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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.

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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.

 

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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?

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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…

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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. 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?

 

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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.

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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.

 

 

 

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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!

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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…

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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.