My name is Liz Parker. My daughter, Kiera, was diagnosed in 2001, with Severe
Autism.
One doctor told me she would, "never even be able to bag groceries." Kiera had 20 "word shapes," could not sleep, would not eat many foods, had a bloated belly and sunken rib cage, often suffered "staring spells," shrieked for hours on end, did not like to be touched unexpectedly, could not tolerate other children nearby, always had to carry a full set of toys in her hands, drooled constantly and copiously, had diarrhea up to 12 times daily (odor so strong, you could smell it outside of our home), had a rash on her tushy that bled for months on end (yeast), did not respond
to her name, was not potty-trained, could not tolerate transtioning from one activity to another, did not play with toys (though she would group them and line them up), and did not even seem to notice her little sister other than cause and effect (if you step on it, it makes noise).
It has been six year since that diagnosis. In the past six years I spent every
spare moment researching autism, the GI system and function, mitochondrial function,
brain function, myelin repair, virus', bacteria, fungii, and so many more topics.
Thousands of hours cruising the internet, trolling scientific communities, lurking
in medical chat rooms, reading news stories, talking to other parents of children
with autism, and meeting with doctors who specialize in autism and other related
dysfunctions. Six years of gleaning kernels of possibly valuable information and
parsing the tidbits that had value for my beautiful litle girl.
In the beginning, I attended one conference that opened my eyes and pointed me in
the right direction. Dr. Kartzinel and I shared a lunch table; his curiousity and
interest in my daughter and our protocol led to one of those most valuable tidbits -
use enzymes EVERY TIME she eats. I thanked him, then, without knowing this was
going to be one of the more important milestones along our road to recovery. Kiera
is still on the GF/CF/SF diet, she still gets enzymes every time she eats; this diet
makes Kiera's brain able to process information and learn from her therapists and
environment; she also takes numerous other nutritional supplements. Kiera takes
probiotics, and eats less than 1/2% artificial anything, nearly 95% organic and
natural foods and drinks purified water.
Kiera left public school when I was told by a member of one of our IEPs, that
educating her to the level of her age-peers "would be like providing her a Cadillac,
she is only entitled to a Kia." Further that, setting education goals at this level
would not be done because she would not make progress against her IEP because she
"cannot learn because she has Severe Autism." Luckily a local Montessori school has
a different view, welcoming Kiera and her therapists. She attends school five days
a week in a K-2 classroom, she functions independently until just before lunch; her
teachers understand her disability and support her behaviorally, as needed (other
"typical" children in the classroom, too!). At this time a therapist arrives to
review her day and observe (and facilitate, as needed). Kiera leaves school around
1:30 and returns home for 1:1 intensive therapy; working on life skills, educational
goals, self-care, social skills, and other behavioral goals for up to 5 hours (ABA
with Verbal Behavior and Positive Behavioral support).
Kiera's progress has been stellar - she passed the standardized Kindergarten exam with a score in the high 90th percentile, her first grade exam with a score in the high 80th percentile; the only accomodation she received was 1:1 testing with redirection, when she lost focus. Kiera speaks well, reads, writes, plays, socializes, eats (everything!), sleeps, and appears a typical seven year-old in every way. Yes, she works 50 times harder than other 7 year-olds to learn. No she is not "recovered from autism." But nobody is going to know she is struggling with her disability, unless she chooses to tell them. My daughter, who had no future at 2, now tells me that she thinks she might want to be an astronaut or an artist or a ballerina - she TELLS me!
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