Books that Touch

Thomas Balsamo captures moments in time, on black-and-white film. Sharon Rosenbloom describes those moments in words.

Together, the Wauconda photographer and South Barrington writer have created an extraordinary work of art with a purpose: a book that educates and inspires the public about an often-misunderstood disorder.

“Souls, Beneath and Beyond Autism” is a collection of hauntingly beautiful photographs and essays that take an honest journey through autism and the feelings of parents and family members who are affected by it.

Photos from the book will be on display beginning next week at the Barrington Area Arts Council’s gallery.

Disorder differs
Autism is a complex developmental disorder that affects more than one in 250 live births, and is often characterized by repetitive ritualistic behaviors such as rocking or hand waving, and problems with communication or social interactions.

The degree, severity and behavioral manifestations of autism can vary from person to person as much as personalities vary. Though mental retardation sometimes accompanies autism, many children with the disorder are extremely bright and do well in school. Some may display exceptional talent in art, music, or math.

“It’s a celebration of love and family. The work is just remarkable,” said Corrine Pierog, executive director of the Barrington Area Arts Council.

When Pierog saw Balsamo’s work on the book, she immediately asked him if she could exhibit it.

“Souls” speaks to its readers — in photos and words — of an almost-universal journey that parents with autistic children may experience.

According to the book, parents with children who have autism often feel overwhelmed with despair — until they realize what is possible. Feelings of hope, joy and triumph can emerge again.

The one constant in all of the mixed emotions surrounding a diagnosis of autism is a parent’s overwhelming love for the child.

The book’s greater purpose, Rosenbloom writes, is that “from the depths of darkness, often we find the greatest enlightenment.”

Seeds of ‘Souls’
The genesis of “Souls” was a seemingly casual comment that Rosenbloom made to Balsamo three years ago.

Rosenbloom had taken her son, Joey, to be photographed at Balsamo’s portrait studio in Barrington.

Balsamo noticed the passion and insight Rosenbloom showed when she spoke about Joey and how to connect with children who have autism.

As a speech pathologist, Rosenbloom had discovered that some of the techniques she used in working with brain injury patients also worked with Joey, who has been diagnosed with a higher form of autism.

“Someday, I’ll write a book,” she said offhandedly.

Balsamo thought about her comment for a few months and began to believe that he had been called to help Rosenbloom get her message out. He wrote up a plan and met her at Starbucks.

“Our office was always Starbucks,” laughed Rosenbloom, who accepted the proposal under one condition: that they let the project take them wherever it may lead.

Rosenbloom agreed to write the book but, she said, “I wanted it to be their voice, not mine.”

Balsamo’s work has appeared in exhibits at the Smithsonian museum, and he had done portrait work for Rosenbloom many times before. He has clients around the world, some of whom have flown in from Singapore to have their portraits taken.

‘Magical experience’
According to Balsamo, the “Souls” project was off to a smooth start, but after a while it stalled.
They had run out of children to photograph, and they weren’t sure how they would get published, so Balsamo printed cards with images and information about the book. He gave them to all of his clients, asking for help.

His clients circulated the cards. He trusted that help would arrive, and it did.

“It’s been a magical experience,” said Balsamo.

Magic came in the form of the Beytien family of Naperville, who called to have their three children photographed for the book.

Alison is an autism activist, and her husband, Craig, is a vice president at a publishing company. The Beytiens’ three boys have been diagnosed with varying degrees of autism.

Could any family in the world have been more appropriate for this project or have arrived at a more perfect time than when they had?

“Everything we needed showed up exactly when we needed it,” Balsamo said.

Outspoken advocate
As the assistant project director of the Illinois Autism Project, a federally funded program that is supervised by the Illinois State Board of Education, Alison Beytien is an outspoken advocate for people who have been diagnosed with autism and their families.

She speaks at national conferences and educates parents and families about autism. Her husband is vice president of e-market development at McGraw-Hill publishing company, which agreed to distribute the book.

Craig Beytien advised Balsamo and Rosenbloom to aim high.

While working on “Souls” Balsamo formed two related organizations: Books That Touch, the book’s publishing company, and Ray of Hope, a charitable organization that will donate the books to libraries and other organizations.

“It’s not just a book about autism. It’s a book about life,” Balsamo said. “It is a book for everybody.”

Autism is a disorder that is often misunderstood. Both Rosenbloom and Beytien speak passionately about not dehumanizing individuals who have autism.

“They are not just a diagnosis. They are people,” Beytien said. “When we talk about someone with cancer, we don’t say they are cancerous.”

When one of Beytien’s sons was first diagnosed with autism, a child psychiatrist advised her to grieve over the loss of her child and plan for his institutionalization because “children with autism never speak.”

“It’s not that they don’t connect. They just show it differently,” said Beytien, who would not accept the psychiatrist’s point of view and kept making phone calls and educating herself to better understand the disorder and her child.

“What if I hadn’t gotten furious and said, ‘No way’?” she wondered. What if she’d had no expectations for her son?

Years later, her son is living proof that the psychiatrist was wrong. He functions at a very high level, and though he sometimes struggles to understand sarcasm and jokes, he talks all the time and communicates very well.

“I could put him on the phone with you,” she said.

According to Rosenbloom, another common misconception is that many think that people with autism do not like being touched.

“Saying they don’t like to touch people is like saying people in wheelchairs don’t like to walk,” she said.

Rather, she said, they may have heightened senses at certain times and can get overwhelmed by noise, sound, or touch.

One person with autism who addresses Rosenbloom as “Mrs. Joey’s Mom” confided to her that being touched when his senses are on overload “feels like sunburn and someone slaps you.”

Captured moments
In each photo, Rosenbloom commented, she saw a realness and a bittersweet expression on the faces of the parents. The moments that are captured on film are “a mix of relief, joy and a small flicker of pain,” she said. And yet, some of those moments can be purely magical.

“My goal is to create books that help people see from a different vantage point. In life, we get caught up in the menial, the day-to-day stuff, but there is a bigger picture. If we are thankful for that, the quality of our lives might improve,” Balsamo said.

Balsamo is planning more projects with Rosenbloom and her husband, a surgeon. The books will focus on other journeys. One will be about people who have cancer, and another will be about aging.

“I love capturing the essence of people,” Balsamo said, “and I feel so fortunate to be doing what I do.”

Books are for sale at Portraits by Thomas, 557 N. Hough St., Barrington, or can be ordered at www.booksthattouch.com. For more information about the Illinois Autism Project, see www.illinoisautismproject.org. Photos from the book will be on display Jan. 17-Feb. 28 at the Barrington Area Arts Council, 207 Park Ave., Barrington. The opening reception is 7-9 p.m. Jan. 17. Call (847) 382-5626 for details.



		Seeing ‘Souls’ Pioneer Press BY MARGO SCHAFER Thomas Balsamo captures moments in time, on black-and-white film. Sharon Rosenbloom describes those moments in words. Together, the Wauconda photographer and South Barrington writer have created an extraordinary work of art with a purpose: a book that educates and inspires the public about an often-misunderstood disorder. “Souls, Beneath and Beyond Autism” is a collection of hauntingly beautiful photographs and essays that take an honest journey through autism and the feelings of parents and family members who are affected by it. Photos from the book will be on display beginning next week at the Barrington Area Arts Council’s gallery. Disorder differs Autism is a complex developmental disorder that affects more than one in 250 live births, and is often characterized by repetitive ritualistic behaviors such as rocking or hand waving, and problems with communication or social interactions. The degree, severity and behavioral manifestations of autism can vary from person to person as much as personalities vary. Though mental retardation sometimes accompanies autism, many children with the disorder are extremely bright and do well in school. Some may display exceptional talent in art, music, or math. “It’s a celebration of love and family. The work is just remarkable,” said Corrine Pierog, executive director of the Barrington Area Arts Council. When Pierog saw Balsamo’s work on the book, she immediately asked him if she could exhibit it. “Souls” speaks to its readers — in photos and words — of an almost-universal journey that parents with autistic children may experience. According to the book, parents with children who have autism often feel overwhelmed with despair — until they realize what is possible. Feelings of hope, joy and triumph can emerge again. The one constant in all of the mixed emotions surrounding a diagnosis of autism is a parent’s overwhelming love for the child. The book’s greater purpose, Rosenbloom writes, is that “from the depths of darkness, often we find the greatest enlightenment.” Seeds of ‘Souls’ The genesis of “Souls” was a seemingly casual comment that Rosenbloom made to Balsamo three years ago. Rosenbloom had taken her son, Joey, to be photographed at Balsamo’s portrait studio in Barrington. Balsamo noticed the passion and insight Rosenbloom showed when she spoke about Joey and how to connect with children who have autism. As a speech pathologist, Rosenbloom had discovered that some of the techniques she used in working with brain injury patients also worked with Joey, who has been diagnosed with a higher form of autism. “Someday, I’ll write a book,” she said offhandedly. Balsamo thought about her comment for a few months and began to believe that he had been called to help Rosenbloom get her message out. He wrote up a plan and met her at Starbucks. “Our office was always Starbucks,” laughed Rosenbloom, who accepted the proposal under one condition: that they let the project take them wherever it may lead. Rosenbloom agreed to write the book but, she said, “I wanted it to be their voice, not mine.” Balsamo’s work has appeared in exhibits at the Smithsonian museum, and he had done portrait work for Rosenbloom many times before. He has clients around the world, some of whom have flown in from Singapore to have their portraits taken. ‘Magical experience’ According to Balsamo, the “Souls” project was off to a smooth start, but after a while it stalled. They had run out of children to photograph, and they weren’t sure how they would get published, so Balsamo printed cards with images and information about the book. He gave them to all of his clients, asking for help. His clients circulated the cards. He trusted that help would arrive, and it did. “It’s been a magical experience,” said Balsamo. Magic came in the form of the Beytien family of Naperville, who called to have their three children photographed for the book. Alison is an autism activist, and her husband, Craig, is a vice president at a publishing company. The Beytiens’ three boys have been diagnosed with varying degrees of autism. Could any family in the world have been more appropriate for this project or have arrived at a more perfect time than when they had? “Everything we needed showed up exactly when we needed it,” Balsamo said. Outspoken advocate As the assistant project director of the Illinois Autism Project, a federally funded program that is supervised by the Illinois State Board of Education, Alison Beytien is an outspoken advocate for people who have been diagnosed with autism and their families. She speaks at national conferences and educates parents and families about autism. Her husband is vice president of e-market development at McGraw-Hill publishing company, which agreed to distribute the book. Craig Beytien advised Balsamo and Rosenbloom to aim high. While working on “Souls” Balsamo formed two related organizations: Books That Touch, the book’s publishing company, and Ray of Hope, a charitable organization that will donate the books to libraries and other organizations. “It’s not just a book about autism. It’s a book about life,” Balsamo said. “It is a book for everybody.” Autism is a disorder that is often misunderstood. Both Rosenbloom and Beytien speak passionately about not dehumanizing individuals who have autism. “They are not just a diagnosis. They are people,” Beytien said. “When we talk about someone with cancer, we don’t say they are cancerous.” When one of Beytien’s sons was first diagnosed with autism, a child psychiatrist advised her to grieve over the loss of her child and plan for his institutionalization because “children with autism never speak.” “It’s not that they don’t connect. They just show it differently,” said Beytien, who would not accept the psychiatrist’s point of view and kept making phone calls and educating herself to better understand the disorder and her child. “What if I hadn’t gotten furious and said, ‘No way’?” she wondered. What if she’d had no expectations for her son? Years later, her son is living proof that the psychiatrist was wrong. He functions at a very high level, and though he sometimes struggles to understand sarcasm and jokes, he talks all the time and communicates very well. “I could put him on the phone with you,” she said. According to Rosenbloom, another common misconception is that many think that people with autism do not like being touched. “Saying they don’t like to touch people is like saying people in wheelchairs don’t like to walk,” she said. Rather, she said, they may have heightened senses at certain times and can get overwhelmed by noise, sound, or touch. One person with autism who addresses Rosenbloom as “Mrs. Joey’s Mom” confided to her that being touched when his senses are on overload “feels like sunburn and someone slaps you.” Captured moments In each photo, Rosenbloom commented, she saw a realness and a bittersweet expression on the faces of the parents. The moments that are captured on film are “a mix of relief, joy and a small flicker of pain,” she said. And yet, some of those moments can be purely magical. “My goal is to create books that help people see from a different vantage point. In life, we get caught up in the menial, the day-to-day stuff, but there is a bigger picture. If we are thankful for that, the quality of our lives might improve,” Balsamo said. Balsamo is planning more projects with Rosenbloom and her husband, a surgeon. The books will focus on other journeys. One will be about people who have cancer, and another will be about aging. “I love capturing the essence of people,” Balsamo said, “and I feel so fortunate to be doing what I do.” Books are for sale at Portraits by Thomas, 557 N. Hough St., Barrington, or can be ordered at www.booksthattouch.com. For more information about the Illinois Autism Project, see www.illinoisautismproject.org. Photos from the book will be on display Jan. 17-Feb. 28 at the Barrington Area Arts Council, 207 Park Ave., Barrington. The opening reception is 7-9 p.m. Jan. 17. Call (847) 382-5626 for details.