One Person’s Experience with The AGI Residential/Daily Living Support Online Course

Jeremy Sicile-Kira wrote the following blogpost in January 2014. He had the opportunity to have two new staff members take the The AGI Residential/Daily Living Support Online Course, which provides best and evidence-based practices for those who support the daily-living needs of transition aged students, young adults and adults with autism and related disabilities. Jeremy wrote about his experience and his thoughts about the curriculum. Jeremy recently reached his dream of moving out into his own place. Jeremy’s  comments below, were originally published in an Autism Research Institute newsletter. Jeremy is the co-author of A Full Life with Autism

Jeremy and JL
Kindly having well-trained Direct Support Providers is frankly the key to having a successful life for me and others like me. Two new direct support providers who joined my team nicely had the opportunity to take the online AGI Residential/Daily Living Support course. Frankly they learned more about autism then I could kindly teach them. Basically the Autistic Global Initiative (AGI) course greatly gave them a really firm foundation for understanding why I was the way I am. The course justly explains key elements about how to figure out why we act the way we do and how to best support a person with autism of different abilities. Kindly general information about autism is not always nicely explained in training given by organizations who hire staff to support people like me or other types of autism. Often training for support staff is about legal, medical, safety and health issues. Kindly they may train on how to handle behaviors, but not about why we have those behaviors. Kindly the support staff who went through the AGI training frankly had a better grasp of self determination than before they started working with me.

The new staff following the course learned nicely faster and more completely how self determination in reality applied to my life and justly how it meant they had to kindly learn all the best ways to support me.

I am very grateful that my two new staff members had this opportunity. They greatly learned how to insure that my dearly-needed supports were in use. Frankly having plans is the most important support. The staff help me to schedule my time so I have work, chores, learning, and social activities. Mixed in to my schedule are strategies to help me stay regulated. Greatly my mother in the past helped with this scheduling; now greatly trained staff can help me build my own schedule. Having a plan means believing that I very nicely know how to prepare myself mentally for the day. Having a plan is important to avoid stress and anxiety.

Justly the very kind support staff behave better when they have an understanding of what causes difficulties for me. Greatly my hope is that I won’t very much need to be supported every day in the future, and that I can become more independent. The AGI course gave the new staff a better understanding of techniques to help me learn how to physically move my body to learn and do functional living skills. Truly my body gets stuck. This means that when I try to move it does not respond to my command. Greatly the staff made conversational remarks about the course and I could tell they were learning more and greatly improved every week.Justly I noticed that their confidence grew as their knowledge did. Nicely when staff feel comfortable, I do as well. Justly the staff understands how to best support me when I experience anxiety and PTSD. Frankly nice staff make me feel safer when I’m out because I know they can help me stay calm. My comfort level goes up when I feel safe.

Greatly my mom does not need to train new staff who took the AGI course about autism, only about Jeremy-specific training that I want my support staff to have. Truly I feel more happy knowing that when I move out to my own place there is a program that can help with training new staff.

Jeremy and Handsome


Autism and Hope, South of the Border

Autism knows no geographical boundaries, so in honor of World Autism Awareness Day, I decide to head south of the border instead of attending awareness events in the United States. When I arrive in Puerto Vallarta, Bryan McAllister is waiting for me at the airport. I have come to spend a week with Kerri Rivera, director of the AutismO2 clinic, the only place in Mexico that offers biomedical and behavioral treatment – and hope – to Mexican families impacted by autism.

Bryan is a nurse who specializes in ozone therapy and he works at the clinic. I ask him how he met Kerri. “On ebay. Her husband Memo was looking to buy a vintage Desoto car and I was selling one. Memo wanted it to use for parts for a 1951 Desoto limo they own,” he explains. Somehow, Kerri and Bryan got talking about the clinic she and Memo were starting up, and Kerri convinced him to move down here.

That’s how movers and shakers like Kerri are – persuasive and inspiring and able to convince people to share their vision. In Kerri’s case, the vision was that of a not-for-profit clinic funded by money paid by those who could afford Hyperbaric chamber treatments, thus offsetting the costs of autism treatments for those who could not.

Two years later, the afore-mentioned vintage Desoto is still sitting at the border, waiting to be shipped and for all the necessary import/ export paperwork to be filled out. But Bryan is here and the AutismO2 clinic is up and running – some things just can’t wait. Like most non-profit autism organizations, a child was the inspiration behind the vision Kerri had. In this case the force is Patrick, Memo and Kerri’s youngest son, who regressed after receiving the DPT,HepB, infB vaccine (5 shots in one) at two years of age. Patrick, now 8 years old has benefited greatly from different types of biomedical treatments, as well as behavior therapy.

Mexico has been Kerri’s home for 14 years now, ever since she created a family here with her Mexican husband Memo. When Kerri first met her husband when she came here to study Spanish, little did she know that they were destined to be married years later, and eventually become a driving force in the Spanish- speaking autism community.

After their son Patrick was diagnosed with autism, Kerri began to look into treatments and realized she would have to travel often to the United States if her son was going to recover or improve. Kerri realized that nothing was available in Mexico, and wanted to bring help and hope to the many families impacted by autism who could not afford the treatments, and who had no access to resources in the United States. In January 2006, Kerri met with Dr. Bernard Rimland, founder of the Autism Research Institute in San Diego (the border town I live in) and long considered the godfather of the movement for understanding the biological treatment of autism. With his blessing Kerri and Memo had the Defeat Autism Now (biomedical treatment) protocol translated from English into Spanish. Two weeks after Dr. Rimland passed away, the clinic AutismO2 was opened. “Nothing we do on a daily basis here at the clinic to help families impacted by autism would ever have happened without Bernie Rimland,” Kerri tells me.

Kerri, inspired by Dr. Rimland, became proactive when her son was diagnosed, becoming both a Rescue Angel for Generation Rescue, Jenny McCarthy’s autism organization, and a mentor to mothers of newly diagnosed children for Talk About Curing Autism (TACA). Kerri continues to provide information and help to people all over the world in both Spanish and English in those capacities. But she and Memo wanted to do more. In 2006, Kerri and Memo founded Bebepingo AC, the non-profit structure that funds the AutismO2 clinic, by buying a hyperbaric chamber that people here in Puerto Vallarta use for a variety of health reasons – for Multiple Sclerosis, Cerebral Palsy, Down’s Syndrome, autism, arthritis, rheumatoid arthritis infections, and diabetes to name a few. Proceeds from the treatments in the chamber go towards helping the children with autism from low-income families that they treat at the clinic. Besides the chamber, the clinic offers behavioral therapy, nutritional and supplement consulting, and information on the Defeat Autism Now (DAN!) biomedical protocol, as well as IV chelation, and ozone therapy provided by Bryan, who has worked with ozone treatment for 17 years. The AutismO2 clinic is the only clinic of its kind in Mexico, a country with no practicing DAN! Biomedical doctor or behavioral therapy clinic.

In Mexico, “hope” is not a word usually associated with autism, as there is very little on offer for children who have autism. Hope, however, is apparent not only in abundance at the AutismO2 clinic, but also in Kerri and Memo’s home. Parents and the children who have traveled great distances to receive treatment, drop in to discuss nutritional support with Kerri, share the midday meal, or just to say “hola.” Besides Patrick, Kerri and Memo have an older son, Alex as well as three dogs and 3 cats that add much warmth to this already nurturing home. While I’m there, I meet Luis Cisneros and his 5 year old daughter, Diana, who has Down’s Syndrome has begun to talk after 10 hyperbaric treatments and change in her diet as well as nutritional supplements. I also meet Dr. Edith Vela, who runs a small ABA program for her son and three other children in her living room because there are no schools willing or able to teach them in Mexico. Edith’s son, Alex, has also responded well to treatments; this is his second stay in Puerto Vallarta to access the services at the clinic AutismO2. While we are eating lunch and visitors drop in, Memo explains his reason for donating so much of the family’s time, money and energy to AutismO2. “It is a wonderful thing to see children getting better. How could I not help these people when I see how much of a difference it is making in their lives, in my son’s life?”

The day I leave, Kerri drives me to the airport. She slows down as we pass a Holiday Inn. “There, near the flags in front of that hotel is where I met Memo for the first time. I was waiting for some college friends to play tennis, and he was meeting up with some friends as well,” she explains, smiling and enjoying the memory.

What a fortuitous day that was for Mexican families impacted by autism.

This first appeared on the April 27, 2009

Dr. Bernard Rimland 1928 – 2006

Dr. Bernard Rimland passed away just a few days before this past  Thanksgiving and will be mourned by many.  At times controversial, always searching for answers, he changed the way autism was viewed  worldwide. Those of us who knew him as Bernie will always feel a twinge of sorrow around this holiday, a reminder of how  much we have  to thank this pioneer who  played  David to the medical establishment’s Goliath.  As  research would prove, fighting Goliath  was not a lost cause  but a righteous endeavor.

The first time I heard  Dr. Bernard Rimland’s name  was the  day after a visit with my son to a psychoanalyst  for the only treatment on offer for autism  in Paris at the time. The bookshelf in the  waiting room   included  a few copies of ‘The Empty Fortress’ by Bruno  Bettleheim,   who believed that autism was a reaction to bad parenting and expounded  the ‘refrigerator mother’ theory of autism.

Dr. Rimland’s  book,  ‘Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior’(1964),  would have been a  better choice in this psychoanalyst’s  waiting room. In his book,  Dr. Rimland  lambasted  the then generally held view that autism was a psychological disorder, brought on by cold and unloving parents. His conclusion was  that autism was the result of   biochemical defects underlain, perhaps, by a genetic predisposition, but ultimately triggered by environmental assaults. This book grew out of the research he did searching for answers when his son, Mark,  born in 1956, displayed behaviors which are now easily recognizable as symptoms of autism but were rarely seen in those days.

The psychoanalyst I visited informed  me that  my son had autistic behaviors due to separation issues from breast feeding. This she  gleaned form watching my son play with two round objects, and  crawl across the floor  in an attempt to retrieve  one that he accidentally dropped.  Following this Allen Woodyesque moment, and looking for some  useful advice, I called an old friend and former colleague from a state hospital  for the developmentally disabled in California.   She gave me the telephone number  for  the Autism Research Institute, the non-profit  founded by Dr.Bernard Rimland in 1967. Continue reading »