Thursday, January 13, 2011

How it all started Part Two. What?! Even longer and MORE words?!

Even though Ro wasn't technically diagnosed yet, we began 'seeing' Dr. Mumper, whose office was down in Lynchburg, VA. By 'seeing', I meant that we did phone consults and communicated mostly through emails.  We did drive down there once to meet with her and so that she could see Ro face to face. She then ordered a battery of tests; blood, stool, and urine tests.  The results came back as a bit of a surprise.  Ro had very high levels of yeast in his stools, which was all connected to the use of antibiotics as an infant, and the fact that he most likely had "leaky gut syndrome." Here's what happens with antibiotics. Sorry if you are a firm proponent of them. I'm not and here's why. (Scroll to next paragraph if you don't want to hear my rant.) When you take an antibiotic, it kills off all of the bad AND good bacteria in your intenstines. This means that now, there is no happy flora to keep your gut functioning well and protected. So when the bad bacteria comes, it now has lots more room to make it's home, instead of before the antibiotic was taken, when they were at least living side by side. Now the bad guys take over. And voila, yeast forms. And stays. And if you like any kind of foods with high glycemic levels, it will feed on that and stay.  Ro took lots of antibiotics when he was little. He had several ear infections (due to a low immune system which i believe was mostly caused by vaccines. What?! Still reading? Stay with me.), and an infected spider bite that required some really strong stuff. His poor little gut was overridden with yeast. This made his poop wierd and SUPER stinky, and affected his behaviors as well. (That is again, a whole other blog post in itself.) Just trust me when I say that if you are going to take an antibiotic, please pretty please take a probiotic too.  And eat lots of yogurt.

Anyway, on to the yeast meds. We took Ro off of ALL sugary foods; fruits, juice (mostly), and even starches that turn into sugars. We were determined to starve this yeast out and get our boys gut healthy  so it could absorb nutrients again.  Long story short, while working with this doctor, we tried several different anti-fungal medications, only one of which showed any changes, but for some reason we didn't contine with.  The problem with the medications was that yes we were treating the yeast, but we weren't solving the real problem. We were going in circles. Treat the yeast, it comes back, treat it again, it comes back. Why wasn't it staying away? There's got to be something at a more cellular level as to why this happened and continues to need treatment. So, rather than going in circles and debt, we stopped working with this doc and went on to other things. More on that later.

We also learned that Ro had high levels of lead in his blood, most likely from the water we drank when we lived in an old log cabin while he was an infant, although we can't be sure of that. Regardless, that was when we started seriously considering chelation, the removal of heavy metals from the blood. It's controversial, and since we haven't felt God leading us there yet, we haven't done it.

In the last post, I said that I'd talk about how we realized something was up with Ro in the first place, or rather how we realized it looking back.  Here is a quick list of odd behaviors that we just dismissed as quirky.  Once you see it, you'll wonder if we were even paying any attention, but I assure you, denial is a very strong state of mind.

-toe walking
-lack of interest in playing with other kids
-repeatedly hitting leaves with a stick to watch them bounce
-tapping a water bottle to watch the water move, over and over
-zoning out for long periods
-watching things pass by his peripheral vision

-obsessed with watching bubbles
-flipped over trucks to spin the wheels and watch them for long periods
-loss of language and imitation
-far off look in eyes
-unresponsive when name was called
Ro just a few months before the regression began
this is a photo of Ro at just over 2 years old
A few months before the diagnosis, Staring off into the sky
In June of 2009, over a year after my talk with my friend, we finally got Ro in for an evaluation to get his official diagnosis. By this time, we knew he had autism but presumed it was just on a mild level.  After the developmental pediatrician did her thing, she said the words that took our breath away and changed our families' course forever:

Classic Autism: Severe.

Oh my Lord. I was not prepared for that. I was not prepared for the feelings that would come after.  I was not prepared for the barrage of doubt and pain that crept into my heart in that moment. Severe? What does this mean?  I asked the lady if she was sure.  She assured me that the harsher the diagnosis, the better his services would be.  She then quietly said, "I rate harsh." I knew that she was meaning to tell me that she gave him this rating so that he would get the best possible services that he could.  She ended up showing me the test she gave him and that she could have gone either moderate or severe, but veered to the more severe so that he'd be guaranteed the most aid.  I was thankful for her thoughtfulness and took a little comfort in knowing that he was in fact only moderate.  On our way out, she handed me information on how to start an in-home ABA program (Applied Behavior Analysis).  This is the gold standard for autism treatment and has been scientifically proven to be the most effective way to teach a child on the spectrum. 
I went home and dove into the research yet again. I bought books and read them all.  People had seen AMAZING progress! This is something that we had to do. Just had to. No ifs, ands or buts about it.  It was extremely expensive, but I had never felt so strongly about anything for Ro until I learned about ABA. Joel was soon on board too, and so the search began for a consultant and therapists.  The search didn't last long though...more on that in a minute. I feel like you need to know where our hearts were at that point in time...

In the past 2 years, but particularly the months following that talk on the couch , there have been more than a few occasion in which we have doubted God's goodness and faithfulness. There were times when we honestly were hanging on to believing by the thinnest, shortest thread.  Actually, to be honest, Joel and I both experienced more than a few moments of wondering if God was even real and if he cared at all.  Such an incredibly dark time.  Anger towards Him was all that we could feel sometimes. And fear that nothing would change. That He wouldn't come through and help. That He really wasn't good after all.  This diagnosis felt like a death, at least to me. Everything that we 'knew' about autism told us that our son would never be able to connect emotionally with us or anyone else, and would be living in his own little world with no desire to communicate or be part of ours.  That, my friends, was a very hard pill to swallow. It took us almost 6 months after Ro's diagnosis to be able to start feeling even an inkling of hope again.  And if you are a friend of ours who was going through this with us at the time, know that we felt the love. You couldn't possibly know how much your support and prayers meant to us. We see, looking back now, that of course God IS in fact good and He knows what He is doing, and He gave us you guys to walk with so that we didn't need to bear the burden alone. 

Moving on...

Because he finally had a diagnosis, we were able to start him in special needs preschool that was right around the corner, which he and I both needed for our sanity's sake. He went three days a week, all morning. It was a very special time for Asher and I to have together, and after the first few weeks, Ro got used to it and enjoyed it. He didn't really progress or learn much, but it was much needed regardless.  However, our main goal was to start an in-home ABA program for him, which meant that we'd hire a consultant and at least one therapist to work one-on-one with him in our home for at least 4 hours a day.  We knew that if we were going to afford this, we'd need to move into a much cheaper and smaller home, and the idea of living near family was very appealing, so after a LOT of prayer, talking, prayer, more talking and lots more prayer, we decided to move back to NY.   It was an incredibly difficult decision to make, as our best friends lived only next door and moving meant leaving them for good.  We had to really seek the Lord and ask Him what was the absolute best thing for Ro.  He made it clear. So, we put in our notice and our landlord let us out of our lease. We were moving back to NY to begin an in-home ABA therapy program for Ro. Joel's boss has kept him on working remotely from home and Tom,  if you ever read this, (which, if you are, that means you are even cooler than I thought you were) I can't tell you how much we've appreciated your support. You're seriously the best. boss. ever.

We got to NY and moved in with Joels' parents while we began our search for a home,   and an ABA consultant and therapists.  It was much harder than I thought....

Stay tuned for the final chapter! :)


Jessa said...

Really enjoying reading your story Jenn - thank you for sharing. So sorry it has been such a tough road for you guys.

Liz Carey said...

Jenn, I remember that day we talked on the phone about diet. digestion, etc... I remember how intimidated you were about learning all the ins and outs of things, of reading and researching. I knew right then and there that you would be AMAZING at it and you are!

You now have an arsenal of information and a solid testimony at that, to share with people in need.

Thank you for being such an encouragement to me!