Thanksgiving

I realized recently that I never wrote about Thanksgiving. We had a great day spending time with family. We all decided this year to not cook. None of us were particularly interested in hosting this year and spending a lot of time and money to make a bunch of food that would barely get eaten. Instead we met my family at a restaurant for lunch and met with my husband's family for dinnertime snacks.

Connor is really into seafood right now. Since Disney World, Connor has only wanted to eat seafood. He asks all the time if I will make crab legs or shrimp for dinner. Since I don't eat seafood (nothing from the sea) that has been quite a challenge.

The restaurant where we had lunch was a buffet and traditionally buffets are a nightmare for us. There is very seldom anything without gluten or dairy for Connor, and the contamination factor is huge. I called the restaurant first thing in the morning and asked about the menu. I spoke to the manager who informed me that all the seafood would be plain, without butter or anything else. There was going to be plenty of fruit and meats also. I would always ask to speak to either the manager or the chef directly. I always stress the allergy and ask for specific dishes that would be safe. If there are no choices available for Connor, I would just bring as much of his own food from home as possible. The nice thing about this particular restaurant was that the seafood was in a different area than the other food. The fruit and meats were also all separate from things like bread or cheese. It was nice and easy. Connor had a good time and loved his crab legs! It was a nice way to spend a holiday. With no clean-up either...

It has begun...

I started Connor on Valtrex yesterday. He immediately starting letting out toxic smells. He was off but nothing major. Today, on the other hand, was pretty major.

Connor has OCD, obsessive compulsive disorder. I feel like most of what makes him different is linked to his OCD. When he was little, two or three years old, we were living in fear that anything we did could lead (and usually did) to a major meltdown. We couldn't turn on or off any lights. We couldn't turn the TV on or off...so on. We couldn't even flush our own toilet. My grandfather made the mistake one time of flushing the toilet with Connor around. My grandfather still carries that baggage. It isn't pretty. Connor would be fixated on it and would want you to undo the act. Of course we couldn't undo some things and really couldn't or we would be feeding into the obsession. Connor hasn't behaved like this in years, until today.

Today I saw so many of these behaviors return. He wouldn't let me put his bowl on the table. He wanted me to do it a certain way. When I refused, he snapped. After an hour of screaming irrationally for an hour, I finally had to put pressure on his torso. I learned about this from Temple Gradin in a conference one year. She is an adult with high functioning autism, and she talks about pressure and how it soothes the brain when "short circuiting". It kind of "reboots" his system. He is still off, but nothing like before.

I have to say, as much as I hate going through this, and hate Connor having to go through this, I hope this means he is "a responder". Stan Kurtz talks about the first week being the worst. I just focus on what will hopefully come out of this and am glad Connor is on Thanksgiving break.

Autism Warriors

I have to pass on a great news site devoted to autism. It is a very informative site and the writers, I believe, are all (or most) parents of autistic children.

http://www.ageofautism.com/

I think we all need to become aware of a serious issue going on with the Somalian immigrants living in Minnesota. The rates of autism in their children are 1 in 28 children! Yes, I will repeat that, 1 in 28 children! I know the national rates of autism is supposedly 1 in 150, which is an extremely conservative number, but 1 in 28?! The government is dragging their feet (no surprise) to gather data to try and figure out why these particular people, in this particular place, are seeing such catastrophically high numbers. Please read in more detail about this story and the fight ahead for these people at these great sites:

http://www.ageofautism.com/

http://adventuresinautism.blogspot.com/


I also want to mention a fight going on between a great autism advocate, JB Handley and the man I refer to as Da Devil (He da devil) Paul Offit. Please go to Age of Autism and read about the lies DD is spewing now. He has even written a book talking about us "parasites" and how we are ruining the world. I hate to type the title, but I think most of you will enjoy the irony, Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure. Only Da Devil would consider a cure for autism wrong. By the way, for those wondering who DD is, he is the "brilliant VACCINE INVENTOR" who is mentoring Amanda Peet and encouraging her fight against Jenny McCarthy and other "parasite" parents like me.

Visiting the Doc

Yesterday Connor had his first doctor's appointment in years. He doesn't get sick, and traditional doctors aren't very knowledgeable about autism, so there is never a reason to go. I decided a couple weeks ago to go back to our DAN! (defeat autism now!) doctor to see what was new with DAN! and to get a new perspective. Connor is doing so amazing, but he is not recovered. He is still awkward with peers and gets obsessive about topics. I was very interested to see what the doctor would say after seeing Connor. Our DAN! doctor has been our doctor since the beginning. We were one of his first autistic patients in his practice. He didn't know a lot about autism back then, but decided to dedicate his practice to treating kids with autism.

He had a couple of new ideas that I had thought of a few years ago and never pursued. Since many of our kids have viral issues, we are going to test for viruses. In Jenny McCarthy's latest book, "Mother Warriors" several parents talk about how much their child improved after addressing viruses. Please consult your DAN! doctor if you are interested in more information on getting rid of viruses. (check out Stan Kurtz's info at TACA)

We also talked about Hyperbaric Oxygen treatments. Our DAN! doc has done a lot of research into HBOT and feels that it is a great treatment for autism. He had also traveled to Fresno and visited the facility that we are going to go to in March. He was impressed with the facility. We are going to do some testing to ensure maximum benefits from HBOT.

I always feel like you need to go back and readdress things that didn't make it on your plate before. One great way to do this is to keep a journal. I always tell new moms just starting biomedical or ABA treatments with their kid's to write everything down. Sometimes years later you will finally get to something. We are always going down a path, and sometimes we find a fork in the road. Sometimes we go left and sometimes we go right. That path takes us down another path...and so on. We need to go back now and again and readdress the other direction, the path we didn't choose. Sometimes it just wasn't the right time.

We are going to do some new testing. I will let you know how it goes, and what path we decide to go down...

Our Trip to Disney

My family and I returned from our week-long vacation to Disney World. This year was the best family trip we have had. My parents decided to join us for four days this year. They are a lot of fun to have with us, and the kids love having their "Honey" and "Papa" with them. Our great friends, Aran and Chad also drove up to meet us. It is great to see them and their little one, Jon. Connor also had his best trip ever. He was much calmer and more in the moment then he has ever been on a trip. He wasn't consumed with what was next, or overwhelmed by all the excitement as much as usual. He did have a couple moments, but by far he did great.




I must say that going to Disney World with my family is a really fun thing. To be able to go into any restaurant and say we have a gluten, dairy, and soy allergy and still be able to eat fun, new and tasty food is amazing. Connor never had to go without or not have what everyone else was having. We wanted ice cream the first day and sure enough the ice cream stand at Animal Kingdom had gluten free rice dream ice cream. I highly suggest becoming acquainted with what the parks carry that is gluten, and dairy free. If you call or email any of the parks special allergy staff, they will send you a list of every park and what they carry. They even have links to the product websites so you can read the ingredients and become acquainted with the brand.




I did a couple of things this year that I think were helpful. The first thing I did was have every park mapped out for Connor. He and I sat down and decided what rides we were going on and when. He loves roller coasters, so I knew we had to get to those first. Also, I made meal reservations at sit down restaurants (as apposed to the quick service places) so that we could all relax a bit and not be rushed to find a table or to eat. The prices are a bit more, but if you budget for at least one sit down restaurant a day it is worth it. Depending on the park, time of year, and restaurant, you will want to make reservations at these places as soon as possible.

Another reason Disney World is such a great trip for us is because of the special needs pass. This is a pass they give people with special issues like people in wheelchairs or people with autism. Waiting in line is the number one reason people tell me they don't want to try a place like Disney. I will tell you that the day we went to Magic Kingdom, we had a big sit down breakfast in the park (Crystal Palace Character Breakfast) and took a lot of breaks, and we still rode every ride, and some twice, before our six o'clock dinner reservations.



I can not say enough about the food at the parks. Connor is so use to having a hamburger with no bun at every restaurant, that he goes crazy in the restaurants at Disney. Disney also takes food allergies very serious. The chef comes out at every restaurant to to talk about the allergies and discuss food options. One of Connor's favorite dinners was in Epcot at Japan's Tempenyaki restaurant. First the manager came out and talked about the allergies, then the chef cleaned the grill really well, then she cooked Connor's food in front of us first. He is on a seafood kick right now so he got the kid's shrimp meal. She cooked his shrimp and veggies in front of us on the big grill tempenyaki style. He loved it!





Connor celebrated his birthday while on vacation. We actually plan it that way every year. October is one of the slower times a year, so we plan our trip to coincide with his birthday and Halloween. This year, Connor chose to go to Hollywood studios for his birthday. We have never been huge fans of this park in the past, but this year we loved it. I made reservations for breakfast at a Little Einsteins character breakfast for that morning. Connor danced with the characters and had a great breakfast. We had dinner at a place were you sit in cars and watch old sci-fi movie clips like in a drive-in. The food there isn't the best, but Connor gets a rice milk shake, so it is cool. We also had a birthday cake for him. I ordered it about a week in advance. I told them the allergies and that was it!! They did a wonderful job. Connor also got a "It's My Birthday" button with his name on it, so every time a staff member walked by they would say "Happy Birthday Connor". I can't tell you how amazing it was to see the look on his face. He really felt special...in a good way.




Disney does not skimp on anything. My husband and I always say that it is in the details. They really made our life easier for the week we were there. If you have a chance to go, please do. I would recommend staying on Disney. They have great transportation that takes you anywhere on Disney's grounds. Not having to get a rental car saves on the stress and the budget. We are already talking about next year. I am already saving for our trip. I don't want it to be a financial burden, so we use airline miles and start saving the moment we get back.




Our next trip is Mexico for Christmas. My entire family is going to my parents home in Mexico for Christmas. Even my Papa is going to make it. We are looking forward to that. Connor is using that trip as a way to focus. Check out my mom's new blog too www.casalagarto.blogspot.com

Hyperbaric Oxygen Therapy

I fully believe things come to you when you are ready. I had heard about hbo therapy (hyperbaric oxygen) about two or three years ago. At that time I was overwhelmed with all the other biomedical things we were doing and working with the school, so I didn't really do a lot of looking into it. Recently I started to feel like there was something out there that was "calling" me. After ready Jenny McCarthy's latest book "Mother Warriors" I realized what it was. Several of the parents in her book mentioned HBO therapy and how much it helped their kids. I knew I needed to find out more about why it works and what the protocol entailed.

I know in my gut that this is right for Connor. There is a definite protocol in place and the safety rate is outstanding. So I started calling local HBOT centers. I heard from all of them that autism is not something they treat and that no one in Colorado would risk treating my son because it would be considered "off label". When I finally talked with the last HBOT center that I had a number for in Denver, a technician heard my sh peel and then, as all the other centers had done, he denied my plea. I then kinda lost my cool and began to rant about the ridiculousness of the bureaucracy of these clinics and how my son could be really helped but because of these stupid rules he wont have the chance. He then asked if he could put me on hold, so I figured he was just dishing me off to someone else, but instead he got back on the phone and began to whisper. He said if it were him he would find a "stand alone" center that was not connected to a hospital. He warned to find a reputable clinic that had trained personnel and not be fooled by people pawning off their equipment. He talked about the risks of renting one and that out of state would probably be my best option. It was a relief to actually have someone talk (or in this case whisper) to me fairly openly instead of just another "no". I felt reinvigorated that this was the right path for me and for Connor.

I found a clinic in Denver (about two hours away) that treats autistic children. It is a stand alone clinic, meaning it isn't connected to a hospital. The problem with this particular clinic is that they know they have a monopoly for desperate parents like me, therefore they charge three times what they should charge. I made it clear to them that I would not be paying that price and they said, "Good luck out of state then".

I had almost given up hope that I would find a clinic that I could afford to go to and that would work with us "off-label" people.

I found an amazing clinic in the LA area that have some pretty amazing and famous autism professionals working at the clinic. One of the doctors is Dr. Kartzinel, Jenny McCarthy's son Evan's doctor. This clinic looks amazing and the price is the lowest of all I have found. Please look into it if you have the chance. www.californiahyperbarics.com





In our case we are actually going to go to a clinic in Fresno, California. The reason I decided to do this is because I have lots of family and friends in Fresno and this clinic looks wonderful. The owners opened this clinic because of their own journey with their autistic child. They traveled all around California, and the country doing biomedical treatments for him. They wanted to spare other parents and children the financial hardship of having to travel all around the country to get hbot and other biomedical treatments. This clinic is also associated with the Ronald McDonald house. Please check out this clinic also if you are in the area. HOPE Hyperbaric Treatment Center

We are planning on trying HBOT this spring break. I don't want Connor to miss too much school and we will be there three weeks. The protocol is forty sessions with most people seeing some improvement around twenty sessions. Most clinics will do two sessions a day with four hours separation between sessions. Please look into this treatment later in your biomedical protocols. I think things like this do so much more after the gut and "bugs" are addressed. In fact, the doctor we use, Dr. Amy Yasko advises doing it in her stage three. Basically after addressing methylation and gut issues.




More info: Hyperbaric Healing Institute
Hyperbaric Oxygen Therapy (HBOT) is a method of administering pure oxygen at greater than atmospheric pressure to a patient in order to improve or correct conditions. By providing pure oxygen in a pressurized chamber we are able to deliver 10-15 times more oxygen then if delivered at sea level or at normal atmospheric levels. Some of the effects this has are to promote the growth of new blood vessels, decreases swelling and inflammation, deactivates toxins, increase the body’s ability to fight infections, clears out toxins and metabolic waste products, and improve the rate of healing. HBOT should be used to compliment conventional therapies and treatments.

Wish us luck...

From the Archives... Chocolate Molten Cake

I made this chocolate dessert a few months ago and thought it would be a good addition to Jill's blog. It is great as an elegant dessert but it can also be a great dessert for kids. I served it with vanilla flavored rice milk ice cream and the kids loved it. Very, very simple.

Just a note regarding the non-hydrogenated shortening. The only one that we have found that is soy free is made from palm oil (Spectrum sells a good one). However, if soy is not a concern, I recommend you use the butter flavored non hydrogenated shortenings that is sold usually in the refrigerated isle, next to butter. If dietary restrictions allow it, this is my preference.

Gluten, Dairy and Soy Free Chocolate Molten Cakes

4 oz non-hydrogenated shortening
6 oz gluten, dairy and soy free chocolate chips
2 organic eggs
2 organic egg yolks
2 oz sugar
3/4 oz organic white rice flour
pinch of sea salt

In the bowl of an electric mixer, combine the whole eggs, egg yolks and sugar and whip until very thick and pale. In the meantime, melt the shortening and the chocolate chips together over a double boiler.

Add the shortening and chocolate mixture to the whipped eggs while the mixer is on low speed. Once all the chocolate is added, turn mixer back to high for about 10 seconds so it's all well mixed.

Fold in the rice flour and the sea salt. Pour batter into 4-oz greased molds and bake at 400 degrees for 10 minutes. The outside of the cake will be baked but the center will stay slightly soft and gooey.

Let the cakes rest in the molds for a few minutes until they cool down enough to handle and then flip them onto a plate. These are best served warm with ice cream.