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.

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. 

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.

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.

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?  

About a year ago I bought this bracelet at the Autism One conference.  

A friend had a similar bracelet that had caught my eye.  I know there are some people that really don’t like the autism puzzle piece symbol, but I really do – for me it’s a subtle reminder of the unique makeup of our little guy and how much the whole process of figuring him out has been – and will be – a puzzle. 

So, I found this bracelet and I made a deal with myself.  As long as Sam carries his autism diagnosis, I will wear the bracelet.  It doesn’t come off.  When (I’m going for when – not if …) Sam loses the diagnosis, I’ll put the bracelet in my jewelry box, just as a reminder of where we came from and how the pieces fit together for his recovery.

And it hasn’t.  Until my own bout with medical mysteries came into play. 

Several weeks back, I started having some weird pains in my arm.  Thinking I had a pinched nerve, I went to see the doctor, who ultimately ordered an MRI to make sure there was nothing more nefarious going on beyond a pinched nerve.  Never having had one, I wasn’t sure what to expect.  Admittedly, the nurse who called me for pre-procedure details, as well as the intake person at the hospital, had me a little nervous in asking questions about what metal I might have IN my body (having treated myself to braces for my 40^th birthday, I was a little apprehensive about how my teeth would fare in the tube).  I never thought about the metal I had ON my body.

I got to the hospital, was adequately assured that my teeth would not be affected by the magnets, and was given some comfy scrubs to change into before the complementary massage before and movie viewing I’d have in the machine.  (Talk about perks to keep you inclined to go to one hospital over another!)  And it was only when the nurse told me I had to remove all my jewelry – and pointed to my bracelet – that it dawned on me that I was going to have to take it off.

For a few moments, I was more than a little distraught.  I had made a deal – even if just with myself (perhaps it was because it was with myself) – that I wasn’t going to remove that symbol of this fight until we’d reached the end goal.  It was like I was giving up that fight by taking it off. 

It was only a few moments because it didn’t take long to realize that I didn’t actually have much of a choice in the matter.  There was big old magnetic tube with my name on it that didn’t really care who I made a deal with or promise to.  It was a silly little bracelet that needed to come off for this test I had to have.  (And which, by the way, was the first thing back on when I came out of the tube.)

But it isn’t just a silly little bracelet.  Not to me.  It is a reminder to me of what it is we’re working for every day, even when he’s not around.  When Sam’s at school, it’s with me.  When I’m away on a business trip, it’s with me.  When Sam’s sleeping and I’m lying awake not able to shut off the thoughts in my head, it’s with me.  It’s not him.  But I can look down at my wrist anywhere I am and know that he’s with me and I’m not giving up his fight.

Taking it off, however, was necessary because I refuse to give up that fight.  It’s so easy for any parent to fall into the trap of failing to take care of yourself so that you don't have the ability to care for – and fight for – your child.  I think that’s even more true when that parent has a special needs child.  You sacrifice your health, safety, and even sanity to fight for your kid.  And you don’t think twice about it. 

Until it catches up to you.

Now I was fortunate that my issue ended up being nothing more than arthritis in my neck – which likely comes from too much work on laptops and iPads.  But it was a real reminder that I have to make sure I’m taking care of myself in order to be able to take care of Sam. 

So, I will be trying to do just that.  Taking steps to make sure I’m maintaining my physical, mental, emotional well-being so that I can continue on this fight for Sam. 

With my bracelet on…

Last week we passed a milestone.  An anniversary.  One more day.  And a few more steps.

We’re now on Day 372.  We’ve taken 8912 steps.  And we’ve still barely started this marathon journey.  It’s now been just over one year ago that we were given the official diagnosis of what we already knew was autism for Sammy.  Not that there’s a whole lot to get all nostalgic about when it comes to this terrible disease, but I have to admit that I’ve spent a little time reflecting this past week about what I’ve learned over the last year. 

Some of it is enlightening.

Some of it is enraging.

Some of it is sad.

Some of it is tragic.

And a lot has just been terrifying.

On day 365, I started jotting down a list of what some of those things have been.  Truth be told, I could probably list at least one thing for every day that we’ve passed.  But that would result in an awful long blog entry – even for me.  So I pared my list down a bit … and here are just a few of the things I’ve learned since starting this journey. 

(It was actually even a whole lot longer even when I first started editing it.  I cut out more than half of my initial word count.  Dang, I wish I was better at this!)

1. I never thought anyone could know so much or talk quite as extensively about poop.  Really.  Poop.  In every form.  At any time.  Although there were times I’ve thought we wouldn’t get through one more day of dealing with Sam’s poop problems, the things we’ve been doing have actually made a real difference.  And his problems are nothing like they were a year ago.  Now getting him to poop in the potty – that one may yet be the death of me.
2. As many troubles as we’ve had, there are so many kids with autism out there that have a ton more gastro and other problems than Sam ever has.  It’s sad.  And terrifying.  Sad because so many kids are suffering.  In pain.  And not even able to tell us about it.  Terrifying because so much of our mainstream medical community is unwilling to acknowledge the problems exist.  Autism is a psychiatric disorder.  It’s not medical.  It’s not physiological.  And there’s nothing we can do for our kids with it.
3. And that is crap.  Complete and total crap.  Just about any parent who has dealt with the medical issues facing a child with autism knows its crap.  And there are numerous, peer-reviewed, published-in-reputable-journals studies that address these problems.  Autism is medical.  And, by treating it as the medical condition it is, many of our kids can get better.
4. There are some wonderful doctors out there, risking, quite literally, their livelihoods and reputations, to help our children.  Many of them have children of their own on the spectrum.  They get it.  These brave souls risk bucking the mainstream medical community by daring to say that our children can get better.  God bless them.
5. The human body is an amazing machine that has a nearly incomprehensible ability to rid itself of environmental toxins and other bad stuff, when it’s not compromised and is working right.  But when we overload a child’s system with toxins, the amazing machine can malfunction, and medical issues abound.  Including autism.
6. Genetics certainly play a part in whether a child’s system can handle the toxins he or she encounters.  But genetics are not the end of the story.  Environmental assaults are also a factor.  And that includes – but is not limited to – vaccines.
7. Sam got the short straw on both fronts.  We’ve learned his genetic makeup makes it very hard for him to get the bad stuff out of his body.  And he got a lot of bad stuff in a lot of vaccines.
8. Diet is huge.  Gluten and casein, for example, are bad for many kids with autism.  They were bad for Sam.  We took them out of his diet and he began talking to us.
9. Research is important.  Really important.  And I have learned that I have little tolerance for people that simply regurgitate what they’ve heard on their favorite morning talk show or from a high profile celebrity as proof that “research shows” anything. 
10. Some people you think you know well will disappoint you.  Some people will amaze you with their capacity for compassion, understanding, and friendship.  I have come to know how to accept and learn from the former and am truly blessed to have a small circle of the latter.

Maybe the single most important thing I’ve learned is just how wonderful and resilient my kids are.  I’m not just talking about Sam here, either.  They each have their own sets of issues we face every day.  But every morning I wake up to a glimmer of hope for what the future holds for them.  And that glimmer keeps us going.  One day at a time.  

We try really hard to make it to church each Sunday as a family.  Often when we get there, we end up in various places and doing different things – I sing, Pete greets or teaches Sunday school, Sam and Zach go off to their classes.  So much like the rest of our lives, we can be pulled in a million different directions. 

We were sitting there on Sunday – one of the rare times when Pete and I were both in the service together at the same time.  (Ok – truth be told, it was this morning.  But I know me and chances are it’s going to be sometime much later than today that I actually get this written and posted, so I thought I’d hedge my bets and not say “today”.)  Our pastor usually has pretty good messages to share.  Admittedly, I’m not always in the frame of mind to hear and appreciate them.  Today (oops – I mean Sunday) was different.

This one was all about looking at life through eyes of faith rather than fear.  Quite apropos, really.  Because last week I’d run the gamut of questions about what we’ve been doing – for Sam, for Zach, for Ben, for ourselves.  What do we try next?  How do we know what’s best? How do we deal with the next “recommended” round of vaccinations for them all?  How do I fight for what I believe is right in the face of so much opposition?  What doctors to see?  What conferences should we go to?  How are we going to afford it?  And with every question is no small amount of sheer terror that recovery won’t come.  That we’ll pick the wrong supplement or therapy.  That what’s next won’t help.  That Sam will regress.  And, you see, those fears have been a part of this journey all year – I think, in some cases, adding delay to decision making, and certainly to implementation.

But as I sat there listening, I knew that this had to be one of those times that I was being smacked with a message that I probably really needed to listen to.  Faith, not fear.  Faith that we’re making the right choices for Sam and the boys – and us.  Faith that we’re not alone in all of this – that there is a plan, even if we don’t know what it is yet.

And so we make the choices, take the risks, not knowing exactly where they will take any of us.  But knowing that if we don’t try, we don’t take the risks … well, that would be the greatest tragedy of all.  We can only overcome the fear that could so easily suffocate us by having faith enough to know that Sam’s future is not yet written.

As I was writing this entry, I kept thinking back to something that I first heard many, many years ago.  Back when I was 16 or 17, a high school friend shared a quote with me that I’ve seen a few times since then.  It’s been attributed to any number of people including Leo Buscaglia, William Arthur Ward, and a host of others.  And it fits so many aspects of my life …

To laugh is to risk appearing a fool.

To weep is to risk appearing sentimental.

To reach out for another is to risk involvement.

To love is to risk not being loved in return.

To live is to risk dying.

To believe is to risk despair.

To try is to risk failure.

But risks must be taken, because the greatest hazard in life is to risk nothing.  He who risks nothing does nothing, has nothing, is nothing.  He may avoid suffering and sorrow, but he cannot learn, feel, change, grow, or love.  Chained by his certitudes, he is a slave.  Only the person who risks is truly free.