Listmates,
I just wanted to share this story with my internet family. It will be published
in a local magazine next month.
Cindy
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CATERPILLARS INTO BUTTERFLIES
Cindy Peters of Cary talks about her journey as a parent and how
her adopted son came to suffer from autism as she triumphantly
turned a tragedy into a blessing, for her family and our community.
Cynthia A. Peters is the mother of a seven year old child with autism. For the
past five years she has devoted her time toward helping her son overcome many of
the challenges of autism. Ms. Peters was the President of BASIS, Inc. for seven
years, a small computer software consulting company, following a successful
career with Unisys Corporation where she was a technical manager of software
development. She has since left her professional career to do extensive research
in the areas of education and biomedical treatments in the field of autism. This
woman's commitment and dedication to her son was a great challenge that some may
have not chosen to take. Her research led her to new answers that were shocking
but informing others about these findings is her vision and now taking her into
a greater cause for autism and its possible prevention.
Q: Cindy, please tell me briefly about your family and your experiences with
autism.
My husband and I have been married for 16 years, and we are the parents of two
wonderful children, both adopted from Korea. Kira is now 11 years old and Kenny
will be 8 in May. I want to tell you Kenny's story. He was 6 ˝ months old when
he arrived on December 8, 1993. He was happy, healthy and big, and
developmentally on target despite his premature birth at 32 weeks. Two weeks
after joining our family, Kenny received his first DTP vaccine. It was the start
of a chain of events which would forever change our lives. A week later we had
to rush him to the ER in the middle of the night after he began having
difficulty breathing in conjunction with a high fever. He was diagnosed with
croup and we were sent home. Two days later on Christmas Day, I was back at the
hospital with him because his heart was racing, his fever was up, and he was
again struggling to breathe. Three days after that a rash appeared on his trunk
and gradually spread over his entire body. During the next few months he
developed sensitivities to many foods and medicines, especially anything
containing artificial flavoring or coloring. We were repeatedly assured that he
would outgrow these problems.
Q: So, at this point, you thought that everything was being treated and that
your son was just coming through some severe medical problems?
Yes, despite the recent health problems, life was good and Kenny was happy. He
was playing well with his sister and we thought we had addressed all of his
medical issues. He showed every sign of keeping up with Kira -- intellectually,
emotionally and physically. When he was with other children, his eyes would
light up. He was a very friendly and social little boy, and he loved to be held
and cuddled.
Q: What happened to change this picture?
At his 15 month "well baby" check up, Kenny received a combination of the DTP,
MMR and OPV vaccines. He had a slight reaction which manifested as hives but I
was told to take him home and that everything would be okay. Everything was not
okay. My once happy little boy was cranky and wouldn't stop crying. He was
lethargic. Something wasn't right. I took him back in to be checked a few days
later. Then, on the morning of the sixth day after the vaccinations, my husband
and I were awakened at 5 AM by a blood curdling shriek from Kenny's room. I had
never heard such a sound before in my life, and hope I never will again. We
rushed into his room to find his temperature was 104.6. My husband filled the
tub with water to cool him off while I called our pediatrician. I remember
saying "I think he's having a reaction to the MMR," and the response from the
doctor was "Its too late for that now." I was told to bring him in at 8AM that
morning and was advised that it was, "Probably just a virus."
Over the next few months Kenny gradually began to lose his skills and his
speech. It happened so slowly that we didn't notice at first. But then came a
time when it seemed his speech not only wasn't progressing but it had
disappeared. We were referred to the Developmental Evaluation Center for an
assessment.
Q: How long did yours son's condition deteriorate and what happened?
One year after the vaccinations we were told that he was "severely autistic" and
that he might even need to be institutionalized at some point in the future. I
remember standing in the empty parking lot after we walked out of the building
with the news, crying on my husbands shoulders, knowing there would be nobody to
talk to about this for the next three days since it was Labor Day weekend. In
retrospect, by reviewing the home videos of Kenny, it is easy to see the
regression occurring. There was noticeably less vocalization and it was harder
to get his attention. There is a marked contrast of Kenny gleefully opening
presents for his first birthday versus his total unwillingness to even look at a
present after the last vaccination. Head banging and toe walking, other common
symptoms of autism, also began after that fateful day.
Q: I am sure you were devastated at this news Cindy. What did you decide to do?
I decided that my new "career" would be working full time as Kenny's advocate. I
began by researching educational treatment approaches. Since he was nonverbal, I
felt he would be more successful in a one-on-one situation rather than a group
setting. I concluded the best approach would be to implement an intensive ABA
(Applied Behavior Analysis) program for 6 hours a day, 7 days a week. Many
professionals advised me against taking this approach, stating that it was "too
hard on the family." Indeed, it has not been easy, and there were times I felt
very discouraged. Also, Kenny's medical issues made learning even more difficult
for him. I began trying to understand the cause of these, and looking into
traditional treatments as well as alternative therapies. Many people advised me
to "get on with my life." But I couldn't do that. I felt strongly that it was my
responsibility to do what I could to help Kenny.
Q: Tell me briefly about your research on mercury poisoning?
Early in the spring of 2000 I became aware that there were some suspicions that
the increase in the occurrence of autism from 1 in 10,000 children in the early
1990s to 1 in 250 today might be related to the thimerisol used as a
preservative in the DTP, Hepatitis B and Hib vaccines. It is 49.9 % mercury,
which is a known neurotoxin. A paper was about to be published showing a
striking comparison between the symptoms of autism and mercury
poisoning. After thoroughly reviewing this I became certain that mercury
poisoning was at the root of Kenny's medical problems. We flew down to Baton
Rouge, LA to meet with a physician who was successfully treating her own son for
mercury poisoning. He also suffered from autism, and had similar symptoms to
Kenny, but was now almost completely recovered. After examining Kenny and
looking through his test results she confirmed what I had suspected. She
believed that he was indeed mercury poisoned. We immediately began treating him
with oral chelation therapy and observed tremendous progress in the ensuing
months.
Q: Did you continue with his educational therapy during this time?
Yes, a few months earlier I had attended a 2-day conference to learn about a new
approach to ABA therapy called Verbal Behavior, which places an emphasis on
teaching children with autism to understand the function of language. I was so
excited after the first day I could barely sleep that night. Before the
conference was over, I was already beginning to think about the possibility of
setting up a Verbal Behavior classroom in the RTP area. As soon as I got home, I
immediately put what I had learned into practice and was amazed to see how much
Kenny really did know, but hadn't been able to demonstrate to us. By Christmas
2000, he could sing the ABC song, count to 10, and answer many questions. He was
also making requests using phrases and even a few sentences. It was the best
Christmas present I have received in years! I attribute his success both to the
new teaching techniques as well as the chelation therapy, which created the
opportunity for him to learn.
Q: What are your future plans for autism and helping other families with this
life changing condition?
The autism diagnosis can be devastating, and most parents have had no prior
preparation for dealing with its many challenges and obstacles. There are
numerous specialists in this area but there is little attempt to integrate
interventions with each other. In the past five years I have spent a great deal
of time guiding families with newly diagnosed children, and helping them
to look at their child's complete picture. My vision is to continue this mission
of outreach and support from a new school which will integrate all of the
necessary therapeutic services into a comprehensive program individually
tailored for each child. With this goal in mind, my husband and I, with several
other parents and dedicated professionals, founded "The Mariposa School for
Children with Autism" in December 2000. Mariposa is Spanish for
butterfly, and is an excellent metaphor for the children who are emerging,
through their own hard efforts, from the cocoon of autism.
We have already identified an excellent facility in Raleigh where we will share
space with another private school, and plan to begin operating in September,
2001. The staff will consist of an educational consultant, a behavior
consultant, a speech therapist, and an occupational therapist who will work as a
team to oversee the direction of each child's program. The students will also
have individual instructors who will work with them on a one-to-one basis. The
school will have strict indoor air quality control and natural task lighting, as
many children suffer from environmental sensitivities. Another part of The
Mariposa Schools mission is to provide community services and resource programs
for the autism community. We hope to inform parents about the many treatment
options available, funding resources, and medical intervention. Special training
sessions will include regular courses discussing the characteristics of children
with Autism Spectrum Disorder, training for parents who are beginning intensive
home programs, techniques to increase communication skills in the home
environment, ways to deal with behavioral difficulties, and instructor training.
We will also host parent support groups in order to provide an opportunity for
parents to learn from each others experience and to lend support in difficult
times. Finally, we will provide consultation services for parents as well as
other schools needing input on inclusion techniques.
Initially we need $500,000 to outfit our school with the necessary therapeutic
equipment and supplies and to recruit qualified teachers and staff. We hope that
by informing our community about this great facility, we will receive the funds
and support necessary to finish this important work.
For more information about our school visit our website at:
http://www.rtphome.org/mariposa/
Cynthia A. Peters is the President and founder of the Mariposa School for
Children with Autism. She resides in Cary, NC with her husband and two children.
Cindy (Cary, NC)
persistentC@...
http://www.rtphome.org/mariposa