It's Almost School Time!

Hello all-
Well I am finally back up and running again after my back surgery. And ready! Ben is doing absolutely fabulous. He is talking more and more every single day. It is nearly every day that he will say things that make me say, "I didn't know he knew that word". Last night he slipped on the wet tile and said, "It's slick." hmm...

On another note I had an appointment with the doctor in Austin. He is fabulous. He is obviously an expert on autism and had a new book come out in July. His prices are outrageous (I'm embarrased to even tell you how much), and isn't covered by insurance, but I think it's going to be worth it. He is starting Ben on the drug Diflucan to kill any yeast that may be in his body (a test we did revealed he had high yeast levels). We will be finished by the time school starts, which is good because we could see some behaviour issues during die-off.

Ben's school is finalized, he will be going to Leaps Preschool at OU Health Sciences Center. He will get speech therapy there as well. He will go three mornings a week. We are so excited about this opportunity and think Ben will do so well there. There will only be 9 kids in his class, and about 5 teachers/aides. Amazing! He starts in a few weeks.

Can you believe it's almost fall? Can you believe Brandy will be 30 next week? After having back surgery, I am especially feeling old!!! :)

A Little Update

Hello all! It's been a while since I've posted last, so thought I would give you a little update. Benjamin is doing terrific! I think we are seeing some positive changes from the gluten (wheat) free diet. Ben seems more engaging, alert, and responsive. He is becoming so funny! I (Brandy) on the other hand, have been not doing as well. I hurt my back again, this time seriously. It's been a nightmare of a week, it took us 3 doctors and a trip to the ER to finally get an MRI to figure out I have 3 compressed discs, 1 herniated disc, and an annular tear in another disc. All I can say is Yowch. I never dreamed of so much pain... Anyways, I got some fantastic drugs and am hanging in there. I see a neurosurgeon tommorrow and will know a plan of action. Yesterday I got out of bed and Ben told me, "Mama sleep. Go back to room and sleep". You better believe I hoisted myself out of bed and got up! :)

On another note, last week Ben attended a "typical" preschool classroom. He sat in the class with his OT for 2 hours and participated with the other kids. He did fabulous! His OT said he was totally indestinguishable from the other kids. That's exactly what we want! The only issue he had was doing his hand and mouth thing going down the slide. Yay Ben!

A trip to Colorado

Hi. We recently went to Colorado for a family vacation. We had a great time! Ben really loved riding the train through the Royal Gorge. He kept saying, 'ride Thomas?'. Thomas the Train is his newest love. We play, watch it on TV, etc... he loves trains!

The last week has been rough. Ben has been a little "off", we're just not quite sure what it is. It's been hard to hold his attention, get his attention, and to get him to focus. His self-stimulation has also been somewhat alarming. We're just not sure what's causing all of that!

Today was our first day of the GFCF diet- which means Gluten-free and casein-free (no wheat, no milk). It's tough. There's so little he can actually eat! But we are adapting and have come to the conclusion that we will just have to get everything at the health food store. We had already been doing the casein-free (milk) part, but we are now adding the wheat part too. We had an appointment with a nutritionist last week from Austin- and she recommended that we try the GFCF diet for 3 months. If we don't notice enough change to warrant the diet- we won't continue. We also added some more supplements and we making sure that Ben is getting everything he needs in his diet. At the end of July we will meet with the bio-medical doctor in Austin.

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!