The Traditional Mom
The Traditional Mom

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?

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 on that one. 

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.

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.  

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’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 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? 


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

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

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

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

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

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

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?  

A Constant Reminder

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 40th 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…

Happy ? Anniversary

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.  

Paying it Forward

It's early afternoon and I'm cruising comfortably 37,000 feet somewhere over California on my way home to Indianapolis.  For those of you that know me well, "cruising comfortably" in any plane is not typical for me - I hate flying. Hate. It.  It downright terrifies me.  I can't tell you how many choruses of "Jesus Loves Me" have gone through my head over the years on the slightest bit of a bumpy takeoff or landing. Maybe there were even a couple of verses today...

But I think the anxiety was at least a bit less today because of the week that has lead up to it, and how anxious I am to get home and see all my boys. 

The week started with a trade show for work that went well.  Although that was great, it was the conference I attended after that really made the week wonderful.  I was in Las Vegas for work (first time ever to see the strip - what an experience!), and then went to the LA area for a TACA leadership conference.  It's not like I don't have far too much to do right now between work and the kids, but when I got an email asking if I could attend to be able to help the Indiana chapter, I felt I had to find a way to make it happen.

Now, I'm betting that most of you are wondering what I'm talking about - what is TACA?  TACA is Talk About Curing Autism (www.tacanow.org) - families with autism helping families with autism, one child and one family at a time.  It was that mission statement - helping families - that led me to the Indiana chapter once we thought we knew the diagnosis Sam would receive.  The women I met at that first meeting and have gotten to know so much better since then have been a lifeline for more parents than can be counted.  And TACA as an organization has touched the lives of close to 28,000 families.  Over the last year I've met just a handful of them, but I can't tell you how many times I've been told "TACA saved my life" or "TACA saved my kid's life."  And they meant it.  Quite literally.  You see, there's nothing that sucks the life out of you like hearing that your child has this nebulous thing called autism.  And being told they don't know why.  And that he won't get better. That there is nothing you can do about it.  What TACA offers to parents first on this journey called autism is hope.  Hope that there are things we can do to help our children.  That they can get better.  And sometimes even recover.  And most of all that we are not alone in the fight.  There are many autism organizations out there - some focus on research, some focus on advocacy, some focus on public awareness.  But TACA focuses on families. Meeting each one where they are, and providing the support and resources to get through each day.  Because sometimes getting through just one day is all you can manage.

So I spent three days in sunny Southern California (yes, it was nice to have the sun - Pete texted me pictures of the snow, and I sent him pictures of the beach) meeting the brave women who are responsible for bringing TACA to their states - from Hawaii to Georgia to New Jersey and in between.  These are brave women because of their everyday battles with autism.  Some have stories of seizures and mitochondrial disfunction.  Some have stories of food allergies and aggression.  But all have stories of progress.  And some have stories of recovery.  And all have stories of hope.  Hope for health, and hope for happiness.  And hope that their children's futures have not yet been written. 

But they're even braver in my eyes because they are putting themselves out there every day guiding, mentoring, and bringing that hope to families in their areas.  They volunteer their time, their lives and their hearts so that families on this terrible journey do not have to be alone.  I wish like hell that we would never have had a reason to meet each other.  But we did. And I am so grateful to have found them. 

I know many of you have heard (and read) me say that I believe God puts us all on a path - we may not know why, and we may not often understand what we're supposed to do on that path. Although I don't believe he brought autism to our family, I do think that, once we were hit with it, he put me in a place to meet these women and discover TACA for a reason.  As much as that reason was to provide support and guidance to our family, I think it was just as much to tell me that I need to be paying that forward and helping other families.  I mean, geez, look at the reason I started this blog initially so many years ago - it was about enriching the lives of families.  My heart on that point has never changed.  The world has just taken on some new ... flavors ...  So, I'm going to be trying to do just that - helping families through TACA.  I may not have the time to try to help 28,000.  But if just one comes to know they're not alone on this journey - I think that's the one on my path that I was supposed to meet.

 

No Fear

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.

Where Did We Begin?

I’ve had a lot of people ask me over the last year “how did you know?”  How did we know that something was not quite “right” with Sam.  The absolute truth is that we knew for a very long time, but took a decidedly ostrich approach and buried our heads in the sand, so to speak, to the full extent of his problems. 

As I’ve written before, I most certainly knew that Sam was sick early on – soon after he was injured – but didn’t understand or recognize the extent of the damage that had been done.  Quite frankly, I didn’t want to believe that my perfect little baby could be anything but perfect in every respect. 

We were fortunate that Sam was attending a wonderful local preschool (where Zach had gone) with a great staff that served as the proverbial – and somewhat literal – kick in the butt for us to have Sam evaluated by First Steps, our local early childhood development service.  In retrospect, we probably waited too long to take that step.  We’d talked about how he wasn’t meeting the milestones his brothers did.  We’d discussed the concerns with his pediatrician.  We’d even had arguments about whether we needed to look for help beyond what we already had to figure out why he wasn’t progressing like his little friends in his classroom.  We’d been told by the doctor not to worry yet, not to measure him by his brothers’ achievements, that he would likely catch up.  All those assurances certainly contributed to our initial complacency in seeking out a diagnosis for Sam.

Shortly before his third birthday, a woman who has become a wonderful friend, who happened to be the owner of Sam’s preschool, a mother of a child with autism, and a person with such integrity and genuine love in her heart for the children her school cares for, told us point blank that she believed we needed to have the evaluation.  If we weren’t sure of our own gut instincts about Sam, our trust in and respect for her made us sure.  We scheduled the evaluation as soon as we could get him in.

The catch – if you want to call it that – was that First Steps doesn’t diagnose autism.  And we didn’t know to look further.  He was severely developmentally delayed, and eligible for OT, PT and speech therapy through First Steps – but only up until his third birthday.  Which was less than four months away.  After age three, First Steps transitions children to the public school Early Childhood program.  So, in August of that year, Sam began attending the EC program at a local elementary school four days a week.

Unfortunately, there was a catch there, too.  The special education teachers in the public school won’t – can’t – tell you they think your child may have autism, or suggest that you seek further medical assistance to get a more distinctive diagnosis beyond “developmentally delayed.”  There’s simply too much potential liability in even hinting at such a thing.  It’s unfair to parents like us who were pretty much clueless, but its also unfair to the teachers that want to help, but just can’t. 

When Sam started back to the EC program the fall of the next year and we had our first case conference with his teachers, it was like a ton of bricks just came crashing down on us.  Sam wasn’t making progress.  He wasn’t improving.  And there didn’t seem to be much hope that anything was going to change.

And that’s when I knew.

Sam needed more help than what we had been able to provide up to that point.  And to figure out what to do next, we had to know – know, for sure – what we were facing.  I had done my share of internet searching (yes – it is as dangerous as everyone says it is!) to see what I could learn about the symptoms we were seeing in Sam.  I had started to wonder if autism was the diagnosis we’d ultimately receive.   

And that’s when the real hell of getting a diagnosis began.  I spent hours making calls to doctors only to find out that Sam had to be put on waiting lists years – yes years long before he could even be seen.  (We’re actually still on one locally that doesn’t have his first appointment until October of 2012.)  With each phone call and waiting list story, the anxiety over finding out what was wrong with my son increased.  It wasn’t a far step between anxious and desperate.

When we finally found someone who would see Sam, we still didn’t really know what we should be looking for in a doctor.  We jumped at the first opportunity for anyone to see him.  Unfortunately, our first experience also introduced us to the world of docs that can’t give true diagnoses, can’t provide true medical help, and are more interested in revenue than recovery. 

If there was something truly positive that came from that experience, it was an keen consumer’s eye for medical care, which we’d always taken for granted and trusted.  And through the benefit of beginning to meet more people than we ever imagined sharing this journey of autism with us, we got an “in” to a wonderful MD that was able to give us the diagnosis we expected.  It was that diagnosis that allowed us to start getting Sam the intervention he truly needed. 

Six months after we started trying to get answers, we had one – and about a million new questions.  But it was a start.  

It was Day One.  

We took Step One.  

The marathon was on.

Happy New Year!

So, it’s 5:00 on New Year’s Eve.  The last hours of the last day of 2011.  And I just can’t figure out where the year has gone.  There have certainly been points throughout the year that I really felt like 2011 was the absolute longest ever.  GI issues, medical tests, therapies, supplements … it often seemed like it would never end! 

But now I’m sitting here thinking about all I didn’t get accomplished and, more importantly, all the wonderful moments that I didn’t want to pass, but have paved the way for the future.  Sam having a real conversation, learning his ABCs, writing his name, understanding Christmas.  Ben driving.  Zach embracing his diet changes.  Work challenges and successes.  Friendships made and transformed.  Experiences broadening horizons that I would have never imagined a year ago.

And I’ve laughed and I’ve cried.  I’ve cursed and I’ve prayed.  Boy have I prayed.  And the sun rose and set each day.  And it all brings me here to this magical night, thinking about what the next 366 days (leap year!) will hold.  I can’t say I’ve ever been one for New Year’s Resolutions – I’ve never had the desire to set myself up for failure and since 88% of resolutions end in failure (according to the all-knowing AOL), I just didn’t feel the need to test the odds. 

I did, however, make a resolution last year to be taller.  Yes.  Taller.  And as ridiculous as it sounds, I haven’t done half bad this year.  I’ve found a few pairs of heels that have been nice to me and I’d have to say that for more than half of the year, when you add it all up, I was taller than in 2010. 

Thinking of that tonight, sitting here listening to the sounds of the boys upstairs playing and doing their own things, I started wondering what I could try in 2012 that might serve me close to as well as my being taller resolution did last year.  Now, in the last week, I’ve had two people ask me and two people email me asking when I was going to blog again.  That’s (obviously!) been one of the things that have gone by the wayside in the business of the last few months – but the questions made me think about why I started to do it in the first place. 

I don’t know if there’s a soul out there that will read this little entry.  I hope so, but I know that even some of my best friends don’t.  But, then again, that’s not what matters.  As that dear friend I mentioned before so aptly put – writing is cathartic for me.  I may not be that good at it.  I may not have a ton of readers.  I may have to literally schedule time to get words on paper – but I need to do it for me.  And hopefully, someday, for Sam and Zach and Ben. 

So that’s what brought me to flipping open the laptop and penning a few words while waiting for the boys’ GFCF chicken nuggets to cook.  My resolution for 2012 – blog more.  Notice how I didn’t put any definitive amount on there?  ‘Cause I’m testing the odds just by making one – have to give myself a leg up where I can!

May the New Year bring you all health & happiness … the best things we can have!

Next Up ... Allergies, EE, and Mom of the Year

I have had more than one person comment of late about my lack of presence in the blogging world recently.  (Thanks for noticing, by the way!  It's sort of nice and more than a bit humbling to actually be told you're missed!).  It's not been for lack of thought streaming through my head at all hours that has kept me a bit sleep deprived - but provided prime blogging time - over the last several weeks.  That certainly hasn't changed!  But I've actually been filling that time with work.  You see, by day (and sometimes night) I work for a great company that provides services to the insurance industry.  And in case you hadn't heard, there was a little hurricane that brought havoc to most of the eastern seaboard the last weekend of August. 

So ... My prime blogging time has been a little occupied with some related work "stuff."  I know there will be similar events in the future, so please know that if I'm MIA for a bit ... just check the weather and know it might be a bit before I can get back to writing for me!  Fortunately, I work with some amazing people doing great work ... which makes it so much easier to weather the storms. (Yes - that was pun intended.  Never said I was good at those!)

In any event, I talked about what led us to Zach's diagnosis.  And although Sam was born just around the same time, our next exposure to the spectrum world was chronologically with Ben. 

Now Ben has never had any of the "traditional" spectrum symptoms or characteristics.  But shortly after the start of his second semester in eighth grade, he started experiencing an awful lot of stomach troubles.  At first - well, for quite a long time, really, thought he was using stomach aches to get out of doing things he didn't want to do ... wrestling practice, band performances, school events ... I was convinced he knew that a simple "Mom, my stomach hurts" would send me into sweaty palm panic mode (the whole puking phobia manifesting) and get him out of almost anything.  I actually started getting angry with him because it was happening so much and I was at least semi-convinced it was all a ploy.  It was crazy that this kid, who'd never been sick much in his life, was suddenly having so many problems.  Nothing else made sense.  It wasn't until recently that I realized his stomach problems surfaced not long after he received his most recent state mandated Tdap, meningococcal, and DTP (his sixth) vaccines. 

Unfortunately, the prevalence of pediatric gastroenterologist is about on par with doctors treating autsim, and we were unable to get him in to see one until just before school started again in August.  Just two days before classes started, he underwent an endoscopy, which revealed a horribly inflamed esophagus and several ulcers in his stomach.  He ultimately was diagnosed with eosinophlic esophagitis ("EE"), exacerbated by environmental allergies.  (And, yes, I totally felt like Mother of the Year for thinking he was milking it all!)  Little did we know at the time (but have learned in the last nine months) that allergies and EE in particular are among the realm of autoimmune disorders that accompany ADHD, asthma, and autism as the "4 As" in the spectrum world. 

Ben began an intensive regimen of treatment for the EE and, although he has to be cautious of what he eats, he has it under control.  There's still a lot he'll have to be aware of and watch for as he gets older, but just like Zach and Sam, he doesn't let it slow him down.

And in the midst of addressing Ben’s stomach issues, we delved headfirst into Sam’s journey, but didn’t even realize where we were headed at first.  Stay tuned for that next part of the story…


 

Where was the beginning?

If I really sit down and try to think about where the beginning was (and I have … for a very long time … giving me another excuse … “where to start?”) for us in this journey, I really can’t say it began with Sam.  In retrospect, of course, with the benefit of the research done, the conference sessions attended, the wisdom of the people I’ve met, I would have to say that our first introduction to anything spectrum related was actually with Zach shortly after he started school. 

We got the notes home about his attention and behavior even earlier - starting in preschool.  He was a very smart little boy, they said, but didn’t do well with change.  He sometimes struggled to get along with his peers.  He had trouble keeping focus during circle time.  It got to the point where I getting downright pissed off (pardon the language) because I never heard anything positive when I picked him up each day.  Now, the center was going through a series of personnel changes that directly affected Zach (over and over again, in fact), so we decided to move him to a new preschool.  We were so fortunate to find a loving and open environment in his new school (and I found a wonderful new friend – but more about that with Sam!), and he thrived there.

And then he went to school …

Zach has always been such a kind-hearted and caring little boy – and he was just as smart as his big brother Ben.  But focus and attention was a real challenge, first through kindergarten and the part-time after school care he had there, and then into the first grade.  It was at that time that his teacher requested we have him evaluated for ADHD.  We did, and it was a quick and resounding “yes – that’s it” from the doctor … and right on to medication. 

Lest I forget, like Sammy, Zach was also plagued with incessant and recurring ear infections leading to ear tubes very early, and a resulting terrible scare of possible kidney failure when he was four.  I thank God it didn’t turn out to be that, but knowing what I do now, I wonder how much that early toxic exposure may have harmed him.

Zach has always taken everything in stride – he was a trooper in taking the medication, and has been very willing to see the doctor, have tests run, and talk about diet changes and supplements (including B12 shots!) that could help him.  We started down that path just a couple weeks ago because we wanted him off the meds.  We’re waiting on those results, and are having him evaluated by the same neuropsych that Sam’s seen (probably a year from now because of how overwhelmed they are with kids needing those evaluations). 

And I would never have thought there was an option other than meds had it not been for what we’ve learned from Sam’s diagnosis.  There’s so much out there that tells us that ADHD falls somewhere on that same spectrum where we find autism.  So I can’t help but consider that some of the same interventions that have done such amazing things for Sam thus far might help Zach overcome his own diagnosis. 

We’ll see … one step at a time…

Excuses ...

I’ve been struggling the last few weeks over things I wanted to write about… admittedly, the whole blog-about-my-life experience is new to me.  I keep finding that I have about 1000 things going through my head at once – and there’s so many little things I could pick up on and share here.  But I pause because this topic needs some previous background I haven’t written about.  Or I think that one won’t make sense because I’m waaayyyy late in commenting.  Or (when I’m feeling especially sorry for myself) I tell myself that I don’t have many readers (and some of my best friends don’t even seem to realize this blog exists), so does it really matter what I write?  Or… my excuses just go on and on. 

Lying awake at 4:15 this morning (have I mentioned that sleep just doesn’t come much these days?), I started thinking about all those excuses again.  (Maybe that at least partially explains the not sleeping!)  And I circled back to where my thoughts were when I put fingers to keyboard the first time.  It’s not that my excuses don’t have some ground in reality.  Fact is, there’s a lot of background I haven’t recorded in type.  I am awfully busy and it often does take me a long time to gather thoughts on topics on which I want to comment.  And there are folks – even those I actually poke and prod a bit about it – that will never read my words.  But that wasn’t why I started this in the first place.

It’s about Sammy.  It’s about his journey.  It’s about his big brothers and their own journeys alongside him, as well as on their own.  It’s about what we’re doing, thinking, feeling, reading, researching … all along this path we’d never have chosen for anyone, but that we’re on nonetheless.  We never planned on having a child with autism.  The big boys never sat around thinking they’d be living in the special needs world.  We certainly didn’t think we were joining the fad or being fashionable.  (Really?  Don’t get me started on that one.  It’s one of those topics that I’m way late in commenting on, but just blows my mind to think any educated person could possibly believe anyone WANTS this diagnosis – or could be downright foolish enough to say it out loud – and in print!  Perhaps I’ll get to it soon, but for a great commentary on Dr. Allen Frances’s inane assertions, take a look at LJ Goes’s post for Age of Autism.)

So I decided I’m going to try to go back to the beginning for a bit and fill in the “prologue” to our journey.  Where did we start and how did we get to now?  I’m counting on it eliminating at least a couple of those excuses rattling through my head in the middle of the night.  Maybe I’ll even get a few more winks out of it…

Who Gets Two??

It’s the season of birthday celebrations in the Elliott household.  We’ve moved from Sammy’s big day (which, we’ve now decided, will include a cake each year saying Happy Birthday to Jason) to Zach’s.  Today is actually the in-between day of Zach’s two birthdays.

Huh?  Yep – he’s got two.  Not really, of course, but we’ll never actually agree with letting him have only the one he really wants right now.  Confusing?  To us, too. 

You see, Zach was born (not quite) 10 years ago on August 3rd.  I remember it well.  I was there.  So was Pete, as were my doctors and nurses.  And after the blessed event, we checked all his fingers and toes and signed all the paperwork to attest to his birth and get the official documents we needed for him like his birth certificate and social security card.  We checked names for spelling errors, addresses for zip code mistakes, and confirmed his birth date and time. 

Apparently the Marion County Health Department decided not to be as careful as we were. 

Of course, we didn’t check the details – like date of birth – on the birth certificate when we received it in the mail (bad us).  We dutifully filed it away in our fireproof filing cabinet awaiting the day we needed to retrieve it to register Zach for kindergarten.

That day came now a little over five years ago when he was just shy of his 5th birthday and was following his big brother Ben’s footsteps in the academic realm, already reading and doing basic math.  He was so ready – academically – to go to school, we decided to take the steps necessary to get him tested to be allowed into kindergarten that fall.  The official cut-off date for kindergarten enrollment that year was August 1st.  We figured, just being a couple days off that mark, Zach would be ok – and was certainly anxious to get there.

So, we pulled out the information we needed to take to the school administration folks to request testing … and discovered that Marion County had recorded his birth date as August 1st. 

I immediately called the administration office and tried to explain our situation – and that we had every intention of getting the birth certificate corrected (which we’d already discovered was going to be a terrible mess of red tape and take longer than my pregnancy did in the first place).  The woman I spoke to was not terribly helpful and, in fact, truly ticked me off.  After hearing “Ma’am.  I told you.  The only proof of age we accept is the official birth certificate from the state” for the final time, I said “Fine.  We’re enrolling him.” 

I hate being called “ma’am.”

So we started down the long path of having all Zach’s school records reflect his birthday as August 1st.  We tried to explain it to him then, but he didn’t quite get it.  He has for a few years now – and relished in it the first year when he realized he had TWO birthdays … and wanted cake and presents on both.  He’s now decided he is ok with just one – but wants it to be the earlier day.  I guess we’ve actually somewhat given in. 

He awoke yesterday to choruses of “Happy almost but not quite really Birthday to You!”  He wasn’t nearly as amused as we were… 

Sam By Any Other Name ...

So … last Saturday morning, I was up early and out to the farmer’s market to pick up some goodies for our birthday celebration with Sammy.  He picked up on the fact that Friday was the big day pretty quickly and when Pete picked him up he started asking about his birthday balloons, presents, and cupcakes.  We had the presents covered and, although we hadn’t anticipated getting any, it was a pretty easy task to run by the party store for some shiny Mylar balloons.

I knew I’d need a little help with all the tasks, so I rolled Ben out of bed to go along with me and be my muscle.  He was a great help – carried the bags at the market while I collected Sam’s cake from the gluten free bakery that has a booth there every Saturday.  I had even planned ahead, ordering the cake the week before when we were there.  We collected our goods and hopped back in the van to head to Whole Foods to pick up a few last grocery items.

About half way there (Whole Foods is on the other side of town – technically in a different town – from where we live.  Despite my best email efforts to convince the corporate office that they would make a killing if there was one on this side of town, they’ve politely declined my suggestion each time.  Point being … it’s a pain in the rear to have to haul ourselves across town each time we need to go … so half way there isn’t just a skip from home), Ben asked me if he could check out what the cake looked like.  I’d been in such a hurry to get on with our tasks that I hadn’t opened the box once I picked it up. 

Didn’t see any harm in that, so I told him to be careful picking it up, but to go ahead and take a peek.

It was a perfectly lovely cake that said

Yep.  That’s right.  Happy Birthday Jason.

We went back to discover that Jason’s mom had already been by to pick up his cake that did, indeed, say “Happy Birthday Sammy.”  The bakery owner offered to fix it after she was done at the market at noon, but that was when everyone was going to be at our house to celebrate.  And it’s not like we could have run to the store to find another yummy gluten-free, casein-free birthday cake before noon, so we decided this was one of those times to be thankful for what we have … and that Sam can’t yet read.  We figured everyone else was old enough to understand and, even if we’d told Sam the name was wrong, he wouldn’t really get it anyway.  (We learned, however, that Jason was turning 20 and would certainly get it.  Here’s hoping he had a sense of humor.) 

We all made jokes about it and wished Jason a happy birthday, too, while we were enjoying the cake. 

A few hours later, Sam was riding around the kitchen on his new Lightening McQueen scooter.  After several laps around the island, he stopped, looked at me, and said “It’s Jason’s birthday.  Happy Birthday Jason!” 

It may have been a tad delayed in coming, but I think we’ll need to start watching what we say in front of Sam.  No telling what he’s actually getting these days. 

And I can’t tell you how thankful I am for that.

Happy Birthday Sammy!!!

Happy Birthday!  Today our beautiful little Sammy turns five!  We’ll be celebrating the big day tomorrow, actually, so some of our out of town family can come join the festivities. 

As I sat thinking about this last night, I started thinking about how bittersweet of a day it is. 
Why bittersweet?  Well … we have so much to celebrate, but there are still those nagging little reminders that turning five for Sam isn’t like it was for his brothers or like it was for the little boy at the Cubs game a few weeks ago. 

It was always a tradition in my family that the birthday boy or girl got to pick what was for dinner.  As my siblings and I have gotten older, we’ve moved away from that a bit for the bigger family gatherings, usually just leaving it up to the host to pick what the dinner faire will be.  Now, I still try to let the “big boys” pick for their special days here at home.  We’ve had pizza, steak, Chinese, lasagna…

Sam doesn’t get to pick. 

At least not yet. 

You see, one of the first changes we made with him after his diagnosis was to his diet.  We removed gluten and casein from it.  And like many autism families, we saw a real, significant improvement within a short time after doing so.  We’ve since learned about lactose intolerance (which he has), gluten sensitivities (which he has, as do I), and celiac disease (gut biopsies couldn’t confirm because he was off gluten already and didn’t draw enough blood to test while he was out for his colonoscopy).  And we’ve learned about organics, free-range and grass-fed meats, and GMOs.  Although we effectively tripled our grocery bill each week, I think it is helping us all eat better and healthier, and be better stewards of the bodies God gave us. 

But the grocery bill does kind of bite. 

Anyway, we’ll be having a cookout with grass-fed burgers (from a local farm picked up at the local farmer’s market), fresh fruit (much also courtesy of the farmer’s market), chips (hey – they’re naturally gluten free when you get the good ones), organic lemonade (Whole Foods loves us now), and Sam will even have a gluten free bun that, as my dear husband has said, doesn’t suck.  (It’s been a long time in finding one that fits that bill!) 

We have another tradition in my family.  It’s a little odd.  Well, a lot odd.  And no one can seem to recall where it originated.  After dinner is over and it’s time for birthday cake, we light the candles and sing the song and the birthday boy or girl blows out the flame.  What’s odd about that, you ask?  Nothing yet.  But there’s more.  So, once those candles are out, if you’re the birthday boy or girl, you can’t talk – not utter a word – before you take the first bite of the cake (which is served to everyone else first) or you have to eat your cake sitting under the kitchen table.  I think we have pictures of every person in the family devouring their traditional birthday dessert faire from the floor, surrounded by table – and people – legs. 

Except Sam. 

Now, I’m actually very excited that Sam will be able to enjoy a gluten-free, dairy-free birthday cake made by a local baker that is really quite good.  For a while when we first started the diet, I thought he may never be able to enjoy such treats again.  At least not ones that didn’t suck per Dad. 

But I know he wouldn’t understand our bizarre birthday tradition. 

Not yet. 

But I refuse to believe not ever.   

Now, I do think he will understand the concept of presents this year.  We weren’t even quite there this past Christmas, and certainly not last birthday.  Just a week ago, we were shopping for a birthday present for my best friend’s son, and Sam really took an interest in the present, and even more of an interest in the gift bag.  And he was excited to see his friend open the gift and play with it.  The gift itself even held his attention for a minute … until he discovered the giant roaring remote control dinosaur that he could make walk across the floor and put things in its mouth. 

So, this year’s birthday is a little bittersweet.  We get to have a celebration with good food and yummy cake.  But Sam can’t yet experience some traditions (however silly they may seem) that the rest of the family has.  Sam can’t enjoy a baseball game with his Dad, but he will be surrounded by people who love him and cherish each day with him.  And I’m hoping we get to see real joy in his eyes when he gets to open and play with his gifts. 

Sam’s fifth birthday marks Day 170… still just past the starter’s gunshot of our marathon.  I can’t wait to see what strides he’ll make in the next year.  Perhaps he’ll even eat that cake under the table on Day 535 when we celebrate six.


 

Am I?

When I first started putting words to paper (well, screen) and decided to share my thoughts and experiences with anyone who'd be kind enough to read them, I had a dear friend ask me if I found the writing to be cathartic.  Just this week, I had another dear friend send me a note that said she liked my honesty and hoped writing helped me deal with the frustrations that are coming along with trying to find answers for Sammy.  (And I miss seeing you, too!)

They're both so right. 

When you get me in a room and ask my thoughts on something, I rarely am without opinion and plenty to say.  Over the past six months, I've learned so much, and have discovered that I have an awful lot of thoughts on so many things that I had never even contemplated before autism entered our lives.  I wish I could find the words - and the time - to write about it all.  But then there is this life that we're living in that doesn't always lend itself to moments of escape to get the the thoughts out of my head and onto the computer screen.

So, I may not always be super timely or current, but I will always be honest and real.  And I decided it was time to be honest and real about a particularly taxing subject within (and outside) the autism community. 

A few weeks ago, I was talking to a friend, another autism parent who has had years on this journey we've just begun, about the debate over environmental factors vs. genetics as the root of a child's autism.  I said I didn't see how environmental factors could NOT be the bigger trigger, given that my kids all have the same general genetic makeup, but, although they all have their issues, the environmental factors, including vaccinations, are what I know were different among all three of them.  He then asked me if I was "one of those vaccine people."  I don't even really remember how I answered him, but I've spent a lot of time since then thinking about that question.

Even six months ago, I probably wouldn't have had a firm, committed answer.  And I’ve realized that I’ve actually been afraid to express my true thoughts on the subject because there really are people reading my blog.  (Yay friends!  Thanks!)  I didn’t want to offend anyone (regardless of their “side” of the debate).  And I didn’t want to be one of “those” vaccine people.  You know what I mean – most everyone, whether in the autism world or not – has heard the name calling.  Irrational, frustrated, under- or un-educated, naïve, uninformed, emotional, desperate, delusional … and the list goes on. 

Emotional?  Well, yeah - hard not to be when it’s the health, safety, and future of your kid at issue.

Desperate?  For answers.  You bet.  I think we’d all concede to being desperate to find an answer to our kids’ conditions.  I want my son to live a full and rich life.  Today, we just don’t know for sure that will ever happen.  So, yes, I’m desperate for answers.

Frustrated?  You have absolutely no idea.

But the others?  The ones that seem to be tossed around with little regard to the hurt they cause?  Now, those are the ones that just plain tick me off.

There’s been a lot of press concluding that there have been “numerous” studies discounting any correlation between vaccines and autism.  Accepting that fact as true seems to be a catalyst for a lot of the other characterizations.  Because I’m a bit skeptical by nature, and spent years learning how to research both sides of an argument (generally not considered naïve and certainly not uneducated), I wanted to look at the issue in as much depth as I could before deciding what my position would be, I started looking into the research myself. 

I had heard on a morning TV show that there were 16 studies that have shown no association between vaccines and autism.  What I didn’t hear about were the more than 45 studies that have shown that there is a correlation.  And although correlation does not equate to causation, those studies are awful hard to ignore. Read the summaries.  Plod through the studies.  Then try to tell me - or yourself - that there's no association.

And then there are the people I’ve met.  A medical professional whose daughter was developing normally until receiving nine vaccines in one day.  A newborn baby who started seizing immediately after her one and only vaccine and who died as a teenager after a life-long battle with seizures and other medical conditions.  A little boy who was talking and playing and healthy until his 5 year shots – and who has not spoken since.  And hundreds of other stories I’ve read.  These people are certainly frustrated, emotional, and desperate for answers.  But few would seem to be irrational, or delusional.  It happened to their kids.  They were there.  They know.

Then I thought about our Sammy.  I remember so clearly the day (or the days following, anyway) the six vaccinations he received at his two month well-baby checkup.  We brought him home from the doctor to have him spike a fever and start vomiting.  For days.  I had the puke phobia before that, so trust me when I say that I remember how incessantly it continued for a week.  We were told it was just a normal reaction and to wait it out.  And we did.  And, although I refused the second round of the “new” vaccine that was in the two month shots (because I was told that was probably the reason he was so sick), we gave him five more on the same day two months later.  And by the time of his six month check-up, the ear infections had started.  He had one the day we gave him four more shots at that appointment.  And they didn’t stop until he had tubes put in his ears at 14 months.  During the interim – when he was fighting the non-stop ear infections – he got five more vaccinations.

Now what I’ve learned about genetics and autism since then tells me that our little guy had a lot of cards stacked against him.  His family – on both sides – has a plethora of auto-immune problems, from thyroid disease, diabetes, and eczema to fibromyalgia and multiple sclerosis.  Autism (and the related issues ADHD and allergies Sam's brothers are dealing with) is highly correlated with a history of autoimmune disorders.  Sam also has a genetic abnormality that makes it more difficult for him to process and get rid of toxins in his body.  In the simplest of analogies I've heard, Sam's genetics loaded the gun, and environmental factors - among which I believe were his vaccinations - pulled the trigger. 

Please don’t get me wrong.  We don't blame Sam's doctor, who treated him and his brothers with passion and heart and advised us to do what she believed to be best.  The American Association of Pediatrics, the AMA, the CDC, the pharmaceutical companies and their paid physician-spokespeople push those 16 studies that say there's no connection and ignore, actively dismiss, or angrily indict the more than double the 16 that show there is.  (You can read a summary of some of these important studies here.)  That's what doctors are taught.  And if the leaders and spokespeople of the medical community refuse to acknowledge that something is triggering this national crisis, this epidemic, it can only get worse, with our children as the casualties.

I don't expect everyone to agree with me.  I know both sides of the debate.  I'm a litigator by triaining - I can argue both sides of the debate!  But what I truly pray for every day is that the debate continues and draws more attention.  Not ridicule.  Not name calling.  Not disgust or contempt.  For anyone.  But attention.  So that studies are done to find real answers to why autism is ever-increasing, why ADHD diagnoses are rising, why more children have learning disabilities than we’ve ever seen in history.  So that answers can be found for improvement and recovery.

Clearly I don't profess to have all the answers. But what I do have is a love and compassion for Sammy and ALL children afflicted with autism. And like any caring parent, what I want more than anything else is a chance for these children to be heard - objectively. 

So, in answer to the question ... yes, I guess I am one of those vaccine people now... And I will always wonder if, had I been before, would Sam's life be different? 

 

 

 

Freedom from...

What a wonderful holiday, Independence Day!  It gives us, as parents, the opportunity to teach an awful lot to our kids without them even realizing they're learning. There's history, government, politics, geography, not to mention a little bit of science in all those pyrotechnics.

And when asked to sum it all up in one word, who wouldn't say "freedom"? 

I remember thinking about that concept as a kid - what "freedom" as an American meant.  Of course, it was all those things we learned in school - freedom to choose religion, freedom to express my opinions about our governmental leaders, about educational policies, about sports teams and tv shows, about vaccines and the CDC...
 
And it doesn't matter what those opinions are, because it's my fundamental right as an American to believe whatever I do and not be in fear for my life or my liberty.
 
Then there's the pursuit of happiness.  For me, I knew that meant that I could work hard and have the opportunities that I created (or was blessed enough to haven opened to me).  Doctor, lawyer, rocket scientist, or President ... they were all open to me, just as to the other boys and girls sitting at my table in Mrs. Yoder's kindergarten classroom.  Even Shawn who got me my first recess detention for socking him in the nose when he tried to kiss me on the playground and Sally who threw up on me in line one day, which I am convinced is the root of my current phobia. (Names have been changed to protect the innocent and not so innocent...)

Those were the things that freedom meant to me.  But I'm not so sure that's what it means to my kids, or what it would if they really understood the concept.
 
Now Ben, at nearly 16 and far smarter than his dad or I were at his age, certainly gets the inherent ideas, but I would have to add to his list of freedoms - his fundamental rights - should include the freedom from environmental and food allergies that gave him ulcers at 14.  For Zach, perhaps his pursuit of happiness would mean not having letters of a “condition” attached to his permanent file and being able to get through a day of school without pharmaceutical intervention – freedom from ADHD.  Now, both boys understand the doors open to them and, despite the challenges they have, are smart enough to know how to take advantage of those opportunities as they arise. 

And then we have Sam. 



He's such a little cutie and has made great strides in a short time.  But still has so far to go.  I sat at dinner tonight watching him try so hard to snap shut one of those recyclable bag we got from a store.  He had such a serious look on his face and was concentrating so hard.  And he just couldn't get it.  At a time when so many nearly 5 year olds would be learning, at least in rudamentary terms, about the Declaration of Independence, about the soldiers that fought to make American a place for freedom, that sparklers are really cool but that red tip is way too hot, I would love for him to be able to fasten a snap.  I know I couldn't begin to list all the freedoms he has yet to embrace.  And when I'm not just plain angry that he’s not free from autism and that he's missing out on so much, it inspires me to watch him try to take the next step.

So, although he couldn't master the snap today, he did manage to figure out Netflix on the iPad.  And the volume button.  Ahhhh...  We’ll take the victories as they come!

And I think we’ll save the pyrotechnics for next year, perhaps…

Purposeful Parenting in a New Light

My initial blogging experience brought the below post for just a little more than two years ago.  It's a bit funny to read now, knowing how different our lives are - hot dogs are now organic, picnics are missing anything with cheese or bread, and I never knew ice cream could taste quite so yummy coming from coconut milk.  Ah, the life of a family with a gluten-free, casein-free diet in its midst! 

Purposeful parenting month certainly still intrigues me ... and I think I may find it even more important now than prior to Day 1, Step 1... 


July is National Purposeful Parenting Month (June 26, 2009)


Did you know that July is National Picnic month?

It’s also National Outdoor month, National Hot Dog month, National Blueberry Month, and National Ice Cream month.

Now, in my house, any of those are reason for celebration!

It’s nice to know that, with the aid of the Internet, we can find numerous reasons to celebrate every month - in fact, every day - of the year.

In my search to find all the various reasons for celebration over the upcoming weeks, I also learned that July is National Purposeful Parenting month.

That one really intrigued me.

The purpose of the month is to build strong, caring, nurturing families - regardless of what your family structure is - and to teach our children the values we want to them to have when they grow into parents themselves.  Now that’s a pretty tall order for a single month of the year.

I love the concept, but purposeful parenting - and the instillation of values in our children - can’t truly be relegated to a single month of the year. But we certainly can use the month to recommit ourselves to taking the steps necessary to make sure our kids are learning those values. We can decide now to start a new daily, weekly, monthly, or even yearly tradition that exemplifies a value we want them to have.

In July, when we celebrate the bravery of those men (and Traditional Moms of the day!) fought for our nation’s freedom, we can teach our children about courage.

On your next family game night, talk to them about persevering even in the face of defeat.
On the next trip to the park, encourage your child to slide down that big, scary slide to learn it’s not so scary after all.

Encourage your son or daughter to ask a new child in the neighborhood to play. Even keep track of those “acts of courage” on little notecards that you can save for the day they look to teach their own children that value. It’s a priceless gift that costs no money at all.

And maybe, just for fun, in National Picnic-Hot Dog-Blueberry month, you can plan a fun picnic lunch with hot dogs before taking the kids to pick blueberries at a nearby patch. (Oh - and if you don’t have a nearby blueberry patch, July is also National Blackberry month, National Raspberry month, and National Peach month. Surely that covers most of us.)

Just be sure to have your picnic before the last week of the month - that’s Don’t Eat Meat week. Sort of conflicts with the hot dogs, huh?

 

Birthday Dreaming

Last week I was at a meeting in Chicago for work.  I'm actually very fortunate that I pretty much like the travel I have to do for work, and this particular trip was no exception.  Although I hate being away from Pete and the boys, I enjoy the people I get to meet, the boards I sit on, and the work that we get to do.  Not trying to be too corny here, but the point is I kinda like what I do. 

Well, anyway, this particular meeting was for an advisory board for one of our largest vendors.  An interesting concept that I think more service or product providers should consider.  These folks actually want to know the thoughts and opinions of their corporate clients and invest the time and resources to get them together to learn what everyone wants and needs.  And they make sure we have a good time outside of the serious work discussions.  We spent one afternoon in a torrential downpour learning about the architectural history of Chicagofrom a boat on the Chicago River.  Sure, it would have been better to have taken the dry-tour option, but it made us really appreciate the beautiful weather for the Cubs game we went to on day #2. 

We really couldn't have asked for a more beautiful June day for baseball in the world's greatest park.  It was a Thursday afternoon game, and the suite we were in was actually just under the scoreboard bleachers, so we were able to venture out to watch the game with some great die-hard Cubs fans.  (Didn't hurt that they beat Milwaukee 12-7, either!)

At one point, just after a group of us moved outside, one of those rather obnoxious fan photographer people moved into the area and started pushing people to pose for their exorbitantly priced pictures (seriously?  $53.99 for the download?).  We (mostly) passed on the opportunity, but did get to see some pretty cute shots taken of the crowd.  There was one picture, in fact, that struck me as so sweet that it just needed to be one of those pics that you find already in the plastic sleeve when you get a new wallet.  Dad and son, both blond, tanned, and totally happy in matching Cubby blue logo t-shirts, with sunglasses raised to their foreheads, were smiling the same wide grin for the camera.  I heard the photographer ask if they were at the game celebrating anything special, and son proudly declared that it was his "fift birtday," and his daddy had brought him to the game for his special day.

And then it just hit me like a ton of bricks.  I was, all at once, terribly sad and completely enraged.  I know it’s not a very logical emotional reaction to what was truly a beautiful sight and heartwarming exchange.  But it was one of those can’t-help-how-I-feel moments.  We’re just a few short weeks away from Sam’s fifth birthday and I can’t imagine Pete being able to take him to enjoy one of the purest forms of entertainment a father and son can share.  He can’t have ballpark food (gluten filled goodness).  He doesn’t understand the game (would LOVE to be on the field chasing the ball).  And he certainly wouldn’t sit to watch three hours of baseball (ok – that’s not necessarily just an autism trait).  I was overwhelmed with sadness that he won’t ever experience a “fift birthday” like that with Dad.  Then I was just beside myself angry because it’s so unfair that he won’t.

And then I was totally ashamed.  See, the next brick to hit me was the one that told me to remember how fortunate we really are in this whole autism world.  I have met so many brave parents (and perhaps even braver kids) that would give just about anything to have what we DO have with Sam and his brothers.  Sam is talking more and more – and actually engaging in rudimentary conversations.  He is attending a fabulous ABA school that is helping him make great progress in life and social skills, as well as academics.  He plays with his school friends.  He plays with his brothers.  And his brothers love him.  He gives hugs and melts your heart when he says “I love you.”  Thanks to the guidance of some great new friends and a wonderful doctor-advocate, his health is improving.  The other night when Ben pulled the car into the garage for the first time, he clapped and said “good job Ben!”  (Ben driving is the topic of a whole lot of other blog posts, by the way.)  We have so much to be thankful for with him that THAT is where my focus should have been.  We are blessed with family and friends who support us. 

So … I quickly got over myself and decided to try to keep focused on the steps ahead.  So what if Sam’s fifth birthday won’t be ballparks and birthday cake … and maybe not the sixth or seventh, but someday… we’ll keep going in hopes that someday it will be.

Retro Post - The First

I've had a few people ask me about the initial blogs I wrote that I referenced in my first posting here.  I'm posting that initial "retro" The Traditional Mom blog below.  I've read and re-read my proposition, thinking about how true it still is for me.

And it struck me how overwhelming "life" seemed at the time I first wrote those words - we were stretched pretty thin with all the things we had on our family plate.  I had no clue.  No clue at all how much more would get piled on the old Elliott Family china. 

But mostly?  I still want exactly the same things -- to have my kids grow up with a sense of belonging and to look back and have memories of the cool things we did together and the important faith and life lessons they learned.  It's just that now the "big boys" are having to learn some really intense and different lessons than anything I'd imagined.  And Sam ... well, we're not sure yet how the lessons will fall into place for Sam.  We've still a long road to find out ...


The Traditional Mom (April 14, 2009)

I bet some of you caught the title “traditional mom” and thought “what does that mean?” Good question these days, isn’t it?

Is it a stay at home mom working hard (and boy do they!) to raise two-and-a-half children, meeting all the demands of mom, wife, chauffeur, housekeeper, and gourmet cook?

Is it a corporate executive filling every waking moment with work or family obligations, wondering where the hours will come from to meet the next deadline while not missing a minute of her youngest’s soccer season?

Is it a single mom balancing work and the needs of her young kids while taking classes to complete a degree or graduate program?

Although as recently as just a few decades ago the answer was predominately the first, today’s reality is that, in any given community, we’re likely to see at least an equal smattering of all three, if not the latter two outnumbering the first.

What’s a “traditional mom” then?

My proposition is that she’s a woman who loves her family and desires to raise her kids with values, ambitions, and dreams.  And we’re always thinking about what we can do to instill in our children those values, ambitions, and dreams, all the while managing the various other obligations we have.

Our family lives are stretched pretty thin these days with work, school, church, scouts, sports—multiplied by a parent or two and exponentially increased for each child involved.  But I know that for me, as a busy working Christian mom (and I think I’m pretty “traditional” these days), I want more than anything to have my kids grow up with a sense of belonging ... to look back and have memories of the cool things we did together and the important faith and life lessons they learned (even if they didn’t realize they were learning anything at the time).

I, for one, plan to learn as much as I can to find ways to make these desires a reality in my family life - and actually implement them!

I’d love to share this journey and my findings with you ... I hope you’ll find some ideas that work for your family, too!

Until then.

Racing rocks!

Saturday was a pretty exciting day for Sammy!  Well, truth be told, for Mom and Dad, too, as it marked the first day since his colonoscopy that we weren't on the every-ten-minute-poop-patrol.    Although we're still waiting for all the biopsy results, he seems to be turning a corner.  (Please don't let me have just jinxed us!!)

Anyway ... Saturday morning I was helping a friend man the TACA (great organization - check them out at www.tacanow.org) table at the Hamilton County Autism Support Group's (another fabulous organization. - check them out at www.hcasg.org) Race for Autism.  Pete brought Sam to ride his little bike in 4 year old and under race.


The festivities kicked off with his group at 11:00.  Sam was initially a little confused about the track and what he was supposed to do, but he got the hang of it and was so excited for his medal.  So excited, in fact, that he found his way into another race and somehow ended up with a second medal!

And he kept going.  And going.  And going.  Our little energizer bunny raced around and around the grounds until nearly 1:00 when we had to force him to leave to get some lunch!

The Indianapolis Star was there taking pictures and asked Pete for Sam's name and info... Watch for him in the Thursday Hamilton County section!

Day 129, Step 3092

We’re on Day 129 and just took Step 3092.

Now, I realize that might take a bit of explanation – at least the Steps part.  You see, all the experts, be it medical, behavioral, educational, or otherwise, are very quick to point out that the autism recovery journey is a marathon and not a sprint.  We have to approach it that way or risk an early nervous breakdown when you don’t see improvement from a treatment.  Or, worse yet, there’s some major (or even minor) setback that happens. 

We’re only on Day 129 and Step 3092 and have already had things that didn’t seem to work and setbacks that have brought us to tears.  I try to keep thinking positively, knowing we’re just at the start of this road, but sometimes it’s, quite frankly, really damn hard.  The last few days have been one of those times. 

One of Sam’s major issues – one that we’re still wondering just how much it contributes to everything else – is with his gut.  It’s terribly common with kids with autism, and just plain terrible to deal with (not to mention often awfully gross).  So, after several early doctor visits and trips to the ER for constipation, we got a referral last November for him to see a pediatric gastroenterologist here in Indy.  His appointment (that was actually with the doc’s nurse practitioner) was May 17th.  (Have I mentioned how long the wait is to see many of these specialists?  All you new high school and college grads – I encourage you to become doctors that treat autism.  There’s a heck of a market, and boy is it growing.)

As a result of that appointment, the poor little guy was scheduled for an endoscopy and colonoscopy last Thursday.  We’d been through an endoscopy with big brother Ben not quite a year ago and were prepared for what that meant … but the whole colonoscopy thing was another story.  To shorten the long (and icky) story, the prep didn’t really work and the doc had to take care of things from there.  Result – we have to start him on a course of laxatives and softeners to try to get him to learn that it doesn’t hurt to go.  That’s where the fun’s been since Thursday.

It’s literally been a rare hour (absent sleeping) that we haven’t heard, “Have to go potty!” no less often than every 10 minutes.  And for Sam right now, “have to go” means “already went.”  And more than once, I’ve been on the edge of tears (and sanity), wondering how we’re going to get through this one.

And then I remember – it’s just the start of our marathon. 

So, to pass all the free time between potty visits, I starting thinking about what this marathon would look like if I were to try to quantify it.  After a bunch of different options I think I found the one that makes the most sense to me.  I warn you, analytical math is not my strong suit, so just try to follow along here with me…

A marathon is 42.195 km (as defined by the International Association of Athletics Federation (IAAF), the Association of International Marathons and Distance Races (AIMS), and the Road Running Technical Council of USA Track & Field (RRTC/USATF)).  That equates to 26.21875 miles, or 138,435 feet.  Various websites estimate that the length of the average step is about 2 ½ feet.  Rounding down to include the steps of our kids (and to account for the many days that we’re just shuffling along), that gives us about 69,218 steps in a marathon.  Now, divide the steps by 365 days in a year and then 24 hours in each day, that gives us about 7.9015 years, or 2886 days (accounting for a couple of leap years) if each hour counts as a step in this journey.

We received Sam’s autism diagnosis at just about 2:00 p.m. on January 27, 2011.  As I sat down to write tonight, it was just past 8:00 (and Sam was peacefully sleeping).  Using my calculations – a stretch that they may be – that makes us on Day 129 of 2886, and Step 3092 of 69,218.  It’s been a very trying few days.  But putting it in perspective of how early we are in our marathon, I have to appreciate how far we’ve already come and not stress so much over how rough this little patch has been.  I’m sure there’ll be more ups and downs, and many more days and steps.  And maybe it’s even just our first marathon before the journey is done.  But, we’ll keep going – ‘cause we just have to.

So … for my new friends on this same journey, in your own marathons… what day are you on?  How many steps have you taken?  Each hour and day that passes is one more toward the finish line…

The Traditional Mom

Back in 2009, my husband was writing and editing for a Christian website that was just getting off the ground.  Several years earlier, with my two oldest boys, I discovered I had a deep, burning, desire to try to create memories and traditions with them that they’d be able to hold near and dear and pass on to their own kids.  Ok – I admit it was sappy, but I dreamed of some of those “simpler” times when it seemed like those kinds of memories just happened. 

In 2003, when my older boys were then 8 and 2, I was fortunate enough to meet some wonderful women and find a pretty cool company that was able to show me that, although we might have to work a bit harder at it these days, it was certainly still possible to create those magical memories for our kids.  And I’m not talking about just taking trips to Disney World. 

I dove in head-first, and really did love every minute (not that I had any to spare).  Life kept changing, as it is bound to do.  I got busier, the boys got bigger, and we welcomed baby #3 to our family in 2006.   

Then, when Pete started working for the website, I thought it would be totally cool to be able to write a blog for it, focused on what I found important, and letting other families know that if we – the two-working-parent-mom’s-a-lawyer-dad’s-a-writer-kids-are-over-the-top-busy-family – could make those memories, then any family could. 

Thus, The Traditional Mom was born.  The whole idea was to question what was “traditional.”  My proposition was that a “traditional mom” is “a woman who loves her family and desires to raise her kids with values, ambitions, and dreams.  And we’re always thinking about what we can do to instill in our children those values, ambitions, and dreams, all the while managing the various other obligations we have.”

That was early 2009.  Not too long after ADHD.  But before eosinophilic esophagitis.  Before allergies.    Before developmental delays. 

And before autism.

You see, it was later in 2009 that we first had Sam, then 2, going on 3, evaluated by First Steps and were told he had a developmental delay.  We had known for quite some time that he wasn’t progressing like we thought he should be, and not like his brothers had.  But we listened for a long time to the people (doctors included) telling us he was “just a little behind,” and “don’t worry about it, he’ll catch up.”  In fall of 2009, he entered our local school corporation’s Early Childhood program and began getting more speech and OT. 

Then in early 2010, I first read about the manifestations of autism.  How widespread it had become.  How it was connected to autoimmune issues (which our family is loaded with).  How it’s tied to ADHD (which one older brother has).  How it can be tied to EE and other digestive and allergy issues (which the other older brother has).  I learned a lot from more books than I can remember reading right now, including Dr. Kenneth Bock’s Healing the New Childhood Epidemics

And I learned that these epidemics can be treated.  And children can recover.  Including from autism.

I started making calls like mad to get on lists to get Sam seen by local doctors to figure out what we could be doing to try to get our son to recovery.  And it was maddening.  For as medically advanced of a community in which we live, I was astounded that I couldn’t get an appointment with a pediatric neuropsychologist, or the highly regarded children’s hospital docs, who could actually give us a diagnosis for more than six months to over a year.  In fact, we’re still on several of those waiting lists with appointments stretching further into this year, and as far out as next fall.

But we just kept searching and calling and bugging and hounding and finally got him in to a doctor (not covered by insurance, of course) and got the diagnosis.  Along the way, we kept searching and reading and learning.  And now we’re working toward recovering.  So, this is my new journey as a Traditional Mom.  I'm still a woman who loves her family and wants to raise her kids with values, ambitions, and dreams.  The "raising" part has taken on a bit of a new meaning, but we will get get there. 

I don’t know how many people might read what I’m setting out to write here.  Maybe just my wonderful husband (hi honey!).  Maybe a few of the friends that have stuck with us so far.  Maybe a few of the ones we’ve lost touch with while trekking down this path to recovery.  Maybe just one person who becomes more educated on how to avoid the path we're on.  Or maybe just one who comes to know - like I have - that you're not alone.  Or maybe just me, years from now, looking back on the journey.  And that's cool by me. 

But if you are reading ... please come back ... and please share any comments or thoughts on anything I might post.  I will always keep reading, and learning. 

And I will never give up. 

    

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