Kirkus Book Review: A Full Life with Autism

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence is my latest book co-authored with my son Jeremy (foreword by Temple Grandin) that was published on March 27 by Macmillan. The book has received many excellent reviews. Here is one by Kirkus Book Reviews, whose reviewers  are known as the world’s toughest book critics:

For readers already knowledgeable about autism and Asperger’s syndrome, a hands-on approach to transitioning into adulthood.

Sicile-Kira (41 Things to Know about Autism, 2010, etc.) and her autistic son, Jeremy, join forces in this guidebook to help parents and their autistic offspring move beyond childhood and evolve into an adult life. Although special-education services exist for children with autism spectrum disorder, once a child reaches adulthood the lack of adult services becomes apparent. As the mother of a severely autistic child, the author understands the needs of caregivers and children on the spectrum alike to shift to a quality of life that provides independence for all parties. “To create the future that you and your adult child envision will take perseverance and work,” she writes. “But good quality of life and peace of mind is worth it.” Based on her research, Sicile-Kira has compiled the majority of available resources into an accessible handbook that provides information on topics such as romantic and sexual relationships, finding appropriate living arrangements for true self-sufficiency and acquiring and keeping a job. The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and “top ten tips for parents,” written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum.

A proactive method for raising an adult child with special needs.

 -Kirkus  Book Review

Q & A Webinar: Temple Grandin, Chantal & Jeremy Sicile-Kira : A Full Life with Autism

Temple Grandin and Claire Danes

On Saturday, April 7 th from 8:00am PST to 9:30am PST (11:00am EST to 2:00am EST), Visiting Professor Temple Grandin will answer questions with Chantal Sicile-Kira  moderating. Then, for those who want to stick around,  from 9:45am PST to 11:15am PST (12:45pm EST to 2:15pm EST) Chantal and Jeremy Sicile-Kira will be answering questions in regards to their new book, A Full Life With Autism for which Temple wrote the foreword.

This is an opportunity to ask Temple Grandin questions, and get insight as to what is important for preparing our children for life as successful adults. Chantal and Jeremy will answer any questions you may have about raising a child with autism, and the transition to adulthood.  Register for our newsletter to sign up. (If you are already signed up, you will be receiving instructions shortly).

What questions do you have? Let us know, we’ll answer them!

Temple Grandin, PhD, is a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people.  Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world, and the subject of the Emmy award winning  HBO documentary, “Temple Grandin.” Temple is the author of many books including, The Way I See It, Developing Talents, and Animals in Translation.

Chantal and Jeremy Sicile-Kira

Jeremy Sicile-Kira was diagnosed severely autistic as well as mentally retarded when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation.   Jeremy  co-authored a book A Full Life with Autism ( Macmillan, March 2012) as a  guide for parents and educators helping those on the autism spectrum transition  into meaningful and independent lives.  Jeremy writes for  autism magazines, and his new website, www.JeremySicileKira.com.  He is one of three national Youth Advocates of the Autistic Global Initiative, a project of the Autism Research Institute. In 2007, Jeremy was highlighted on MTV’s documentary series True Life in the episode, “I Have Autism,” which won a 2007 Voice Award. Follow him on Twitter.

Chantal Sicile-Kira is an award-winning author, columnist, and autism advocate, as well as the founder of of AutismCollege.com which provides practical training  to parents and educators. Her latest book, is  A Full Life With Autism, co-authored with her son, Jeremy.  Their  story has been covered by a wide variety of media, including NPR, PBS, MTV, The Chicago Tribune, Newsweek, and Fox News.

 

Preparing Your Teen or Young Adult for Work in the Real World

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“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.

The Difficulties of Communicating

This post is written by our second guest blogger, Jeremy Sicile-Kira.  Jeremy wrote this for his college newspaper, the Chariot,  and it was  published in August 2011. You can read more of Jeremy’s writing on his new website (soon to be expanded) or follow him on twitter at @Jeremyisms.

Having autism has deterred me from communicating with neurotypicals. Neurotypicals are people not like me; people who have what are considered normal behaviors. Their sensory processing is functional  so they can see, hear and feel normally.  Because I have sensory processing challenges, I can’t feel or see the physical space I am in.  I can’t see and hear at the same time so I don’t look at people when I am listening to them. People may assume because of this that  I am not listening or not interested, but that is not the case. As well, I can get  overwhelmed in noisy environments because of  my sensitive  auditory processing challenges. For me calling a person on the phone is no  easy matter because  the ability to talk is not a strong  ability I have. This is due to motor challenges. It takes great muscle control to speak. While  autism affects my ability to speak it has not hindered my ability to think.

Being  nonverbal has it’s advantages. For example people will stop talking if you don’t respond which is great when you don’t feel like listening. At least I have a good excuse. Kidding aside, I have great technology and support staff to help me communicate. But by the time my poor finger has typed a response, often the conversation in a group setting has moved on.

Sometimes I dread being in public places. While many people are understanding, some  frankly act weird. Like those that treat me like a train wreck: they dreadfully watch but are frankly happy it’s not happening to them, this life of having a disability. Getting a lot of attention can be awesome for the autistic community in general, but sadly if you ask autism advocates most  will tell you that not all press is good press. The  reality  is that most of us  would rather be unnoticeable than be noticed just for our autism.

Although I have challenges that make it difficult to communicate, I am very interested in getting to know my fellow students. Bravely feel free to talk to me when you see me. Just be patient while waiting for a response.

Autism Life Skills: 10 Essential Abilities for Children with ASD

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

Jeremy’s Graduation Speech

Some people have written to me to say that Jeremy’s graduation speech is difficult for them to understand on the U-Tube video, so here is a transcript:

I have spent seven years at Torrey Pines High School.

Three years ago, I walked the graduation ceremony. Today I walk the same path, in the same cap and gown, but I have now earned my academic diploma.

My education at Torrey Pines has been my greatest achievement. I was once diagnosed autistic and severely retarded. When I arrived at Torrey Pines, I could not communicate and I spent my days in a class for the severely handicapped. Now I am going to college. I am writing a book about my life. I have become an inspiration nationally to many parents and educators of children with autism.

My story is like Helen Keller’s, the deaf, mute, and blind girl. Helen Keller had a teacher, Anne Sullivan, who taught her and took her out of isolation. My first great teacher was my mom, then the high school teachers.

My favorite story about Torrey Pines is when my teacher, Allan Gustafson, realized for the very first time that I understood everything. He was really trying to learn how to communicate with me. He said “Jeremy, I know you are in there somewhere. I can’t know what you are capable of unless you tell me.” I looked at him and saw tears in his eyes. I really wanted to make him happy. My nice teacher continued to try and reach me. He said, “Give me a sign.” I looked at him and spelled with him for the first time. Great teacher Allan was so happy.

The teachers here gave me good advice on more than just the subjects they taught. They understood that I might be different on the outside, but that on the inside I was just like any other student. Other important people include the ladies in the administration building who always said “hi” to me, and told me they were happy to see me. My speech teacher, Dr. Palmer, was nice, even if she tried to convince me to become a Republican. An exciting memory from this campus is when an MTV camera crew followed me around campus for the show, True Life: “I Have Autism”.

I would like to thank Bruce Cochrane, Director of Pupil Services, for the chance he took and the faith he had in me. I would like to thank the administrators, the school staff, the educators, (including Maureen and Janine), for allowing my voice to be heard. Without you, my life would still be imprisoned in darkness.

Nicely I wish I had made more friends from my years here. Being autistic, that is the hardest part. It is important to include all students in general education classes so they can be with their peers.

When Helen Keller grew up, she graduated from college, became an author, and an advocate for people with disabilities. I hope to do the same.

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.

 

NY National Autism Association Presentations

This summer Jeremy and I went to New York and presented to the local chapters of the National Autism Association in July 2010. Many wanted copies of the presentations we gave. The presentations are embedded below, after the break.  You may download each by clicking on the download option in the viewer. Please do not reprint without permission. Continue reading »

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.

SOLANA BEACH: Nonverbal autistic student to give commencement address

Torrey Pines’ Jeremy Sicile-Kira clears big hurdles on road to graduation

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.”