Praise for A Full Life with Autism

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Review of A Full Life with Autism by Dr. Joshua Feder

This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.

It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.

Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of.  Jeremy states: “I have oftentimes been the victim of ignorance.”  We must not be party to what Jeremy has suffered.  We need to be humble and helpful, persistently curious and ever respectful.  We cannot presume to know what we do not.  We must take the time to get to know the hopes and dreams of people whom we do not yet understand.

I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships.  How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving.  To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going  – what is working, what isn’t, and what to do to try next to understand the situation better and try something different.

In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.

Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders

Carmel Valley woman devoted to autism education

10 Questions

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

Grad with autism earns long-awaited diploma

Published in the The Coast News
by Lillian Cox

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.