Flour Tortillas!!

Connor has been gluten free, dairy free and soy free since he was a baby. His momma, me, on the other hand, became gluten free as an adult. I know what a warm donut tastes like. I know what a warm, flaky croissant tastes like. I miss good, light, fresh, good bread for a sandwich. I love good food, which makes going gluten free, and dairy free so hard for me. It is hard to find good gluten free food. It is hard when you know what a good home made flour tortilla tastes like fresh off the grill to then settle for a store bought corn tortilla. Well, I have found a way to satisfy some of my food sadness. I haven't found a good donut or croissant yet, but I have found an excellent and easy flour tortilla recipe.

When I was a young wife, before I had kids, I use to make home made flour tortillas daily. We would some how find a way to make tortillas work with what ever we were having for dinner. We could be having fried rice, and we could make it work with flour tortillas. When friends came over, the first thing they asked for were the flour tortillas. Good, homemade flour tortillas are incredible. We are from the West, and Mexican food is a part of our culture. I was very sad when we found out we had to go gluten free, because that meant the tortillas had to go, until now. I found an incredible and EASY recipe for those of you that are challenged in the kitchen. A website called, "Gluten Free Cooking School" has the best recipe for gluten free flour tortillas. I challenge you to make these and not tell anyone that they are gluten free and see if anyone notices. I find the true test is when they go unnoticed as being "good for being gluten free". I want them to just be great!! My family keeps asking me to make these tortillas. That is awesome!!

Gluten Free Tortillas:

2 c. Gluten Free All-Purpose Flour Mix (I use Bob's Red Mill)
1 1/2 tsp. xanthan gum
2 tsp. sugar
1 tsp. salt
1 c. warm water

1. Add the dry ingredients to a large mixing bowl and mix the ingredients thoroughly.

2. Add the cup of warm water to the bowl and mix the dry goods into the water. Just mix it all up until all of the dry ingredients are no longer dry. And then keep mixing a minute longer.

3. Separate the dough into 8 pieces and roll each piece into a ball. Place all but one of the dough balls back into the bowl and cover with plastic wrap until you’re ready to work with them.

4. Sprinkle a clean, flat surface with a bit of all purpose flour and then roll your dough ball into a roughly circular shape. Get is as thin as possible. Make sure to keep it from sticking to your surface.

5. Throw the tortilla onto a hot griddle (I use a cast iron griddle on medium heat with just a smidge of shortening or oil) and let it cook approximately 1 minute – or until it has started puffing up and the bottom side is developing those lovely brown spots. Flip the tortilla and cook the other side until is toasty as well.

6. Slide the cooked tortilla onto a waiting plate and repeat from step 4 until you’ve cooked all 8 tortillas. I generally roll one tortilla out while another is cooking, so that there’s is always a tortilla on the griddle.

I find it helpful to not stack hot tortillas on top of each other. I like my tortillas slightly crunchy and the steam from one tortilla will make the next one soggy if they are stacked.

ENJOY!!

In the paper

Well, Connor and I were in the local paper yesterday. I am not thrilled with the article since the majority of the text was either fluff about us moving to this town, or reiterating the authors past negative article. I wanted to talk about being an advocate for your child. I wanted to talk more about how far Connor has come. I especially wanted to talk about the positive things the school district is doing for my son. Apparently, the newspaper sells more with negative articles, surprise, surprise.

I want to say thank you to my son's teacher, Ms. Lloyd, his para, Ms. Monica, his resource teacher, Ms. Wendy, and his entire team. Thank you for your constant hard work and patience. I am under no delusion that Connor is an easy child or that your jobs are easy. I wish more people, even people with typical children, could understand the lengths you go through to help our children. You sacrifice money and time and heaven knows patience, to help our children daily. I am not good at saying thank you and I expect a lot from you, but I am appreciative. You are all good at your jobs and have wonderfully large hearts. You have helped my son and you have loved my son. Thank you. To all teachers and all supporting staff across the country, thank you.

In case you want to read the article:


Mom pleased with support of autistic student

December 01, 2009 10:21 PM
BY WILLIAM ROLLER, SUN STAFF WRITER



When Jill Mitchell first met with Yuma Elementary District 1 to inquire about services available for her autistic son, she was prepared to fight for them.

Mitchell, who moved to Yuma from Woodland Park, Colo., last summer, said services for her son Connor, 10, were not optional - she said she has read books and attended conferences and knows what works.

But despite some criticisms she had heard about special education programs at the district, Mitchell was pleased with what she found. "The fabulous thing about District 1 is that I didn't need to fight because they agreed on everything," she said.

The Arizona Department of Education audited Yuma Elementary School District 1 in October after a complaint was filed by a parent. The audit noted that 29 percent of special education teachers have not met the Highly Qualified standard in the subject area they are assigned to teach as mandated under the 2001 No Child Left Behind Act. And there are four positions currently filled by long-term substitutes.

Mitchell said she knew that her son needed a paraprofessional "and without blinking an eye, they agreed."

A paraprofessional is a trained aide who spends all of their time with a disabled student while they are at school. After 8-1/2 years of therapy, diet and supplemental vitamins, Connor is now considered a "high functional autistic," Mitchell said.

"He walks and talks and does his homework, but he still has emotional and behavioral issues associated with autism. So he needs to have constant supervision to be successful."

Mitchell's husband, now a civil engineer at Yuma Proving Ground, had been self-employed. But because his business was keeping him from home, they moved to find a job opportunity in a sunnier climate with hopes of a better quality of life.

Initially, Mitchell noticed that parents had a negative view of how school districts handled autism. She found many parents who were criticizing their school's approach. This is because a diagnosis of autism is new and the rates are skyrocketing, she said.

Yet negative comments did not discourage her because she never was content to drop off her son at school and expect them to do all the work, Mitchell said.

Despite Connor's disability, he is participating in a regular fourth-grade classroom at Sunrise Elementary School. One of the initiatives the school takes that is especially helpful is the "lunch bunch" break period when Connor, his paraprofessional and two other classmates get together.

They not only enjoy sharing their meal, but it is an opportunity for Connor to work on his conversational and social skills in a small group setting while all 32 of his classmates take turns dining with him.

By having all the children rotate turns sharing quality time with Connor, none of them feels left out of the fun, and they have the chance to get better acquainted. Even before he arrived for the school year, District 1 had a counselor meet with Connor's class to explain how a child with autism is different but they can still be friends, Mitchell said.

"That made a difference in his being integrated into a regular classroom because now when he showed up, he was accepted by everyone."

Connor is now performing grade-level work, but that requires a lot of effort because he still has a lot of issues to overcome every day, Mitchell said. But, she noted, there is one type of therapy called applied behavioral analysis (ABA) that works better than others.

When Mitchell discovered Connor's paraprofessional lacked this background, she appealed to District 1, which had Connor's paraprofessional trained in ABA at Alice Byrne School. Mitchell's only complaint is that not enough teachers receive this specific professional development and the state needs to pass more bonds to fund this.

"I think parents ultimately got to take the responsibility for their own child and not blame the schools because District 1 has done an excellent job," she said.

In a previous Yuma Sun story, Darwin Stiffler, District 1 superintendent, said only 16 teachers out of nearly 60 special education instructors must meet additional requirements. He said ADE's report recognized that the teachers are certified in special education.

But ADE is adding new obligations that were not compulsory until now in order to meet the Highly Qualified standard. The 16 teachers must pass the Arizona Education Proficiency Assessment (AEPA), which evaluates general education knowledge, Stiffler said.

He said District 1 will comply with helping teachers prepare for the AEPA by providing professional development and reimbursing teachers for the exam expense.

Gluten and Dairy Free Brioche Recipe

For anyone who knows me, they know I love food, love eating, but hate cooking. My friend Aran is an amazing pastry chef and cook and she was kind enough to post one of her creations on my blog for those of you who actually enjoy baking and cooking. This looks fantastic and I hear they tasted pretty great too!!

Gluten-Free Brioche

adapted from "Healthy Bread in 5 Minutes a Day" by Zoe François and Jeff Hertzberg

Makes enough bread for three 1.5 lb loaves

1 cup brown rice flour
1 cup tapioca starch (tapioca flour)
3 3/4 cups cornstarch
2 Tbs granulated yeast
1 Tbs kosher salt
2 Tbs xanthan gum
2 1/2 cups hemp milk
1 cup honey
4 eggs
1 cup neutral flavor oil
1 Tbs gluten-free vanilla extract
Egg wash
Raw sugar for sprinkling on top

Whisk together the brown rice flour, tapioca starch, cornstarch, yeast, salt and xanthan gum in a 5 qt bowl.

Combine the liquid ingredients and gradually mix them into the dry using a paddle attachment until there are no dry bits of flour.

Cover and allow the dough to rest for 2 hours. The dough can be used now or refrigerated for up to 5 days.

On baking day, grease a 8.5"x4.5" pan. Break a 1.5 lb piece of dough and shape it into a round. Wet your hands as the dough will be sticky. Elongate the dough into an oval and put it in the pan. You might need to wet the top a bit to smooth it out. Let it rest for 90 minutes (40 minutes if you are using non refrigerated dough).

Brush the top with egg wash and sprinkle raw sugar right before baking. Bake at 350F for about 40-45 minutes.

Toasted Brioche, Poached Egg, Watercress and Apple Salad

Serves 4

8 slices toasted gluten-free brioche
4 eggs (preferably farm fresh)
2 cups watercress
Bunch of purple basil
2 Granny Smith apples, thinly slices
Few drops lemon juice
Water for poaching eggs
1 Tbs white vinegar
Mustard and toasted hazelnut vinaigrette

Poach the eggs. Bring 3 qts of water and the vinegar to a boil. Reduce heat to a low simmer. Break off the egg into a ramekin and gently submerge the egg in the simmering liquid. Do not let the water boil and only cook 1 or 2 eggs at a time. Cook for about 2 minutes or until white has coagulated but yolk is still liquid. Remove with a slotted spoon.

Thinly slice the apples and drizzle with some lemon juice so they don't oxidize.

Place 2 small slices of toasted brioche on a plate. Garnish with watercress, purple basil and thinly sliced apples. Place the poached egg on top and season with a bit of salt and pepper. Drizzle the mustard and toasted hazelnut vinaigrette on top.

Mustard and Toasted Hazelnut Vinaigrette

2 tsp mustard
2 Tbs minced shallot
2 Tbs hazelnuts, toasted and roughly chopped
Salt and pepper
1 tsp balsamic vinegar
2 tsp apple cider vinegar
3 Tbs olive oil

Place the mustard, minced shallots, hazelnuts, balsamic and apple cider vinegars in a bowl. Add some salt and pepper to taste. Drizzle in the olive oil while whisking creating a light emulsion.

For more photos, please visit Aran's blog.

Our school district is making me happy

Before we moved here to this new town, my husband and I read as much as we could about it. I read about the school district and read comments from fellow parents of children with autism to get an idea of what we were getting into by moving to this town. I was getting worried at first because I read only negative comments about teachers not knowing how to teach their autistic child, or parents not getting a lot of help with their child. I then came to the conclusion that no matter what I read, or what the parents wrote, it was all about being active in the education of your child, autistic or not. I would never just drop any of my kids off at school and not have communication with the teachers on a constant basis. I can't imagine taking my child with autism to school and just letting the school do "whatever" without my input and direction. I have never just sat on my hands when it comes to Connor.

When school started, I had a lot of communication with his new team. We met for his initial "what are we going to do" meeting before Connor even started school. I needed to know EXACTLY what services they were going to provide and how they were going to do it. Connor needs a para, that is not up for debate. Thankfully, the team agreed without any arguments, but I would have fought for that if I had needed to. He also needs lots of structure and visual cues. He needs a reward system. He needs....
I did a lot of reading and went to a lot of conferences to know exactly what Connor needs and to know what to demand from the school. Parents should not expect anything from anyone when it comes to their children. They are your children! Do the work. Go to the school with your eggs in a basket and know what you need to advocate for your child. Don't ever expect anyone to ever give your child what they need.

My only complaint has been that Connor's para, although a very good personality for him and for autism in general, has no ABA training. At the last meeting, I brought this up again. In response, they suggested that while we were going to be out of town for a whole week, for Connor's para to go and have training done at one of their other schools. They sent her to this school for a whole week to do training and to shadow another para with more experience. Connor's para came back from the week focused and with so many great ABA techniques. I am more excited than I can express. She is now reading social stories to him, using a typical ABA reward chart, and using other techniques shown to work for high functioning children. YAY!

Connor came back from a week away from school and transitioned well back into the class. Good work team, and good job Connor's para!

Update on new school

So, the boys have been going to their new school for a while now. I literally hold my breath every day when I go to pick them up. They have a knack for tag teaming who is going to have a bad week. I started out joking that when one is having a good week, the other has to struggle. It isn't so funny anymore. Connor took to his new school smoothly. His para is strict with him, and keeps him on task. He wasn't having any meltdowns, and was even making friends, real friends. So...Fisher was struggling. He was getting into trouble with his teacher EVERY DAY. He couldn't focus or concentrate on her direction and was constantly saying he "didn't want to do it". Seriously?! When did I make the mistake of allowing Fisher to think he had a choice? Anyway, every day was tough when I picked up Fisher. He had to stay after school every day to make up for the work he wasn't doing during the school day. Every night was like pulling teeth to get him to do homework. Then one day...tag.

I hadn't noticed the shift at first. Fisher stopped having to stay after school. He wasn't fighting me with his homework as much. His teacher would just smile and wave when I picked him up from school. I thought, yay, Fisher is getting it!! Then, I started to notice that Connor was having some small fits at school. His notes home from the Para were getting longer and longer every day. His teachers had the look of exhaustion when I picked him up. They were definitely at their wits end with the fits getting progressively worse. I tried to explain the concept of "the honeymoon" phase. Sometimes when Connor starts a new supplement or a new therapy, he goes through a fantastic stage followed by a horrible one. It is complicated and has many layers of explanation, but the bottom line is this is typical for him. I think the beginning of the year gave the staff a false sense of security with Connor. He didn't have many issues and the days were smooth. Now that he is demonstrating more "autistic" characteristics, they are shocked. I went in last week to do a para training. I watched her for a few hours to see how she interacted with him naturally. I watched to see how she handled his behavior, without interrupting her initially. I wanted to get a good idea how she handled things and also how Connor reacted to her.

Connor's para is a strong woman. She doesn't let Connor get away with anything. She holds him accountable for his behaviors. I always say that when getting a para, go with personality. You can always train someone, but you can't train their spirit. Connor's para is definitely new to autism. She has not had formal training, but she is a mom, and a strict mom. Sometimes ABA (applied behavior analysis) is counter intuitive for a mom. Mom's are giving and helping and often times does for the child instead of allowing the child to do for themselves. It is hard to just stand back and not constantly say, "Get out your pencil", "Open your book". Instead, we allow Connor (as a high functioning autistic) to try and do these tasks with just the classroom teacher's direction and then do subtle reminders. We tap on his book when it isn't open yet. We point to the pencil in his desk if he hasn't gotten it out yet. We don't do these things right away though, give the child a few extra seconds or minutes to allow their brain to catch up. Connor is probably thinking and dealing with more stimuli than we can imagine. He was sitting next to the electric pencil sharpener when I came in. Kids were getting up to sharpen pencils every few minutes right next to him, all day. Even without verbally acknowledging this action, I know he was having to process it as extra, unwanted stimuli.

The day I went in to observe and then train was a successful day for Connor. I have gone to Connor's class many times in the past to train or help, but this was the first time he asked me to come back. He actually liked me being there. I will be back again tomorrow to train Connor's specials teachers, art, music and PE. I will also watch his para using the ABA techniques I showed her to see what else we can do to help Connor at school without being too much. He needs help, but he is what i call "crazy smart". He is a Thomas Edison kinda smart. I don't want to quash his individuality and I don't want to put him in a box. But I do want him to have real relationships and fit in. Sometimes by stepping back a little at school, we allow him to spread his wings. He can take two minutes to get out his math book instead of only one minute.

Gluten Free, Dairy Free Chocolate and Roasted Beet Pudding Cakes

Photos by Aran Goyoaga

Gluten Free, Dairy Free Chocolate and Roasted Beet Pudding Cakes

My friend, and my kids' godmother, is an amazing pastry chef. She created this beautiful masterpiece and I asked her if I could post the recipe on my blog for those of us who are gluten free. Aran said that the recipe could be altered from its original state to accommodate dairy free diets as well by substituting olive oil or shortening for the butter in the recipe. I am not a fan of beets, but I have it under good authority that a fellow non beet lover liked this cake a lot. I think anytime we can add a great veggie to our desserts is a good thing.

Thanks Aran!!

Makes 6-4 oz ramekins

2 eggs
2 yolks
50 grams sugar
55 grams non-hydrogenated shortening (originally, this was butter)
170 grams gluten, dairy and soy free chocolate chips
55 grams roasted beet puree
20 grams rice flour
pinch salt

In the bowl of an electric mixer, whip the eggs, egg yolks and sugar until pale and very thick (ribbon stage).

In the meantime, place the shortening and chocolate chips in a heatproof bowl and melt them together over a double boiler. Add the melted shortening and chocolate mixture into the whipped eggs and mix. Add the roasted beet puree and mix. Finally add the rice flour and salt and fold.

Pour the runny batter into the greased ramekins and place them on a baking sheet. Bake at 400F for about 8-10 minutes until the edges are set but the center is still soft and pudding-like. Let them cool for about 10 minutes before trying to unmold them.


Roasted Beet Puree

2 beets

Cut the leaves off the beets leaving about 1 inch stem on. Wrap them in aluminum foil and bake them at 400F for about 1 hour or until fork tender. Let them cool completely in the aluminum foil and them peel them.

Cut the roasted beets and puree them in a food processor. Strain the puree through a fine sieve. It makes more than what you will need for the cakes but you can freeze the rest.

New Post...finally

So if any of you are actually reading this, you know that I have written a new post for the first time all summer. This was a long and grueling summer for me. We moved to Arizona from Colorado IN THE SUMMER. People that live in Colorado make it through nine or ten months of crappy weather for the chance to experience two blissful, beautiful Colorado months. There is probably no more beautiful place in our vast and diverse country as Colorado in July and August. The state is green and lush and the temperature is a perfect 75 degrees. There are few bugs and no humidity either. The camping and fishing and overall outdoorsy people go crazy. My friends hiked and visited the ski areas that are actually more beautiful in the summer. All this was happening while I was in a state where the smart people leave for the summer. I moved to a state that the summer is the one season you don't want to experience. If I had a say in life, I would not have done it this way, but life didn't ask my opinion. A good job opportunity came up and we had to take it. I believe everything happens for a reason so I am not dwelling on this (too much) but instead looking for the next door of opportunity. I can't complain too much (well I can, but I won't) because we did rent a house with a pool, so the kids had a blast in the pool all summer and their momma got a pretty decent tan.

So here we are having started school in a new school for the first time in my children's young lives. In Colorado, we were in the same school since Connor had started school, but every year was a entirely new staff. I had to retrain the staff on Connor and his issues and needs every year, so I was prepared for this. Since we moved here in the summer, I wasn't able to get a hold of anyone at the school to let them know about Connor and his needs. I called and called the district office as school approached, but with no real answers. The first day of school was approaching, and I still had no communication from the school. I refused to just drop Connor off the first day of school with no para, or trained team, or plan in place. The Friday before school was going to start was the open house to meet the boys' teachers. I was able to meet the principal and the special education teacher and explained the situation. The principal called the district office and got someone on the phone who could get our ball rolling, and fast. She set up a meeting for the next week, the first week of school, for the entire team. I told them I would be keeping Connor out of school until we met and all the plans were in place. When we met, I expected to have to fight for everything. Connor needs a para. He needs a visual calendar. He needs a lunch bunch group with students and a teacher. He needs a lot of things and they didn't already have any of these in place. The team and I met for our meeting on the third day of school, a Wednesday. I proceeded to ask for all of the things I believed Connor needs, and was prepared for a fight. They don't keep paras on hand for children and they would have to hire one just for Connor. This seemed like it was going to be fight for sure. Instead, the team as a whole said "yes" to ALL of my requests, without any issues. Instead of fighting for everything Connor would need and having to justify everything, they just said "yes". Not only did they do everything I asked for, they got it done at record speed. He started school the next Monday. I am still waiting for the other shoe to drop...

So, Connor has had a great couple of weeks of school. He adjusted well to his new class and teacher and para. He still thinks school is boring, but what kid doesn't? He is doing well academically. He is doing well in his "lunch bunch" group. It would seem that life would finally calm down for me, right? Wrong...



My middle child Fisher has always been our easy child. He is a typical middle child. As much as we try to give him attention, he tends to slip through the cracks on occasion. Connor has obvious needs and requires a lot of time and energy and the baby is little and requires a lot as well. Then there is Fisher... He is a wonderful middle child because he is patient with Connor and Sophie and he has a big heart. When you are easy and low maintenance in this house, you tend to get less attention. Squeaky wheel... Fisher didn't adjust to his new school as easily. Fisher doesn't do well with change. He likes to be home and not travel because it is such a change for him. In fact, on the second or third day at Disney World, he begins to ask when we are going home. He likes the status quo. He was born in the house in Colorado that we just moved out of to move to Arizona. He was actually born IN that house because I had a home birth with he and Sophia. He loved that house. He loved his school although I don't think any of it had to do with the actual house or school. He just loved the routine of them. Moving here was a big deal for Fisher, but because he is not a big talker, he never really talked about it. This move was like a vacation for him in the beginning. He swam everyday and played games and watched TV in his room. He didn't have TV in his room at the house in Colorado, so this was cool and new. Then school started...



Fisher's teacher took me aside on the second day of school to ask about Fisher. She was already concerned that he wasn't adjusting well to the start of school. He was having a hard time with sitting still. He was also having difficulty with the work load of the day. He couldn't remember his letters all of a sudden and writing was a real issue for him. He got distracted easily and rarely was on task. We agreed that she would watch him closely for a couple of weeks and then we would determine what steps would need to be done in order to help him. Two days ago the teacher recommended Fisher be tested for ADD.

The autism spectrum is called that because it is a big and vast issue. Connor has autism. It really only makes sense that his brother would be on the spectrum also. Keep in mind that Fisher was born at home and has never had a vaccine. He eats organic food and has a home with all natural cleaning supplies and organic sheets, etc. I have done all that I know to do to limit his toxic load, but I was still toxic when we conceived and when I carried Fisher. I know there is a certain genetic aspect at play here, but I believe that the toxins are present, just less in Fisher than in Connor.

So, what am I doing for Fisher? Fisher is gluten free, dairy free, soy free. He eats what Connor eats. Also, Fisher takes supplements. He take Dr. Amy's multivitamin just like Connor and I do. He takes magnesium and Vitamin D and fish oils and a green supplement. He isn't getting a lot of sugar or processed or artificial anything. He is doing much of his school work at home now also. I sit with him when he gets home from school and we quietly and calmly go over his work. His frustration level is very high and he is quitting easily, but I just reassure him. He gets rewards for completion of his work in a timed manner. He gets to get up and go in different rooms to do his work. I feel that movement is key with him. I just bought all the supplies for a reward chart for both boys. They do what they are expected to do without issue and they get a star. X amount of starts equals a reward.



I did a lot of research on ADD. I am not worried about Fisher in the long run like I am with Connor. Fisher just learns in a different way and the public school system is not set up for it right now. Fisher's teacher is encouraging a diagnoses, but I don't believe in labeling my kids. Connor has always been told that he HAS autism. He thinks of it as an illness that we are curing rather than something HE IS. Fisher has the "symptoms" of ADD and that is enough for me. I would rather spend my time and energy toward helping Fisher rather than labeling him. Insurance won't cover anything with that diagnoses anyway so it seems it would be labeling for the sake of labeling.

I know it is said that you are never given more than you can handle and that everything happens for a reason and that this too shall pass...Enough with the cheesey cliches? Oy vay!! Enough already!! I'm ready to be given less than I can handle for once!! We will make it through this and the saying that I love right now more than any other is:
If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

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.

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

Back From Paradise

Well, we are back. We are unpacked and the boys are playing with their new toys "HO HO" got them for Christmas. "The girl" is running around the house screeching about every toy in the house as if it is the first time she has ever seen them. Coming home is bitter sweet since we had such a wonderful trip. Mexico was amazing and the weather couldn't have been better, but it was the time we got to spend with family and friends that made it truly memorable.

We stayed in a small, rural area about two hours north of Puerta Vallarta. My parents fell in love with the area as soon as they saw it and decided to build their ocean-front dream home. They really have put their heart and soul into creating an amazing place. They also have a wonderful group of friends who live around them that make living there even more special.

Connor and his siblings really were spoiled at Honey and Papa's. They got to go to the beach every day, play in the pool and have hot cocoa while watching the sun set. Where we live in Colorado we don't get a sunset, so it makes it even more amazing to see the beauty of the sky and the sun as it goes "Night Night" into the ocean. My dad, "Papa" made lattes for everyone every night including Connor's hemp milk "latte". My mom, "Honey" even made a special hot cocoa for Connor using a special Mexican chocolate and hemp milk. We always gauged the time based on the location of the sun in the sky since we never wore a watch. This was a bit difficult for Connor a few times because one of Connor's biggest OCD's is his obsession with time.



I was a bit worried about the food aspect of going to another country and not having direct access to familiar food for Connor. I knew we were going to be in a rural area and that finding specialty food would be impossible. I also knew though that my mom had been stocking up on "Connor food" for months in preparation for our trip. Plus, Mexican food is one of the only ethnic food that is fairly easy for Connor to eat. Tacos, beans, rice are pretty much a staple at Mexican food restaurants and all easy for Connor to eat. Terry, my parents housekeeper went above and beyond making food safe for Connor every day. The language barrier was a bit of an issue initially since Terry only speaks Spanish and my Spanish is quite rusty, but she was very caring and eager to learn. She made everything from scratch using local ingredients that were fresh and organic. Connor never seemed to tire of refried beans though. No matter what else was made, Connor would always have a big plate of freshly made beans and corn tortillas.

Christmas in Mexico was an experience. I was able to learn about the local traditions, see beautiful pinatas being made, and hear from Terry about what they will eat for Christmas. In the end, it is always about the food. Ho Ho (Santa) even found us. The boys were a bit worried that he wouldn't find us in Mexico at first. Then they had fun trying to figure out if he would still ride his sleigh in Mexico or ride on one of the many whales that swim right outside of Casa Lagarto.



The kids had so much fun spending time outside all day. If they weren't in the pool, they were at one of the local beaches. We collected sea shells, and they took turns burying each other in the sand. They learned to boogy board and body surf. It was an amazing experience to watch their enjoyment. Connor loves being outside and being active. He has very few difficult behaviors as long as he is busy. Connor even taught himself a little "household Spanish". He gave a few lessons to all of us one evening out of a book my parents had. He told us that he was the teacher and no one was allowed to help or correct his gringo accent. He even talked to Terry whenever he could.



It was nice to spend time with our friends Aran and her family and see her son play with our little girl. Aran gave a few baking lessons and even though I don't enjoy cooking myself, I love watching and of course eating. My grandfather, we named "Papa Grande", was able to make it as well. We all love having him with us and seeing him with my children was wonderful. More life long memories were made and he reminded us of how powerful memories are. We would have all loved to have my grandmother there, but she is always felt. We even saw a hummingbird a few times to remind us that she will always be with us.



I just want to thank my parents for allowing us to share that time with them in their wonderful Mexican paradise. They are very generous people who spare no expense for the ones they love. My mom had been planning the trip for almost a year and it was apparent by the amount of care that went into everything.



My friend Aran said that her resolution for this year is going to be to live in the moment. I couldn't agree more. We only get a small time on this planet and even less time with the people we love. Between work and the stresses of family and obligations, it is the small beautiful moments that make it all worthwhile.

Have a wonderful 2009.