Autistic speaker shares journey at NCL

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Working as a team Malva Tarasewicz and her son Benjamin have worked hard all of his life, developing a plan that helps children, students and adults develop techniques to help them adapt to the difficulties they have with communication and interaction. Both of them will speak at the NCL library on May 4, at 7 p.m.

 

Barbara Lawlor, Nederland.  When Benjamin Tarasewicz was born in 1994, he was a happy, energetic, sweet baby and for the first year of his life fulfilled the standard growth and development expectations. His mother Malva, a professional violinist, looked forward to teaching him how to play the instrument as well as being involved with all the aspects of his life. The future was bright.

Soon after his first birthday, she noticed that his eye contact with her, with everyone, was waning and her happy baby boy seemed depressed, seemed to be withdrawing from her physically and emotionally.

“He seemed lost in a fog,” says Malva. “He had just begun to speak and then he began to only scream when trying to express himself. I didn’t know what to do.”

Benjamin started to present strange, agitated body movements and then he became obsessed with spinning objects and stacking items on top of each other.

Malva discussed her concerns with a girlfriend who said that Benjamin was exhibiting classic signs of autism. She immediately began reading everything there was to read about the disorder that was slowly stealing her child from her. Autism is defined as a complex neurobehavioral disorder that includes impairment in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors.

She learned that there is no known cause or cure, but research has shown that there are ways to help an autistic child learn how adapt the social and communicative skills that most children learn from observing and mimicking.

In January, Benjamin, now 21, graduated from Fairview High School. He has become a renowned speaker and advocate for understanding autism as well as an inspiration for teaching empathy and diversity in our schools.

For the past 18 years, Malva has been a 24/7 teacher, guiding her son into the world of interaction and communication. Every step of the way endless practice, tedious repetition and miniscule milestones have brought Benjamin to the threshold of adulthood. Now mother and son are sharing their journey in an attempt to increase awareness of the disorder and to aid other families in helping their children to find successful ways to be part of a community.

On Wednesday, May 4, at 7 p.m. Malva and Benjamin will speak about autism and how they have worked to achieve their success in dealing with the symptoms. Malva will also speak about her book “Benjamin Breaking Barriers: Autism–A Journey of Hope. The book has become a valuable autism resource for parents and professionals, filled with inspiring, creative ideas for knowing what is possible and how to get there.

Temple Grandin, the author of “The Autistic Brain,” says that she liked the way Benjamin was “stretched” by his mother to achieve new things, that too many kids on the autism spectrum are over protected.

Malva says that once she got a handle on the research, once she had a word to work with, she initiated the steps that would bring her boy back to her.

“I am a doer and the research gave me hope. Although it is not common, there are kids who have recovered from Autism, who have grown out of it with therapy. I became the therapist, a stay at mom, 100 percent available to my child.”

Insurance did not cover speech therapy for a child with psychological disabilities at that point. It is now covered. Benjamin began stimulation thereby, a technique to get the brain to compensate for its faulty wiring. She began her vocation as a teacher to make an impact, to stimulating Benjamin’s mind to grow.

The book, “Let Me Hear Your Voice,” offered her a detailed index of how to teach language, how to help him dress himself. How to make up their own games. It was an all day long regimen of therapy guiding the oral and brain connection to the mouth. For long periods of time nothing would happen and then there would be a small breakthrough, which was actually huge to Malva.

“He was nearly three and we had this cute little bird whistle that you had to blow to make a sound. One day he blew it accidentally and I could see the neurons clicking. He had learned to do things with his mouth, string sounds together and soon he had his first word. We work on teeny things, putting together the pieces like a puzzle, from the ground up. And now he is a public speaker.”

Benjamin began to recognize letters in elementary school and he could read a bit. Malva discovered that he was unusually intelligent but still unsocial. She says although he would be affectionate with her, he liked to snuggle, he didn’t like being touched by others. She knew he could feel her love through physical bonding.

When Benjamin was about three years old, Malva did what she knew best, she taught him how to play the violin. He knew how to play Bach Concertos, and was an accomplished violinist when he was in kindergarten. His passion for music brought him to the stage and when he was in middle school, he became involved with the theater. Malva had started him reciting poetry to improve his language skills and she found that a great segue into theater social life. It was a way for him to create dialogs, to become familiar with social conventions.

Benjamin had to memorize basic conversations, like learning a second language, “Hello, how do you do?” with daily repetition. Theater helped him deal with other people and learn to convey emotions. Malva says that it doesn’t work to tell him to find the emotion from within, he has to learn the facial expressions associated with sadness, happiness and so forth.

“We worked on this for years. He even earned a leading role in high school. Most people would not be willing to do this, to become his success person.  He learned movements that were fairly natural looking and appropriate. He became a star and earned a lot of applause and admiration. He discovered he loved being on stage and has a charisma when he’s in the spotlight. He doesn’t get nervous. All of his adrenalin is focused on the performance.”

The first time Benjamin spoke in public about Autism was in middle school, when he gave a presentation to his health class about living with Autism.

During high school, at the onset of puberty, Benjamin began experiencing some forms of OCD and Turret’s Syndrome. He was hit full on and it became hard for him to function as he had. He was fragile. Everything his mom and he had accomplished seemed to be shattered.

Malva says she realized that there was only so far they could go together, that she had been doing it all and it was time for him to move forward with what he had.

Graduating with pride Benjamin Tarasewicz graduated from Fairview HIgh school this year and is now speaking to schools and communities about how he has learned to adapt his autistic communication disabilities into a chance to create understanding in the community. His family has a cabin in Eldora and he will be speaking at the Nederland Community Library on May 4. It will be a great opportunity to meet an accomplished speaker who advocates for understanding the disorder.
Graduating with pride
Benjamin Tarasewicz graduated from Fairview HIgh school this year and is now speaking to schools and communities about how he has learned to adapt his autistic communication disabilities into a chance to create understanding in the community. His family has a cabin in Eldora and he will be speaking at the Nederland Community Library on May 4. It will be a great opportunity to meet an accomplished speaker who advocates for understanding the disorder.

“I realized we had to begin to look at who Benjamin is, not who he would become. We had a shift in outlook and could only pray his frailty was not permanent.”

 

A consultation with a psychiatrist revealed that Benjamin was going through a suicidal phase, that he was being tortured by his own brain chemistry. He described the feeling like being in a lion ‘s den and being attacked by the lion, or like a woodpecker was drilling in his brain. Malva says he was in extreme anguish. He had to withdraw from the theater after climbing a steep path of improvement, but Malva, being the doer that she is, came up with the idea of creating a formal presentation for Benjamin, putting himself in the context of himself, based on the idea that it is okay to show and talk about autism on the stage.

“We thought that we would let him do who he is, take the performance pressure off of him, let him play himself.”

His first presentation during high school was a part of a diversity day program. When he took the stage, the place was packed with people who came to hear him speak. At that time, he had been plagued with tics and a hand washing compulsion, but when he took the stage, four years ago, in 2012, all of his stage experience came back to him. He knew what to do, he was incredibly confident and received a standing ovation.

Since then he has spoken about Autism at high school, colleges, and was on TED Talk last year.
Malva’s family has owned a cabin in Eldora for decades and Benjamin has been coming to Nederland since he was little, to ride the Carousel of Happiness. Eldora has become the family’s second home and they come here often to escape.

“I wanted Benjamin to give his presentation to the Nederland community. He just graduated from Fairview High School and now is learning about life skills. He plays the violin with a Boulder Philharmonic quartet and has discovered a new talent: singing.”

Malva says Benjamin has been blessed to have the support that allows him to be sensory-friendly and accepting of his environment.

On Memorial Day, Benjamin will sing with an acapella quartet in the world premiere of a choral group based on autism at Manhattan Middle School.

Benjamin looks forward to being in Nederland because he hopes to see his friends in the Eldora neighborhood, especially Mark and Laura Fisher, who let him pick vegetables in their yard.

“I hope they come,” he says.

Malva says she is eager to share their story with the Nederland community.

Barbara Lawlor

Barbara is a reporter for The Mountain-Ear.