Wednesday, January 12, 2011

How it all started *UPDATED*

*UPDATED info in purple*

Well, as promised, here is part one of the story of our journey with Ro and the Autism Spectrum thus far. This is going to be wordy and long. Fair warning.  

On March 6th of 2008, when Ro, our firstborn, was almost 2 years old,  a very dear friend sat me down on my couch one night and told me that she had visited a website called and watched some videos of children on the spectrum. She immediately started weeping, as she knew she saw Ro in some of those behaviors.  She prayed and prayed, and felt that she had to tell me.  The conversation we had on my couch that night was one I will never forget. It was a knife in my heart.  I was completely disagreeable, offended, cut to the core, and told her that I never wanted to speak of it again unless I brought it up.

She had to be wrong. Autism was the Rain Man.    It just wasn't possible, end of story.

This wasn't the response she was looking for. She was hoping that she'd be able to help me work through this and talk about it, but really, I wanted to rebuke her and tell her to leave and never talk to me again.  (Keep in mind, this person was and still is one of my besties and knows all of this.) In fact, for at least a week afterwards, even though we saw each other almost every day, I didn't even look at her. Forgiveness was not even in the universe of my vocabulary. I could barely even see past the hurt and fear that clouded my every thought.  And to top it off, that night, I found out I was pregnant with Bella.

Before I go on, I need to give you alittle bit more background on Ro. He was always very intense and different, even quirky (will talk more about his 'quirky' behaviors in next post). But we never saw it in the moment.  When he was 18 months old, I did realize that his language wasn't where it should be, so I started looking into that, but whenever 'autism' popped up in the google search (pretty much never a good idea to google anything having to do with health), I just clicked past it. Not possible.  And when I would ask the pediatricians (I asked at least three different ones) if they thought there were any issues, they ALL said he was just a quirky late bloomer. Seriously? Three doctors? Fail. Ro continued to lose language skills, social skills and even began showing some physical health issues. This led to the next thing.

After my friend confronted me, my eyes slowly began to open. Very reluctantly though because let's get real here.  You never want to be analyzing your own kid for problems of this nature. But alas, it's where I was. And Joel was barely even able to acknowledge that it was even a possiblity because he was hurting so badly, so I was on my own. No fault of his either. I think a father's heart is much more affected when something like this occurs to their firstborn son.  Needless to say it was a very, very dark time for both of us.   I remember several days, maybe even weeks, that Joel and I could barely eat or sleep because of the darkness that seemed to surround us.

One day, several months after the talk with my friend, Joel and I were on a walk with the kids, and were kind of skirting around the issue when all of a sudden, I just yelled out something like this. "I am so tired of running from this! We are going to do something about it." The next day, as Joel was praying for me for wisdom, at that very moment, I came across something that had never appeared in any of my google searches before. "Autism Recovery." At this point, I sort of 'knew' that Ro was somewhere in that category, but I couldn't bring myself to admit it, so I clicked on this and began reading about it under the guise of 'well, he shows lots of these symptoms so even though he's not autistic, maybe this stuff could help anyways.'  This is when my world turned upside down. (Again.)

Upon researching more about this, I learned about things like the Gluten Free, Casein Free Diet, ABA Therapy, Vaccine Injury, and the list goes on and on. You mean there are things I can actually DO to help my boy?  As soon as Joel got home, I told him about it and we knew it was time. So, within a few days, we took Ro off of gluten and dairy and guess what? We saw immediate changes.  The very FIRST day, he started sleeping through the night, his rosy cheeks went away (rosy cheeks are a common reaction to a milk sensitivity, as is waking in the night), and he actually started responding to his name. That was proof to me, and I'm still a firm believer, that autism is not just a neurological disorder but an autoimmune disorder and a gut issue.   Did you know that studies are now showing that autism is affecting 1 in every 94 children now? That's like a bazillion percent increase from when you and I were kids. And did you know that the increase in autism directly correlates with the increase in immunizations? Oy. I could go on about this too, but let's stick to Ro and and I'll try and stay off my soapbox. :)

We did the diet thing for a while, and still do, without adding too much else.  We did start seeing a holistic doc for him too, to see if there was other stuff we could do, and explored chelation, which is the removal of heavy metals. Upon more research though, I found that if his little gut does have issues, it might be better to solve them first before trying to attack something like mercury in his system. So, we still haven't done that yet. Somewhere in the next 6 months, we did finally admit to ourselves that Ro was in fact on the spectrum somewhere, which actually made it easier to talk and discuss about what to do next.   I became a full time researcher. I read every book I could read on autism, and found a doctor we thought could help.  Even though she charged $400/hour, she was the best, so we began down the road of finding out just what was going on in our boys' body.

 Kind of dry, right? Part 2 coming later today, maybe tomorrow. Takes a while for me to get these thoughts down. It's still not that easy to talk about, but it's a little therapeutic. Thanks for listening!


Carlaflower said...

Thank you for sharing this, Jenn. There are some parts of the story I knew, and others I didn't, and I'm looking forward to the rest of it! It takes courage to share something so close to your heart, I think you will bless a lot of people with Rowan's story.
love you!

Lora said...

i am so blessed to know you! you are such a strong, inspiring woman of God. God has CHOSEN you to be Rowan's mommy. And you are doing an AMAZING job! i love you, friend!

Carolina said...

thank you for sharing your family's story with us - you are an awe-inspiring momma and joel is a strong example to all father's - we are thankful for each moment of interaction with your lovely family & for the many, many more to come! thank you for allowing us to be a part of this journey with you!

SEAN said...

I'm anxiously awaiting the rest of the story!