Autism Life Skills

July 20, 2010

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. 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 impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains 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.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” 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 it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed 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.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

This first appeared in the Advocate Magazine in 2008, published by the National  Autism Society of America

Liberté, égalité, fraternité – Happy Bastille Day!

July 14, 2010

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.

Grad with autism earns long-awaited diploma

June 18, 2010
Published in the The Coast News
by Lillian Cox

DEL MAR — Among 632 seniors graduating from Torrey Pines High School on June 18, no one could be happier than Jeremy Sicile-Kira. And this isn’t the first time Jeremy has walked with his graduating class.

Three years ago Jeremy, who is severely autistic, completed the functional life skills track at Torrey Pines. For his efforts, he walked through the ceremony but he did not receive a diploma.

In the fall he proceeded to an off-campus transition program to learn living and job skills.

“He didn’t do well,” said his mother, Chantal Sicile-Kira. “He was noncompliant and didn’t want to do anything. He was bored.”

Jeremy was educated through a combination of home schooling by his mother and special education that included taking mainstream classes at Torrey Pines in marketing, economics, social sciences and psychology.

Because he was unable to speak, Chantal Sicile-Kira taught Jeremy how to communicate using applied behavior analysis. The technique involves a laminated, paper keyboard, which Jeremy uses to spell words by pointing.

Frustrated that Jeremy was doing poorly in the transition program, Chantal Sicile-Kira spoke with Bruce Cochrane, executive director of pupil services at the San Dieguito Union High School District.

“Bruce said, ‘Why didn’t you have him go for his diploma?” she said.

Chantal Sicile-Kira learned that in order to graduate with an academic diploma, Jeremy first needed to pass a high school exit exam and earn credit in required subjects.

“The school looked at Jeremy’s transcripts,” she said. “Since he was allowed to be in the educational system until the age of 22, he had enough time to earn credit if he took two classes a semester.”

Another thing that worked in Jeremy’s favor was that students are given six chances to pass the California exit exam.

“We thought we’d have him take the test and use it as a baseline,” she said. “He passed it the first time.”

This fall Jeremy will start college the same time as his younger sister Rebecca, who graduates from Canyon Crest Academy on June 18. She is entering UC Davis as a freshman.

Jeremy will embark on a degree in journalism

or communications at MiraCosta College. This semester he got a head start by completing a course in intercultural communications.

Jeremy is already a published writer. He’s written a column titled “Life As I See It” in the school newspaper. In April he published an editorial in the North County Times. Currently he’s working on a book about his life.

In addition, he collaborates with his mother, who is an award-winning author, speaker, and president of Autism Making A Difference, Inc.

A few years ago Jeremy was featured in MTV’s documentary series “True Life,” for the episode titled “I Have Autism.”

Since then he has become a popular speaker who offers these words of advice to the graduating class of 2010 in a speech he’ll be delivering this afternoon.

“My real message to you today is: Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.

“Parents, believe in your children and encourage them to fulfill their dreams.

“Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.”

Chantal Sicile-Kira has always believed in her son’s potential, even when she was advised to “find a good institution for Jeremy” when he was growing up.

“He is heading to a good institution now,” she said. “It’s called ‘college.’”

This summer Jeremy was invited to address the Staten Island and Manhattan chapters of the National Autism Association. He has secured a donation of $500 for travel costs for his mother and him but needs an additional $300. To make a donation or to contact Jeremy, e-mail jsicilekira@yahoo.com.

Chantal Sicile-Kira has just released a new book, “41 Things to Know About Autism.” For more information visit chantalsicile-kira.com.

SOLANA BEACH: Nonverbal autistic student to give commencement address

June 17, 2010

Torrey Pines’ Jeremy Sicile-Kira clears big hurdles on road to graduation

Published on the front page of The North County Times

By CHRISTINA LOPEZ

Most people would consider scaling Mount Everest or winning a Nobel Peace Prize an impressive feat, but Jeremy Sicile-Kira —- who was diagnosed at age 3 with severe autism —- is scaling heights that are equally impressive.

On Friday, the 21-year-old is set to become the first nonverbal autistic student to receive a full academic diploma from Torrey Pines High School, San Dieguito Union School District officials said.

He will also give the school’s commencement address, which has been prerecorded using a computer voice generator that translated his typed speech into an audio file burned onto a CD.

Sicile-Kira communicates by using what is known as Rapid Prompting Method, a system that requires intense focus and participation by aides or other caregivers to keep him on task.

In Sicile-Kira’s case, his mother, Chantal, and aides use prompts —- snapping their fingers or pointing at familiar objects —- as they ask questions.

He then points with one finger to a letter board or keyboard to spell out his answers.

“My mom tells me that no one is better than anyone else,” Sicile-Kira said in an interview last week, using his laminated keyboard, and assisted by his mother. “We know that we should try our best.”

Autism is a range of complex neurological disorders characterized by social impairment, communication difficulties and repetitive behavior patterns, according to the National Institutes of Health.

Many people with autism are diagnosed as toddlers. In severe cases, children with autism appear to be locked in their own worlds, unable to communicate.

Chantal Sicile-Kira said her son began showing signs of autism when he was 9 months old.

“He didn’t move. He didn’t develop right away,” she said. “I had to fight to find out about Jeremy’s condition.”

In the years since, she said, her son has gone through home schooling, special education and many different therapies, but couldn’t spell out words until he was 14 years old and began learning RPM.

“I really believe in the impossible,” she said.

At Friday’s commencement ceremony, Sicile-Kira —- decked out in cap and gown —- will deliver his speech to 619 fellow graduates.

His sister, Rebecca, 18, is graduating earlier Friday from Canyon Crest Academy and will be in the audience during the 4 p.m. Torrey Pines ceremony.

“The staff and the students know him so well —- they’ll be encouraging him,” she said about her brother’s participation in the event. “I think people will be proud of him when he delivers the speech.”

Bruce Cochrane, executive director of student services for the San Dieguito Union High School District, has worked with Sicile-Kira for the past three years and is just one of the many people who helped him reach this goal.

“Jeremy is an incredible young man,” Cochrane said. “I think as he has matured, his skills and talent have flourished. (He) has been able to communicate at a greater level and really show people his intelligence.”

Sicile-Kira is able to earn his diploma under a state law that gives special education students until age 22 to do so.

He completed the necessary course work and passed the California Exit Exam on his first try.

Sicile-Kira’s mother said she never believed the naysayers who told her when the boy was young that he would have few options in life.

“Once they diagnosed him, I was told to find him a good institution,” she said. “And I have —- it’s called college.”

In the fall, Sicile-Kira will enroll at MiraCosta College in Oceanside, with an interest in journalism; he hopes to write for the college newspaper.

Until then, his summer plans include financing a two-week trip to New York City. He also plans to publish his first book and establish an online newsletter geared toward helping families understand children with disabilities such as autism.

“I think I greatly inspire others by my ability to continue to learn and not give up on my dreams,” he said.

An author, speaker and autism expert, Chantal Sicile-Kira is working on her fourth book on autism and says she has learned much from her son in the years since his diagnosis.

“We raised him to never feel sorry for himself,” Chantal Sicile-Kira said. “He’s a big inspiration to me. He has taught me patience and has actually made me into a stronger person.”

The message Sicile-Kira wants to convey to the class of 2010 is to focus on a goal and never give up on yourself.

“When I first arrived, I had no way to communicate,” he said. “But over the years, I learned how to spell, and my life changed from one of loneliness to one of having great teachers and an education.”

It Takes An Army

June 13, 2010

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

May 9, 2010

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.

Jeremy Using an iPad

April 20, 2010

Jeremy has been trying to master turning the pages of a book. He loves to read, and he loves learning, but getting all his motor planning / sensory processing to move the pages of a book are a bit much.   Here you can see how with the use of an iPad he learned quickly how to turn the pages of a book  on the iPad. Great use of technology!

First he learned to slide his finger across the screen:

Then he learned to slide his finger to turn the pages:

I hope this encourages others!

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

April 20, 2010

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.

The Ultimate Sandwich Generation

April 13, 2010

This article first appeared in the April 2010 edition of Spectrum Magazine.

When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.

Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.

Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.

The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.

The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.

I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.

Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.

Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.

Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.

Then it hits me. I don’t want to rush through any of this.  I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.

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