Your Opportunity: The Freshman College Experience

August 29, 2011

This post is by Autism College’s  first guest blogger,  Kerry Magro, who was diagnosed with PDD-NOS at age four. Now as an adult who has autism, he is a recent graduate of Seton Hall University’s prestigious Leadership Development Honors program, majoring in Sports Management. In 2008 as a college sophomore he started the first Student Disability Awareness club in Seton Hall’s history to help spread awareness and raise funds for those affected by autism and other disabilities.*

Here’s the scenario: You’re a college freshman. You’re on your way to THE higher learning experience of a life time. There is a catch though. As an individual with autism going into college you are in a distinct unknown class which is both good and bad. If you look at some websites today you may see how many people go to college from a certain race/demographic. With a learning disability though, especially autism, we don’t know the numbers of who’s going to college today and who’s not. What we do know is that an estimated 500,000 people with autism will become adults within the next decade. This means that your story, through your college experience, can inspire so many.

With so much still unknown it means that many people are still unaware of autism at the college level. Granted some programs know what they are doing, many still have a very long way to go. I can tell you though my life has changed so much because of my college experience with autism. When I was 4, I was diagnosed with pervasive developmental disorder- not otherwise specified (PPD-NOS). Almost 18 years later I made my dreams come true by receiving a diploma from Seton Hall University. I went through so many challenges to get there but because I faced those challenges I’ve become a stronger individual by far. Because of the uncertainty, it’s how you prepare now which will ultimately be all the difference in your college experience.

So where do you start? Many of the steps are very basic and most of them involve just one word which awareness. The steps that I tell people through a few blogs I’ve wrote is broken down into these…

  1. Making sure you understand who the faculty members are for your program (director, disability specialist, etc.)
  2. Understanding what accommodations they offer (extended time on tests, private rooms for exam periods, individual note-takers, etc.)
  3. Finding out if there is a disability support student organization (important in regards to making sure students have a “voice” and community that can promote acceptance and diversity).

Ideally these steps will put you ahead of the game. Still you will need to have a strategy for how to assess your Individualized Education Program (IEP) in College. I was the unfortunate soul who realized 2 weeks within college that I no longer would have an IEP. No one ever told me that my IEP would be stripped away, even during my exit interview. As I know this is August you can’t just go back to High School and do this but I would take any and all notes you have from your exit interview from High School and assess where you are as a whole. Find out what your strengths and weaknesses are and then after you figured that out what accommodations they offer (step 2 above). I would suggest doing all of these steps with a parent/guardian as well to make sure you don’t miss anything while going through the trials.

Other Mentions I usually tell people are:

  • Prepare to self-advocate. Many schools will make you sign a paper before they let parent involvement happen and even then they push independency.
  • Figure out whether you would feel comfortable living in a college dormitory. With proper documentation, you can ask for a single room to make your transition easier!
  • Speed Reading Courses (many are available at college institutions for students of all ages around the U.S.! You can also look for online video instructions, such as the one here)
  • Asking for a learning buddy (an upcoming sophomore to help show you the ropes)
  • Maintaining healthy reading and exercise habits (30 minutes a day for each) to keep the mind sharp in the summer
  • Reaching out to local and national autism-related organizations (such as the Autism Society and Autism Speaks) to talk with experts in regards to self-help and support groups.
  • Buy a SMARTPEN!

Finally, my last word of advice is to have fun! Many people say college is the best time of your life and it really can be if you let it. Remember, autism can’t define you, only you can define autism. At the same time PLEASE remember to give back. As I said, you’re voice is the key to our autism movement. So many famous people with autism today are much older and to promote forward progress we need new generals and new voices to come to the front and join in. Because Autism in college is still unknown a college education could very well be that first step…

* If you would like to contact Kerry  directly about questions/comments related to this post, he can be reached at his Facebook Fan Page or at kerrymagro@gmail.com. Please feel free to read his other college post which references some of his work in this post from The Autism Society of America here  (scroll down the page) along with his Autism Speaks college blogs here.

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

July 10, 2011

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 processing – making 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.

 

 

Free live Q & A on Tues July 19, 2011: Auditory Processing with Terrie Silverman.

July 5, 2011

Autism College will present a free live Q & A on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. The topic will be auditory processing and autism, and Auditory Integration Therapy. Sign up below.

Does your child   have difficulty coping with specific sounds; struggle with understanding what he/she hears;or shut down or struggle when there is much background noise? Does he or she hum or talk to himself/herself; have trouble with articulation, sound flat without inflection; or have trouble understanding what you say?   Your child may have auditory processing difficulties.  Tune in to hear what Terrie has to say. You’ll have the opportunity to send in some questions. Sign up below.

Terrie Silverman, M.S. received her master’s degree in speech/language pathology in 1973 from Rutger’s University and was trained in November 1992 as an Auditory Integration Training Practitioner. Ms. Silverman has been working with children, adolescents and adults with autism and developmental disabilities since 1974, in public schools, private schools, state and private residential facilities, group home settings, as a consultant, and with multidisciplinary teams in hospitals, clinics, schools and state programs.

Ms. Silverman and her staff have provided Berard Auditory Integration Training throughout the United States to over 2800 individuals. Ms. Silverman was Director of a Richmond, Virginia nonprofit agency for 12 years, where she created several programs to support families who were raising an individual with a developmental disability. Ms. Silverman was on the Board of Directors and was a member of SAIT, the Society for Auditory Intervention Techniques, and when it developed into a worldwide organization called BAITIS, the Berard Auditory Integration Training International Society, in 2007, Ms. Silverman was elected to the Board of Directors. She is a long time member of the Autism Society of America (ASA) and Developmental Delay Resources (DDR), as well as many other disability organizations. Terrie Silverman is a Berard Certified AIT practitioner. For more information go here.

My son with autism quotes TV dialogue, what do I do?

May 10, 2011

For a while, I wrote an “Ask Chantal” column for The Autism File magazine

  So many people enjoyed reading the column that I have taken the liberty of reproducing some of the more popular letters I received and the corresponding advice I gave

If it doesn’t help you, maybe you know someone it can help

Dear Chantal,

My son mumbles and talks to himself all the time

He seems to go into his own world, I cannot get him out

He seems to be quoting parts of films or things he sees on the computer/game boy

Do you have any suggestions how I can direct the speech to a conversation with me? He obviously is verbal but I can’t interact with him

Perplexed

Dear Perplexed,

You don’t mention how old your son is, but the fact that he is quoting dialogue from films or video games is a good sign in terms of his verbal abilities

He may be repeating them because he likes the sound, or he is understanding those words and phrases form listening to them over and over

  Pay attention to whether or not he is repeating bits of dialogue at appropriate times, which would show that he is understanding the meaning or intent

For example, my son used to repeat certain lines form Sesame Street that had to do with eating  cookies when that is what he wanted to eat

When he slips on the stairs, he says “Whoops! Sorry!” in the same voice  he has heard in a favorite video

This is a good sign

  I would suggest you  get him interested in communicating with you by getting to know the movies and games he is quoting from,  and then dialogue and connect with him by repeating them as well

He will be more interested in you if you take an interest in what he is into

You can repeat the bits of dialogue at appropriate moments

Then, use the characters from the movies and write social stories about what they would do in certain real life situations, getting him to help more and more, gradually getting him into talking about the here and now and not so much the pretend world

  Using his interest to connect with him and to teach him how to connect with others is an important first step

Chantal

Putting Yourself First

November 7, 2010

This past week, I finally made it to the RoadRunner store to buy a pair of running shoes. I have not been getting my normal amount of exercise (walking or elliptical, plus core strengthening) and I was feeling it. Lethargic, less energy and putting on weight. And when I did exercise, my sneakers were so worn I was worried about my back and left right knee (go ahead and laugh if you are under 35, you’ll soon understand what I’m talking about….). I knew it had been a while since I had bought a new pair – but when I got to the checkout – I was told my current sneakers were purchased in July 2009. YIKES!

How did I let exercise – the one thing that keeps me healthy and sane (OK, maybe not sane but at least behaving appropriately in public settings) slide off my schedule?

Upon reflection, what has happened in the last two years is that I had put myself on the bottom of both the “scheduling support people for Jeremy list” and  the “to-do list.”  Parents and educators,  you know what I mean – you all do it. When you have special needs children your life can get swallowed up by your child’s or student’s needs.  I have been squeezing in my writing (ie paid work), my socializing (ie refreshing my social skills) and my exercise (ie keeping healthy) around Jeremy’s needs and everyone’s schedule.

I often tell parents and educators  during my presentations that they have to take time for themselves. Like the cabin crew tells you on the plane – you have to put your oxygen mask on first before you can help anyone else. Same goes for real life. If you don’t take care of yourself, no one else will, and you won’t be  any good to anyone else. So please, do as I say and not as I  have been doing.

Now, I’m putting my priorities first on the schedule. Everything else is secondary. (At least till the new shoes get a little mileage on them).

One small step towards self-regulation

February 6, 2010

How to teach your teen with autism to request a break

Self –regulation is a needed life skill not practiced by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card. This may be helpful in preventing meltdowns or compliance issues. Teenagers need to be given more control over their time and need to be able to request necessary breaks  in an appropriate manner.

Let’s say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back. What you need to do is teach him to communicate to you when he needs a break, and allow him to have those needed breaks within reason. Here is one way to do that: Continue reading »

Then and Now: Reflections on Raising a Son with Autism

October 1, 2009

My first contact with autism – 30 years ago – was at Fairview State Hospital in Orange County, California. I worked there two years, preparing young adults for de-institutionalization, teaching them self-help and community living skills using behavioral methods. I learned about discrete trials, prompting, rewarding and taking data. Little did I know years later I would be using these same techniques to teach my own son, Jeremy.

To this day I vividly remember my first contact with a young adult with autism. It was my first day at work, and I was waiting in the recreation therapy office for my boss. Gregg walked in. “Hi my name is Gregg Doe. I used to be a sports newscaster. Do you like baseball? Ask me about any World Series and I can tell you who won and what the score was.” I was thinking how dedicated this man was to leave a job in television to work at a state hospital, until I looked at my clipboard and saw his name included in the list of people I was supposed to teach. Gregg could tell you all about sports, but couldn’t tie his own shoelaces.

Fast forward to today: I know a lot more about autism, and so does the general public. Then, I would take Gregg and his peers into the community to practice crossing the street or ordering food in a restaurant, people would stare and avoid getting too close. Now, when my son – who at 20 is about the same age as most of my Fairview patients back then – is out in public, people are more accepting, even when Jeremy is not on his best behavior. People smile at us, some stop to talk and ask questions when he has his assistance dog with him. People’s attitudes towards autism – and people with autism – have changed, in a good way. Services for kids have improved. Teachers are more knowledgeable about autism.

What has not changed over the years, however, is the devastation a parent feels when hearing the diagnosis of autism for the first time. Difficult then; just as difficult now. No matter how deeply inside you realize something is wrong, suspect it might be autism, the professional pronouncement still kicks you in the stomach and sends your head reeling. Today there are many different treatments and therapies, a good thing. However, there is still no know way of knowing which therapy or biomedical treatment will be helpful to your child. Then and now: we grieve, we live amidst uncertainty, we lie awake night after night searching for answers.

When Jeremy was born in Paris in 1989, autism was still fairly rare: The estimated diagnosis rate was 1 in 10,000. It’s still painful to think back to Jeremy’s early years. It was almost impossible to get any help for him at the time. I knew he was not developing normally, and I wanted to know why. I wanted somebody to tell me what to do to help him. Most of the medical professionals  I consulted told me to take him to see a psychoanalyst – This was the treatment of choice in Paris at the time. When Jeremy finally was diagnosed, at age three, the specialist handed me a box of pencils and said, “If you are lucky, you will find a good institution for your son. He will eventually learn to package pencils into a box. That’s where these came from.” That was then. This is now: I have found an institution for my son: it’s called “college.” Jeremy is headed there after he graduates from high school in June 2010 – with a full academic diploma. He passed the California High School Exit Exam (one of the requirements), without modifications, only accommodations. He now needs to take and pass one year of algebra and one semester of science to earn his diploma.

My son’s success is not a miracle, rather the result of years of blood, sweat and tears (on his part and mine), and the hard work of many educators, home tutors, Jeremy and myself. I’m not especially talented, but I am very stubborn. I never asked the school for anything I had not first tried with Jeremy myself, experienced success and results, and had the data to prove it.

When Jeremy was 14, I took him to see Soma Mukhopadhyay, now Educational Director of HALO (Helping Autism through Learning and Outreach). I met Soma while doing research for my first book, Autism Spectrum Disorders. It was then I realized Jeremy was an auditory learner. All the years of using visual strategies, myself and educators thinking he was not “getting it,” finally made sense. Fifteen years ago visual strategies were the new kid on the block. Today a huge assumption exists in our community that all or the majority of students with autism are visual learners. It is simply not true. How many kids who “don’t get it” with visual strategies are really auditory learners, making marginal success because we’re not teaching to their learning style?

Soma started to teach Jeremy using the Rapid Prompting Method. It involved a lot of work, but slowly he began to make progress. That year I also realized how much he was “stuck” in his body. He could spell out and describe the steps needed to complete a sequence, but he could not move his body to do it without physical prompting.

Jeremy’s challenges (see sidebar) were, more often than not, a result of sensory processing issues and movement disorder. When I interviewed adults on the spectrum for my third book Autism Life Skills, I asked each what was important to them growing up. It surprised me to learn the great impact sensory processing challenges had, even on those with Asperger’s Syndrome.

My views about autism and autism treatments have changed over the years. Then, I was a die-hard behaviorist; I only used treatments scientifically proven to be effective. Now, I embrace different types of therapy as adjuncts to using behavior-based strategies (shaping, prompting, rewards, etc.). After witnessing Jeremy’s success with RPM and pointing to letters, having it validated in different ways by different educators, I believe parents should try a therapy or educational strategy that makes sense for the child and family. See if it works; there are ways of validating on an individual level.

While working with young adults at Fairview State Hospital before I had Jeremy, and even while he was little, my face scrunched up in disbelief when nonverbal people severely impacted by autism were described as “locked up” in their body, with no way of reaching us. Now I know exactly what they mean; this is Jeremy. I strongly believe there are different types of autism. I believe that for some, like my son, autism is a movement disorder. They cannot always control their movements or use their muscles (needed for speech and other important skills). Many, like my son, have problems initiating and stopping movement yet are capable of learning nonetheless.

Then and now, autism remains a multi-layered condition with no clear answers to guide parents and professionals. Then, treatment options were limited…so very limited. Now, options range from behavioral to biomedical, from sensory to social skills, and everything in between. Then, parents were told to expect the worst, to institutionalize their child, move on with the lives. Now, thankfully, we hold a brighter vision for our children’s future. Then and now: our children are gifts in our lives and our love endures. That will never change.

SIDEBAR:

By Jeremy Sicile-Kira

Jeremy tells us…

When I was little, I had no real way of knowing what was going on around me. My body would not move even when I tried. Life was just chaos with light and sound but with no meaning. Then a physical therapist helped me learn to use my body. My mom helped me make sense of what I was seeing and hearing. I had tutors my mom hired that taught me with ABA. Then I had hearing therapy and lenses to help me see. It took a lot of effort on my part and the tutors to help me learn. Then my mom found Soma and RPM. This changed my life. I did not believe I could be so kindly taught by such a tiny woman. It is still lots of work and it is still difficult when I meet new people.

Having a way to communicate only makes life livable, but I need some nice relationships, which are not easy when you are like me. I plan to continue to learn, and to tell people to never give up.

[V1] Please add date.

Where would we be without our mothers?

May 10, 2009

When my parents moved to America from France in the early 1950’s, Maman was eight months pregnant. She left behind her large, boisterous and close-knit family in France and followed Papa because he wanted to start a new life in the New World. In those days, French people didn’t just pick up and leave and cross the ocean, especially not with a baby on the way. But Maman followed her heart. Maman raised six children in a country where she had no relatives, and at first no friends to help her, and where she didn’t speak the language or know the customs. But she learned them.

Maman must have deeply loved Papa to leave all that was familiar behind, and Papa was no ordinary man. Take camping. Camping for my dad meant spending the three summer months in a cow field in Kentucky, sleeping in tiny pup tents, using a stinky wooden outhouse, and cooking over a campfire. We cleaned ourselves by bathing in the river below, and my mom had to trek into town to a Laundromat while papa went to work during the day. Some of us tykes were still in diapers, and it wasn’t easy taking care of us with no running water (other than the river below). At night, Papa would take us frogging in an old rowboat on the river, and we would eat froglegs for breakfast cooked over the open campfire. It wasn’t till I moved to France as a young adult that I realized that the French did in fact eat frog legs, but not for breakfast, and usually not cooked over an open fire.

My family moved often, about every three years because that was how long it usually took for Papa’s construction projects to be completed, and then it was on to the next one. Pittsburgh, Cleveland, Rosebank on Staten Island, Portsmouth, Stapleton Heights on Staten Island, Altadena in California, and so on – Maman took it all in stride. Think of all the moving and organizing that meant Maman had to do; the number of boxes to pack and unpack, all the stuff six children and a few pets can accumulate. The new school enrollments, finding new doctors and dentists, and acclimating to a new small town or a new big city, trying to find babysitters and make friends. My mother’s French accent was so think, that everywhere we moved people thought Maman had just moved from France, and would comment, “So, you’re from France; how do you like America?” Once Maman had obtained her American citizenship, she would respond “I am an American, what do you think?! I have six children they are all born here!”

When people see what life with my son, Jeremy, entails in terms of energy, and organization, advocating, resource-finding, they often ask, “How do you do it? How do you handle raising a child so impacted by autism, besides having Rebecca?” I think of Maman, raising the six of us (ok, none of us have autism but we had our share of neurodiversity in the family) in different cities every three years, and I realize where my resourcefulness came from. “I had a great role model,” I reply.

Happy Mother’s Day, Maman!

This blog first appeared on Huffingtonpost.com, May 10, 2009

What to pack

October 23, 2007

Sunday – It is amazing how little you care about stuff when you have flames licking at your heels. I flew back from a speaking engagement in New York on Sunday night and from the airplane, I could see three little fires out in the wilderness. Leaving the airport and driving to my home in Carmel Valley, the most northern tip of the city of San Diego, I felt like I had jumped out of the frying pan and into the fire. The closer I got to my neighborhood, the thicker the air. The fierce Santa Ana winds were blowing ashes all around. In the house, even with all the windows closed, there was a fine layer of soot on everything and the smell of campfire permeated our house. With hindsight it seems silly, but Sunday night we still went to bed thinking life would go on as usual.

Monday – When I woke up Monday morning and turned on the news, reality hit. This was not just going to go away. The three little fires had grown and split into larger fires, creating a virtual line of fires going north and south, east of the Interstate 15. The Santa Ana winds were blowing strong, and on the news we were told that they could not get the usual fire fighting aircraft up in the air because of the wind and smoke.

I sneaked into my daughter’s bedroom and turned off our alarm clock. There would be no school Monday. A few hours later we were told that our area was designated a ‘mandatory evacuation’ area. We were told to get out ASAP, while we could. This all felt very surreal. We are four miles from the ocean. How could brush fire come this close?

I contemplated driving up to my mom’s house in Pasadena, 100 miles to the northeast from here to stay for a few days. Ironically, she has been preparing to move out of her house to an assisted living facility a mile from my San Diego house so she could be near us. However, driving north meant driving through other areas that were being evacuated and I didn’t want to be toast on the freeway.

Time to pack. The first thought in my mind when I realized the house could burn down, was an enormous sense of relief at the thought of not having to get caught up on my filing, or cleaning out the closets or emptying the garage. The idea of a fresh start was appealing. After a few minutes of daydreaming, I realized I had to make some decisions, we had to leave. Interesting what different people want to take when it gets down to the wire.

My 15-year-old daughter, Rebecca, was instructed to pack three days worth of clothes, and whatever items she could not live without. Rebecca packed her stuffed bunny that she has had since the day she was born and is literally falling to bits although I’ve given it a new skin many times. She also took the ticket stubs to all the rock concerts she has ever been to, her computer, her cell phone, her new video iPod, one of her tennis trophies and last year’s freshman yearbook. She also took tickets to a rock concert she and I are supposed to attend at the House of Blues on Wednesday. She did not think to pack her contacts, her retainer or her school books.

My son, Jeremy, who is 18 and severely impacted by autism, needed help to get packed. He was standing in the hallway, rocking back and forth and flicking a piece of ribbon. This is his favorite self-stimulatory activity when he is stressed. Some of us drink vodka and smoke.

I asked him with his letter board what he wanted to take with him, besides his dog, Handsome. He spells out “U R NICE TO FIND MY BOOK” He wants his favorite book, an artsy black and white photography book on the metro in Paris. He was born in Paris and riding the metro in Paris is one of his favorite things to do. ‘Got it!,” Rebecca shouted down the stairs. “What else, Jeremy? You may not see or feel your things again. What can’t you live without?” I ask. “MY MUSIC, DAVE MATTHEWS’ Jeremy spelled. “I got him on my iPod, is that OK?,” “YES.”

I packed my jewelry, sentimental pieces that have not much monetary value but come from old friends and family since passed away, gifts from my husband, sisters and girlfriends. I took my favorite photo of my son and daughter — their first Halloween in California. Jeremy (seven at the time) is wearing turquoise Chinese pajamas. Rebecca is dressed as a witch. They are so cute , smiling and standing in front of the rental we lived in, before we bought the house we are now evacuating. I took pre-digital photos off the wall, photos of friends and relatives. We have paintings hanging on all our walls, a lifetime of collecting from flea markets around the world, but I didn’t give them a second thought. I took the two pieces of art nearest and dearest to my heart: my daughter’s fifth grade self-portrait that won a ribbon at the local San Diego County Fair, and a multi-media self- portrait my autistic son made with an art college student. I grabbed a few days worth of comfortable clothes and for some reason my leather jacket. I had not realized until then the importance of that jacket — it has been everywhere with me, a witness to my adventures in different places. I took my computer, and saved online once again the manuscript I am currently working on. Can’t be too careful.

My husband packed some clothes, a computer, flashlights, cat and dog food, our Very Important Papers which are always in a metal fire proof box. He packed water, food, the kids favorite snacks. I packed 2 cans of fois gras — souvenirs of a trip to France — a couple of good bottles of wine, and a bottle of champagne. Why let it all go to waste? We might as well enjoy one good meal before we get really depressed.

All the neighbors are out on the street packing up their cars. We hug and exchange cell phone numbers and the surreal became reality. We are taking our two cars, so we split up the teens, the 2 cats and the dog. We head to Imperial Beach, about 25 miles south where a niece and her husband have just moved into a tiny one bedroom apartment. When they first arrived to San Diego a month ago, they stayed with us till they found their new home. I never thought that one day, I would need to ask them to repay the favor.

Tuesday – Tuesday morning, everyone is asleep in the tiny living room. I check on the internet, looks like our house is still standing. There is little relief in knowing that, because if your house did not burn down, it just means someone else’s did, possibly someone you know. The fires haven’t stopped, they are still moving towards the coast. I get a call form my sister in New York, she tells me my brother, a cameraman based in Philly, is flying out to cover the story for Good Morning America. My brother has covered many natural disasters in the U.S., including Hurricane Katrina, other floods and fires. This time it will probably seem a bit more personal.

This blog first appeared on the Huffingtonpost.com on October 23, 2007

Adapting to Autism

April 2, 2006

Carmel Valley woman’s experiences and books help other families deal
with the disorder

San Diego Union Tribune – April 2, 2006

By Ozzie Roberts
When talking about her 17-year-old son, Jeremy, who copes with severe autism, Chantal
Sicile-Kira, the author of two books on the developmental disorder, often says: “Things
happen for a reason. We all serve a purpose in some way.”
Her husband, Daniel, a quiet, soft-spoken
guy, will give you a bit of a different take.
“Why was my son born with autism? Why
did this happen to our family? I don’t know,”
he’ll say. “It’s just random selection. But
(we’ve) got to play with the cards (we’re)
dealt. That’s life.”

Clearly, Chantal, 49, and Daniel, 53, have
gone ’round and ’round about their son’s
condition.

The Carmel Valley couple have been
married for more than 27 years and lived
together all over the United States, France
and Great Britain. And together, they’ve searched the two continents in often daunting
efforts to find effective help for their son through the years.
The Sicile-Kiras get past their differences and stay united on one major consideration:
They both want the best for Jeremy and his little sister, Rebecca, 13.
So while Daniel supports the family as an architect, Chantal, who worked awhile in
recreation therapy for kids with disabilities at a state hospital, stays at home to be a buoy
for her own young.

In the course, she’s joined the executive board of the San Diego Chapter of the Autism
Society of America; she’s a national speaker for the cause; and she hosts a weekly 30-
minute Internet radio program on Autism One Radio (www.autismone.com) at 10:30
a.m. Tuesdays. Every second Tuesday of the month, she hosts a program in French at 11
a.m.

Chantal also works as a volunteer for the Autism Society, helping coordinate such events
as the organization’s sixth annual gala fundraiser – “All Out for Autism” – set for 6 p.m.
April 15 at Sea World.

Chantal wrote “Autism Spectrum Disorders” and “Adolescents on the Autism Spectrum.”
They’re two books intended to help families of autistic children guide them into living as
independently as possible and making their own informed decisions.
The books teach people about autism and about where to go to get assistance for children
– keys, she says, to coping with the disorder.

“Adolescents,” published by Perigee, a division of Penguin Group, was released last
month. Chantal celebrated with a book signing that was part of a fundraiser for the
Autism Society. It was held at the Poseidon Restaurant in Del Mar.
“Autism Spectrum,” also published in the U.S. by Perigee, and in the United Kingdom by
Random House, in 2004, won the Autism Society’s Outstanding Literary Work of the
Year Award in 2005.

She tells you that she put together the two books primarily on the strength of the
education she and her family gained through their experiences with Jeremy. “I figured if I
had all this information amassed,” she says, “why not share it? (Most) people don’t know
how to (relate to) autistic kids.”

And if the books help others, she adds, it reassures her that her family’s trials are actually
parts of the greater plan.

Jeremy is breathing testament to the positives, Chantal vows.
A junior at Torrey Pines High, he speaks very little and has even less regard for
boundaries. He’ll walk right into your personal space – much the way he did last month
when I visited his family’s home for the first time.

Gangly, with deep-set eyes, Jeremy came nose to nose with me, snatched my hat from my
head and stood, twirling it around, smiling all the while. He likes twirling things.
He’s a major pain with that, says his sister, Rebecca, only because she’s had to put up
with him twirling things out of her room for so many years.
All of that behavior is characteristic of his disorder.

But uncharacteristically, he reads and comprehends at a high school level. He types,
appreciates artistic things and displays a keen sense of the way of things.
“I remain diligent about getting what he needs,” Chantal says, “and I never let him give
up on himself. And he learns.”

With help last February, Jeremy, who goes to school every day with an aide, wrote a 21-
line autobiographical poem for a sociology class that he calls his “I Am Poem.” It’s
insightful and concludes: “Pay more attention to me and less to the label of autism. I am
unique.”

He also likes to have fun, family members agree.
“I love when he and I play games together,” Rebecca says. “I love my brother. He’s really
very nice.”

Says Daniel, his dad: “I guess I’m still making peace with his condition. But I feel a lot
better about where he’s at in his development and in the systems available for him. He’s a
kid, and it’s just been positive seeing him develop over the years.”
Chantal says she sees her son someday living away from home in a supported-living
situation.

“And I’m OK with that,” she says. “It would signal that he’s ready for as independent and
self-determined life as possible – that’s my goal for him, for all kids” with autism.

SignOnSanDiego.com News Metro — Adapting to autism

« Newer Posts