Why We do What We Do

Some days I wonder why I do what I do, and  at times Jeremy wonders if all the time and energy it takes him to write is worth it. So we are always happy to receive emails like the one below, from a dad, who is referring to our book A Full life with Autism.

“I am the parent of a 34 year old woman with high functioning autism.  I have started to read a number of books on ASD over the years and usually stopped – feeling overwhelmed @ about page 30.  But my daughter has sat alone in her room long enough.  Thanks particularly to Jeremy’s comments in the book and Chantal’s understanding and good explanation – I think we can do this.  I am buying the book for self and two adult siblings so we as a family as well as our daughter can begin to understand some steps to finally stop our avoidance and begin to develop a life of independence and quality for her.  THANK YOU!”


Autism and Employment: What are some barriers you or a loved one have encountered?

Do you have a story to share about yourself, or a loved one, or a student you know on the autism spectrum who is having a hard time finding or keeping a job?  What are the challenges to getting and  staying employed you have experienced?

My son, Jeremy, is writing a paper on the barriers to employment for someone with autism including Asperger’s Syndrome. He is looking for more personal stories to illustrate his paper.  Please, could you share your experience  by writing it in a comment to this blog?  You may stay anonymous if you wish.

In A Full Life with Autism, we wrote about employment among other topics and shared some practical and empowering advice from different sources.  Here, Jeremy is researching more about the barriers people have encountered.

Please leave your  stories, and pass this along to others who may have an experience to share.

Thank you for taking the time, and Jeremy will  write a blog here when the paper is finished.

The Golden Hat : Q & A with Margret D. Ericsdottir moderated by Chantal Sicile-Kira

The Golden Hat

Why did  Kate Winslet ask  over 100 celebrity friends including  Oprah, George Clooney, Rosie O’Donnell, Tom Hanks, Kobe Bryant and Leonardo DiCaprio,  be photographed wearing a Golden Hat for a book that includes photos of eleven non-verbal youngsters with autism wearing the same hat?

What are the long term goals of the Golden Hat Foundation?  What goals do you have for your youth’s future? What are your child’s long term goals?

Join the conversation on May 14 about creating  A Full Life with Autism when  Margret Dagmar Ericsdottir, President & CEO of the Golden Hat Foundation joins Moderator Chantal Sicile-Kira  to discuss  these topics.  The  one hour Q & A  on Monday May  14, 2012 will take place from 6:00 pm – 7:00 pm PST  (9:00 pm to 10:00 pm EST). Sign up for the Autism College newsletter to receive instructions on how to participate and send in your questions. Instructions will be sent via newsletter before the Q & A  takes place. (Already registered? Hold tight, the participation link will arrive soon).

The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

Kate Winslet and Margret D. Ericsdottir

Guest: Margret D. Ericsdottir is the President & CEO of the  The Golden Hat Foundation; Founder Frontier Filmworks; Co-Author, The Golden Hat: Talking Back to Autism; Advocate for Individuals with Autism; Mother of Keli, 14-year-old with nonverbal autism.  Margret Dagmar Ericsdottir, MBA, had a successful career in business and held various executive positions in Icelandic companies. Then, in 1997 Margret’s youngest son Keli was born and diagnosed as having severe autism at the age of four. The sudden and profound changes in her family prompted Margret to shift her focus from career-related pursuits to caring for Keli. In 2006 Margret founded Frontier Filmworks, and made the documentary, A Mother’s Courage: Talking Back to Autism, which describes her family’s journey.

The  award-winning actress, Kate Winslet, narrated the documentary, and subsequently co-authored The Golden Hat: Talking Back to Autism, in which celebrities and some non-verbal individuals with autism are photographed wearing a “golden” hat.

Moderator:  Chantal Sicile-Kira is the founder of Autism College, author of five books on autism. Her latest book A Full Life with Autism, was co-authored with her son, Jeremy Sicile-Kira whose photograph appears in The Golden Hat.

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

Questions from a Dad re Transition Services. Any Thoughts?

Here’s a few questions from a reader of  A Full Life With Autism.  Anyone wish to answer or comment? Please do so in comment section below.

Dear Chantal,
I have just begun reading your new book, A Full Life with Autism and am really appreciating all of the information that you have given.
My daughter is 19 years old and has Asperger’s syndrome.
We live in Eugene Oregon.
She is in a program that teaches living skills and work experience which has been excellent thus far.
She has only 1 more year after this one.
From what I was told, in Oregon, high school goes until 21.
She graduated from regular high school at 19 and this is the post education program.
You mentioned in your book that there are some states that offer educational services beyond 21.
Is there anyway that I can contest what the law has in effect for her in Oregon?
I feel that it would be so helpful if she could have at least one more year beyond next year before she heads into employment and life in general.
Also, I was wondering what states do provide services that go beyond 21?
Thank you and much appreciation for writing a book such as this for us parents and our children.

Expressing Gratitude

Melissa Crothers, Shapar Ostovar, Steve Crothers, Chantal

Recently I had a discussion with my family doctor about keeping good mental health in general for all types of people (college students, parents) and  she mentioned the usual items : regular exercise, good diet, and plenty of sleep. But then she mentioned another item that research shows is important to good mental health : having gratitude. Each day spending a few minutes acknowledging what you are grateful for, can improve your mental health. Interesting concept, right?

I know there are days when that “gratitude list” seems pretty short. For some the list consists of being thankful they got through a day of  not having to  call  the doctor,  or being grateful that the respite worker showed up so they could leave the house to do the shopping.  But really, every day there is something to be grateful for, and our children (on and off the spectrum) can learn to focus everyday for a few minutes on what they have to be grateful for – it could improve their mental health.

Right now, I would like to express gratitude about all the people over the years who have shown interest in my son, or who have helped him become the person he is today.  Many of these people were at the Poseidon Restaurant in Del Mar on Monday night to help celebrate the release of Jeremy’s first book, A Full Life With Autism. We are grateful to be surrounded by such wonderful people and to be part of this local community. I’ll be posting more photos as time goes on; I’ve put a few here.

So tell me, what can you express gratitude  for today?

Dr. Carl Hillier's Team

Join the Conversation – A Full Life With Autism

Jeremy and I wrote A Full Life With Autism in order to empower families. We hope that our experience – from the point of view of both a  young man reaching adulthood, and  a parent helping to prepare him for the future – will help you think about all your child needs – no matter his age- to prepare for the adult years down the road.

We’ve also highlighted the experiences of others,what organizations are doing to help prepare a brighter future, and what life skills a person needs to be successful as an adult.

We’ll be writing here often and we hope that you will join the conversation about creating a full life with autism. Your comments, questions and suggestions are most welcome here.

If you’ve read any of my books and articles, or Jeremy’s, then you know about us. Tell us your story. You are not alone, and we want to hear from you!

It takes a village to raise a child, and a community to make an enjoyable life.

Together, we can make a difference. Join the conversation!

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.