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So, I learned a bit of information here and there about the disorder and thought I was doing all that I could for my son by learning of and knowing about what was going on with him, however, I submitted to the idea that we were just going to have to sit back and accept our fate. I did know that putting him into preschool was a must, so after several meetings and observations, an Individual Education Plan was developed for him. I was thrilled that he would now have speech therapy, occupational therapy, and have a chance to socialize with other children. At the time, I didn't realized how important is was for my son to have as much structure and organization as possible. As the school semester progressed, it became very obvious that these things were needed along with more disciplinary action. I tried time-outs, spankings, and removal of desired objects when it came to disciplining my son, but I was inconsistent because I was always confused about how right/wrong it was administer particular actions because he was 'special.' As a result, little C ran about the classroom, screamed aloud at any time, refused to participate and mind, was inattentive and unfocused, and made no friends. It was as if my boy was only a nuance and benefit the class in no way... Along the way, I was told of a speech therapy program that is offered at the local college that was relatively inexpensive, so I jumped on the opportunity. My boy faced the same difficulty in cooperating and I got to observe just how extreme his behavior was when working with others. He did benefit from the therapy, but his hyperactivity, inattentiveness, and impulsivity was so strong that he didn't gain as much as was hoped. During one of these sessions, I managed to meet and speak with another lady that had shared experiences with her own son. We talked for a bit and learned some things about both our situations. This was the first time I had made any sort of comforting connection with someone that gave me hope. It was wonderful to know that I was not the only struggling parent, that there are other children like my son, and that THERE ARE THINGS THAT I CAN DO FOR HIM! She shared some information of therapy programs, financial options, and most importantly-the knowledge that with work, we didn't have to accept what I perceived as 'our fate.' This is also when I learned that disciplinary action is highly necessary, if not more important for my son as opposed to more normal children simply because an explanation can be provided to them, whereas my boy only understands a few words-but understands actions more plainly. This bit of information set me on the right track to better discipline my son without feeling bad about doing it, and his behavior has improved very much. After having learned about MEPCO, which is connected with the health department that offers therapy services, my boy gained more speech therapy and occupational therapy each week. This made for a total of three speech therapists and two occupational therapists! While working on making this happen (because all the balls seem to take too long to get rolling) I was reading Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. This book talks heavily of the casein-free/gluten-free diet. I had heard of this diet in passing, but chose not the explore it because I didn't feel that it pertained to little C, and to be honest, I do not know how in the world I came to this conclusion. Anyway, reading this inspired me to give the diet a shot. I loved the results that this mother had gotten and I knew that it was a safe experiment-if it didn't work for my boy, then I could simply discontinue the diet having learned of its effectivess in relation to my boy's behavior. You see, casein and gluten are two proteins that are found in many, many foods. Casein in all dairy products-gluten in wheat, rye, barley, and the list goes on and on. In other words, I can stretch it out and say that these proteins are found in just about all foods in the super market. These proteins are mal-digested which, instead of being properly digested, form opiate-like molecules that flood the brain with opiates, interfering with the proper function and development of the brain. As a result, children with this problem exhibit wild and autistic-like behaviors. A comparison that I use to explain this process is to imagine an adult tripping on acid-casein and gluten are my son's 'acid' and it is bizarre to think that I've been 'drugging' my son with these proteins before removing them. Some of my son's behaviors included screaming, teeth-barring, laughing loudly out of context, running around as if on speed, ignoring others so extremely that he didn't hear being spoken to, hyperactivity, and an inability to attend to a task longer than a minute. I could look into my son's eyes and not see a little boy there, if that makes any sense, and that in itself was deeply saddening. Now, imagine all these behaviors combined and in constant motion from morning until night! Anyway, in order for the diet to be effective, you must remove any trace of these two proteins. The diet is so molecularly strict, that the special casein-free/gluten-free (gfcf) foods cannot share cookware and dishes with other regular foods. Even the smallest, minute piece of regular bread will mess up the diet for several days, resulting in those bizarre behaviors. Everything that my son touches must be cleaned at all times and we must constantly wash our hands. His food is extremly limited when store bought and many of them are made from scratch with special ingredients. Not only is the diet difficult to maintain (I'm constantly in the kitchen preparing things for him to eat) but it is also expensive. His breakfast, lunches, and snacks are sent to school with him because he cannot have the foods they serve. When we began this, it was so difficult to learn and administer. I had to learn a long list of ingredients that did and did not contain these things, so label reading was a long and ardous task in the grociery store. Luckily, they can be memorized (just like the time tables when you were a kid!) I've purchased special books with list of foods that are acceptable, which has been very helpful. So, what I'm getting at here is that the diet works very well with my son. I now see that wonderful little boy when I look into his eyes, and his wild erratic behaviors have calmed considerably. The diet is difficult in getting used to, but once you've got the hang of it, it becomes a part of your everyday 'must-do' and easier to live with...which is very much worth the trouble once you see the results that it provides. Many doctors and specialists aren't supportive of the diet and say that 'there is no scientific evidence supporting the effectiveness of the diet' but I've learned to just ignore this repetitive statement because I've seen the changes it makes in my son's behavior. To test this, I've even given him gluten and casein laden foods that sent him straight back to the way he was before, so the proof certainly lies within my son. I was very skeptical about trying this out, but now I'm ever so greatful that I have! Before I learned more about food allergies, I had him tested for more possibilities other than the casein and gluten. The results showed that he wasn't allergic to anything, then I realized that only his skin was tested instead of certain antibodies in his system, which would have shown the results that I was looking for. Yeah, I had the wrong testing done, for those results disagreed with what was actually going on, that my son's behavior was being affected by those proteins. The behavior changed can't be tested in a lab, so regardless of what was told to me, I know this diet was imperative for little C's well being. I decided to have my son's hearing tested because I overheard a father talking about having his autistic son's hearing tested. They found that his hearing was fairly poor and spoke of amazing recovery after having tubes put into his ears. I'll admit, I was hoping this would be the case with my boy too, I just kept wanting to fix and fix as much as I could. However, my son's hearing was good and there was no trouble in that area, so I was happy anyway, I wouldn't actually wish the worst for my child, but I would wish to fix any problem that he may have. Now,
we are currently underway with the campus psychology clinic where he attends
a preschool kids group with others like him. We are also attending another
psychology clinic to look at ADHD and more behavior therapy. Little C
is still very hyperactive, inattentive, and impulsive, and his reciprocity
of social communication is lacking. The level of these things aren't as
pronounced as they were before I implemented the GF/CF diet, but they
are still problematic. I never wanted to put little C on medication and
tried to avoid this as much as possible, however I'm now considering it
for perhaps a short duration in order to calm him enough to be attentive
in the classroom. I'm currently reading Children with Starving Brains,
A Medical Treatment Guide for Autism Spectrum Disorder by Jaquelyn
McCandless, MD and Let Me Hear Your Voice, A Family's Triumph Over
Autism by Catherine Maurice and gaining more insight to possible
treatments. I'm wondering now if my son has more diet sensitivity than
simply the casein and gluten, perhaps soy, so I'm now removing and reintroducing
soy products to test if this is the case. I'm also researching enzymatic
treatment in hopes that I'll be able to counterattack the casein and gluten
(fairly new research I've just learned of) from the book Enzymes for
Autism and other Neurological Conditions by Karen DeFelice. I've
attended the Autism Institute Strategies Series 2004 "Promoting Communication,
Social Skills and Cognitive Development for Children with Autism Spectrum
Disorders" featuring Linda Burkhart. This conference was amazingly
informative and one of the best choices I've made in taking steps to help
my son.
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