Power of Exile

The Power of Exile -
 Autism, A journey to recovery



Contents


Introduction: Sara’s Diet
and the IDEA


PART ONE –
SARA’S STORY

  1. Sara
  2. Sandra
  3. The Journey begins
  4. Sara joins our Family
  5. Journal Notes
  6. Impressions
  7. Influential People
  8. Center Stage
  9. I believe in Miracles
  10. Miracles in Abundance
  11. A Second Rainbow
  12. Widening Horizons
PART TWO – EXILE
  1. World travel on a Wing and a Prayer
  2. Asperger Syndrome (Sam’s story)
  3. Autism: a Causal Theory and Treatment Option
  4. A Change in the Weather
PART THREE – RECOVERY
  1. Second Timothy
  2. Turning Blue
  3. Food Intolerance in autism
  4. Sara’s Diet
    1. Introduction to the restricted diet
    2. Essential nutrients from foods
    3. Practical help with implementing a diet program
  5. What is Lutein?
  6. Autism, Pigments and the Immune System
  7. South Africa, World Community Autism Program
  8. Eating disorder in autism
  9. Autism, Origin – A Plausible Theory
  10. Autism, putting it all together
EPILOGUE
Epilogue








From: Sara
Sara arrives
When Kathy Nallan phoned to make arrangements to meet Sara, we were surprised by the information we were given. At six, Sara was so young to be considered for the type of specialized care offered by Professional Parenting. She was younger than Erika, and we thought she might be just the little sister Erika so desperately wanted.
  We became apprehensive as more and more information poured forth. Sara had been identified as significantly developmentally delayed at 20 months. She had had a grand-mal seizure and had been resuscitated by emergency medical workers at the age of twenty-two months just after receiving her vaccination. Sara had been in rehabilitation and special education for three years and had been diagnosed as epileptic, hypotonic and hyperactive at four years of age with severe delay disorder. Evaluations at five years improved her clinical picture to include ‘possibly trainable’ when testing included an IQ score of 34. She had been in a special class for the ‘trainable developmentally delayed’ for less than a year when her behaviors alerted the staff to the possibility of sexual abuse. She was considered to be non-verbal although she was echolalic and could say her name.
  I arrived at the Professional Parenting office for a meeting with the staff and with Sara’s teacher. I listened as specific details of the events leading to Sara’s placement in the emergency shelter were given. The teacher, Alene was inquisitive, and I felt as though I was being cross-examined although the concern for Sara’s well-being was evident. Her love for the child, whom I had not yet met emanated from her every gesture, and her obvious faith and determination had been directed towards what was best for the child. The details of what Sara liked to eat, what simple accomplishments she had made under this teacher’s tutelage, and details of bizarre behaviors spilled forth.
  Then there was the bigger picture. The teacher had risked so much to get this child to safety and would have taken her into her own family if the courts had allowed it. Even in the safety of the emergency shelter, threats from the biological family demonstrated the need to find Sara a safe haven. The professional recommendations indicated that institutionalization would have been the most rational course of action, but the difficulty of finding an institutional placement for a five-year-old whose parents’ parental rights had not been terminated, as well as the need to get her into long-term care, led to the evaluation by Professional Parenting.

Sara’s early life
The first three years of Sara’s life are not at all clear. She had first been evaluated before she was two years old when her Sunday School teacher had become concerned that she was no longer meeting developmental milestones. She had had some language development but regressed noticeably after a bout of chicken pox and was absent for several weeks. Her interaction ceased and she became withdrawn and echolalic. Sara just wanted to flip the light switch off and on again and again, or rock back and forth. She screamed when it was time to go home from church, did not want to be touched and would scream and kick if an adult attempted physical contact. Her Sunday school teacher persisted and it was because of her involvement that Sara was initially evaluated. She was found to be severely delayed/disordered and was placed in a special education pre-school.
  At 22 months Sara received her regularly scheduled vaccinations: DPT, MMR and polio. During that night and through the following day she developed a high fever which continued to increase even after she was given Tylenol™ (acetaminophen). When this developed into a grand-mal seizure, Sara was transported to intensive care by EMS - she had turned blue. Whilst in the intensive care unit she continued to seizure until her fever was brought under control.
  At the end of several months of rehabilitation, speech therapy as well as continuing in the special education pre-school setting, Sara was again evaluated. The report described her as ‘. . . a 3 years and 4 months old child who has made immense strides and can tolerate up to 10 minutes of one activity. She can maintain eye contact for several seconds. She can follow one-step instructions such as “look at . . .”. She imitated some sounds and could sign “me” and “more” with 80 percent accuracy.’ In summary, the evaluation stated: ‘Sara continues to be severely delayed/disordered in her speech/language development. Since Sara exhibits some autistic tendencies, a TEACCH referral is recommended.’

POE