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:


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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.

Technical Difficulties

I have been having some problems with my computer, so please excuse my absence from this blog. I will be back soon, I promise.

Thank you!

Sick About This

I was doing my usual web surfing today trying to find some new, fun food for the family when I came across a reference to this article by the Chicago Tribune. For anyone who's children have serious issues with gluten and you thought you were giving them safe, gluten free food, think again. Read this article and listen to the President of Wellshire Foods not even apologize for poisoning our children knowingly. It makes me sick, and it probably made MANY children sick and their parents had no idea why.

Throw away any Wellshire Farms dino chicken nuggets, chicken and beef corn dogs. They aren't making any more for a while, but stores are still selling the gluten containing ones. Even after Whole Foods knew, it still took them at least a month to remove the gluten containing items. They were going to blame the manufacturer instead of protecting their customers.



Please join me in voicing your concern to Whole Foods and especially Wellshire Farms for knowingly selling these products labeled "gluten free" knowing all along they contained up to 2200 part per million of gluten. It is nothing short of negligence.

Wellshire Farms

Whole Foods Market

Trying Something New

Recently I decided that we would try the Specific Carbohydrate Diet (SCD) while on Valtrex. We are gradually trying some of the foods they recommend on that diet while eliminating most of the food they don't allow on the diet. The biggest thing is to eliminate starches. While we haven't eliminated them altogether yet, we have significantly reduced them. I also read that kids on the SCD diet are trying goat milk products with success. I read a lot of parent testimonies on the fears they had before trying the goat milk, but that ultimately they chose to try.

I have to say that we have been healing Connor's gut for almost eight years, and that the choice to try anything new is something every parent must listen to their instincts and trust their gut to know if it is going to be right for their child. I listen to my gut a lot, especially when it comes to Connor and what to try and when to try it. This time my gut said it was time to try the goat milk products and watch closely to see if it is going to be a good decision for Connor. I would not suggest trying any "dairy" with your ASD child unless you have done significant gut healing and have been gfcfsf for at least nine months to know if the child can tolerate the new food. The reason I say nine months is because until the gluten is fully out of their system, their body might not register if it doesn't like the goat milk products.



Having made the decision to add in some goat milk products, my husband decided to make a casserole with the goat cheese on top. We didn't tell Connor about the added ingredient to make it more of a "blind study". We have been watching for three days now, which is more than enough time to notice a reaction to "dairy", and still no sign of any issues. He is having a great week at school, and is very clear with no OCD issues at home. So far so good...

Please look into the SC diet if you are interested in learning more. It has helped a lot of kids on the spectrum. I also want to note that goat milk products don't taste like cow milk products. Goat milk is much easier to digest and is very similar to human breast milk, but just be prepared for a stronger smell and taste than cow milk products. All three of my kids and my husband love goat cheese, milk, butter and even yogurt. I however, can't even smell goat products. Don't spend a lot of money and time using goat stuff without knowing if you like it.

Pecanbread.com is the official website for SCD and autism.

Breaking The Viscous Cycle is the official website of the original diet, not specifically for autism.

Connor's New Favorite Breakfast

For years Connor was content with the fact that he couldn't have oatmeal. He had never had it, and therefore didn't miss it. He watched his brother eat it often, since it is his brother's favorite breakfast meal. Connor has an ability to not want things he can't have. I don't know if it is because he knows that these foods hurt him, or if he doesn't treat food as a reward as much as most of us do. He likes food, but he doesn't use food as anything but food. I envy him often for not knowing or caring what amazing foods are out there that he can't have.

Oats have always been an issue for people who can't tolerate gluten. Oats, in fact, do not contain gluten. However, because of farming practices in this country, oats and wheat are usually processed together. Therefore gluten sensitive people could never have oats because of cross contamination with wheat. Recently, there have been a few farms who have changed their usual practice to allow oats to remain uncontaminated. You can now find certified gluten free oats in specialty stores and on the internet.

This week we tried oatmeal for Connor. He was skeptical at first since he knew oatmeal was not safe for him in the past. He asked several times if we were sure that this oatmeal was gluten free. The directions for "quick cooking" are to leave one part oats with two parts water in a bowl overnight and then to either stove-top cook it or microwave it the next morning. After cooking the oats the next morning, we added some fresh blackberries and a drizzle of honey. My husband made a very large serving and Connor ate the whole bowl. We asked him later what his favorite breakfast it, and he said "Oatmeal!".

That day at school he was slightly quiet with no behavioral issues. If anyone is going to try the certified gluten free oats for anything, remember that they are not instant and do need to be soaked. I bet these will be good in a cobbler...

Gluten Free Oats Website
Cream Hill Estates Gluten Free Oats