On A Hiatus

Sorry I have been gone for so long. I have a lot to post, but with school being out and a lot of personal changes happening, I don't have time right now. I hope to be back soon and fill everyone in on Connor and all we have been doing. Thanks for understanding.

Taking A Break...At Disney!

Connor and I have been going to hyperbaric oxygen therapy at Dr. Miller's clinic for a couple of weeks now. We are going six days a week, twice a day, for an hour and a half each session. Connor has been a real trooper. He hasn't complained one time! The first day he was a little scared, but as soon as we got in, he realized it was ok and relaxed. He doesn't complain that we have to do nothing but drive back and forth and spend the entire day in the chamber. Since we decided to come here to Florida, I decided what a better way to reward Connor for his patience and good behavior than to take a day trip to Disney World!
For those of you who have read my blog before, know that we take a family trip every year to Disney World for Connor's birthday. I plan for MONTHS. I make meal reservations months in advance. I plan what order we are going to go on each ride. I plan, plan, plan.

When I decided to take just an overnight trip to Disney, I couldn't help but make breakfast reservations. I think it is essential to start a day at Disney with a full belly, gluten free, casein free, soy free...I made reservations at a fun character breakfast and Connor had a blast. It was such a great way to start the day. Since we didn't have anyone else with us this weekend we were free to run from ride to ride and not worry about anyone else. Connor is an adrenaline junky and loves the rides that go fast. We ran from fast ride to fast ride barely taking time to stop for a snack. I do know that if Connor doesn't stop and eat every 2-3 hours though, he will not last long behaviorally. I do have to get him to stop long enough to keep his blood sugar regulated.

The day went very smoothly. I have to say the key to success at Disney is not getting stressed. With the "autism pass" that Disney has, we are able to basically walk on to almost every ride. Even when it rained in the morning, Connor was a trooper and put on his poncho and kept on going. The only hitch in the day was lunch. I figured we would just go to one of the quick stop restaurants and grab a gluten free pizza with no cheese, or a hot dog with a gluten free bun, easy right? Not so much. I went to three quick stop restaurants that knew nothing about gluten free and offered to grill Connor a chicken breast. I said "No thank you, he can have a grilled chicken breast anywhere in the world. I want something special for him at Disney". I finally found a place that knew what they had that was gluten free right away. They were very nice and took the allergy very serious, but it takes 20-30 minutes of standing in the way at the pick up counter before our food was ready. Then when it was time to find a table, it was another stressful event to just find a table and two chairs. This experience reaffirmed my belief that a sit down meal at Disney is essential. It isn't any more expensive either. Our breakfast was the same price as our quick service meal, but the breakfast was relaxing and enjoyable. The lunch was stressful and frustrating.

People ask me all the time why we are such big Disney World people. I have to say, when you spend every day of your child's life trying to get the world to accept their differences, while striving to heal their little bodies, it is nice to go to a "magical place" where their differences are excepted and they are treated as special, in a good way. They have food that they can eat, just like everyone. They get a special pass that allows them to skip the lines and ride all the rides they want. When you see your child's face light up when they see the castle or when they recognize a song from a movie they know, it is worth anything in the world. Connor even went on a ride this time that he could never have gone on before. They have a ride in the Magic Kingdom, in Tomorrowland, called "Stitch's Great Escape". The ride is a nightmare for kids with autism. The ride is loud and has bright flashing lights, weird smells, weird noises, just weird and crazy in general. I hated the ride. Connor liked it.

At the end of the day, going to Disney just for the day was very rewarding for Connor. He had a blast. He ate "normal" food, rode awesome rides, and got to experience the "magic" of Disney. Aside from a few kinks (rain, lunch stress) it was a very successful day. I highly recommend going to Disney and allowing your child, and you to feel like your child's issues and the difficulties of life are put on hold, if only for the day...

Starting Hyperbaric Oxygen Therapy

Today Connor and I started the new therapy. We traveled to Florida on Friday and are staying with our good friends (and amazing pastry chef) Aran and her family. I don't think I ever caught you up on the drama that took place about a month ago now.

I called the hyperbaric center in Fresno, California that we were going to be going to within a few weeks. The number had been disconnected. I found another number, a cell phone, and called. All the while thinking nothing could possibly be wrong. The young woman who answered the phone explained to me that they had just closed down the treatment center and were filing bankruptcy. I couldn't believe that not only had they closed, but no one called me! They put me in touch with another center that was good, but in Sacramento. I don't live in California and we were only going to Fresno because I have family there. I talked to the center in Sacramento and they were very knowledgeable, but even with a discount for my difficult situation, they were still going to charge four thousand dollars for the forty treatments we needed to get. That is $4000!! Not only was it very expensive for the therapy, but Connor and I were going to have to move into the Ronald McDonald house for the whole time we were there. I am sure the Ronald McDonald house is a life saver and is wonderful as an option for families with no other place to stay, but it is not ideal to be there by myself with just me and Connor for almost a month. I need a support system. That is when I went back to the drawing board.

I called my friend, Aran, nearly in a full fledged panic attack. She reminded me that there was a clinic not far from her house and that I should call that doctor and see if I could start going to that one. I reminded her how inconvenient it was going to be and how long we were going to have to be there, and she told me to "shut up ad book it". I called the doctor's office and talked to the doctor for over an hour about our requirements and our time table. He was extremely accommodating and insisted that he would do whatever we needed to make this work for us. He said he would open up the clinic to us on days off, and during lunch. He said he even offers significant discounts to family's with children with autism. It really was a no brainer. He was great about the time table, the price, and the location was good. So off we went to Florida...

Dr. Louis Miller in Lake Worth, FL

Gluten Free Tortillas

Here is my latest find! Gluten free tortillas that actually act like a tortilla. They are soft and pliable and fold. I have never found a gluten free tortilla that heats up like a gluten-filled tortilla and still folds into a regular 'ol burrito. Give them a try! They come in dark and ivory teff...

They do contain soy, so be aware.

Avoiding OCDs

Sorry I have been gone for so long. I have kinda been anti computer the last couple of weeks. I have been overwhelmed with life and kids and well, stuff and haven't had the desire to sit and surf and write on this blog the way I normally do. I have found that when I get overwhelmed I have to step back and simplify. Guilt got the best of me though and I wanted to write a bit about OCDs.

I have written many times about Connor's obsessive compulsive disorder. He has come a long way since he regressed at eighteen months. He was so compulsive that we were literally held hostage by what Connor would let us, and not let us do. He was the only one that was allowed to turn lights on or off. He was the only one that could turn the TV on or off, etc. When my eighty year old grandfather flushed his own toilet, Connor screamed for hours. It was very traumatic for my Papa.

Sometimes when I want to see how far he has come, I think about those times and how we had to walk on egg shells for so many years. Although Connor doesn't obsess about things like that anymore, he is still very rigid. He still likes to control things. He doesn't like to be wrong. He doesn't want people to disagree with him. He doesn't understand how people could have a different opinion either. He came home from school today and was very concerned that a boy in his class didn't like Mario from Super Mario Bros. Connor is obsessed with Mario. He wants to be Italian. He only wants to eat Italian food. He doesn't want to even hear his little sister watch Dora the Explorer because Dora speaks Spanish, not Italian. It is beyond a cute little character that Connor likes, it is a full blown obsession.



The Mario obsession caught me off guard. I didn't see it coming. I get so excited when Connor likes a character or a show like kids his age, that I didn't realize it had gone from a cute thing he likes, to an obsession. I just want him to like something the way other boys his age like things. I want him to want to watch a show like Spiderman, or play with the latest toy like Bakugan. I get so excited for this type of normality that I am blind to the progression past normal.



Obsessions work that way. They are sneaky. They don't just show up one day and are set in stone, usually. They creep up on you slowly. Connor will like to do something one way, and I think, "Why not?". We can do it that way. Then he wants to do it that way all week, and I think, "Sure". Then I try to do it a different way and he is overwhelmed. Unfortunately, once it is an obsession, the only way to get rid of it is through extinction. Extinction is when we just stop. Cold turkey. This is hard and can really interrupt your life, but so does autism. If we didn't stop Connor, cold turkey, from not letting us flush our own toilet, he would still be holding us hostage. We couldn't go outside of our house or have anyone come over. The older they get the more unsettling it is too. A two year old with issues get swept under the rug as a funny little thing they do when they are little. At nine years old, it is just plain weird.

Fortunately I can talk to Connor about this stuff now. I have told him about autism, sorta, and he doesn't want it. He wants to not have autism, or anything related to it, such as OCD. He started to pitch a fit yesterday about not saying goodbye to a friend of ours when they left our house. I could see the anxiety building. I told him he was obsessing and that it wasn't ok. He calmed right down. Some people don't think it is a good idea to talk to their kids about autism or OCD. They don't want them to feel labeled or "different". I can tell you that Connor already feels different whether he knows it is called autism or not. At least this way he knows what to call it. He also knows how to control it when I tell him that it is his autism that is making him do "XY or Z". He immediately calms down and internalizes what I tell him. It works for us. You have to find what is comfortable for you. For a long time we never used the word "autism" in front of Connor. Pretty soon I realized it would help him to know and not feel like he was just weird or different. Now he feels like he has something to work toward. He has something to fight against, so to speak.

Vaccines Cause Autism

Dear Rescue Angels,

We would like to encourage you to reach out to your local markets news services to do a story on the recent press release that we emailed you about this morning.

Steps:
1.) Call the local show and ask for the news desk. You may want to try the health or the entertainment producers.

2.) Inform them that a family has won another landmark case against the government which conceded that vaccines cause their child's Pervasive Development Disorder (autism).

3.) Let them know that Jenny McCarthy and Jim Carrey have commented in the press release.

4.) Let them know that Robert Kennedy Jr and David Kirby have written articles for the Huffington Post.

5.) Let them know that Generation Rescue posted a full-page ad in USA today.

6.) Let them know the case information can be viewed on www.ageofautism.com

7.) Give them a copy of the press release

8.) Record their contact name, phone number and email address and send it to us at Mark Marking mmarking@generationrescue.org so we can keep them on our news alerts.

Thank you!

For convenience, here is the email we blasted this morning:


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

The News!
The government has conceded that vaccines cause autism.

Read the latest stories in the Huffington Post written by David Kirby and Robert F. Kennedy Jr. featuring the Banks family who recently won a landmark case against the government.


Take Action and Support David Kirby and RFK Jr.

Lets make this the most read article on the Huffington Post. Please read the article and offer David and Robert your words of praise and pass this information to everyone you know. Age of Autism should have the article up as well.

USA Today

To help spread the word of this tremendous victory, Generation Rescue has placed a powerfully written full-page ad in The USA Today, which hits the stands today, Wednesday, February 25th. Please purchase the paper and hang the ad proudly.

Generation Rescue - Press Release

Below is the press release that was issued to the media this morning. If you have any media contacts, please feel free to forward this to them with encouragement to tell this story.

Thank you for your support and efforts on this important day.

---

Government Again Concedes Vaccines Cause Autism

Mysterious Vaccine Court created in 1986 by the pharmaceutical industry, with the support of Congress, rules in favor of Bailey Banks against HHS.

Los Angeles - February 24, 2009 - Generation Rescue, Jenny McCarthy and Jim Carrey's Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism. The announcement comes on the heels of the recently unsealed court case of Bailey Banks vs. HHS. The ruling states, "The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine...a proximate sequence of cause and effect leading inexorably from vaccination to PDD [Autism]."

In a curious and hypocritical method of operation, the mysterious Vaccine Court not only protects vaccine makers from liability but supports a policy that has tripled the number of vaccines given to U.S. children - all after being made aware of the fact that these vaccines do, in fact, cause autism and repeatedly ruling in favor of families with children hurt by their vaccines.

"It was heartbreaking to hear about Bailey's story, but through this ruling we are gaining the proof we need to open the eyes of the world to the fact that vaccines do, in fact, cause autism," said Jenny McCarthy, Hollywood actress, autism activist, best-selling author and Generation Rescue board member. "Bailey Banks' regression into autism after vaccination is the same story I went through with my own son and the same story I have heard from thousands of mothers and fathers around the country. Our hope is that this ruling will influence decision and policy-makers to help the hundreds of thousands of children and families affected by this terrible condition."

Banks vs. HHS is the second known case where the Vaccine Court could not deny the overwhelming evidence showing vaccines caused a child's autism. The first was the case of Hannah Poling in March of 2008, where the court found in her favor and awarded her family compensation.

Jim Carrey, Hollywood legend and Generation Rescue board member, reacted to the news, "It seems the U.S. government is sending mixed messages by telling the world that vaccines don't cause autism, while, at the same time, they are quietly managing a separate 'vaccine court' that is ruling in favor of affected families and finding that vaccines, in fact, were the cause. For most of the autism community the question is no longer whether vaccines caused of their child's autism. The question is why is their government only promoting the rulings that are in favor of the vaccine companies."

Why is a secret court, which no one knows about or understands, quietly paying these families for vaccine injuries and autism? Deirdre Imus, Generation Rescue board member and founder of the Deirdre Imus Environmental Center for Pediatric Oncology says, "Over the past 20 years, the vaccine court has dispensed close to $2 billion in compensation to families whose children were injured or killed by a vaccine. I am not against vaccines and my own child has been vaccinated. But, I share the growing concerns of many parents questioning the number of vaccines given to children today, some of the toxic ingredients in vaccines, and whether we know enough about the combination risks associated with the multiple vaccines given to children during critical developmental windows."

To help spread the word of the Banks ruling, Generation Rescue also bought a full-page ad that will run in the USA Today on 02/25/2009, which has a daily circulation of 2,272,815.

Generation Rescue seeks to answer these questions and many more on a daily basis as they fight for the truth and to recover children with autism around the world. To learn more please visit www.generationrescue.org, write to media@generationrescue.com

About Generation Rescue
Generation Rescue is an international movement of scientists, physicians and parent-volunteers researching the causes and treatments for autism and helping thousands of children begin biomedical treatment.

Contact:
Peter Nilsson, President, Performance Public Relations for Generation Rescue
858.880.5466 x227 and peter@performpr.com










www.GenerationRescue.org | 19028 Ventura Blvd., Suite 219 | Tarzana | CA | 91356

Going Skiing

Sorry I haven't posted in a while but I had an issue with my computer and had to send it into a repair shop, leaving me without a computer for a couple weeks. It is amazing how often I use the computer in just one day. I don't know how I functioned before a computer and high speed internet.

Connor went to a ski camp a year ago that specializes in working with children with autism. He really took to it and was zooming down the mountain in no time. Since then it has been difficult to find time to take him skiing again. We have actually had quite a good amount of snow (powder) on the slopes this year and I wanted to take advantage of it.



Connor doesn't do well when competing in team sports, so I haven't put him in any team sports like soccer or t-ball, but I didn't want to keep him from athletics as a whole. I decided to go with his strengths and focus on individual sports. In the summer Connor takes swimming lessons and continues to get stronger and more coordinated. After we leave swimming lessons I always tell people that I think Connor is going to be the next Michael Phelps. I know that is just a proud mama talking, but it wasn't long ago that Connor couldn't stand for long periods of time without falling from poor muscle strength. Now he is fairly coordinated and even though he is still very skinny, he is actually pretty strong.

Connor took right to the slopes. He loves being outdoors. He would rather ski all day with no break than anything else. I had a hard time keeping up with his pace and even his speed. He had no fear. He went pretty much straight down the mountain. I had to remind him to make an "S" and use the whole width of the mountain, but he wanted to stay up with his snowboarding dad.

Sometimes I underestimate my kids. I think that you have to be older and more experienced to do things when in reality they are more able and less fearful to do something new than most adults. When I see Connor skiing, or swimming, or body surfing, I know that as an adult he is going to be an outdoor guy who loves to be active. Maybe if his conversation skills aren't the best, he will still make friends with other people that also like to be outdoors and active.