Attitude is Key

July 25, 2018

Rebecca and Jeremy Sicile-Kira, high school graduation, June 2010

 

“Tell him every day that you love him, and that you know he is smart.”

This is what Jeremy, my then 21-year-old son, responded to a mother asking for his advice. She wrote to Jeremy, telling him she had a non-verbal 12-year-old, and she was worried about what he was thinking and how he was feeling. She wanted to know what she could do for him until he was able to communicate his thoughts.

Reading Jeremy’s response brought back memories. Every night for many years, while tucking Jeremy into bed, I would tell him those two important facts.  I never realized the positive impact repeating those words to him every night would have on his self-esteem. I just told him how I felt, just as I would tell his sister, Rebecca.

Jeremy is now 29, and communicates mainly by typing or points to letters on a letter board.  Despite his challenges, Jeremy graduated 8 years ago from high school with a full academic diploma (watch his  commencement speech). Jeremy’s success is no miracle; rather it is a story of hard work and commitment on the part of many people. The one who has worked the hardest is Jeremy. My goal for him was to reach his potential – whatever that was – and to be able to communicate with those around him.  Since graduation, Jeremy has co-authored the book  A Full Life with Autism (Macmillan) and is a gifted artist.

When Jeremy was little, we lived in France and in the UK. We had no early intervention; we had very little help or encouragement from the powers that be. Basically, I was on my own and I had to figure out how to help him. At first I just read to Jeremy and showed him pictures and tried whatever I could to reach him; then I tried different methods I heard about that made sense for him. But I always presumed competence and spoke to him as if he understood everything. I was convinced he did.

For the past 15 years  Jeremy has been able to  type and communicate about his life and what he experienced as a child, what  autism felt like to him, and in what ways the different therapies helped (or didn’t).   I have found out more about what was really helpful to him. Some of his comments are very specific, others are general such as this:

My mom saved me from a life of despair. Her attitude is the key to my success. She made me feel like I could be a success no matter my challenges. Basically, if it was not for my nice mom and great teachers, my life would not be worth living. They believed in me and that has made the biggest impact—more than the type of teaching methods used.

As parents and educators, we spend a lot of time talking about educational methods, but not much about attitude. Yet, when I interviewed people on different parts of the spectrum for my third book, Autism Life Skills, they, like Jeremy, often discussed the importance of their parents’ attitude to their success. Daniel Tammet, author of Born on a Blue Day, has this to say about his parents:

In spite of all my many problems, they loved me unconditionally and devoted themselves to helping me – little by little, day by day. They are my heroes.

The message is clear. Yes, we need the right educational environment for our children. And unfortunately, many children on the spectrum do not get much positive feedback at school or in the community on a regular basis. But if you are a parent, take heart in knowing that your child’s self-esteem benefits greatly from your loving and positive attitude. Knowing his parents are there for him, that they believe in him and in his ability to learn, can make a world of difference to a child’s state of mind.

Transition Planning: At Times Funny, But Always Real

October 31, 2013
I cherish this flower

I cherish this flower

Recently I was invited to speak in Sarnia, Canada – which is across the border from Detroit.  The conference organized by the Jumpstart Lambton Kent Teen Transition committee was entitled “Clarity, Please!” and was about the transition to adulthood.  They launched a new website  which has lots of relevant information and will make it easier for families and teens with special needs to  find the help they need. As well, there is a partnership with Ability Online, a free monitored, supportive, online community for kids, teens and young adults of all abilities.

I love presenting at different conferences around the planet as it gives me the opportunity to hear the experiences of different families, organizations, and the young adults who are on a mission to create the life they dream of.  I presented on Autism Life Skills  and A Full Life with Autism – information that is valid for any person with a developmental disability.  At “Clarity Please!” There was a panel of young adults and their families who talked about their transition to adulthood and how that was going. Although all the stories were different, there were some traits that all the families shared. These were:

  • the parents were strong advocates
  • they raised their children to have good self esteem
  • they made connections in the community
  • they partnered with helpful agencies
  • the young adults had learned to be advocates for themselves
  • they encouraged their  young adult to work towards creating the life they dreamed of, even if it was different from what the parents had imagined for their adult child.
Karen Holland and David Schaller of Pathways Health Centre

Karen Holland and David Schaller of Pathways Health Centre

At each conference there are always some touching and funny moments. My most embarrassing moment at the conference was when I mistook  the mayor of Sarnia and a member of parliament (who were sitting at the presenter’s table with me) as upcoming members on the family panel. I thought it was funny when   Dave Schaller, Manager of Family and Community Services at Pathways Health Centre for Children recapped the day saying my talk was “at times funny but always real.” That’s how I feel about trying to access services for my son, Jeremy!

The most touching moment for me was at the end of the day.  A father walked over and gave me a flower –  fashioned from pipe cleaners that had been placed on each table along with other fidget items. “Here,” he said “My son made this for you.”  Instances like this make the traveling to share information all worthwhile.

What You Need to Know about Seizures and Autism

August 15, 2013

Silently Seizing I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it  on Psychology Today).

This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.

Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.

An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.

Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!

 

Practical Training on Adolescence and Autism for Parents and Educators

July 14, 2013

Teenager:autism.001

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how, what and when to explain puberty to your growing child?  Are you wondering what an ITP is and how to best prepare your child or student for adult life?  Or do you just think his or her autism is getting worse? Then  this  three-part series taking place on Tuesday evenings September 10, 17, 24; at 6:00 pm – 8:00 pm  PST  (9:00 pm to 11:00pm EST) is for you. This on-line series, will be available from the comfort of your own home (no matter where you live).

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this three-part interactive series on  Adolescents on the Autism Spectrum costs $99 and  includes:

  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • 6 hours of training
  • PowerPoints provided before the live training to help with note taking.
  • BONUS: Opportunity to watch replay of training at a later date (convenient if you miss a session).
  • BONUS: Opportunity to take part in Google+ hangout discussion with Chantal following the series.

Here’s what some past participants have to say about this online course:

“This was so informative. Thank you so much for sharing your knowledge and experiences. I’m looking forward to hopefully meeting with you in the near future.” – Danielle (educator)

“I just have to say that I’ve attended your classes before and I always leave with great information.”  Rachel (parent)

“This is really informative and has just given me lots of things to think about and do.”  Linda (parent)

 “ I’m really enjoying these classes. They’ve been very informative. Thank you.” – Erika (parent)

To attend this class, register here.

September 10: Adolescence 101: The Teen Basics : Everything you need to know (but don’t know who to ask)

Topics to be covered include:

  • 13 things every parent or educator needs to know about teenagers;
  • The general challenges faced by ASD teenagers;
  • Sensory processing challenges in adolescence;
  • Functional strategies to help with daily transitions;
  • Family and sibling concerns;
  • Teaching about puberty, hygiene, self-care, masturbation.

 September 17: Adolescence 102: Relationships: It’s Complicated

Topics to be covered include:

  • The notion of privacy and consent;
  • Relationship boundaries;
  • Introduction to sexuality;
  • Self awareness;
  • Self- regulation;
  • Bullying,
  • Interdependence.

September 24: Adolescence 103: The Transition Years : Plan, Prepare, Practice for  the Real World of Adult Life

Topics to be covered include:

  • Preparing the transition to high school;
  • the ITP- Individual Transition Program and IEPs;
  • Teaching life skills needed for work and / or college including:
  • Self-esteem; Self-advocacy; Executive functioning, Self-reliance;
  • Building on strengths and the use of mentors.

The cost is $99.  To register, go here.

The teen years

The teen years

Resources on Autism and Puberty, Hygiene, Sexuality, Bullying, Abuse

October 23, 2012

In early October I was invited by the Family Resource Network in Oneonta, New York to present for six hours  on  A Full Life with Autism: Preparing for the Real World.  It was a pleasure to meet everyone there and I promised to post some resources here in regards to puberty, hygiene and sexuality. I have added a few in regards to bullying and abuse as well.

For those unfamiliar with my book on adolescence, there are many resources listed in it on a variety of topics. You might find it useful as a general guide: Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, And Transition Needs of Teenagers With Autism Spectrum Disorders (Penguin).

Please read descriptions of the following books on-line so you can decide which of the books would be appropriate for your tween, teen or students.

  • Autism – Asperger’s and Sexuality:  Puberty and  Beyond, by Jerry and Mary Newport
  • A 5 Is Against the Law! Social Boundaries: Straight Up! An honest guide for teens and young adults
  • Taking Care of Myself  – A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel
  • The Girl’s Guide to Growing Up
  • The Guide to Dating for teenagers with Asperger Syndrome
  • Intimate Relationships and Sexual Health

 

Here are some resources in regards to bullying and abuse:

Hope you find these resources useful!

 

Praise for A Full Life with Autism

May 20, 2012

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

May 13, 2012

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

May 9, 2012

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

May 5, 2012

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

Kirkus Book Review: A Full Life with Autism

April 17, 2012

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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