Published in Carmel Valley News, Del Mar Times  December 16, 2010

Carmel Valley woman devoted to autism education

Carmel Valley resident Chantal Sicile-Kira is dedicated to educating others about autism, a passion that has driven her to author several books on the topic. She began working with autistic adolescents more than 20 years ago, helping them prepare for their de-institutionalization. Little did she know that several years later that experience would prove invaluable when her son was born and eventually diagnosed with autism in Paris, France, where the only treatment offered was psychoanalysis. Her search for appropriate care led her family to England, and then the U.S.

Her son Jeremy, severely impacted by autism, graduated from Torrey Pines High School in June 2010 with a full academic diploma and currently attends Mira Costa College. Her daughter Rebecca graduated from Canyon Crest Academy in June 2010, as well, and attends UC Davis. Sicile-Kira is currently writing her fifth book to be published in April 2012 by Macmillan, and is preparing to launch an online resource: AutismCollege.com.

1. What brought you to this neighborhood?

My husband was brought over by Lego from the UK to help project manage the construction of Legoland. We chose Carmel Valley for its excellent schools, nearness to the beach, closeness to the airport and to downtown San Diego.

2. What makes this community special to you?

The people, and closeness to the ocean.

3. If you could snap your fingers and have it done, what might you add or subtract to improve the area?

I would add more variety in terms of the architecture in Carmel Valley.

4. Who or what inspires you?

My son, Jeremy, and all those like him. It is really difficult for them to do many of the ordinary, everyday things we take for granted. As well, my daughter Rebecca, and all the autism siblings out there. It’s not easy for them growing up 24/7 in a home impacted by autism.

5. If you hosted a dinner party for eight, whom (living or deceased) would you invite?

I would invite the President and Michelle Obama, Stephen Spielberg, Tim Ferriss, Bill Gates, Steve Jobs, Oprah Winfrey, Jamie Oliver, and I’d like to squeeze in Arianna Huffington as well.

6. Tell us what you are currently reading.

The Neighbors are Watching, which takes place in Carmel Valley; The 4-Hour Work Week, and Age of Autism.

7. What is your most prized possession?

I’d say my family, but you can’t possess people, so I’ll have to say my iPhone. It can help me out, entertain me and inform me wherever I am. It can also take messages so I can disconnect from real life whenever I like.

8. What do you do for fun?

Read, travel, walk Torrey Pines or the beach, cook and dine with friends, watch movies, and exercise.

9. Please describe your greatest accomplishment.

Raising my two children to be the best that they can be, and writing four practical books on autism. I often get emails from parents telling me how much my books have helped them when their children were first diagnosed, or when they are going through a rough patch. There is no better feeling than knowing you have helped someone with information they need in order to feel empowered to move forward in a positive direction.

10. What is your motto or philosophy of life?

“What is important is not what happens to us, but how we respond to what happens to us.” — Jean-Paul Sartre

Jeremy graduated from high school with a GPA of 3.75 on June 18, 2010.
He auditioned for, and was chosen to give  a commencement speech.

DEL MAR — Among 632 seniors graduating from Torrey Pines High School on June 18, no one could be happier than Jeremy Sicile-Kira. And this isn’t the first time Jeremy has walked with his graduating class.

Three years ago Jeremy, who is severely autistic, completed the functional life skills track at Torrey Pines. For his efforts, he walked through the ceremony but he did not receive a diploma.

In the fall he proceeded to an off-campus transition program to learn living and job skills.

“He didn’t do well,” said his mother, Chantal Sicile-Kira. “He was noncompliant and didn’t want to do anything. He was bored.”

Jeremy was educated through a combination of home schooling by his mother and special education that included taking mainstream classes at Torrey Pines in marketing, economics, social sciences and psychology.

Because he was unable to speak, Chantal Sicile-Kira taught Jeremy how to communicate using applied behavior analysis. The technique involves a laminated, paper keyboard, which Jeremy uses to spell words by pointing.

Frustrated that Jeremy was doing poorly in the transition program, Chantal Sicile-Kira spoke with Bruce Cochrane, executive director of pupil services at the San Dieguito Union High School District.

“Bruce said, ‘Why didn’t you have him go for his diploma?” she said.

Chantal Sicile-Kira learned that in order to graduate with an academic diploma, Jeremy first needed to pass a high school exit exam and earn credit in required subjects.

“The school looked at Jeremy’s transcripts,” she said. “Since he was allowed to be in the educational system until the age of 22, he had enough time to earn credit if he took two classes a semester.”

Another thing that worked in Jeremy’s favor was that students are given six chances to pass the California exit exam.

“We thought we’d have him take the test and use it as a baseline,” she said. “He passed it the first time.”

This fall Jeremy will start college the same time as his younger sister Rebecca, who graduates from Canyon Crest Academy on June 18. She is entering UC Davis as a freshman.

Jeremy will embark on a degree in journalism

or communications at MiraCosta College. This semester he got a head start by completing a course in intercultural communications.

Jeremy is already a published writer. He’s written a column titled “Life As I See It” in the school newspaper. In April he published an editorial in the North County Times. Currently he’s working on a book about his life.

In addition, he collaborates with his mother, who is an award-winning author, speaker, and president of Autism Making A Difference, Inc.

A few years ago Jeremy was featured in MTV’s documentary series “True Life,” for the episode titled “I Have Autism.”

Since then he has become a popular speaker who offers these words of advice to the graduating class of 2010 in a speech he’ll be delivering this afternoon.

“My real message to you today is: Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.

“Parents, believe in your children and encourage them to fulfill their dreams.

“Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.”

Chantal Sicile-Kira has always believed in her son’s potential, even when she was advised to “find a good institution for Jeremy” when he was growing up.

“He is heading to a good institution now,” she said. “It’s called ‘college.’”

This summer Jeremy was invited to address the Staten Island and Manhattan chapters of the National Autism Association. He has secured a donation of $500 for travel costs for his mother and him but needs an additional $300. To make a donation or to contact Jeremy, e-mail jsicilekira@yahoo.com.

Chantal Sicile-Kira has just released a new book, “41 Things to Know About Autism.” For more information visit chantalsicile-kira.com.

Published on the front page of The North County Times

By CHRISTINA LOPEZ

Most people would consider scaling Mount Everest or winning a Nobel Peace Prize an impressive feat, but Jeremy Sicile-Kira —- who was diagnosed at age 3 with severe autism —- is scaling heights that are equally impressive.

On Friday, the 21-year-old is set to become the first nonverbal autistic student to receive a full academic diploma from Torrey Pines High School, San Dieguito Union School District officials said.

He will also give the school’s commencement address, which has been prerecorded using a computer voice generator that translated his typed speech into an audio file burned onto a CD.

Sicile-Kira communicates by using what is known as Rapid Prompting Method, a system that requires intense focus and participation by aides or other caregivers to keep him on task.

In Sicile-Kira’s case, his mother, Chantal, and aides use prompts —- snapping their fingers or pointing at familiar objects —- as they ask questions.

He then points with one finger to a letter board or keyboard to spell out his answers.

“My mom tells me that no one is better than anyone else,” Sicile-Kira said in an interview last week, using his laminated keyboard, and assisted by his mother. “We know that we should try our best.”

Autism is a range of complex neurological disorders characterized by social impairment, communication difficulties and repetitive behavior patterns, according to the National Institutes of Health.

Many people with autism are diagnosed as toddlers. In severe cases, children with autism appear to be locked in their own worlds, unable to communicate.

Chantal Sicile-Kira said her son began showing signs of autism when he was 9 months old.

“He didn’t move. He didn’t develop right away,” she said. “I had to fight to find out about Jeremy’s condition.”

In the years since, she said, her son has gone through home schooling, special education and many different therapies, but couldn’t spell out words until he was 14 years old and began learning RPM.

“I really believe in the impossible,” she said.

At Friday’s commencement ceremony, Sicile-Kira —- decked out in cap and gown —- will deliver his speech to 619 fellow graduates.

His sister, Rebecca, 18, is graduating earlier Friday from Canyon Crest Academy and will be in the audience during the 4 p.m. Torrey Pines ceremony.

“The staff and the students know him so well —- they’ll be encouraging him,” she said about her brother’s participation in the event. “I think people will be proud of him when he delivers the speech.”

Bruce Cochrane, executive director of student services for the San Dieguito Union High School District, has worked with Sicile-Kira for the past three years and is just one of the many people who helped him reach this goal.

“Jeremy is an incredible young man,” Cochrane said. “I think as he has matured, his skills and talent have flourished. (He) has been able to communicate at a greater level and really show people his intelligence.”

Sicile-Kira is able to earn his diploma under a state law that gives special education students until age 22 to do so.

He completed the necessary course work and passed the California Exit Exam on his first try.

Sicile-Kira’s mother said she never believed the naysayers who told her when the boy was young that he would have few options in life.

“Once they diagnosed him, I was told to find him a good institution,” she said. “And I have —- it’s called college.”

In the fall, Sicile-Kira will enroll at MiraCosta College in Oceanside, with an interest in journalism; he hopes to write for the college newspaper.

Until then, his summer plans include financing a two-week trip to New York City. He also plans to publish his first book and establish an online newsletter geared toward helping families understand children with disabilities such as autism.

“I think I greatly inspire others by my ability to continue to learn and not give up on my dreams,” he said.

An author, speaker and autism expert, Chantal Sicile-Kira is working on her fourth book on autism and says she has learned much from her son in the years since his diagnosis.

“We raised him to never feel sorry for himself,” Chantal Sicile-Kira said. “He’s a big inspiration to me. He has taught me patience and has actually made me into a stronger person.”

The message Sicile-Kira wants to convey to the class of 2010 is to focus on a goal and never give up on yourself.

“When I first arrived, I had no way to communicate,” he said. “But over the years, I learned how to spell, and my life changed from one of loneliness to one of having great teachers and an education.”

Inspirational autistic TPHS student graduates, will deliver a commencement speech

By Karen Billing

Jeremy Sicile-Kira is autistic and cannot speak, but that does not mean he has nothing to say. After seven years at Torrey Pines High School, he has earned his high school diploma and will deliver a commencement speech to his classmates through voice-assisted technology at the June 18 graduation ceremony.

“I am nervous but very touched that I am giving a speech,” said Jeremy, using a letter board to spell out his words. “I want to tell them never give up on your dreams.”

To graduate high school Jeremy, 21, has taken units in mainstream general education classes as well as in his severely handicapped classes with Allen Gustafson, whom Jeremy said is the “best teacher.” He does all the same work as his regular education peers, he just gets more time to do it. He passed his California High School Exit Exam on the first try and will attend MiraCosta College in the fall to study communications.

Next week he will graduate on the same day as his sister, Rebecca, a senior at Canyon Crest Academy.

“I was pretty amazed,” said proud mom Chantal, who never even expected it would be possible for Jeremy to earn his diploma, let alone with a 3.5 GPA.

Along the autism spectrum, every child’s symptoms are different. Although Jeremy can say a few words, he has never been able to speak. In a speech written for an autism conference, Jeremy explained how his autism affected his vision, hearing and motor skills.

He said he had to learn how to hear, how to know which noise to pay attention to and distinguish when someone was speaking to him. He had to learn how to focus to be able to see.

“If I don’t concentrate, the world seems surreal,” Jeremy said.

He encourages fellow autistic children to be patient with treatment and learning methods and to learn to read because “when you can read the world is yours.” He tells them not to worry about what they look like when they are “stimming,” a method of using repetitive motion to keep focused. It is more important to be present than to worry about what other people see, he said.

Jeremy needs support and help from his family and teachers to accomplish schoolwork, but he has never needed to be motivated to learn. He thinks knowledge is important; he loves math even though it is challenging to have to spell out how to solve each problem and he especially loves to write.

“My mom is really nice because she made me realize I could learn,” Jeremy said.

Gustafson, Jeremy’s teacher for four years, turned to Jeremy’s mother Chantal to find out what she was doing at home that could help in the classroom.

“I just kept on giving him words of encouragement and kept on sticking to the plan,” said Gustafston, who left Torrey Pines in 2008 for Eastlake High.

He said sometimes there were hard days, sometimes the methods worked and sometimes they didn’t. But Jeremy wanted to learn as much as possible.

“It was great for him to believe in himself and that education is a value and something to work at…He wanted to show people he wasn’t dumb, that he knew just as much as the person sitting next to him in high school.

“I’m immensely proud of him,” Gustafson said.

Jeremy stresses there is hope in autism, but that nothing will matter if the person doesn’t believe in themselves.

Spreading his inspiring message of hope was only possible after Jeremy found his voice.

To communicate, Jeremy uses a litewriter. He types in sentences and the machine verbalizes his words for him. Scattered throughout the house and in his backpack for school are letter boards which Jeremy uses to spell out words to his family and friends.

To present his commencement speech he will use his laptop’s TextAloud software which takes his writing and converts it into speech—he uses the same program to speak at schools and conventions.

Jeremy has really only been able to communicate with his classmates for the last two years with the litewriter and he said it has changed his life. Before, he has said he felt like he was “imprisoned in darkness.” Now he has friends and like any high school student, swaps messages on Facebook.

The friendships he was able to make were very meaningful and he said what he will miss most about Torrey Pines is “the way I was accepted by everyone.”

Jeremy’s message to others is always to follow their dreams and he’s already accomplished one of his dreams: to earn his diploma. His second big dream is “to make money.”

As he loves to write, he is working on getting a book published and wants to start an online newsletter to “create awareness and answer questions” on autism. To make a living, he will look for sponsors and advertisers on his site and is working on getting more speaking engagements to share his words.

Most of Jeremy’s writings always lead toward the inspirational and one of his personal heroes is Helen Keller.

“When Helen Keller grew up she graduated from college, became an author and an advocate for people with disabilities,” he wrote. “I hope to follow in her footsteps.”

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

by Jackie Johnson on February 5, 2010

in Children & Families,Health & Medicine

A medical journal this week retracted a study it published in 1998, saying indications of a link between the MMR vaccination and autism were false. Autism author Chantal Sicile-Kira reacts to that retraction, saying it’s kind of a setback and a disappointment, but it doesn’t answer any questions.  Sicile-Kira says the back-pedaling highlights the fact that more studies and research needs to be done to find out what causes autism. She first looked at this issue very closely when she wrote her first book, Autism Spectrum Disorders, which won the outstanding literary award from the Autism Society of America in 2005, at which time she says there were relatively few people talking about the connection between vaccines and autism.The autism expert, parent of an autistic child, and author is in the Milwaukee area presenting a workshop on what to expect during an autistic child’s adolescence.

NOTE: The session will be from 9 a.m. to 3 p.m. Friday at Country Springs Hotel Conference Center, 2810 Golf Road, Waukesha.

NOTE: Chantal Sicile-Kira has a book coming out “41 Things About Autism” in March-April 2010 that will answer the most common questions that people ask her about autism and having a child with autism. She’s also promoting a new biographical HBO movie about her close friend Temple Grandin, who is a very popular autism activist, who also has the disease.