Wednesday, June 1, 2011

The Good Times Contest Winner

Marie Trempe: Devoted Mother, Autism Education Trailblazer

Tony Attwood, author of The Complete Guide to Asperger’s Syndrome, believed that individuals with Asperger’s represent “bright threads on the rich tapestry of life.” Applying these bright threads to tapestries can result in works of art that stand out from the rest; however, properly applying these threads is not an easy task, and failure to stitch these threads effectively can result in tapestries that are either unfinished or lack the artistic creativity to stand out.

When a bright thread presented itself to Marie Trempe, a married mother of two from LaCrosse, Florida, she not only found a way to create a rich tapestry, but found a way to share her secrets with others.

When I first met Marie, I was a master’s student at the University of Florida pursuing my degree in Mass Communications. She posted a message on Craigslist requesting volunteers to assist with her son, Narottam’s, recovery from autism using the Son-Rise program. Barry and Samahira Kaufman started this program as a way to help their son, Raun, recover from his autism diagnosis; it encourages its practitioners to focus on interaction with the children rather than their disability.

However, as I soon observed, the Son-Rise program only provided a skeleton for Marie’s mission; other parts to Narottam’s developmental program came from a deft mixture of parental devotion and fierce persistence.

These qualities were immediately apparent when Marie and I met at Starbucks to discuss my volunteering responsibilities. I was immediately bombarded with questions that focused less on my actual qualifications and more on my innate qualities, such as how I acted around children and how patient I considered myself. It was also at this moment that I grasped the complete picture and learned about the obstacles that she had to overcome in dealing with Narottam’s development.

In addition to being autistic, Narottam had developed Opsoclonus myoclonus syndrome, a rare autoimmune disorder that caused his immune system to attack his tumor and then his brain. This would result in Narottam losing his speech and motor skills. It is not a well-known syndrome in the medical community; in fact, it affects fewer than 1 in 10,000,000 people per year. This rare disorder made it especially difficult for Marie to locate a suitable medical specialist to care for her son, and it led her to realize that she would have to take the lead concerning her son’s health. Therefore, she initiated her own program, which included eating gluten free/casein free foods, ingesting ayuervedic herbs and adopting crainosacral therapy to help with his digestion.

Marie also took the lead when applying Narottam’s Son-Rise program; she did this by setting up volunteer interviews and appointments as well as setting up scheduled goals for Narottam’s development. Monthly meetings would then occur at her house to analyze and discuss these goals. In addition, Marie also made sure that volunteers tracked their time with Narottam through Relate to Autism, an organization dedicated to the development and success of autistic children.

 “You really are on your own in this process,” she said. “However, I am lucky in that I live in a supportive community. Also, I am the type of mother that never takes no for an answer.”

This persistence resulted in a calmer, more flexible child, one that is more willing to engage with his environment. This emboldened Marie with a new understanding of the learning potential in autistic children.

Her desire to see this potential realized in other kids, coupled with her latent determination and persistence, led to her starting a school for autistic children, known as Autism Oasis for Kids. This school, established in March 2010, is located in High Springs, Florida. It adopts the same approaches with its students that Marie applies to her son: a methodology that focuses on the needs of the children rather than their limitations.

Parents of students attending Autism Oasis for Kids have praised its role in helping their children develop. Anisha and Al Jackson from Alachua County, Florida, observed their son Alonzo has increased willingness to sing, dance and communicate. Anisha adds that he even calls her “mommy” and calls his grandmother “gwamma,” interactions that previously had been impossible.

As the school nears its first year of existence, Marie is hoping for Autism Oasis for Kids to expand, adding other programs such as a petting zoo, gardens and horses for hippotherapy. She also wants to include facilities that will help parents of autistic children, such as education and training on the nuances of autism.

“If you want to help a child with autism, help the parents. Forget them, and you forget the whole picture,” Marie said.

Autism Oasis for Kids is a testament of Marie’s willingness to share the secrets of her rich tapestry with others. When reflecting on her proudest moments with the school, she refers to her success in allowing children with autism to participate on a journey free of judgment from others and limitations placed on their abilities.

A journey that would not have been possible had it not been for the brave steps that she took forward for her son.

Jason Townsend-Rogers

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