Thursday, January 17, 2008

Trip to Rhinebeck, New York

Myles-A-Part founder Tina Dula shares the experience of getting biomedical treatment for her son Myles in New York.

I was on the Montel Williams Show in November talking about Autism. I met a doctor on the show, Dr. Kenneth Bock, who has experienced a lot of success recovering children from Autism. Well, I won’t bore you with all of the details, but he managed to squeeze Myles in for an appointment. He told us to come for a week, January 7 – 11, and to be prepared for a pretty intense time. Repeat after me. Understatement.

We started with an exhaustive meeting with Dr. Bock; nearly 2 hours of him pouring over Myles’ medical history, looking at previous lab tests, delving into our journey so far, and doing the medical investigative work that is his hallmark. I guess Myles thought that wasn’t so hard since he was just looking at pictures in photoshop the whole time...but then started the hard part. I’m not sure if it was harder for him or the 3 adults it took to hold him down for the needle-palooza which ensued. Myles has never gotten IVs, but he did every day we were there. The first day it was just for 15 minutes, but from then on it was two-hour IVs. He’s an old pro now. This was part of the process of detoxification from heavy metals that Myles will undergo for the next...however long it takes. It’s called chelation. Dr. Bock wanted to make sure that Myles tolerated this treatment well before we identify a doctor locally who can do it for us, based on Dr. Bock’s instructions. Fortunately, we’ve already found someone in Roswell, GA.

Needless to say, the first night we got back to the room, he started saying “bag, bye-bye, car”, and proceeded to start re-packing all the bags we had just unpacked. That was pretty much the routine every night when we got back to the hotel. There are pictures below that kind of tell the story of our week better than I do.

We have a phone consultation scheduled in 3 weeks with Dr. Bock. We’ll review the results of several tests we ran while there, and then determine our next steps based on what the tests tell us. In the meantime, Dr. Bock added more supplements to our current regimen. By the time we incorporate everything, Myles will be up to about 40 pills a day. He is living up to his name which means “solider.” Maybe if we’d named him something that meant...wuss we wouldn’t be dealing with this. You never know, huh? :-)

Dr. Bock did not promise us any overnight miracles. It’s going to be hard work on everybody’s part. Changing the way we eat and I cook and we live. And more needles and more pills for our big boy. And more money that we usually don’t know where we’re gonna get, but somehow God always provides. We are in it for the long haul. Before we left, Dr. Bock grabbed Myles’ chin and looked him straight in the eye, and said, “Myles, one day you’re going to come up to me and say, ‘Hi, Dr. Bock. How are you?” I could tell he believed it. And so do we.

I did meet a woman there, completely by chance, to use a phrase I really don’t believe in. At our hotel, I saw a boy, older than Myles, who obviously had Autism. His mom was watching Myles the same way I was watching her son. We smiled and she asked If I was on vacation. I told her I was there to see a doctor for my son. Hint, hint. Your turn, lady. She admitted that she was, too. She had come all the way from SPAIN to see Dr. Bock. Her son was pretty severe. She told me her story, and my heart swelled. Her son has broken her nose twice from head butting. She’s had a couple of breakdowns, and mentioned that she has to replace her TV every couple of months because her son smashes them, along with glasses and many other household items. They had only gotten his official diagnosis a few months ago, and she was lost and desperate and grieving. Everything I had been when Myles was first diagnosed...and am still from time to time on a bad day. I shared as much information as I could fit on the Marriott notepad we had – websites, books to read, next steps to take, etc.. The look in her eyes at just that little bit of encouragement and connection was priceless. I was so glad that we were there when she was. God constantly reminds me that this is not really about us. We are a part of something bigger. The Dulas want to shine in the midst of this; to glow with God’s grace in the midst of difficult circumstances. Thanks to so many of you who keep us encouraged on this journey.

Myles was AWESOME the entire flight...when he wasn't napping, he was fascinated and stared out the window the majority of our time in the air. Here he is checking out the scenery as we land in Albany, NY.

Sunday night, we arrive at the hotel and there's 3-4 inches of snow on the ground!!! Myles was blown away and would've stayed outside in it for hours! After a long day, it didn't take a lot to convince him that it was time to get some rest!

Waking the Little Prince with a maternal morning kiss! Our mornings started pretty early for the most part. Unfortunately, each morning Myles was disappointed to wake up still in New York. I think that state may forever mean needles and IVs for him!

Day one was a lot of investigative work with Dr. Bock.

Obviously, Myles had NO CLUE what the next five days had in store!

Having access to some of his favorite Sesame Street videos made the "IV-time" tolerable.

Someone is tired of toting around an IV!!!

One mom described HBOT really well. So, I'll use her explanation. Gas under pressure is more likely to dissolve into liquid. Oxygen is the gas with mild hyperbaric therapy, and the liquid is blood. But under pressure, oxygen doesn't just hook up to red blood cells the way we're used to thinking about it, it also dissolves into the plasma. When that plasma circulates near dormant or injured tissue such as an autistic brain, a bruised muscle, a sprained tendon, or a surgical wound, the oxygen in the plasma dissolves further into the damaged area than the oxygen that's attached to the red blood cell in the conventional delivery system can.

A good day in the chamber!!!

Did we mention that Mommy always gets in? Daddy’s kinda big for the chamber. He claims to be “claustrophobic.” Yeah…right!

Mommy & Myles goofing off in the Hyperbaric Chamber

Myles and Daddy get a little R & R after a long day at the Rhinebeck Health Center.

Friday, November 16, 2007

The Montel Show

I wanted to let you know that I got the opportunity to be on the Montel Williams Show on Friday, November 16. It all happened quite fast. The producers contacted me on Friday, had a camera crew at my home the next Monday, and flew me to New York City on Wednesday. We taped the show Thursday, featuring a mother of a child recovered from Autism, Dr. Kenneth Bock, a renowned DAN! doctor (DAN! - Defeat Autism Now!), and me. I had the opportunity to share our story and continued efforts to recover our son Myles. The story focused on our personal experience, not the Myles-A-Part Foundation, but the Myles-A-Part website is posted on the Montel site as a reference. Log onto and click on The Show, Past Shows. The name of the show was Living A Nightmare: Autism and Tourette's.

Thursday, July 19, 2007

We Are Official!

I am pleased to announce that Myles-A-Part is officially a 501(c)(3) organization! I appreciate everyone who has donated even before we were officially tax exempt. As I have mentioned before, those donations are retroactively tax deductible now that our status is confirmed. And there are many of you who have been waiting for this crucial step so that you can add Myles-A-Part to the non-profit lists at your places of employment. Please contact me if you need any information to do so.

Be sure to check out our website for an overview of the three anchor programs which comprise our service to Autistic families. We are excited that a donation to Myles-A-Part is an INVESTMENT into the future of an Autistic child and the well being of a family. I know those are big words from a very young organization. Time and patience will prove them to be true!

Thank you again for your support!

Thursday, May 31, 2007

Hearts & Crafts @ the Myles-A-Part booth!

Team Myles-A-Part Walks for a Cure!

Team captain Heather Duffie and fellow walker Tammy.

Pretty Walkers!

Strollers for a Cure!

Beth, one of our volunteers, helped the kiddies
with their crafts at the Myles-A-Part booth.

Tina Dula, Myles-A-Part Founder, talks with a concerned parent.

The frisbee says it all! Enough is enough!
That's how we feel about Autism, too!

The family that walks together ...

Tina Dula with her son - The "Myles" in Myles-A-Part

Sister, sister! Tina Dula with her sister Rukel.

Spousal support. Founder Tina Dula with husband Sam.

A great friend! A great lawyer!
Attorney Eric Glidewell helped get Myles-A-Part off the ground.