Gluten Free Casein Free Thanksgiving

Can it be done? Well, we did it! On the menu we had: Turkey, Cornbread Stuffing with sausage, Stuffed Mushrooms with sausage and hummus, Cranberry sauce, deviled eggs, hummus stuffed olives, sweet potatoes with marshmellow, ambrosia salad with marshmellow fluff instead of cool whip, mashed potatoes with garlic and chicken broth instead of milk,  green beans with bacon, cornbread with  honeybutter (honey and vegan butter substitute) and pumpkin pie. Everything turned out great except the turkey. I tried a Martha Stewart recipe and it was dry. Everything else was great. The cornbread and pumpkin pie was a hit! So, GFCF really isnt so bad once you get the hang of it and the substitutes. We are doing a GFCF Buzzlightyear birthday for Mickey and then a GFCF Christmas with sugar cookies they can decorate. Is it the same? Well, no of course not but when you love your children it doesn’t matter. It was still good and knowing it is healthier for us all and healing my son just made it better.

My little bugs!

On a lighter note, I thought I would post some pictures from halloween of my little bugs! They had a blast and LOVED their costumes. Niko was walking around BUZZZZZING! Minnie decided ladies bugs buzzed also because she was right along with him saying BUZZZZZ! We took them to the local mall and Mickey did awesome saying “Trick or Treat. Thank you! and Happy Halloween.” At one point someone asked him, “what are you?” He excitedly replied, ” I am a bee, a bumblebee!” I didn’t even know he knew the word bumblebee! They had a wonderful time (we all did) and I must say my kids were by far teh cutest ones at the mall!

It’s Doctor time…

Tommorow is our first official appointment with our DAN! doctor. Choosing a doctor has been so stressful. I have heard good and bad things about all of our choices and it really is just a personal decision. I had a choice between a doctor who is a bit overly cautious and one who is willing to try different treatments. I decided on the latter because I do enough research on my end that I know what questions to ask and I am already cautious. I do not try anything on Mickey that I don’t thouroughly research and test on myself first. Anyone who knows me knows research is something I take very seriously. Both doctors are extremely invested in healing autism and have reputations of putting families first. Also, another factor is cost. Both are expensive and insurance doesn’t cover anything. The doctor who errs on the side of caution tends to order extra tests (which if I had the money, by all means!) However, I don’t. So I have done the research and am following DAN! protocol, along with Dr. Andrew Wakefield’s research and Stan Kurtz’s opinions on anti-virals and am currently looking into Amy Yasko’s protocol also. I really feel strongly about the DAN! protocol but my gut tells me Stan Kurtz and Dr. Andrew Wakefield are right. Dr. Andrew Wakefield is a doctor from England who discovered the MMR vaccine link to autism. His research found strains of the Measle and mumps virus (the same strain as in the vaccine) in the cells and intestinal walls of children with autism who had been vaccinated. Stan Kurtz ( a father of a child whose autism is very similiar to Mickey’s) found that treating his son with anti-virals was what eventually recovered his son. By treating the infection the body naturally began to chelate itself and rid itself of the toxic overload. They never had to do chelation. I feel this is the route I want to try. I want to get Mickey tested for any internal viruses and then treat them. In doing that I hope once we cure the viruses then his body will began to heal on its own. Mickey really began to show signs of autism after his first birthday and his MMR shot. He began with the car obsession and lining things up. My intuition tells me he has a viral issue. Anyway, the doctor I chose addresses these issues. So, our first appointment we will go over the supplments I have him on now and she will take me to the next step, make adjustments and go over his health history. She will send me home with a lab specimen kit also. The second appointment will be his tests (blood, urine, stool and hair.) We will wait about 6 weeks for the lab results and then go from there. The results will tell us the level of heavy metals in his body, yeast issues, any viruses, as well as food sensitivities and allergies.  In many ways I am relieved to be getting help from a specialist in the field. However, it brings on a whole new level of stress. Financially, we are past the point of struggling. The diet and supplements  are overwhelming but now tack on the medical expenses. And also the worry factor just went up a notch because now we get into the heavy duty treatments of prescriptions and some contoversial treatments like Hyperbaric Chambers, infared saunas and chelation. All of which I will have to research and make decisions if it is right for us or not. I have never felt so overwhelmed and tested in my life. I ask God daily to only give me what I can handle and all I can say is God must really think I am a strong person because he is giving me alot. Last night I had a mini melt down and my husband calmy but seriously told me that he thinks I am having a breakdown. My response was, “I don’t have time to have a break down.” It is really true. I feel so much on the inside but I really don’t have time to dwell on how worried or scared or stressed I am. All my free time goes into reading and researching methods to heal my son. I do agree that I am starting to crack and it is time to start weekly bubble baths and some journaling. My one saving grace is my nighttime prayers. You know whether prayer is proven or not, I have to say it really makes me feel alot better just to get things out. And I really do think God has kept up his bargain and only given me what I can handle. As hard as things are right now, I still feel that relief of hope. I will post an update of what the doctor says tommorow.

If the shoe fits….

As I mentioned in an earlier post Minnie has had to take a backseat for all of Mickey’s treatments so today I decided to take her out for a special treat. All week long she has been playing with Mickey’s shoes and putting them on. He has Lightning McQueen shoes that light up and she really loves them! So while Mickey was sleeping, I loaded Minnie in the car and off to the shoe store we went. When we arrived the sales lady meaured her foot and than I set her down and told her to pick out some shoes. She was like a kid in a candy store.. erh.. or rather a baby who thinks she is 16 in a shoe store! You should have seen the look in her eye. She looked at a pair of Dora light up shoes. Then she tried on a pair denim maryjanes all by herself! Finally, she caught a glimpse of a sparkly pair and that was it! I tried to show her some white Princess sneakers that lighted up but she told me, “No, no” and continued to try on the sparkly pair. The sparkly shoes were a dark glittery pink with heart sequins all over them. On the inside of the sole is a picture of the Disney Princesses. She wore the shoes in the store and there was no changing her mind or getting those shoes off. The sales ladies were cracking up because there was no denying this 17 month old had her mind set! It was like arguing with a 16 year old over fashion! Today I caught a little glimpse of my future relationship with my daughter and the fun mother daughter outings we will have. It was also amazing to see what a strong personality she has at such a young age. Anway, now Mickey can have his shoes back and Minnie is the proud owner of her very own special shoes!

Starting Preschool Soon….

When a child is about to turn 3 they get re-evaluated because the Regional Center only provides Early Intervention for children under 3. After that the school district takes over. I am TERRIFIED of this for many reasons. First, Mickey gets one on one treatment with his therapists and they work with how HE learns best. The school district will put him in a preschool classroom with other children with delays and autism and teach them in a structured setting. Can you imagine a classroom full of ADHD, Autism Spectrum Disorders and behavioral issues all together trying to follow instructions from one teacher? Is it just me or does this program need to change! These kids don’t learn by sitting still and listening. These kids needs free play in a socialized setting. They need to be given options and allowed to make choices on what they want to do. They need activities that peak their interests. If I can say one thing, it is that these kids can not be forced or made to do anything. The more you try the more they act out and resist. The typical school program just does NOT work for these kids. When is the government going to understand this? There are several private school programs i.e. Waldorf and Montesori just two name a few, that understand this (and not just for kids with autism, but for all types of kids) however, not everyone can afford a private school. We have a wonderful school near us developed by Stan Kurtz (another Autism Angel) who was just a father who happened to have a child with Autism. He became an Autism soldier and self-educated himself in biomedicine and healed his son. I am excited to say his son is now recovered from Autism!!! Anyway, he has played a very important part in the research and development of the DAN! protocol as well as opening the Children’s Corner School, which is a private school for kids on the spectrum. We are looking into this school for Mickey. I recently met and spoke with Stan and he said they match children up with other kids on the same level for the school program. So, it depends what level the kids are at when we try to get Mickey in. However, he said he will work with us in anyway he can and help us get Mickey the help he needs. Stan, like Jenny, is an Autism warrior and even though their children are recovered they continue to fight the battle for all of us. Anyway, I digress. I will put Mickey in the public school program and see how it goes. His speech therapist warned us that we need to be prepared to fight for him. They won’t deny a child services but they won’t offer it either. We will need to speak up and make sure Mickey is getting the help he needs. She offered to make calls for us and look into what programs would be best for him. She also advised me to go to each of our 3 classroom options and meet the teachers and kids and see which I feel most comfortable with. I just sent in all his paper work and we are waiting to here when our next IEP meeting will be. They will go over Mickey’s most recent evaluations, discuss his needs and talk about what services he will get. The meeting can take up to 8 hours. It is my job to research ahead of time, be prepared to tell them what I want for my son, and don’t take no for an answer. Now, in all fairness, the schools are OVERWHELMED to say the least with kids with delays. 1 in 6 children fall somewhere on the spectrum. Those are only the kids that have been evaluated officially and it is a statistic for kids born in 2001. The Autism Society estimates these numbers to actually be much higher. The schools are doing the best they can with the limited resources they have.

Can’t forget about Minnie…

If you can’t tell by my blog, my life is pretty much consumed by autism. Minnie has kind of been shoved right along this path. She patiently (ok, not so patiently) goes to all Mickeys therapies and treatments. In fact she participates right along with him most of the time. She definately isn’t getting the full attention she deserves though (add on some more Mommy guilt!) So tonight she was coming down with a cold. I took her with me to Whole Foods to get some supplements. She loves outings alone with mommy. I usually listen to talk radio in the car but tonight I was channel surfing and it hit on a top 40 station. Kanye West was playing Stronger and when I changed it she freaked out. I put it back and I heard her singing/rapping?? in the back of the car. I turned the volume down to hear her and when she realized I turned it off she stopped almost like she was embarassed but when the volume went up she went back to singing and dancing. It was so cute! She is really growing up fast!  

Just the Two of Us

I am happy to report Mickey and Minnie have been inseperable. When one is sleeping the other HAS to get the other one up. They will ask for eachother. Mickey calls Minnie “EE-nina” and Minnie calls Mickey “Nih”. They chase eachother, pull eachother and laugh, tackle eachother and share! The other day in the car Minnie reached over to Mickey for a pretzel and he happily handed her one. It is great to see them interacting so much.

Autism or Autistic?

We live in a world full of labels. As we all know words can have alot of power. There are certain words we all know are taboo. This applies to autism as well. The question is which is appropriate to say and why- The child has autism or the child is autistic. It is the case of the child has the disease or the child is the disease. In the case of autism, my child has the disease he is not the disease. It is hard to differentiate and I catch myself slipping into a vernacular I am not comfortable with. The way I look at it is I do not want Mickey to hear people say he is autistic because that defines him. I don’t want him to limit himself because a label defines him. Therefore, I try to be careful when I talk about him or tell him about autism. I tell him he has symptoms of autism caused by toxins. He understands alot more than I thought. One day in the car, it was just the two of us. I told him that it was okay that he wasn’t talking yet and it wasn’t his fault. I know he communcates with me and it is my job to find new ways to listen to him. I told him I was sorry that we put so much pressure on him to talk and that I knew he was doing his part and I was so proud of him.  I told him I would try harder. The look he gave me told me he understood everything. He smiled and reached for my hand and said “Mommy, it’s okay.” My point is, I think Mickey understands more than I do on so many levels. So I try to really let him know this disease is not about him, it is just happening to him. Anyway, I came across this article that speaks about labels in a beautiful metophorical way. Here it is:

Inspiration

The article:

Autism!  Pdd nos!  Aspergers syndrome!  ADHD!  High functioning!  Low
functioning!  Delayed!  Hearing these words about your child can be
crushing.  They can devastate you to your very core.  The good news is THEY
DON’T HAVE TO!  Let me tell you why….

It doesn’t matter.  That’s right.  It simply doesn’t matter.  If you
want to really help your child then read on.  I’m serious.  Don’t be like
the thousands who wish they had “lived” this concept sooner.

Pretend for a moment you have a newborn.  He is simply perfect.  By the
time he is two years old, his fingers are so long, they look strange.
  You go to a renowned physician and ask “What’s wrong with my child?
  Why are his fingers so long?”.  The physician smiles and says “Your
child has a condition called spindle fingers.  He has a natural gift for
playing musical instruments.  Many dream of having this talent”.

You’re absolutely thrilled and can’t wait to share the news. You rush
home but on the way you stop to buy a toy xylophone, piano, drum set and
flute.  You set them out on the floor when you get home and you watch
proudly as your toddler strums each one of them.  You don’t care that
everyone else thinks it just sounds like noise.  You have a budding
musician on your hands and he’s practicing!

As the months go by you encourage your child to play instruments.  He
gets a little older and expresses his preference for the piano.  You
take him to piano lessons, listen to famous piano players and perhaps even
go to concerts.  You explain to your son that his fingers are long
because he is talented at playing the piano. Your son plays the piano
beautifully.  He is proud of his fingers and his talent.  You are proud of
your son.

You run into the physician a few years later.  You tell him proudly
about your child’s piano skills.  He smiles broadly and says “I made it
all up.  There is no condition called spindle fingers”.  “What?” you
shriek “that’s impossible.  My child is an excellent player”.

“Of course he is” says the physician “It’s called belief.  You believed
in your child’s fingers.  You believed in his talent.  You encouraged
him. It didn’t matter how many mistakes he made.  You hardly heard them
because you knew he was on the path to greatness.  Your son felt your
belief.  He saw it in your eyes.  He felt it course through his being.
  It inspired him.  Every time he looked at his long fingers he thought
about his talent.  He felt proud of himself.  He knew he could do it.
  Your unwavering faith inspired him to be the best he can be”.

My advice to you is this.  Forget about the boxes and the labels.
  Ignore the judgments.  Your child is fascinating.  Your child is a unique
and wonderful being who is incredibly special.  Give him the tools.
  Encourage him on his journey.  Never lose faith in him.  Stand by his
side.  Teach him as much as you can.  Watch in delight as he soars far
beyond everyone’s expectations.  Everyone’s except yours and all those who
joined your belief along the way!

I hope that you enjoyed this as much as me.

The Vitamin D connection

I am incredibly excited to learn about this latest theory simply because it makes ALOT of sense. In the past 25 years we have been told that the sun is bad. We are supposed to stay out of it and always use sunscreen, right? Well, it turns out moderation is the key. We are not supposed to bake in it like the beach bunnies of the 70’s but we are supposed to get about 20 minutes of it a day. The sun is our major source of Vitamin D3. With 20 minutes of sun our body can produce 20,000 units od Vitamin D. We would have to drink 40 glasses of milk or take 10 tablets of Vitamin D to equal that. The government says we only need about 200 units a day. Whereas the latest research says we need at  least 4000 units a day. It makes sense because we know the highest suicide rate in the country is Seattle where it is grayest most of the year. We know we need sunlight and that it effects our mood. But did we know it also effects our health? They are now linking Vitamin D to playing a role in causing seventeen varieties of cancer as well as heart disease, stroke, hypertension, autoimmune diseases, diabetes, depression, chronic pain, osteoarthritis, osteoporosis, muscle weakness, muscle wasting, birth defects, and periodontal disease. They are not saying it is the sole factor but they are saying it plays an important part. Autism research connects it even further stating that Vitamin D plays a role in creating glutathione which is your bodies natural detoxifier. We live in a world FULL of toxins and our bodies have to rid them by making glutathione. Without enough vitamin D it is unable to produce enough glutathione to detoxify our bodies. Taking it yet one step further, we know that our bodies often crave the foods we are deficient in. A large percent of kids with autism crave milk (it is all Mickey wanted) it is only a theory and there are other factors that play in but it is possible they are craving the vitamin D3. Parents are now testing their kids for vitamin D deficiancies and sure enough their kids are deficient. We are counting down the days till we get in to our DAN! doctor for the complete tests. I am taking a wild guess Mickey will also be deficient. I am now scheduling in daily walks with the kids so we can all get some Vitamin D.  We still use sunscreen (although now we use an all natural one from the health food store) but we only use it when we will be in the sun for long periods of time or on extremely hot days. However, it is important to get daily sun.

Autism Conference

I had the opportunity to attend the Defeat Autism Now! Conference in Anaheim in September. It was a great pool of resources with all the leading experts in Autism. Although it was the largest turn out to date-thousands (thanks to the recent media trail led by Jenny McCarthy) it was still a very intimate setting and I was able to talk to several of the doctors, authors, researchers, therapists, scientists and other experts in the field of biomedicine and autism. I also had the chance to meet and thank Jenny McCarthy. Jenny is someone very special to me now. I had heard of Jenny McCarthy before but would not describe myself as a fan. I knew she was loud and an over the top personality. I did read her pregnancy and baby books and when we moved here I joined her Mom’s group online. However, I never guessed she would become my angel. We had a hard time deciding if Mickey had autism or not. We knew he had speech delay but autism was a big word for us. We thought autism meant losing our child forever. We weren’t ready to hear that. Plus, Mickey didn’t fit into what we thought autism was. We felt he was extremely smart but just couldn’t express himself yet. That didn’t seem like autism. We were right at a point where we had to decide to get Mickey evaluted or not. We justified everything by saying the tests were biast, Mickey’s wouldn’t test well with a stranger and they were just handing out autism labels to every kid that walked through the door. Looking back I see we were very confused but I also see fear and denial. I could not hear that I would lose my son. I was starting to see Mickey getting worse. He had odd behaviors (jibberish, flapping hands, tensing head, spinning, all day tantrums and would run off from me all the time) He wasn’t regressing but he wasn’t progressing either. I knew something was wrong. It was a Friday night moms night out when a friend at dinner lent me her book “Is this your child” by Dr. Doris Rapp. I opened the page and it flipped to dairy allergies. My body got chills and I knew this was a message. We went to Disneyland for a few days and returned on Wednesday. I watched Jenny McCarthy on Oprah saying autism could be healed! I cried and cried still not fully connecting that my child had autism. The next day his Early Interventionist came over and Mickey was out of control. She tried to reassure me that it was typical behavior for autism. Autism AUTISM AUTISM AUTISM. That is all I heard.  The world stood still. The room was silent and all I heard was AUTISM and saw an image of Jenny McCarthy on Oprah. BOOM! It was like a flash of lighting and a booming of thunder. I knew. At that moment it was as if God wrapped his arms around me and said it will be okay. We can handle this. I now see that God had set up a series of signs to prepare me. They had to happen in that order for me to get it. Later, when I met with Jenny. I sat with her and told her, “It wasn’t until I heard that their was hope that I was able admit that my child had autism.” Now I can help him.  I had about 3 days of mourning where I cried and questioned and just fell apart. After that it was go time. I bought every book on autism from 3 different book stores and went online and ordered resources from the Autism Research Institute. We started GFCF right away. Now my son is doing better and faster than I could have ever dreamed. If I had not heard Jenny’s message I don’t know what would have happened. I know we would have declined that Autism evaluation and Mickey would not be getting the help he needs. We wouldn’t have known about the GFCG and my son would be tantruming and sitting in his chair watching TV all day, not eating anything but processed chicken nuggets and drinking milk in a bottle. He is very high functioning so I am sure he would have talked eventually but I have no doubt he would struggle in school and possibly be in special ed all his life. I have heard several stories about kids who don’t talk until 4 or 5 and then they are “fine.” Think how those kids would be if they got the help the needed. They would be more than “fine.” There is no doubt that my son learns in a unique way from other kids. We will look into other forms of education for him such as Waldorf schools. However, our goal is to have the Autism label removed before he starts kindergarten. I have heard about kids with autism who lose the label and go on to gifted and talented programs and grow up to be extrodinary adults. My son isn’t autistic but rather has symptoms from autism. Once those symptoms are removed my son will be like nay other typical child. I still think his brain works differently from others though and I can see we will need to chood alternative learning routes for him but honestly I think that applys to most children today. Our schools are just not set up to teach this new generation of kids. Anyway, Jenny was a catalyst for my son’s road to recovery and for that I will always be grateful. She may seem loud and wacky but when it comes down to it she is a really personable and strong Mommy who fought for her son and is helping thousands of kids by spreading her message of hope. She was the first of my now many autism angels.