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 »

Back to School : how to prepare your teen for a new school year

It’s that time of the year again – school is starting up again soon, along with our hopes and expectations for a positive learning experience for our teens. Some maybe returning to the same school; others may be moving from middle school up to high school, or changing from high school to a transition program; others may only be changing classrooms or teachers. Whatever the situation, any type of transition or change can be stressful for a teen on the spectrum. The start of a new school year can also be stressful for parents and teachers.

I first posted this article on the Examiner.com last August (2009), but it is still useful information so I am reposting now.

On August 15th,2009, I presented at the annual “Back to School”  Autism / Asperger conference in Pasadena and had the opportunity to refresh my memory on some good readiness skills for the start of the new school year. A2Z Educational Advocates based in Pacific Palisades had some good tips to share in a “Back to School Guide” they were handing out. Following are some tips from both the “Back to School Guide” and from my book Adolescents on the Autism Spectrum to help the transition go smoothly for your teen or student:

  • If  your student is moving to a new school or classroom, take photos or videos of the new environment, including the areas he/she will be walking through. If possible, take the teen to the new location before school starts and practice walking around the empty campus. Have him /her notice some visual landmarks he/she  will be able to see when the campus is full of students, and explain to him/her how to use these as points of references when walking from one place to another.
  • Prime your teen by talking to him/her  about the upcoming school year, the teacher and expectations, as well as any fears or concerns your teen has. Creating a photo album together or writing social stories can be very helpful. Even if your teen does not have good communication skills or is non-verbal, he/she can  learn to  understand and make the connection, so it is worth the effort to take the extra time to do this. Going over the appropriate behaviors and social interaction for the school environment can also be helpful. Many students find having a set of ‘rules’  for school behavior helpful. Focus on the positive!
  • Help your teen get organized to prepare for the school year.
  1. Use color-coded folders to organize the work for the different classes.
  2. Get a planner for your teen. Many schools have a homework planner, and your teen can use this to keep track of homework assignments. Show him/her  how to write his assignments in the planner and reinforce him/her  for doing so through out the school year.
  3. Designate a spot in your teen’s backpack for forms, notes and so on that come home from school, and make sure your teen and the school staff know where that is.
  4. If your teen is fully included in a school that follows block scheduling such as in some North San Diego County high schools (one day is periods 1,3,5; the next day is periods 2,4,6) you may wish to consider having two separate backpacks for the two different block days days.
  5. If your teen needs assistance to organize himself and stay organized (as mentioned above), his / her IEP may need to include accommodations, strategies, and goals related to learning these skills. Being able to get and stay organized is an important life skill everyone needs to learn

In my next column, tips on how to make the transition back to school easier for parents and teachers will be discussed.

Liberté, égalité, fraternité – Happy Bastille Day!

In honor of Bastille Day, I am posting my Huffington Post piece on Autism and Education in France published on June 14, 2010 (one month ago).   France is moving slowly, but at least forward, to have Liberté, égalité, fraternité for children and adults  with autism in France.

French flag - le bleu, blanc, rouge

Photo from www.freefoto.com

Recently I was invited to Paris to present at a prestigious international colloquium on autism and education, which was organized by the INS HEA, the French Ministry of Education’s training institute for special education teachers. Seventeen years earlier, I had left France because in those days, children with autism did not have the right to an education, and my son, Jeremy, was severely impacted by autism.

It was an emotional moment for me, standing there, addressing 500 attendees in a lecture hall of the Universite Paris Descatres in Bolulogne – Billancourt, explaining my son’s educational experience in the United States, where all children have the right to a free and appropriate education under IDEA.

In 1993, my family left France, where we had been living since 1981. Both Jeremy and his sister, Rebecca (who is neurotypical), were born in Paris at the time when children with autism were considered mentally ill, not developmentally disabled. They had no right to an education. Instead, they were enrolled in day programs on hospital sites, where they were treated with psychoanalysis. Parents had no right to visit the day program, nor did they receive any communication about what went on during the hours their child spent there.

When Jeremy showed autistic tendencies, I was told by the powers that be to take him to see a psychoanalyst. The psychoanalyst concluded that Jeremy was autistic because he suffered separation issues from breast-feeding. This the analyst gleaned from watching him spin round objects (which reminded him of his mother’s breasts) and chase after one that he had “lost” when it fell and rolled under a piece of furniture.

The French genetic specialist who handed me my son’s diagnosis, also handed me some advice. She told me to look for and find a good institution for Jeremy. I have — it’s called public school. On June 18th, both Jeremy and Rebecca will be graduating from high school. Jeremy will have taken seven years to do so, in comparison to Rebecca’s four. I am equally proud of both of them.

I am not sharing this information to knock the French; I have heard similar stories in the UK and in the US: Parents seeking help were often blamed for their child’s autism and were given no hope and no answers. The big difference however, is that back then there were no French laws allowing children with autism to be educated; and now there are.

Yes, the laws have changed in France, and now things are beginning to move slowly but surely. Not fast enough for all the families in need of an education for their child, but at least it is moving forward.

During the two day colloquium, there were presentations by teachers and other educators, parents, principals from different schools and different regions of France, sharing their successful experiences of how they were educating students with autism in their schools and classrooms. It was wonderful to hear the passion these people shared. We also heard presenters from Italy, Belgium, Sweden, Canada and Brazil. It was apparent that no matter what country or region, student success was based on the same foundation in all countries: parents who fight for the rights of their children, administrators who believe in these students and support their placement, trained staff who are enthusiastic and creative about teaching, good teamwork and communication between the school and the parents, and clear goals that are shared by all.

After my presentation, a gentleman came up to me and said,

“Madame, do you remember me? Do the words Notre Ecole mean anything to you? I was the director of that school.”

I was surprised, and then I couldn’t help but laugh at the irony of it all. Notre Ecole was the only institution in Paris at the time 19 years ago that were accepting children with autism and were teaching them (using TEACCH), as opposed to just providing psychoanalysis. I had hoped to get Jeremy into Notre Ecole, but it had not been possible. Perhaps, if he had gotten into Notre Ecole, I would never have left France. I would not have written the books that I have, as it was my frustration that inspired me to write books in order to provide hope and information to save other parents a little grief. My son certainly would not be graduating from high school in a few days, if he had gotten into that school.

Things happen for a reason.

It Takes An Army

Graduating high school was not one of the goals I had for Jeremy. Now he’s college bound.

In 2007, my son Jeremy walked the graduation ceremony at the local high school along with the other seniors from his severely handicapped class. On June 18, he will be walking the graduation ceremony again, in the same gold and scarlet robe he wore three years ago. This time however, he will have earned and will receive a full academic diploma. He has a GPA of 3.5. For me, this is unbelievable. Graduating high school was not one of the goals I had for Jeremy. The goals I had were mostly those based on functional living skills.

When Jeremy was diagnosed, I was told to find a good institution for him. I don’t think the medical professional who diagnosed him meant “college,” but that is where he is headed. People ask me how Jeremy made it to this point, and the truth is, there is no short answer. Like most parents, I started out hoping to find that “one thing” that was going to make a huge difference in Jeremy’s life, that would improve his chances of overcoming the challenges he faced. But I soon realized that there is no magic bullet.

Jeremy, now 21, has received numerous treatments, therapies, and educational strategies (some of which he still continues) with acronyms such as ABA, TEACCH, OT, SI, AIT, VT, RPM, and some biomedical interventions including methyl B12, HBOT and more. All of them have helped somewhat, some more than others. But the most important ingredient to Jeremy’s success has been the same that it is for all of us: having the right people as teachers and mentors – people who believe in you, who motivate you to do your best. People who see beyond the label and who are willing to see the person. People who are willing to try different ways of reaching and connecting with the student, when the traditional ones do not appear to be working.

Any tasks requiring motor planning and sensory processing have always been extremely difficult for Jeremy. My office is full of binders that include Jeremy’s task analysis and data sheets for all kinds of skill acquisition such as fastening pants and brushing teeth. When he was younger, many educators and other professionals took Jeremy’s inability to respond as a lack of intelligence, rather than as challenges due to visual processing issues and difficulties in initiating and controlling his motor planning. Teaching methods based on visual strategies did not work with Jeremy. He is not a visual learner, and his visual processing was not working correctly, but no one recognized that at the time.

When he started high school, Jeremy attended a class for the severely handicapped at the local school. When Jeremy’s teacher, Rachel Page, came to our house for a home visit and saw how I was teaching Jeremy to point to letters to spell words. Jeremy had been taught by Soma Mukhopadhyay twice a month, over a period of 14 months, using the Rapid Prompting Method she had developed, and I continued to work with Jeremy using this method of teaching. Rachel tried what she had observed at school and was successful. By then, I had had enough battles with the powers that be to even consider asking them to use an unknown method to try and teach Jeremy. (The year before, Jeremy had come home from the middle school with rug burns on his chest and back inflicted unknowingly by an inexperienced occupational therapist, and had ended up filing for due process when the school district refused to provide training. At the IEP meeting I had requested, the OT said she didn’t need anymore training. No comment.) I had decided to do what I did at home and to just focus on Jeremy having a safe environment at school and coming home unmarked.

Rachel then invited me to the classroom to show her and Jeremy’s paraprofessionals how I was teaching Jeremy at home. At an IEP meeting, it was decided by the IEP team to allow Jeremy to attend one general education class on a trial basis. This was a major victory for Jeremy at this school district at that time.
Jeremy’s most important growth period came over the next three years, thanks to Allan Gustafson. Allan was Jeremy’s second teacher in the SH classroom and is the best teacher that Jeremy has ever had. He helped Jeremy—and all his students—grow not only intellectually, but emotionally as well. To give you an idea of the type of teacher Allan is, read Allan’s assessment of Jeremy for an Individualized Transition Plan (ITP) meeting in 2006. It says it all about the type of person he is:

“Jeremy is a complicated young man who people cannot judge on appearance. A good metaphor would be to describe Jeremy like as an artichoke. Each leaf on the artichoke has to be taken separately, each having its own characteristics. As you go through each layer of the leaves, it becomes more apparent that there might be something inside, something worth getting to. It takes time to get there, but there is a heart inside, worth the time and effort to expose, as some people say is the prize for the patience of delving through the layers of leaves. Jeremy is this man.”

In June 2007, Jeremy was technically a senior and it was time for him to attend the off-site transition program, thus his participation in the high school graduation ceremony. By that time, Jeremy had made it clear that he enjoyed learning, and wanted to continue learning even if he was no longer on a high school campus. Some of his IEP goals by then included preparing him for taking the GED sometime down the line while attending community college. It was clear that he was capable of doing that, although I would never have though that possible a few years earlier.

However, Jeremy did not handle the transfer out of high school into the transition program well at all. Meanwhile, my father was dying from lung cancer and I was traveling a lot to helping him and my mom, who lived two hours away. I wasn’t able to work towards changing the situation. Bruce Cochrane, an administrator new to the school district (now head of Pupil Services), became concerned about the complete change in Jeremy, from a model special education student to a non-compliant, unhappy and disruptive person. Bruce started asking questions, studying Jeremy’s school records, interviewing teachers, observing Jeremy. Jeremy, still considered a transition student, was moved back to the high school where his behavior improved. He continued on a couple of workability projects, but started taking general education classes again.

Then, at an IEP meeting, Bruce brought up the question – was Jeremy interested in working towards obtaining his diploma? According to Jeremy’s official transcripts, Jeremy needed more credits in certain subject areas, and he needed to pass the California High School Exit Exam, which is routinely given to tenth grade students. Students are allowed six chances to pass this test. The IEP team recommended that the test be given to Jeremy the first time as a baseline, if he was interested in trying to get his diploma. Jeremy surprised us all by passing on his first attempt all the parts of the test he was given. However, for some reason, the school did not administer the essay part of the test, and Jeremy had to retake the complete English section of the test a few months later. Again he passed. Since then, he has steadily been taking two classes a semester towards his diploma.

This June, I am doubly blessed. Not only is Jeremy graduating from Torrey Pines High School, his sister, Rebecca, is graduating from the other high school in our area, Canyon Crest Academy. I am proud of both of them, and thankful for the educators that have crossed their paths, not to mention the army of paraprofessionals, therapists, support staff and other professionals who have joined us on our journey. Clearly, there is not one magic bullet. Rather, it takes an army, and we will never forget them.

This article was first published in Spectrum Magazine, June/July 2010 issue.

The Horse Boy: Looking for Answers to Autism With Horses in Mongolia

On Tuesday, May 11, The Horse Boy airs nationally 10pm EDT on the PBS series Independent Lens.

The Horse Boy is a film about a dad (Rupert Isaacson) and a mom (Kristin Neff ) who are trying to do what hundreds of thousands of families in America do every day – search for a way to reach their child with autism. Only, we don’t look so good doing it and we usually stay pretty close to home.

Rupert is a past professional horse trainer, writer and journalist as well as a human rights advocate for tribal peoples. Rupert’s wife and Rowan’s mother, Kristin, is a tenured professor of psychology, and has been a practicing Buddhist for more than 10 years. She is well known for her researches into the Buddhist concept of self-compassion and its correlation with positive mental health. When Rupert witnessed the amazing way in which their son Rowan, who had autism, connected with their horses in Texas, they started to wonder if there was a place on earth that combined healing and horses. They discovered that the nomadic horse life is still lived by most of the people Mongolia, and it is also the one country where shamanism–healing at its most raw and direct–is the state religion. So off they went.

All right, so maybe we all can’t grab our kids with autism and take off for Monglolia and ride horses and experience ritual healings with the reindeer people. I know my area’s Regional Center isn’t going to pay for it and neither is the school district. However, the point of the movie is best highlighted by Michel Orion Scott (director and cinematographer) of “The Horse Boy” when he is asked what he thinks ‘healed’ or helped Rowan. His answer:

“I don’t know … but what I do know is that, if there was one thing it could be contributed to, without a doubt, it is that the parents took that extra step to follow their child into the unknown. To allow themselves to trust the love they have for their son and to do whatever it took to find a way into his life.”

It’s a good reminder, as parents to follow your instincts, observe and listen to your child. Cheesy as it may sound, follow your heart. It’s sound advice. Though Rowan, Rupert and Kristin are in Mongolia, they encounter the same trails and tribulations that most parents with autism do. We hear Rupert exclaim,

“Sometimes it is like he (Rowan) is leaping forward and sometimes it is like he is totally regressing.”

Who can’t relate to that? What parent doesn’t feel that anguish every time there is a ‘setback’? Your child or teen goes back to some disruptive or unhappy behavior, and you are filled with the double anguish of not being able to figure out how to make him feel better, and the fear that it may not be just a temporary regression.
With all the ups and downs we parents of children with autism have to face, it’s nice to see inspirational movies such as this one from time to time. The scenery is beautiful and it’s a pleasure to watch a movie about autism that doesn’t take place in a classroom. It’s also good to know that Rupert and Kristin have used the profits from the book The Horse Boy to found the nonprofit Horse Boy Foundation, which offers the chance to ride and benefit from close contact with horses, other animals, and nature. They welcome families to spend time there.

My favorite line in the movie is when Rupert says:

“We’re gonna climb up 12,000 feet to perform 4 hour healing rituals with shamans, isn’t that what all families do?”

Rupert was being sarcastic, but the answer is, “Yes.” Yes, it is what all of us parents do. We get up and we climb mountains every day, in order to help our children. Sometimes the shamans are helpful, and sometimes they are not, and often it is hard to tell the difference. Watch this film, and you’ll be inspired to continue climbing those mountains. You know it’s worth every step.

“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.

How to Teach a Child or Teen with Autism the Concept of Waiting

There are a few things in life that are certain: paying taxes, death and waiting. No matter who you are, part of your life will be spent waiting. Unfortunately, the “waiting” concept is not one that is picked up by osmosis for many children  on the spectrum. Hopefully, they will have learned this concept  by the time they are teens, but I’m still including it in this column because it is a necessary life skill everyone needs to learn – on and off the spectrum. We all have to wait in line at the grocery store, wait at the doctors office, wait for a turn on our favorite ride at Disneyland, wait at the restaurant for our food. Children also have to learn how to wait  at holiday events,  when traveling, at home for things they can’t have right away or to go out for a ride in the car. As children grow into teens and become more responsible for their behavior, waiting is definitely a skill they will be expected to use in the community.

Teaching the concept of waiting

waiting

Here’s one way of teaching the concept of waiting:

  • Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting  in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
  • Glue a piece of velcro  on the big icon for putting a smaller  icon of requested item on it.
  • Have a timer available.
  • Have small icons of the child’s favorite items that he likes to request.
  • Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
  • When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting  is at this point (10 seconds, 30 seconds, 1 minute).
  • As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
  • Do this many times  whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.

Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time).  Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.

Temple Grandin and Jeremy Sicile-Kira to Keynote on-line Autism Conference

No-Cost Virtual  conference and new book highlight Autism Awareness month.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing. Continue reading »

Chantal Sicile-Kira on “It’s Your Call”

This is a few minutes of footage from a KVCR TV show I was on in April 2006 to promote Autism Awareness. It was an hour show where we answered questions from callers. The producer and moderator is Lillian Vasquez of KVCR, and the other guest is Patty Gross Founder of Northstar (where  Jeremy’s  assistance dog, Handsome, came from). Lillian has produced a few shows on autism creating great community awareness.