What I learned in Chicago

Well, nothing short of a TON!
It was nice, but a bit overwhelming- a lot of information- I felt a bit like I was in medical school. Things I learned: Vaccines are bad! We will not be giving Ben any more vaccinations. If I had an infant, my advice would be to do them later- after age 1. They tend to give them too many too fast. The amounts of mercury is astounding. A disturbing book I started reading "Evidence of Harm" by David Kirby. Nothing short of "WOW".

I also learned a lot about the biomedical piece of autism. And that this is as important or even more important than any other intervention. This is figuring out with a doc exactly what is going on in Benjamin's body and how to fix it to improve neurological functioning. This can be in the form of diet, supplements, getting rid of metals (chelation), finding any yeast or fungal issues in the body, treating any "gut" issues, etc... 80% of autistic children have some sort of "gut" issue! I didn't know that! Some of this we're already doing, but I found out that there's so much more we can do!

Hyperbaric oxygen therapy- this was a new one on me. But the results seemed really good for a lot of kids! Something worth looking into.

I guess most of all I learned that there is no one "quick fix". What works on one child may not work on the next. The experts say that they have never seen the protocol look the same for two children. They will all respond differently to each intervention. I guess you just have to have a "try it and see" approach.

It was nice to meet some other families and know that they are going through the same issues that you are. It was nice for people to be able to actually relate. And it was nice to meet some parents of the "recovered" children. Children no longer diagnosed as autistic. There is hope!

Chicago tommorrow!

Hi all,
I leave for Chicago tommorrow to attend Autism One National Conference, so I will update when I return! Hopefully with some great information!

"It's Not Herbie, Mama, It's Froggy!"

Yep, that's what he told me this morning after I repeatedly kept calling Froggy by Herbie. I thought he was holding Herbie, not Froggy, but he quickly let me know otherwise! That's pretty good!
Recently I have been reading a lot about the vaccination debate. When you start looking into it, it's quite disturbing and confusing. There is a huge debate (I think right now the most debated topic in medicine) over whether vaccines are a cause (trigger) of autism- of course you have to have the genetic component of autism as well. I hadn't really thought much about this until my own child is now autistic and I'm the one trying to figure out what this "trigger" might be for him. I read on the CDC website- they have a whole page on vaccines and autism, and the last FAQ is what disturbs me the most- "should we delay vaccinations until we know more about the negative effects of vaccines?"- to me that says that they don't exactly know what the negative effects of vaccines are just yet. They say no, but hmmm.... it makes you wonder, doesn't it? I also read an article where a man named Jock Doubleday is offering $80,000 to the first MD or CEO of a pharmaceutical company or a member of the CDC to publicly drink standard vaccine additives- he first offered it on 2001 and has increased the offer steadily since then... there have been NO takers yet... yet by age 2, my son has received 24 vaccines.

Bless You, Mama

As I'm sitting at the computer, Ben is downstairs with his therapist working. I sneezed and from down below I hear, "Bless You, Mama!". Everyday I hear new things I didn't know he knew! We are continuing to see DRAMATIC progress. Tho we still have our issues, don't get me wrong... but as his uncle Russ put it, "he's a totally different kid!"- thanks, uncle. We had his transition evaluation for sooner start, and Ben did really well. His standardized scores showed normal/age appropriate in all categories except peer interaction/social. That's the score that would qualify him for services through the public school system after he turn's three if we so choose it- the developmentally delayed preschool. That's the hard part about high functioning kids, sometimes they fall through the cracks- for example, his language test scores are age appropriate, although every time you ask him what he wants to eat, it's always hot dog, and he can't tell you what we saw at the zoo, and he'll repeat random phrases at inappropriate times. And we still have the stimming issue as well. Those are the things that the standardized tests don't pick up on and are not normal. So, we still have work to be done- but OH have we come a long ways!

I enrolled Ben in a "normal" preschool today for Fall. Two days a week 9-11:30am. I figure September is a long ways away... who knows what he'll be doing by then!

I got the money!

Recently I applied to the State of Oklahoma for their Consumer Involvement Fund through the Dept. of Developmental Disabilities to attend the Autism One Conference in Chicago in May. Today I found out that they will be paying for my conference registration, hotel, meals, and parking (over $700)! THANKS to my Dad (Ben's Paw-Paw), he is providing airline miles for my plane ticket (my biggest expense). So I am attending for nearly free! Now if I can just figure out how to eat meals in Chicago within my $21 per day per-diem (yeah, right...) Your tax dollars- see, they are worth something! Thanks all!

A Trip To Dallas

Happy Wednesday! Well, we returned from Dallas Monday to see Benjamin's doc- Dr. Rao. Every time I leave there I keep thinking this stuff sounds really "hokey" and it is costing us a small fortune (like some $100 vitamin drops- one of the 12 supplements he is taking), but then again, I have to keep reminding myself that "something" is making Ben talk more, have better eye contact, etc... so something is working! We got the results back from the gene test we did a few months ago, but I wish I knew more to be able to tell you other than it meant more supplements and more restricted diet. Now we are doing a low protein diet- no red meats, nuts, or beans, or anything with added sulfates. Since we already can't do anything with milk, his little diet is getting smaller and smaller- good thing he's not a picky eater!

We also started doing the transition evaluation for Sooner Start- to see if Ben qualifies for services through the public school system at age 3. So far the standardized testing is showing that he has some splinter skills all over the place. We have only addressed language so far- but he has some language skills (receptive or expressive) that are up into the nearly 5 year old range! I know he's a smart little guy, and it's all in there, we just have to get it to come out!
Ben is continuing to talk more and more- attention is starting to be an issue. Getting him to focus on a task and not run (pace) is difficult and probably will have to be addressed in school. So far, it is looking like Ben is not going to qualify for services, which I have to admit I am happy about! I would like to have the access to services if we so choose, which would be the only down side to not qualifying, but not qualifying also means he's scoring in the "normal" range. We've only done a portion of the test, though, so I don't want to jump to conclusions just yet... The rest will be next Tuesday... I'll let you know!