U.S. population of 8 year olds doesn’t count. Every child in every state should count. A sample is not representative unless it is actually indicative of the population as a whole – and the CDC’s measurements are not.

The data is old

The 1 in 88 number is based on a survey of 8 year old children from the ADDM sites collected in 2008. Apparently, the CDC thinks the last four years don’t count in setting an incidence rate for today.

The surveyed age is old

Eight year olds in 2008. Children born in the year 2000. Apparently, the CDC thinks children born since the year 2000 don’t count in setting an incidence rate for today.

By extension, apparently the CDC thinks that Sam does not count.

So what does the number tell us? That, despite the problems with the number itself, one thing is crystal clear. It is skyrocketing. A roughly 78% increase (according to the CDC itself) in just six years. Extrapolate those numbers (see that here) and we come to 1 in 69 of the kids sitting in those bleachers on Tuesday (two more than what I thought while observing them there). 1 in 37 five year olds like Sammy. Ten years from now, in 2022, we could see autism affect 1 in 9. And those numbers don’t even address the five times greater risk boys have than girls.

That’s not heightened awareness. That’s not over-diagnosis. That’s not genetics.

It’s an epidemic.

Today, April 1^st, marks the start of autism awareness month. At 1 in 88, I think we’re all plenty aware. If autism doesn’t affect your family, you know at least one – if not many families – that it does.

What number does it take to move our awareness to action?

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

This month, at the end of each blog post (and I’ve promised to try to step up my game), I’m going to list a website that I’m going to encourage folks reading my words to take just a few minutes to visit. There are a few strong, vocal, organizations out there that are committed to moving awareness to action. I was fortunate enough to find one of them – TACA - shortly after Sam’s official diagnosis. I am blessed to have found a place where I know I will never again feel alone on this journey – and I want to ensure that TACA can continue to help other families the way it has mine. Please visit this page and consider donating to support families like ours: www.hopeforsammy.com.

Not Born With It

The Traditional Mom — Sat, 31 Mar 2012 02:28:26 GMT

Today is one of those days where I find I have far more going through my head than I can possibly articulate in words. I spent most of the night pouring through news stories and press releases about yesterday’s announcement from the CDC about the current incidence of autism in our country. I read the details about how the CDC came to the new 1 in 88 number - 1 in 54 for boys. I was angered all over again to realize that the new statistic does not even account for my 5 year old little angel or anyone under the age of 8 in 2008. I cried with my friends hearing the “better diagnosis” and “overdiagnosis” claims. Again. I read the continued claims of organizations such as Autism Speaks touting the "it's all about genetics" mantra. All excuses - proven wrong time and again - to hide from the real reasons.

So, last night I had a friend ask me to post the picture Sam as visual evidence that he was NOT born with autism. I found pictures that so very clearly show the change in him.

This is Sam before autism.

This is Sam after autism

My child was not born with it.

I have a whole lot more to say, and more posts will follow - but, for tonight, my heart just hurts. For Sammy and all the children like him I've come to know ... and for all those we know will follow.

Rock Star

The Traditional Mom — Mon, 26 Mar 2012 02:55:22 GMT

Sammy is a rock star.

This we already know. He’s fighting a battle that we can’t even comprehend. Each and every day he fights. With a smile. With laughter. With temper tantrums and meltdowns, too. But he keeps going, and we do, too.

You can even ask him. He has a little routine, usually with his dad, but sometimes I can pull it off, too. We say “Sam Elliott” (with a little emphasis on the first syllable of Elliott), and he responds with “rockin’ the universe.” He’s pretty dang cute.

And a rock star.

But he’s on his way to being a little tv star, now, too.

A few weeks ago we learned that the school he attends, the Applied Behavior Center for Autism, was going to film a commercial to air in April and Sam was to be part of the filming. He was excited about the cameras and talked about it for days.

In the spot, he is with one of his little buddies in the “make friends” section (he’s the little guy in blue). And he has. He’s made great strides – and works every day to make more.

Rock star. TV star. My star. Every day.

Overdose

The Traditional Mom — Wed, 21 Mar 2012 03:14:24 GMT

I generally try pretty hard to find the positive take on things I’m writing about. I could sooooo easily get caught up in all of the things in the world that make me sad or angry or frustrated … I think I could probably write a lot more – and more often – about those things. I was just having a discussion today with a friend that kindly (or foolishly) asked me my opinion on a hot topic and I think I said at least twice that I needed to get off my soapbox and stop talking about it … and kept right on going. Maybe it was three times. Or four.

Anyway, I eventually did move on and thought I was done with my soapbox(es) for the day.

I was wrong.

Part of why I started writing this blog was to help me think about the positive things we see with Sam – the baby steps of progress that give us hope, the smiles and words that just melt my heart, the reminders of what it is we’re fighting for – and why we won’t give up. And although I try – for my own sanity – to focus on those things more when I’m thinking about something I want to write, I realized today (if it hadn’t been clear to be before) that I just can’t always keep to the upbeat. Because sometimes the enraging things out there weigh too heavy on my mind.

Tonight, a news story just pushed me over the edge. Or, well, back up on a soapbox.

The headline that caught my eye was “Advocates, Big Pharma Make Push for Autism Drugs.”

My first thought was that this can’t be real. But sure enough, it is real. $38.7 million dollars worth of real. And it’s being spearheaded by Autism Speaks (which calls itself the “world’s leading autism science and advocacy organization” in its press release yesterday about the project) and not one, not two, not three, four, or five, but at least SIX major pharmaceutical companies including ones that have made untold billions on vaccines and the single company holding the patent on Thimerosal. And they plan to establish a “research network that can then move on to testing the investigational treatments in humans.”

The AS press release quotes Robert Ring, its VP of Translational Research, stating “The lack of effective pharmacological treatments for ASD has a profound effect of patients’ lives. We are excited that with this unique collaboration we may see a real shift in future treatment for this devastating disorder.”

Pardon my bluntness, but it is about time someone calls bullshit.

$38.7 million. For more drug development. For more human experimentation. For more assaults on the fragile and damaged bodies of vaccine-injured children.

Why not spend just a little of that $38.7 million on real studies comparing autism rates in vaccinated vs. unvaccinated children? How about just a little more to study the effects of multiple and combined injections? Or a little more to study the effects of adjuvants in the immunizations on children with family histories of auto-immune disorders?

Oh wait – that’s right – those studies would not result in the next miracle drug that could add a zero to the companies’ profit lines. Those studies might actually reveal a cause of this devastating disorder that might make the world rethink the billions made from the government-mandated vaccine schedules of today. Those studies might actually help us prevent further escalation of this epidemic.

God forbid we study prevention when we can develop more drugs for greater profit.

So, tonight, I’m not upbeat and positive. I’m having trouble finding the good in this one. I’m disappointed that the “world’s leading autism science and advocacy organization” is not, in my opinion, advancing science or advocating for our children with this new-found partnership.

Borrowing a line from a comment posted on the story I read - you cannot cure a thing with the same thing that caused it. But apparently they're about to try.

Change is Good

The Traditional Mom — Sun, 18 Mar 2012 02:23:26 GMT

I’ve learned to be a real fan of change. Change in behavior, that it. Sam’s, in particular. Change means something is happening. Could be something good, could be something bad – but in this marathon, something, which is the opposite of nothing, means progress. And the something that’s happening doesn’t necessarily correlate with the change in behavior. By that, I mean that “bad” behavior changes doesn’t mean that the underlying changes going on in Sam’s body are necessarily bad.

A few weeks ago we began a new supplement with Sam – a topical glutathione. He got used to having it applied (twice a day) pretty quickly. He now refers to it as his “skins.” He even helps us remember it when we forget … still very much a routine-oriented guy.

So, a week or so into the new treatment, we started noticing a pretty substantial change in his behavior. Although always a pretty active little guy (at least since we’ve gotten the worst of his GI problems under control), the increase in that activity has been completely over the top. We actually had one night of watching him run circles around the kitchen – literally – a complete circle around the island and table, covering nearly all the open space that little room has – 16 times before I physically picked him up and took him up to a bath … where he found a way to get more of the water out of the tub than what was in it.

We weren’t sure where all the hyperness was taking us – and weren’t sure we were going to be able to keep up. Knowing that the only thing we’d changed was adding the glutathione, we started to wonder if we were going to need to stop it to curtail the behavior.

And then we started noticing … Sam’s conversing was getting a little more complex … he was telling us more details – often spontaneously – about his day and the activities he was doing with his friends … we moved from Curious George to Little Einsteins (I was starting to hate that monkey) – and he actually began applying some of the concepts from the show to other things in his environment. Appropriately.

It was such a “wow” moment for us when we realized the changes were actually really good – despite the negative behavior we’d seen surface. Tonight we even got his first attempts at bathroom humor - comparing his underwear (which we didn't realize until later had ended up in the tub full of bathwater) to everything from a shirt to a big blue elephant. Not ever something I imagined being excited to hear, mind you, but he was trying to be funny – and cracked himself up. Us, too.

It was a beautiful sight.

Change is good.

I Still Need to Write More

The Traditional Mom — Fri, 16 Mar 2012 03:21:56 GMT

Last week, Pete and I had a little disagreement.

About my blog.

In all fairness, he was trying to be supportive and encouraging. He was, in fact, very complementary – telling me that my entries were engaging and well written. But that I needed to write and post more often.

“Well, yeah.” I said. “And I just have so much time for that.” Snarky. While I was playing a new game on the iPad.

It was addictive. Really addictive.

And, okay, he wasn’t – isn’t – wrong. But the disagreement part was more about how I needed to go about not blowing that New Year’s Resolution and really writing more. My real challenge is that I seem to get hung up on being introspective and “deep” – although an awful lot of what runs through my mind seems to fit that description, I have a hard time getting those thoughts out of my head and onto paper (well – a monitor, anyway).

Pete’s suggestion was to break things down more – quick hits, shorter stories, less introspection, more entries.

But I just don’t know if I can do it. This blog is my escape. My diversion. A place where I can be deep and sappy and dreamy – and it’s all ok. Because it’s about what I see … feel … believe. And, most times, all those things end up taking a lot more space on paper than in my head. But I do want – I need – to write more…

Although I am quite sure I’m not going to get away from the long and not-so-concisely-worded entries, I’m going to at least try to take Pete’s advice to heart and not always wait until I have a 1000 word thought or story to put to print. In fact, there’s so much that we’re seeing with Sam – and his brothers – every day. And so much I see from others that inspires me, infuriates me, or just makes me cry, that there’s a lot more I could be writing about. So I’m going to try.

It is supposed to be cathartic, after all. Who doesn’t need a little more catharsis, right?