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Visitors to this site may notice I have not blogged here in a while. If you want to read more, visit AutismCollege.com – that’s where I post blogs now.
You may also wish to visit my son Jeremy’s blog site.
But please enjoy the the archives here, the information is still valid! Thanks for visiting!
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Click here to view an interview of Chantal in regards to her book on Fox TV in San Diego in March 2012.
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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.
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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.
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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
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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
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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
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“ I am frankly not acting nicely to new support staff.”
When it comes to autism, some things get easier and some things get harder as they get older. Neurotypicals at 23 can be ornery, and so can 23 year olds on the spectrum. Some things don’t change.
Although the transition to the teen years can be difficult; the transition to adulthood can be even more challenging. It’s a balance between giving them the freedom to make their own decisions, and providing the familiarity of structure they seem to need. Some days can be tough. On those days, I think of the British war poster given to me by a friend that I have hanging in my office.
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“Nicely, kindly I need u to teach me to do my own crap.”
Such was my son Jeremy’s response when I asked him recently in what ways we could best support him in moving towards being more independent and feeling ready for supported living. Just goes to show you that even when you are living with non-verbals you have to watch what you say. Not just in choosing your vocabulary, but also in what you complain about.
Jeremy has probably overhead me say more that a few times, “I’m so sick of this crap!” when looking at the piles of official paperwork that needs to be filled out, sent in, or filed. And the pile of stuff that just seems to accumulate everywhere if you don’t immediately recycle it or find another home for it.
So I’m not perfect (at least not when verbalizing at home). And Jeremy has been learning to do his own crap, just not enough of it. I guess we need to ante up his crap-load. Stay tuned!
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Someone I met recently commented that they noticed I had not posted a blog here since May 2011. I can’t believe it’s been that long but I’ve been busy co-authoring a book (yes, another autism book!).
But I’m back here today – because I woke up this morning from a really weird dream brought on by my daytime worries. Even if the dream involved Johnny Depp (more on the dream, later), obviously I am overwhelmed and stressed – probably like many of you reading this. And I wanted to share something I hope will be helpful.
After I woke up from my dream (and got over the initial excitement of having visited with Johnny Depp while still in my own bed) I decided enough was enough, and that I had to start walking the talk I give autism parents about taking care of themselves.
So I decided to follow the advice of Chris Brogan. I received an email describing how in the last few years Chris has skipped the tradition of creating New Year’s Resolutions (soon forgotten) and instead he creates three words that describe what he wants to focus on for the coming year. I thought that was a great idea and could help my stress level.
Here are my three words: (none of which are Johnny or Depp):
Produce: I have great ideas, and I follow through when there are clear-cut deadlines ( for a publisher or a speaking engagement), but my own professional projects (AutismCollege.com) and personal ones (exercise, develop my personal relationships, mentor my autistic son Jeremy in reaching his life goals) don’t get completed in a timely fashion. So this year, I will produce the projects I have identified as crucial and dear to my heart. Which takes me to my second word…
Flow: In order to have more time to produce, I need to eliminate distractions and clutter in all areas of my life. I’m interested in so many things and I easily get distracted so I am learning to have blinders like a racing horse does and focus on the finish line. Horses can still sense what they may not necessarily see, and I hope I have the same instincts when necessary.
Collaborate: Often I am so busy with outside deadlines that I don’t make the effort to spend time with people who I could effectively partner with to reach mutually beneficial professional and personal goals. This year, I will focus on collaborating with like-minded people who have similar goals.
Hopefully, what I’ve shared is helpful to you. However, I know most of you just want to hear about my dream involving Johnny Depp (rated PG). So here it is:
I dreamt I was visiting my daughter, Rebecca, who was staying with a musician friend, helping him break into the music business. (Rebecca is a volunteer DJ at the UC Davis radio station). Johnny Depp was staying there as well (big surprise!). While I’m there Johnny asks Rebecca to help him with the computer to hear an on-line training course that is discussing streams of income and sales funnels and handling your wealth. I am nervous meeting Johnny, so I try to make conversation about how Rebecca could use information like that because she is having such a tough time finding a part time job (reality) while at college, and could use money, and as I continue talking I realize that I sound like I am asking Johnny Depp for money and for a job for Rebecca, which I am not. I’m just having a bad case of foot in- mouth disease. I feel really stupid. Only my daughter was more embarrassed than I was. We climb into a small boat to reach the small stage where Rebecca’s musician friend is playing, and getting out of the boat I splash my husband’s best friend from New Jersey, and his wife and practically drown them. Embarrassment after embarrassment. You know the feeling.
That’s my dream. So this morning I woke up, wrote PRODUCE, FLOW, COLLABORATE on a piece of paper and put it on the dining room table (center of the house) and every time I do something now I ask if it fits in with my goals. I’ll keep you posted on how my three words work out.
What are you focusing on this year?
If you are still reading this far and you know Johnny Depp, tell him I’m not asking for money, but if he needs info on autism, tell him to check out my books and websites, and to call me if he has time for lunch. We could collaborate on something. Hopefully, his good looks won’t be too much of a distraction.
Best wishes to you and your family for 2012!
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