Holding my breath

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Yesterday, Jais made some progress. I have been working on the words “up”, “bite”, “momma”, “more” (the sign) and “down” with him. Yesterday he did great! Before I would pick him up out of his crib or take him out of his car seat I would make eye contact with him, and prompt him to say “up”. Sometimes he did it quickly, other times I had to prompt him over and over again. This was typical of all of his words. Sometimes they seemed to come easier than others. However, yesterday was just great, he responded to me so much. In the bathroom, he seemed curious as to what I was doing, I told him I was going “pee pee” and he said “tee tee”! Later that evening, I asked if he wanted a “bath” and he said “ath”. His word for “up” is more like “uhhtt” and his word for bite is more like “utta”. He signs more by clapping most of the time, or twirling his hands. He knows what he’s doing though, because he gets a huge smile on his face, he seems so proud.

I’m debating whether or not to do the GFCF diet with Jais. It’s a huge commitment and life altering thing. But, so many people have seen so many postitive results from it. I just hate to get rid of cheese, that’s the biggest thing. We’ll see. I’m continuing to work on these words with Jais, there is a balance to be made though. I want to push him so he knows how to communicate, but I don’t want him to get too frustrated. I am a softy when it comes to upsetting my kids. I want them to be happy all of the time.

My greatest fear is that these words will be lost as all of his others were months ago. I hold on to each of these moments and words like the precious jewels that they are, so worried autism will steal them away from me. Please God, don’t let that happen again. I am holding my breath . . .
What is a GFCF Diet??
This info. was borrowed from autismweb.com/diet.htm
Gluten and casein are getting a lot of attention in the autism community and from doctors in the “Defeat Autism Now!” biomedical movement. Some parents, doctors and researchers say that children have shown mild to dramatic improvements in speech and/or behavior after these substances were removed from their diet. Some also report that their children have experienced fewer bouts of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF) diet. Some parents report no benefits from the diet.
Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.
Casein is a protein found in milk and products containing milk, such as cheese, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.
The theory is that some people with autism and PDD cannot properly digest gluten and casein, which form substances that act like opiates in their bodies. This “drug” substance alters the person’s behavior, perceptions, and responses to his environment, according to this theory. Research in the U.S. and Europe has found substances with opiate activity in the urine of a significant number of children with autism. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly.
There is growing interest in the link between autism and gastrointestinal (GI) ailments. A study by the University of California Davis Health System found that children with autism born in the 1990s were more likely to have gastrointestinal problems, including constipation, diarrhea and vomiting, than autistic children who were born in the early 1980s. Some parents use the GFCF diet mostly to treat gastrointestinal problems.
Studies are currently underway to examine the effectiveness of the GFCF diet, which has not gained widespread acceptance in the U.S. medical community. One recent study found behavioral improvements in children on a GFCF diet, while another study found no significant effects from the diet.
Allen Lewis M.D. wrote in the Autism Society of America publication, Advocate, “Controlled studies of the GFCF diet and the ketogenic diet have indicated improvement. A dietary trial is safe and the best way to determine if dietary restrictions are of benefit.”
Medical tests can determine if your child has a sensitivity to gluten, casein and other foods. Any pediatrician or a physician from the DAN! (Defeat Autism Now!) list can order these tests before you begin the diet.
Before you consider a change in your child’s diet, consult with a physician and nutritionist to make sure you are providing an adequate diet and nutritional supplements, if necessary. Also, please read any of the books and web sites about the diet (listed below).
Some advocates of dietary intervention suggest removing one food from the diet at a time, so you will know which food was causing a problem. It also is helpful to ask people who do not know about the dietary change if they see any improvement after a few weeks.
It’s often suggested to remove milk first because the body will clear itself of milk/casein the quickest. Gluten may be removed a month after the elimination of milk. It may take up to six months on a gluten-free diet for the body to rid itself of all gluten. That is why most advocates suggest giving the diet a trial of six months.
The diet can seem like a lot of work, at first. You must carefully read the ingredients on food packages. Beware of “hidden” casein and gluten in ingredient lists, such as curds, caseinate, lactose, bran, spices or certain types of vinegar. It may be hard to locate a substitute for the milk your child loves, although many children do adapt to the gluten-free, casein-free (GFCF) soy, potato, almond and rice milk substitutes available. (Companies listed below). Many of these substitutes are enriched with calcium and Vitamin D. In addition, many parents provide vitamin and calcium supplements to their children on the diet.
Many communities have health food stores or regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles and pasta made of rice, potato or other gluten-free flours. There also are several online and mail-order businesses that sell GFCF foods or vitamins. Also, some web sites list commercially-available foods that are gluten-free and casein-free, such as Heinz ketchup, Bush’s Baked Beans and Ore-Ida Golden Fries. Some prepared foods originally developed for people with Celiac Disease, another form of gluten intolerance, now come in casein-free varieties, too.
Foods that CAN be eaten on a gluten-free, casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn, fruits, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others.
Author Karyn Seroussi says her son now has no traces of autism, due in large part to a strict GFCF diet. Some parents report improved eye contact, less constipation or diarrhea, and better behavior. However, other parents do not notice a difference in their children.
Besides gluten and casein, some parents report that removing corn or soy led to equal or greater improvements in their children. Because soy protein is similar to gluten and casein, some diet proponents recommend removing it if the child seems sensitive.
Research into the GFCF diet continues. “Although the hypothesis may appear ‘off the wall’ in many respects, there are a number of pieces of evidence, which seem to support them. The ideas are compatible with virtually all the accepted biological data on autism and are therefore worthy of consideration. The dietary method must still be considered as experimental and no positive results can be promised or are claimed for every person,” according to Paul Shattock and Dr. Paul Whiteley of the British Autism Research Unit at the University of Sunderland, which provides scientific information on the diet.
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