Monday, March 30, 2009
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...
Monday, March 16, 2009
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
Wednesday, March 4, 2009
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.
Monday, March 2, 2009
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.