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Hope for Sammy – 2013

It’s that time of year … time to realize how long it’s been since I’ve put any words to the computer screen … and our annual TACA campaign.  I’m going to – GOING TO – get back to blogging, but in the meantime am putting this video up for Sammy’s TACA campaign.

I’ve never been much of a fundraiser.  I know how tough times can be and how hard people work for what they have.  And I’ve always struggled with asking for precious financial resources.  But, for us, this one is different.  It will not likely be anytime soon that Sam will be selling popcorn or wrapping paper or cookie dough or any of the things that we regularly buy to support fundraising efforts for family and friends.  But he will running this marathon for a long time.  And our family will be helping and supporting other families through each day of this race – and beyond.

So – here’s what I’m asking…  View the video.  And think of Sam, our family, and the thousands upon thousands of other families that have started on the autism journey – some with much less hope and support than we’ve been blessed to have.  Then go to Sam’s fundraising page and make a donation.  In honor of our family.  In honor of Sam.  To help all those families TACA supports now.  And all those families yet to come.

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Civility, Please!

I have a heavy heart today.  Well, it’s been heavy for a couple of days now.  Quite simply, I get so tired of reading, watching, and hearing the level of incivility that seems to so pervade the debate surrounding vaccines.

I stumbled upon an article that was written by a mom and a concerned citizen cautioning parents to understand the risks taken in vaccinating, particularly with the current CDC recommended schedule:

Click here for the article

I happen to agree with the author.  However, I certainly recognize (whether I agree with it or not) that there is another side to the debate.  The hostility and name calling HAS to stop … but I’m not holding out hope that it will any time soon.

I am holding on to the hope that someday we will see real studies that test the appropriate factors to determine what role vaccines have in autism and the myriad of childhood illnesses and disabilities that are unquestionably skyrocketing.  I have to have that hope.  I don’t usually comment when I read all the flying insults and anger on these types of articles, but I couldn’t help myself on this one … Here’s my comment:

Wow.  All I can even bring myself to say anymore is wow.  For two days I’ve read the comments made on this article.  And, although I imagine by now I should not be, I continue to be shocked at the accusations, anger, and downright contempt that is so often shown by people on both sides of this debate.  I don’t begin to have all the answers – but no one else does, either.  But the lack of civility, and sometimes simple humanity, that is bantered about is so darn tiring.

Before I comment further, I have to say please go ahead and prepare the insults and allegations against me, my physicians, my beliefs that as an American I have an inherent right to, my choices, and my child.  Because I am the parent of an amazing little boy who was vaccine injured (whether you choose to believe so or not – which is certainly your right, as well).

For those who question – I have done the research, along side both mainstream physicians and autism specialists, to see the negative medical effects that resulted from his vaccinations.  Yes – we’ve scoured the medical records to be able to clearly identify a shot, followed by an adverse reaction.  More than once.  Following his diagnosis, we had genetic testing done.  We did not know to do so before he was injured.  And that genetic testing revealed abnormalities that made him more susceptible to toxins that exist in vaccines (please don’t debate the point that toxins exist in them at all – even the CDC, NIH, and pharmaceutical companies state that they exist, even though the possible negative side effects of those toxins are certainly in dispute).  And all of the docs we’ve seen have agreed (vaccine supporters and vaccine detractors) that, in his case, his little body was simply not capable of processing them sufficiently to avoid the result we now have.  Which is autism.  And nutritional deficiencies.  And mitochondrial dysfunction.  And GI problems.  And autism.  (Yes – I know I said it twice.)

I don’t expect everyone to agree with me.  But I sure wish I could expect civility in that disagreement.  I am a well-educated, thoughtful, inquisitive parent.  And when I first began to really understand what had happened to my child, I did the research.  I read every one of the (at that point) 16 studies that claimed to provide definitive proof that autism was not related to vaccines.  And I was disappointed to find several things that I believe are inherently wrong.  All of the studies had ties to the pharmaceutical industry.  None of them followed an experimental protocol with a control group and a study group – that is, not one (and not one to today) compared vaccinated to unvaccinated populations (not talking a look-back review of files, but a true experimental protocol).  None of them tested current schedules of vaccines against previous schedules for an evaluation of the compounded effect of the increased number of vaccines recommended today.  They simply did not answer my questions – but left me with more.  The primary one being – why hasn’t there been unbiased, extensive, and protocoled studies done to really try to answer the question.

I’ve also read more than 40 studies (yes, peer reviewed, and some that have their own issues with bias) that show a correlation between vaccines and all types of immune dysfunction, including asthma, ADHD, allergies, diabetes, celiac, bowel disease, and autism.  Although I’m not saying a correlation equals causation, without a real study testing the precise issues, there’s not enough to convince me to the contrary.  Of course, you have every right to believe as you choose to.  And so do I.

I can almost guarantee that I’ve done far more research than most of the people commenting on this topic.  And just as it is your right to believe what you do, it is my right to believe what I do.  Not a single person reading this comment knows my child better than I do.  And you will never be able to convince me – particularly with hatred and contempt – that you know better.  But I am always willing to do more, read more, seek more knowledge and gather more information.  Because it is about our kids – our futures.  My kid and his future.

So please, before you bash me, call me names, tell me I’m stupid or naïve, assert that my injured child is seeking a “free ride” for anything, think about the words you choose and the people – the real, live children and families living with these injuries that you may not think exist – who you are condemning for doing what they believe is most appropriate in their specific circumstances.  I can certainly debate the specific points made within these comments, but unless we all do so respectfully, what does anyone hope to gain?

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Little Things

It’s been a pretty tough summer, for so many reasons.  And I’m sitting here tonight hearing the deepest belly laughs from Sam sitting in front of the TV watching old “Tom & Jerry” cartoons on disc.  Now, no judging on the TV watching.  You know  y’all do it from time to time … and when I’m trying to steal 15 minutes to get back to my failed-miserably-resolution of blogging more, I’m going to let a few episodes entertain.

I’ve been trying to get that gumption back and be inspired to write – about anything.  And I’ve fallen into the trap of having so much to do that the things you really NEED to do – just for yourself, for your own sanity – get pushed aside in favor of ball games and work and laundry and … well, you know – the list can go on forever.  But I started thinking last night that I really need to get back to this. Even if it really is just for me, and if I’m only recording little bits
and pieces of things that happen on this long road.  And then Sam provided us with a nice little  story to tell…

So, last night, Sam lost his first tooth.

I was working downstairs when Pete called me up and asked if I had noticed that Sam lost a tooth.  Well, I thought, he seemed to have them all when he was eating dinner.  I had him open his mouth and show me the hole, which was still a little bloody (ick!), so we knew it had to have just happened.  As we were taking it all in, not quite sure to be excited and happy for him making progress and actually growing … or a bit melancholy because he’s my last kid
and we’ll never see this stage go by again, Sam started jumping off his little stool.  Big, exaggerated jumps, where he
stomped on the landing and got his whole little body into it.

A bit puzzled, I asked him what he was doing.

His response – “it has to come back up.” And he opened his mouth wide and jumped again.

Ok … so Sam ATE his first tooth last night.

Trying not to laugh, I told him it was in his tummy and it was gone now.  At which point he turned his head upside down and started shaking it.

The explanation for that one?

“Need the new one to come out and fill in the hole.”

Couldn’t stop the laughing.

It was truly quite funny … but the more I thought about it, the more this little comedic episode really drove home how far Sam has come in the last couple of years.

He answered “why” questions.

Appropriately (even if quite silly).

His actions that preceded the “why” questions from us were logical – in a typical six-year old way. No, he wasn’t going to bounce a tooth out of his belly by jumping, nor shake a new one into place by thrashing his head upside down … but the concept of cause and effect was there.

He looked us in the eyes and spoke in full sentences.

And, the next day, he remembered the exchanges and told other people about losing his tooth.

Dang.  Even a year ago, we wouldn’t have had any of that interaction, cognition, recall, or socialization.

All from losing a tooth.

A little tiny tooth … but such a huge picture of progress.  Way to work it Sammy.

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Everyone Needs to Listen

It’s been a while … I know … I’ve fallen down more than just a bit on my declared dedication at the beginning of the year to post more frequently.  I have the same excuses as so many do … kids, work, family, other commitments.  I just don’t have time to do all that I want or need to do.
  
And then today, a friend posted a link to the video below – some of you may have seen this in the past.  It’s a wonderful video created by a true fighter, warrior, dedicated, loving mom who struggles every day to make a difference for her own daughter.  

And to share what she knows to help other families not have to be on the same journey we are. 
 
We need to talk.  And everyone needs to listen.  

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It’s All About Numbers

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  are 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 boyshave than girls.  That’s not heightened awareness.  That’s not over-diagnosis.  That’s not genetics.

It’s an epidemic.

Today, April 1st, 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?

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Not Born With It

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.

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Rock Star

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.