Monday, August 27, 2012

Unicorns and Frequent Low Dose Chelation

So, my family and I met a boy named Zach the other week. He's the son of a colleague of my husband at work. He's 14 years old...and as I mentioned in a previous post, Zach used to have autism.

He doesn't anymore.

Really. He officially lost his diagnosis two years ago. That makes him a Unicorn.

A "Unicorn" in the autism world is probably just what you imagine it to be, even if you've never heard the term before. It's used to describe a child, or teenager, who used to have a confirmed diagnosis of autism (by a psychiatrist or developmental pediatrician) and who has since lost that diagnosis and does not fulfill the DSM-IV criteria of autism spectrum disorder any longer.

I don't know who came up with it, but I wouldn't be surprised to learn that the term was coined by a doctor or some other government official as a snarky way to describe that mythical beast that they do not believe exists--the bio-medically recovered autistic child. After all, autism is thought to be a genetic disorder...right?

But these children do exist. And although I'm sure that use of the term Unicorn was supposed to be a condescending put-down, I think it's a great name to describe something so wondrous and hopeful. 

I've heard about these kids, these Unicorns, for years, ever since I started reading all those autism books when Kiki was 18 months old. But I've only actually met two of them, face to face, at least that I've known about.

One was the son of our DAN doctor back in Philadelphia, and the other is Zach.  Both are boys who had  confirmed autism diagnoses from more than one Developmental Pediatrician, before they were 3. Both are boys whose parents jumped into biomedical intervention for their sons' autism and believe, completely and with no hesitation, that biomedical intervention changed the course of each of their boy's lives. They know this to be true; it is not a theory to them. They do not go around trying to convince others of this truth; but if you ask them, they will tell you. They believe that autism is treatable, curable even, and they have their own sons as living proof.

When I met Zach, on a weekend in May, he and his friends had just finished losing a volleyball game in a local tournament. He was actually thrilled that he could now enjoy the rest of his afternoon and evening, checking out girls and goofing around with his friends instead of playing volleyball.  He was cute, and funny and self-deprecating and just about the coolest 14 year old I'd ever met. According to Jeff, his dad, when Zach was 7, he was such a flight risk and behavioral handful at his special ed classroom in school that they not one, but two aids with him at all times. 

When I met Conner, my other Unicorn encounter, he was with his dad at the HBoT center we were using back in PA. Conner was 10. He also seemed completely charming in his utter normal-ness. His father is Dr. Pat Elliot, our DAN doctor at the time.  Conner was annoyed that his dad had to stop by the center to see us on his way to taking him to his baseball game, but not so annoyed that he was rude. A normal 10 year old. But, as Dr. Elliott tells it, when Connor was 3, he was mostly nonverbal but for scripting tv, liked to bang his head against the wall or floor and run around with his arms stiffly straight out.

I didn't go looking for these two boys. Well, not really. But I did find them, because I'm always on the lookout for therapies and ways to help my boys' autism. As I have come across therapies and met people who I thought would help my boys, I've met Moms and Dads like Zach's and Dr. Elliott. 

I didn't always believe that biomedical intervention would work. For a long time, I just assumed that my boys were who they were, that their autism was just a part of them. And while I still do believe this to some degree, I believe there is much that we can do biologically to change the symptoms of autism and thus change the minds of these often quirky, sometimes peculiar, and always different children.  

I've taken the boys to see Naturopathic Doctors and DAN Doctors, nutritionists and occupational therapists, Homeopathic doctors and developmental pediatricians, psychologists and even one or two doctors that I strongly suspect were selling their own brand of snake oil.  I've always walked into to every meeting with hope, and a healthy dose of skepticism.  Some of those appointments I walked out of thinking "Wow! I'm excited!" and some of them I've walked out of thinking, "Wow. What a load of bullshit!"

Nowadays, we are doing frequent low-dose chelation.   I have heard of chelation for years now.  While I admit that it has always intrigued me, I will also admit that it scared me. But slowly, as my boys bodies began to heal, as they became stronger and less sickly, as they began to eat better and more nutritious foods...well, I began to think that maybe I it was worth trying.

When I meet kids like Zach and Conner--kids who both have been through multiple rounds of chelation and are now no longer autistic--I think I owe it to my kids to try it. 

So, after lots of research on my part, and a little pushing from some parents I know, we've jumped in. We are on Round 7. I'm not going to tell you that it's been miraculous, because it hasn't. But I do see differences in Cam's behavior, in his language and most importantly, in his ability to attend to all that is going on around him. 
A wild ride!
 My hubby and kids on the Orange Crush Coaster at Nickelodeon Universe.

I'm going to do everything I can, and give it my best shot to give each of my children a chance at their best life possible. And I don't think I'm that different from any other loving parent that way.