Monday, November 24, 2008

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 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.

Friday, November 21, 2008

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.

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:

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.

Friday, November 7, 2008

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...

Wednesday, November 5, 2008

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 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