New Video from TACA

from Lisa Ackerman:

Be prepared to be moved.

http://www.tacanow.org/video/hope-video.htm

The goal of the video is to REPLACE the current “slide show video” on TACA. Almost 1 million folks have watched it since its release in November 2004.

It is to educate on autism, get a glimpse of what Autism is, how it affects the family and PROVIDE HOPE.

We have not blasted this to the world yet.

Mr Michael – our videographer (started on this last summer) has 25 hours of video. It was on five families. He decided to focus on three for the initial video – then add in the other families for the related issues.

Also: we are working on small video vignettes that talk diet, early therapy, chelation, families w/ multiples, tracking progress, etc. We will have these by section on the TACA web site so a family can watch a video by section. All these videos will be available on the TACA web site.

Note: Quick time is required (download link is at the video page. It takes 2-3 minutes to load and is about 14 minutes long.)

Preschooler Abandoned In School Bus

Officials: Special Needs Student Spent Hours Alone

HARTFORD, Conn. -- Authorities are investigating how a young special needs preschooler was abandoned on his school bus for hours. A 3-year-old boy, who school officials said has an autism-related disorder, was supposed to be in classes at Burr Elementary School in Hartford's South End.

Instead, the special needs preschooler was left behind, stranded on a bus by himself for roughly six hours.

Besthoff said the bus driver parked the bus in a lot in Hartford's North End before getting back on the bus for the afternoon route. That's when the driver is said to have heard a scratching sound. The boy's mother told school system officials that the boy, who is not verbal, appears to be OK.

Hartford Mayor Eddie Perez, who is also the chairman of the Board of Education, said he is outraged and is demanding immediate answers. In addition to questioning the bus driver and bus monitor, officials have also questioned the district's policy about students who do not show up for class. Current policy mandates teachers to call home the first day a student is absent.

The city admits that the boy's parents were never contacted when he failed to arrive at school. The city said that teachers may not call home for two or three days of a student not showing up for school. In response, district officials said the policy of teachers calling parents the day a child does not show up for class will be enforced. "This is a failure of the system. We got to look at the system, at the policies we have," Perez said. The contractor that hires special education buses for the city said that the bus driver and bus monitor were suspended without pay pending the results of an investigation that is expected to span several days. "I talked to the superintendent and asked him to make sure that there will be consequences as a result of this," said Perez said.

A number of Hartford schools have started a pilot program that involves an automated phone system to call a child's home each day the child is absent. Perez said he hopes to have the automated system in place for all 42 of the city's schools by Jan. 1.

---------------------

Funny how the local ESD can't understand why I refuse to bus Derek and would rather drive him to all ESD related services. A few weeks ago while having lunch with my husband I was flabbergasted as I watched a local school bus pull into the parking lot, it was an obvious special needs bus, with students on board. I watched as the driver stayed at the wheel, but the aide jumped out, and came inside for almost 10 minutes to pick up food and then boarded the bus with it. What if something would have happened in those 10 minutes?

Reading that story above though, makes my stomach turn and my heart ache.

New Blogger

hi,

i just started a new blog tonight as the first step in what promises to be a major (read: long term!) project.

http://cureautism.blogspot.com/

i am going to be writing articles to submit to magazines and newspaper, possible a radio feature for a few NPR stations (if we find the dirt i think we will), and a film documentary. once the information starts to come together we are going to start putting it out there with the film being the last thing that happens.


could you please pass this along via your bulletin since you are have so many myspace friends who are dealing with autism? gathering people's stories is the first step in starting all of this.


many thanks,
jessica davis


------------

I'm adding you to my list Jessica, I wish you much success with this! Its wonderful to know more people on our side.

Joe Barton Autism Parent Meeting - TURNED AWAY BY POLICE!

Thank You Mike!

DAN! Conference Seattle WA, Oct 6-8th 2006

Recovery from autism is no longer just a dream. Thanks to our dedicated physicians and scientists in the DAN™ project, remarkable improvement and frequently even recovery have become commonplace.

More progress has been made in developing effective treatments for autism in the past 3 years than in the past 3 decades! Thanks to the parents, dedicated physicians and research scientists who make up our Defeat Autism Now!™ team, many of whom will be speaking at this conference, recovery from autism is no longer just a dream. Recovery is now a reality for a significant fraction of the population of autistic children, and the proportion who recover is increasing steadily (see our video of recovered kids at www.Autism-RecoveredChildren.com).

When Sidney Baker, MD, Jon Pangborn, PhD and I convened the first DAN!™ Conference (actually, a think-tank with 30 participants) in 1995, we knew we would make progress. But the surge in progress we are now experiencing is truly astonishing.

The autism world has taken notice – our DAN!™ doctors and researchers are now in high demand at non-DAN!™ Conferences in the U.S. and overseas.
Victory over autism is within reach. There are still important gaps in our knowledge, but we are filling them quickly.

– Bernard Rimland, Ph.D., Director, Autism Research Institute


For more information, registration, and schedule please visit HERE

"CAN List"

Last month Derek had an allergy test ran, this was his first we had been able to have done. We knew from trial and error that gluten and casein proteins are not good for his system, and I suspected that the little amounts of soy he does get probably wasn't either.

I certainly wasn't expecting the list of allergens we got back though:

All dairy
Garlic
Cucumber
White Onion
Pumpkin
Radish
Zucchini Squash
Almonds
Amaranth Flour
Kidney beans
Lima beans
Pinto beans
Soy beans (or any soy for that matter)
String beans
Coconut
Lentils
Oats
Green peas
Peanuts
Sesame
Wheat/Grains
Honey
Eggs (white and yolks)


A lot of it was a bit of a shocker. It probably took me a good 24 hours to process this, I felt pretty defeated at the time, that the gluten and casein hadn't been the only key all along. I roamed around the house, digging through kitchen cupboards and the fridge saying "he can't have _____ anymore, he LOVES ____! What am I going to do now?"

So after my little pity party, I realized the list of "can'ts" in my head was the issue, I was focusing on what he can't have anymore. Instead I opened up a notepad and started writing his Can List. I went through his foods and started finding replacements, or finding stuff he currently ate that was still ok. The list keeps growing and I feel much better about this.

I am so thankful too that the two years of gfcf have helped him so much with food, and other treatments and time have made food adversions to taste, texture and color disappear. To replace his peanut butter I bought hazelnut and cashew butters. He also always had honey on his sandwich, which I replaced with three different kinds of pure all fruit spread. He ate a hazelnut and strawberry spread sandwich last night without issue. Then asked for another :)

We'll have some rough days ahead, a few favorites are on that list, and just cannot be replaced. He loves black and pinto beans with rice. No suitable replacement for that. It will work out though, it has in the past.

My advice to parents just starting out on a gfcf (or whatever free) diet : Rotation, Rotation, Rotation! Do not end up in the same spot as we have here. Much of this has come with little rotation. I've been giving honey on his sandwiches for two year, only rarely have I given him jelly. I was too concerned about phenols. He eats a lot of legumes, hence why black beans, pinto beans and peanuts are up there, I used that as a protein source because he ate such little meat. I should have been offering the meat more often than I do. We settled into a food pattern with him, so happy that he would eat more than just the 4 foods he ate two years ago. We worked so hard the first 6-12 months on getting him to try new things that when it seemed like he had a more balanced diet (anything more than milk, yogurt, applesauce, banana and french toast is balanced!) we stopped trying so hard.

Now we know better. The good news is that hopefully we'll be able to add some of these foods back in, slowly, on rotation. I've learned to rotate what he will be eating. Instead of all rice bread, rotate in tapioca based breads too. He's drinking all rice milks, so I'll use a potato based milk as well. I also bought two different pancake mixes last night, one is mostly rice based, the other is corn and tapioca based. I cannot stress this enough, because you don't want to end up here!

Cooking is going to get interesting, seems garlic and onion is in everything! I want to make chicken tonight, and all my spices are blends or have the above in them. Curry powder has onion and red pepper. Lemon pepper has garlic. All the Mrs Dash have garlic or onion in them. I need to get creative (any suggestions from anyone?).

For now I need to go add to the "Can" list, afterall, its so much more important than "can't".

Do You Ever Relax?

Interesting question huh?

I'll explain why I'm asking. Yesterday we decided to head up to the mountain to a beautiful lake that we've camped at in the past. Part of our extended family was up there camping and even took my middle son up with them. We thought we'd stay for a few hours, let Derek play in the lake and just "relax".

I think relax was the furthest thing from my mind, and as we drove home and I listened to my husband rave about how wonderful it was up there, and how he had such a great time, I realized how opposite that was for me.

The mountain and lake are beautiful, and I love camping. I can deal with the dirt, no showers and cooking over a fire just fine. I've resisted camping though since we've had Derek, and the last time we were camping was 5 years ago. I have visions of Derek walking off, drowning in the lake, getting burned on a burner or the camp fire. Just don't see how it would work.

In a way he showed me that camping with him is just not possible. He was happy to play in the lake, he loves water. He tried to go out deeper once, but the lake is full of rounded rocks and makes walking really hard, and since his body isn't the same as other four year olds, it shows. Still he was happy staying by the shore in about 6-8 inches of water, he pretty much played for a couple hours and we had to drag him out.

The entire time though I didn't feel like I could take my eyes off him, just fear of what he could or would do. He did start walking off at one point and we had to coax him back over. He kept picking up large rocks, nearly missing his toes, picking up big sticks and nearly missing people with them.

Then we went back to the family campsite, and this was the defining moment. We were there for only an hour and I was not relaxed at all. There is a 1 year old and 3 year old cousin camping with them, so the camp is semi childproofed. As you sit there and watch Derek and the two cousins you see the differences, and I don't mean speech and communication type, but just the way they handle themselves.

The one year old cousin sat on the ground and ate cookies, hung out pretty much and didn't try to take off, or sat in mom's lap.

The three year old cousin sat in laps of relatives, ate cookies, watermelon and cantalope, and pretty much stayed pretty still for that hour.

Derek though, couldn't sit still, was pacing back and forth between the chairs in a 5x8 area. He was eating cantalope and watermelon, but he had to touch EVERYTHING that he walked by. The sides of the camper, the table, the propane grill that was set up (but not on thankfully). The sides of the camper had little metal vent areas that said "Caution Hot" and he was just running his hands up and down everything.

I just couldn't imagine even one night/day camping with him. I don't see how it would be possible, there would be no way to relax.

I then started thinking about how I am with him versus my older two. We stopped at a little play place in a mall on Saturday, and I don't think my eyes left him, and if I lost sight of him I stood up to find him. With my other two, at age four I probably would have brought a book to read while they were playing!

Its just SO different, just one of those things that I think other parents don't realize and maybe take for granted.

So, my blog friends, Do You Ever Relax?