Autism College to present free live Q&A with author Tom Fields-Meyer

Autism College will present a free live Q & A on Monday, September 19, from 6:00 to 7:00pm PST with Tom Fields-Meyer, moderated by Chantal Sicile-Kira. Tom is the author of the recently published book: FOLLOWING EZRA: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, moderated by Chantal Sicile-Kira. Sign up for this webinar at the bottom of this post. The publisher has generously agreed to send a free copy of the book to one of the Q & A participants, so send in a question and you may get more than just an answer!   

About the book, from the Following Ezra website:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.

“For what?” he asked.

The answer: “For the child he didn’t turn out to be.”

That moment helped strengthen Tom’s resolve to do just the opposite: to celebrate the child Ezra was becoming, a singular boy with a fascinating and complex mind. Full of unexpected laughs, poignant moments and remarkable insights, Following Ezra is the riveting story of a father and son on a ten-year adventure, from Ezra’s diagnosis to the dawn of his adolescence. An engaging account of a father gradually uncovering layers of a puzzle, it rejoices in each new discovery and exults in the boy’s evolution from a remote toddler to an extraordinary young man, connected to the world in his own astounding ways.

Unlike other parenting memoirs, Following Ezra isn’t about a battle against a disease, nor is it a clinical account of searching for doctors, therapies or miracle diets. Instead, Fields-Meyer describes—with humor and tenderness—the wondrous, textured, and often surprising life one experiences in raising a unique child.

“This story will illuminate the experience of parenting a child with autism for those who don’t know it, and will resonate with those of us who know it all too well,” says novelist Cammie McGovern. “There are blessings along the way, and Tom Fields-Meyer depicts them beautifully.”

About the author, from  the  Following Ezra website:

Tom Fields-Meyer has been writing stories for popular audiences for nearly three decades, specializing in telling meaningful and worthwhile narratives with humanity, humor and grace. In twelve years as senior writer at People, he produced scores human-interest pieces and profiles of newsmakers. He penned articles on some of the biggest crime stories of the day (from the O.J. Simpson trial to the murder of Matthew Shepherd), profiled prominent politicians and world leaders (Nancy Pelosi, Pope John  Paul II, Sen. Ted Kennedy), and demonstrated a pitch-perfect touch writing tales of ordinary people overcoming life’s challenges in inspiring and compelling ways.

Tom also lends his skills to help others to put their compelling personal narratives into words. He teamed up with the late Eva Brown, a popular speaker at The Simon Wiesenthal Center’s Museum of Tolerance, to write Brown’s memoir, If You Save One Life: A Survivor’s Memoir (2007). Wiesenthal executive director Rabbi Marvin Hier called the book “very significant and meaningful…an everlasting and important legacy…and a reminder to future generations that championing tolerance, justice and social change are everyone’s obligation.”

Tom collaborated with Noah Alper, founder Noah’s Bagels, the successful West Coast chain, on Alper’s memoir: Business Mensch: Timeless Wisdom for Today’s Entrepreneur (2009). Publisher’s Weekly said: “This earnest book shines with Alper’s conviction, business savvy and decency.”

In September 2011, NAL/Penguin Books will publish Tom’s memoir, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Full of tender moments and unexpected humor, the book tells the story of a father and son on a ten-year journey from Ezra’s diagnosis to the dawn of his adolescence. It celebrates Ezra’s evolution from a remote toddler to an extraordinary young man, connected in his own remarkable ways to the world around him.

Tom previously worked as a news reporter and feature writer for the Dallas Morning News, where he covered the kinds of stories that happen only in Texas (shootouts in Country-Western dance halls, culture pieces on the State Fair) and once was dispatched to Nevada to investigate a road designated by AAA as “America’s loneliest highway.” As a senior editor at the Chronicle of Higher Education, he traveled the nation’s campuses and once convinced his editor to send him on a 10-day junket aboard a schooner in the Bahamas (an assignment he came to regret, not just because of seasickness). Tom’s writing has appeared in dozens of publications, including The New York Times Magazine, The Wall Street Journal, the Los Angeles Times and Esquire.

A graduate of Harvard University, Tom lives in Los Angeles with his wife, Rabbi Shawn Fields-Meyer, and their three sons.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here

 

Free Q & A on Back to School Tips with Dr. Peter Faustino, moderated by Chantal Sicile-Kira

By the end of the summer, most of us parents are happy to see summer end knowing our ASD children will have routine and a schedule back in their lives (and so will we).  But  we dread the stress related to the start of a new school year.  There are ways to lessen the stress and help prepare both your child and the teacher for a new and hopefully successful new school year.

Autism College hopes to help this year by offering you a two hour free Q & A with Visiting Professor, Dr. Peter Faustino, school psychologist, moderated by Chantal Sicile-Kira. Both Dr. Faustino and Chantal have written on the topic and are looking forward to answering your questions and giving you tips to prepare your child, yourself, and the teacher for the start of a successful new school year! Whether your child is fully included or in a special day class there are ways to prepare and alleviate some of the stress of the transition from summer to school, especially when there are teachers new to your child or teenager.

Join Dr. Faustino and Chantal on Monday, August 22, 2011 from 6:00 to 8:00pm PST on the topic : Tips for Reducing the  Back to School Stress for Children with Autism, Parents and Educators.

Dr. Peter Faustino has been working as a school psychologist for more than 12 years.  He is currently the President of the New York Association of School Psychologists (NYASP).  NYASP – the state affiliate of NASP (www.naspweb.org) – serves children, their families, and the school community by promoting psychological well-being, excellence in education, and sensitivity to diversity through best practices in school psychology.  Dr. Faustino joined the Bedford Central School District in 2003 to work at the Fox Lane Middle School. Dr. Faustino also maintains a private practice with the Developmental Assessment and Intervention Center (DAIC) in Bedford Hills, NY.  He presents frequently at national conferences, schools, and parent organizations.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here.

Back to School 101: Tips for General Education Teachers About Students with Asperger’s Syndrome

This was first published as a  blog post on my  Psychology Today blog on September 9, 2010, but the information is still still relevant today.

Often junior high and high school teachers have teenagers with Asperger’s Syndrome (AS) included in their classrooms, and are not given much in the way of useful information. Here I hope to provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.

Parents, you may wish to print this out to give to your child’s teacher, or send them the link. There are only a few tips here, but usually teachers are receptive so practical information that may help them to understand and reach their student.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

* It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel, meaning they have only one other processing channels (auditory or visual) working effectively at one time. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to be focused on the day’s lesson.

* The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”

* This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.

* Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.

* Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Summer Updates

Recently I have been neglecting Autism College because I’ve been busy writing book #5:  A Full Life With Autism: From Learning to Forming Relationships to Achieving Independence. This book, co-authored with my son, Jeremy, is all about creating a life for a young person with autism. It’s a practical guide – like all my other books- but is really driven by my son’s goals and dreams for his future. At 22, he has many of the same aspirations as any young man, and as his mom (read: biggest advocate) I feel it is my duty to help him create the life he wants to live.

Now that the manuscript is done, I can get back to Autism College; back  to creating a site with practical information and training you can use. First step: getting more articles in the free library (those will be in over the next few weeks) and creating some courses on autism and the teens years, plus the transition to adulthood. Doing the research to write A Full Life has given me lots of new information and tips, and I look forward to sharing them with you.

Meanwhile, Autism College will present a free live Q & A on Monday, August 22, 2011 from 6:00 to 8:00pm PST with Dr. Peter Faustino, school psychologist, which I will be moderating.  The topic will be “Tips for Reducing the Back to School Stress for Children with Autism, Parents and Educators.”

More information to follow soon!

What is sensory processing disorder, and how is it related to autism?

Although a sensory processing disorder is not considered a qualifying characteristic for a diagnosis of autism, I have yet to meet a  person on the autism spectrum who does not have a challenge in this area. In interviewing adults and teenagers of different ability levels for my book, Autism Life Skills (Penguin 2008), most of them stated sensory processing challenges as the number one difficulty for them, regardless of where they were on the spectrum.

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by  people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

For those interested in knowing more about auditory processing, Autism College will present a free live Q & A on the topic on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. You may sign up here.

Sensory processingmaking sense of the world – is what most adults conveyed to me as the most frustrating area they struggled  with as children, and this impacted every aspect of their lives – relationships, communication, self-awareness, safety and so on.  Babies and toddlers learn about the new world around them  by using their senses. At first they put everything in their mouths, they grab your finger with their little fists, then they start using their eyes to look at all those cute baby mobiles hanging over the crib. They learn to recognize the sound of their mother and father’s voices and  other noises.  They start putting meaning to what they are hearing and seeing. The lesser known senses that have to do with balance and body position (vestibular – where are heads and bodies are in relation to the earth’s surface;  and propioceptive -where a certain body part is and how it is moving) are also necessary in order to making meaning of the world around. 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 effect learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated  and far reaching than that. For example, Brian King, Ph.D, a licensed clinical social worker who has Asperger’s, explained 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.

Temple Grandin, Ph.D, (Thinking in Pictures, Animals in Translation) is an animal scientist, and successful livestock handling equipment designer. Temple designed and built a deep touch pressure device ‘squeeze machine’ when she was a teenager as she needed the deep pressure to overcome problems of oversensitivity to touch, and helped her cope with feelings of nervousness.

Donna Williams, Ph.D, bestselling author, artist, musician, 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 her bladder is full, or  if it means her stomach hurts because she is hungry.  Other adults mentioned that they share the same challenge especially when experiencing sensory overload in crowded noisy areas.  They shared that they set their  cell phones to ring every two hours, to  prompt them to use the restroom,  in order to  avoid a potentially embarrassing situation.

Many adults on the spectrum find it difficult to  tolerate social situations. Meeting a new person can be overwhelming –  a different voice, a different smell and a different visual stimulus – meaning that difficulties with social relationships are not  due to just  communication, but are about 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.

Many difficulties shared to varying degrees include:

  • Many  on the spectrum are mono-channel – meaning that they can only process one of their  senses at a time. This means that if they are listening and processing the information through their auditory sense, they cannot ‘see’  or process what they are looking at,  and vice versa.
  • Being overly sensitive to noise is a common feature. A baby or toddler may not respond to voices and other sounds or cover his ears every time there is a sound. Parents or the doctor may think the child is deaf and request hearing assessment. Other challenges include the inability to filter what is being heard so that if a person is speaking to them, they are unable to focus  just on the voice.  They hear all the background noise (ie, the hum of the refrigerator) at the same level as the voice.
  • Lights may be too bright to the point of being painful, especially fluorescent lights.  This effects the  visual processing of  what  they are looking at in that they may not see the whole picture, but pieces – kind of like some of the portraits painted by Picasso. A child may be looking intently at a book cover, but actually only ‘seeing’ the tiny little flower in the grass and not the whole scene of the farmhouse setting.
  • The feel of anything on the skin may be irritating to the point that it feels like sandpaper to some. Clothing and tags and socks and shoes can be unbearable for some; others may be able only to tolerate loose clothing made of really soft cotton. For some, brushing up against another person in the street or school hallways can be excruciating.
  • A heightened sense of smell can be a problem for some. Smelling something unpleasant and strong with no knowledge of what it is or where it is coming from can be very scary.
  • Overactive taste buds or underactive taste buds can create challenges in getting a child to eat. Add to that  the inability to tolerate certain foods because of the sensitivity to texture in their mouths, and you can imagine why many on the spectrum start out as picky eaters.
  • Many children on the spectrum have  challenges  in coordination and motor planning  tasks in one area or another, such as tying their shoes, or playing sports.
  • When there are too many sensory challenges at once, the person can  experience sensory overload, resulting in a behavioral meltdown. For some this may mean running away to escape for others, for others a tantrum, and still other extreme rocking and self- stimulatory behavior.
  • Many see the detail, but have a hard time seeing the whole. First example, they may see the eyes, nose and mouth like a Picasso painting, but not see the whole face.
  • Some may crave spinning and / or rocking,   the vestibular system that has to do with balance.
  • Some adults report that they do not have awareness of where they are in space and need to look constantly at the ground  in front of them to keep their balance even when walking.
  • Adults have described how many of the problems they face such as social relationships to be in large part due to sensory processing.

 

 

Tips on getting your child with autism the right education

As described in a earlier post,  your child has the right to a free and appropriate education under The Individuals with Disabilities Education Act  (IDEA) and you must learn to advocate for your child.  Following are some tips in regards to ensuring that your child gets the educational help he or she needs:

  • Know what your child’s educational needs are.
  • Learn about the educational strategies that work the best for students that resemble yours on the autism spectrum.
  • Learn what you can about your local school district. School districts vary depending upon the administrators in charge and how they are funded. What do parents and professionals  in your area have to say about the different  districts?
  • In some geographical areas there are knowledgeable educational consultants who can help. Try to find one experienced  with the level of autism your child has by asking knowledgeable parents in your area if they have used one.
  • Get to know the different school options in your area. What  do parents and professionals  have to say about the different classes and school sites?
  • Learn about IDEA and “No Child Left Behind” and what the parent’s duties as well as what the school’s duties are in terms of the education of children.
  • Visit different types of classrooms and different school before making a decision regarding your child’s educational program.
  • Develop and maintain good relationships with school staff, educators and other professionals there to help your child, as well as in the community.
  • Keep good records of any phone calls, meetings, conversations about your child.
  • Keep good records of all assessments and IEP’s.
  • Do not be afraid to ask questions, and do not feel intimidated by the professionals. Remember you are the expert on your child.
  • Monitor your child’s progress and educational program.
  • Keep focused on your goal – a free and appropriate education for your child.

Remember, an informed parent is the best advocate for your child! Read more in my book, Autism Spectrum Disorders. Tips on how to communicate and negotiate more effectively with your school will be given in the course Empowerment Strategies for the ASD Parent.

Making sure your child with autism gets a good education at school

A good education is important to helping a child to develop and learn. In the United States we are very fortunate to have The Individuals with Disabilities Education Act (IDEA). If your child has an autism spectrum disorder and needs special education, you will need to become familiar with the rights your child has under (IDEA).

Since 1975, IDEA  requires  that  all individuals  have access to a ‘free and appropriate education (FAPE).’ IDEA is a federal act, and  each state may not take away the special education rights provided under IDEA, but may provide more.

Basically, every child  under the age of three and at risk of developing a substantial disability if early interventions are not provided is eligible for early intervention. The names of the different programs my vary by state, but  you can check with  your state’s Department of Health, Department of Developmental Disability, or Department of Education about early intervention. If you need help finding help or information in your area, look at the website of the Federal Interagency Coordinating Council (www.fed-icc.org).

In the educational system, if a student is eligible, an Individualized Education Program (IEP) is developed that  sets out the ways the child will be helped with his areas of difficulties, and  goals and objectives are developed. The IEP is developed by an IEP team at IEP’s that take place at least annually.

An IEP team consists of the parents, the child’s teacher, a general education teacher, a special education administrator, any professionals providing services such as occupational therapy,  speech and language therapy, and adapted physical education.

Sometimes, some members of the IEP team and / or the parents may not be in agreement as to how a child’s educational needs should be  met, and what constitutes a ‘free and appropriate education’ for your child. As a parent, it is important to get to know how your child learns. Remember that you are the expert on your child. Also, it is important to keep abreast of the educational methods that are out there that may help your child.

If you are in disagreement with the rest of the IEP team, there are appropriate ways for you to express your disagreement. The first step is to try and have good and open communication with your child’s teacher and other professionals involved in helping your child with his difficulties. The second is to make sure you know your child’s rights under IDEA. As a parent you will need to become an advocate for your child.

As laws and regulations change, parents and educators can  stay informed   by  checking the US Department  of Education (www.ed.gov) and your state department of education.

Most, if not all, states have an agency that helps people with disabilities and tells you your rights in plain language, and provides information in different languages.  To find out how your state interprets IDEA, These are usually called Protection and Advocacy offices. Often these agencies have decoded the complicated IDEA and made it available on-line in easy to understand layman terms so that parents can understand the rights their children have in terms of education.

In my next post, I’ll cover some autism parenting tips to ensure your child is getting the education he or she needs. You can also read more in my book, Autism Spectrum Disorders. Tips on how to communicate and negotiate more effectively with your school will be given in the course  Empowerment Strategies for the ASD Parent on Thursdays May 5,12,19,26, from 6:00 – 8:00 PM PST.

Welcome to Autism College

Welcome to Autism College! We are excited that after months of planning we are finally going live.  The idea for Autism College came about because I realized there were many parents and educators who did not have access to conferences either because they lived in rural areas, or they  did not have access to respite workers to care for their children,  or the cost of traveling to conferences was prohibitive. We thought having valuable and practical information available on line provided in an interactive format would be beneficial to those families and educators. As well, I receive  so many  emails asking for information and advice that I could no longer continue to answer – it only made sense to provide a format to help people get the answers they need to help them move forward in a positive way.

Some of you may have heard me speak at conferences, or on my past Autism One radio show, or even when I moderated webinars for momsfightingautism.com. If so, I look forward to interacting with you here!  For those who are not familiar with my presentations, I think you’ll enjoy the practical autism parenting tips I love to share.

Looking forward to interacting with  you in class !

~Chantal Sicile-Kira
Founder, Autism College

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.