In the Spring of her second year, my daughter, Megan, began to change. It was subtle things at first, shyness and lack of eye contact but that then spiraled into her losing the ability to speak and understand speech, develop extreme sound sensitivity, refusal to eat many foods while beginning to have bouts of diarrhea and reflux, and not wanting any human contact---including mine. Her tiny and sweet voice saying, "bubbles", "cookie", "cake", vanished. My memory of this loss is encapsulated in a backyard bubble blowing afternoon when my Meg, no longer smiling or laughing, could not name those transparent circles. Her word for "bubble" became "emul" and she would say it over and over and over some more. She also began to have a compulsive need to carry two letters from the magnetic alphabet board, one in each hand, constantly. I knew something was very wrong and feared it was going to be devastating news. I was about to be right.
Working in a psychiatric hospital as a special education teacher was probably the worst place to be employed as I was learning my sweet child had autism. The days of the so wrongly accused, refrigerator mothers were not officially over yet and a cloud of shame began to follow me. The renowned neurologist whom we met with made his diagnosis based on a 20 minute observation. His parting words, "Try putting her in a nursery school as being around "normal" children may help her", showed just how dormant the science of autism was in 1995. I did enroll Meg in school but it was a special education program where all the children had some special needs issue. Meg though, stood out from all of the other children, and the team of teachers and therapists knew very little about autism or what actually to do to help my poor, lost child.
Over the years as autism has gone from an obscure, orphan diagnosis to the fastest growing special ed classification in every state school system, I have learned much about autism and Megan. It is often by looking back historically that pieces come together, that the dots connect. A prime example are the symptoms that Megan exhibited. Not one professional back then delved into why my child stopped eating, stopped talking, stopped wanting human contact, and stopped progressing as a 2-year-old. "Autism" was the answer to it all but the science and research now shows those symptoms to be the result of the true nature of her condition, a neuro-behavioral-gut-brain-illness, not co-morbid but the roots to the devastation of normal functioning. Thank you Dr. Rimland/Autism Research Institute, Dr. Wakefield, and DAN! (Defeat Autism Now), for researching and treating this complex and historically misunderstood illness.
In 2000, I first went on-line and my life forever changed. Megan had begun to exhibit bizarre and worsening behaviors. She began to hit and bite those around her, rip up paper everywhere, throw breakable glasses onto the ceramic floors, and dump gallon containers of milk and soap on the carpet. She had no language now and I was losing her more each day. The worst though were horrible, loose and smelly stools that she would often leave all over her bedroom. I needed help desperately but there was no one, including our pediatrician, who knew what to do except suggest behavioral interventions. We had already done 2 years of ABA in our home and Megan had currently started in a wonderful school for children with autism. None of that could make the horrible stools, pain, and lack of sleep better. On the internet I met parents who had the same stories, same symptoms, and same teams of professionals who could not answer why their children were so sick. A metamorphosis was happening as parents began to research medical literature, explore environmental sources, gather and report on data and labs, form organizations and internet groups, plan and attend conferences, educate their politicians, reach out to the media, and start meaningful and hopeful website blogs to change the history and future of autism (thank you, AOA!). A very big piece was emerging. A piece that overlapped from anecdotal family stories, to labs, to research, to a need for more research -- and that piece was vaccines.
Looking back at those confusing and "autistic" symptoms that Megan began to show in 1995 with the knowledge of 2009 is both helpful and heartbreaking. We now know that Megan and many other children have mitochondria issues/defects in oxidative phosphorylation, which can be a genetic issue worsened by vaccination or brought on by that very process causing a regression of functioning; zero or low levels of glutathione that make excretion of lead, mercury, and aluminum almost nonexistent (the toxic metals most seen in our kids and the two latter ones are found in vaccines though thimerosal has been decreased in recent years, it was in high amounts in most of the vaccines for Megan and her peers in the 1990's), as well as increasing mercury levels in the environment; visual/auditory/touch/taste/vestibular dysfunction are symptoms of poisoning, ie toxins such as mercury, lead and aluminum as well as bacteria and viruses (again, the two latter ones are found not only in the environment but in vaccines, too); chronic inflammation in both gut and brain due to the immune system not working properly -- ie, microglial activation (bacteria, viruses, metals), inflammatory bowel disease (an association between the presence of measles virus and gut pathology in children with developmental disorders, ie a new form of inflammatory bowel disease - ileocolonic lymphonodular hyperplasia ); impaired intestinal permeability ie-"leaky gut", reflux, gastritis, candida and clostridia overgrowth. All of these can produce pain and that is the one symptom that Megan had pervasively for years until we began to see a light at the end of the long and torturous tunnel -- biomedical treatments.
As the year 2000 became unbearable, I searched the internet trying to find what to do for Megan. I discovered a nearby doctor who had been trained to help children with autism. Through urine, blood, and allergy testing, he saw that Megan had many things not right with her. She had huge reactions with gluten, casein, and other foods, and even bigger issues with gut parasites, yeast, bacteria, and heavy metals. Eliminating the offending foods, removing the bacteria and yeast while supplementing her nutrient-starved body brought decreased behaviors -- the pain was dissipating. Her stool began to normalize as there were less and less of them with the notorious undigested foods present. It was at that time that I learned about thimerosal and the many vaccines that Megan had with it. I also went through her health history with this new doctor and cried as I saw how she became progressively sicker after each vaccine: ear infections, antibiotics, mysterious rashes especially after her MMR, fevers for weeks (though now she rarely runs a fever), horrible nosebleeds, reflux/vomiting and then the start of the green and chronic diarrhea. As those early years of treatment progressed, Megan was finally able to use the toilet. A gluten-casein-soy and corn free diet, digestive enzymes, and supplements were key. She was nine and just coming out of diapers but regardless of her age, it was a huge success. .
At age 16, Megan is still nonverbal. Her place on the autism spectrum is on the very impaired side. She is though, able to communicate her wants with a talking device, express love when not too overwhelmed, and is happy more than not though a recent eating episode of wheat and soy in an accidental exposure put her back in pain, reflux, diarrhea, irritability, poor sleep, self-injurious behavior (biting her wrist) and a deja vu of what life was like before science and autism met. Our current knowledge of what can reduce pain and increase functioning --detoxification, diet interventions, reduction of inflammation-- is the road to healing for many and to others, recovery from autism completely. But for some like Megan, who began the biomedical road later as it was not yet ready when she was young, or those who are possibly more injured and more susceptible, there are still biomedical pieces that need to be explored to make their healing complete. High strep levels in her gut and blood two years ago showed us why Megan began to have tics, repetitive movements very similar to Parkinson's and also to Tourette's, with acute, obsessive-compulsive behavior. Treating it biomedically brought those blood levels to normal and eliminated the bacteria in her stool (gut). All behaviors lessened then disappeared and shows how the DAN! approach can help these children, especially when antibiotics cannot be used or only temporarily kill the bacteria. Thank you, Dr. Usman for researching and treating Megan in the special way that you do as her physical and vocal tics were so debilitating! This is the type of research needed, metals, bacteria and viruses, as well as a study of children who were vaccinated compared to those who were not.
I am grateful for all who continue to contribute to Megan's improvements in health and functioning and to my own healing from the depths of despair. Megan still has a long way to go but we are on the right path and for that I celebrate her birth, her life, and all of you who are with us on the journey.
"Remember Red, hope is a good thing, maybe the best of things, and no good thing ever dies." ---Shawshank Redemption
Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.
TrackBack URL for this entry:
Listed below are links to weblogs that reference Mother Warrior: The Bitter Sweet 16: