Author, Speaker, Autism Expert

Liberté, égalité, fraternité – Happy Bastille Day!

By Chantal Sicile-Kira |  July 14th, 2010 |  Print Print  | 

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.

Posted In: Adolescents and Teenagers with Autism, Articles, Educators, Huffington Post, Parents of Children with Autism

Tags: , , , , , , | No Comments »

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

By Chantal Sicile-Kira |  May 9th, 2010 |  Print Print  | 

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.

Posted In: Adolescents and Teenagers with Autism, Articles, Autism Life Skills, Communication, Educators, Huffington Post, Parents of Children with Autism, Resources For

Tags: , , , , | No Comments »

Temple Grandin: The HBO Movie starring Claire Danes

By Chantal Sicile-Kira |  January 13th, 2010 |  Print Print  | 

Temple Grandin, a world-renown designer of livestock handling facilities and a professor of animal science at Colorado State University, is arguably the world’s most famous person with autism. Temple has written many books about autism, others about animals, and even more about both. Last week I called Temple (who wrote the forward to my first three books) to get her input on my latest book, 41 Things to Know About Autism. Temple told me that the long-awaited “Temple Grandin” directed by Mick Jackson is finally premiering on HBO on February 6. The screenplay by Christopher Monger and William Merritt Johnson is based on Temple’s book “Thinking in Pictures,” as well as “Emergence” by Temple Grandin and Margaret Sciariano.

For Emily Gerson Saines, Executive Producer, this movie has been a labor of love for nne years. A parent of a child diagnosed at three, she was given Temple’s autobiography, “Thinking in Pictures,” by her own mother. The book became a source of inspiration for her in raising her own child.

Temple is well-known for her ability of thinking in pictures, and I was therefore curious as to how she would react to seeing her life in images created by others, not necessarily the same pictures she has in her mind about her life. Temple discussed her thoughts with me about the movie.

How much input did Temple have on the making of this movie?

“I gave input into the screenwriting, spent a good amount of time, four days, with the writers and two days with the director. I think they did a great job. They built a cattle dipping vat based right on my original, off of my drawings. My drawings are all over the movie; I really liked that. In a scene near the end of the movie, I am selling a job to one of the meat plants, my drawings are out on the conference room table. Well, not my originals, I copied them at Kinko’s! They did really cool animations of the conveyor system for handling cattle at the slaughter plant from those drawings – really cool animations taken form my drawings – they really emphasized my projects. The cattle stuff was very accurate. They showed all the sexual discrimination I had to put up with in the livestock field. Women did not work in the yards back then just the office. It’s a lot better now.”

What was it like for Temple to see Claire Danes playing her?

“Weird. It was weird to see me on the screen. It was like going in a weird time machine, going back in a time machine into the 60’s. They put a wig on Claire and dressed her up in clothes and she had to wear these ugly false teeth apparatus. She looked like me, except she was shorter than me and we couldn’t do anything about that, but she sounds and moves just like me. She does accurately portray how I would act in the 60s and 70s. Claire did a great job.”

How did Temple help Claire prepare for the role?

“We met in New York for a half a day and I gave her all my tapes of me, of old lectures from the late 80’s, early 90’s and an old Larry King show I did. I only had still photos from childhood; they didn’t take video in our house then. Claire had a voice and movement coach.

Did the film attempt to portray how Temple’s mind thinks in pictures; and if so how did they do that?

“The movie is great. They really showed how my mind works. They have a neat scene where they show how I think in pictures, very effective. I love how they showed that. They showed sequentially pictures of ‘shoes’ that is exactly how I think – like snapshots of different types of shoes: high heels, flats, all different types and shapes and colors.”

What was Temple’s favorite aspect of the movie?

“The visualizations and they way they used my drawings. They showed the optical illusion I built, the science teacher challenged me to do that, the Amesʼ “Distorted Room. They built a working squeeze machine I designed and the gate at my aunt’s ranch.”

What was it life for Temple being on the movie set, watching them put her life story into pictures?

“I only watched a small part of it being filmed. I watched it through a monitor because I didn’t want to make Claire nervous. What really interested me was the number of people on the set that had Asperger’s Syndrome. Smart people. Let’s just say they weren’t sweeping the floor. They are all part timers. There are a lot of technical jobs in production and it was like a big construction project.”

What message does Temple want people to take away from seeing this movie?

“I hope one of the things they get from it is the importance of a good teacher and mentors. Mr. Carlock (David Strathairn) saw that I had some areas of strength and he developed that. He spotted my ability with science; mentors are attracted to ability. Sometimes you find the mentors in the oddest places. In fact, the first meat plant I ever went to, I got in because I met the wife of their insurance agent, because she liked my hand embroidered shirt.

People are going to hire you because of your skill not your personality. You need to have a portfolio to show them what you can do. When I first went into the American Society of Agricultural Engineers, they thought I was weird, they didn’t even want to talk to me. Then I whipped out the cow dip vat drawing and that made them respect me.

Also, it’s important for people with Asperger’s to understand they need to make things that people want in order to make a living. Like the opening gate at my aunt’s farm – I would get upset at my aunt, but I ended up building the gate my aunt (Catherine O’Hara) wanted. I figured out how to open the gate without getting out of the car. This gate – it solved other’s people’s problems. That’s something you can make money from. The gate was an early project at age 16 before I made the squeeze machine. I hope this movie inspires a lot of parents.”

What is it like for Temple to know that there is a movie of her life out there?

“Well, I’ll never get a fat head. I’ll go on the movie tour, and go on my book tours, and then I’ll come back here. I never forget what my real job is, which is my livestock stuff. Today, I’m having lunch with one of my students to discuss a project we are working on together. That’s my real job.”

A few days after talking to Temple about the movie, I was given the opportunity to see it. I have to agree with Temple. It’s a great movie and not just for people interested in autism or cattle, because It’s a wonderful, inspirational, and entertaining story. The messages that Temple hopes people will take away are true for everyone, not just those with Asperger’s, especially in this economy. As a friend of Temple’s I was impressed with Claire’s interpretation of her: she really sounds and moves like Temple. As a former production professional, I appreciated the effort and care with which they took words on a page and translated them into sounds and images that accurately portrayed a person who is a hero to many of us – not an easy thing to do. As a parent of a child with autism, I could not help but relate to Temple’s mother, Eustacia Cutler (Julia Ormond), and was moved to tears during the final scene. Watch this movie, you’ll be glad you did.

This article was first published on HuffingtonPost.com, January 13, 2010.

Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Articles, Autism Life Skills, Employment, Huffington Post, Parents of Children with Autism, People with Asperger's Syndrome, Resources For, Siblings of a Child with Autism, Transitions

Tags: , , , , , , , , , , , , , , , , , , , , , , | No Comments »

Dear Santa

By Chantal Sicile-Kira |  December 24th, 2009 |  Print Print  | 

Dear Santa,

This year, I am not asking for a cure for breast cancer, or cures for world hunger, ignorance, the crappy world economy, homelessness, the negative aspects of autism, greediness, war, global warming, or any other crisis facing the world today.

This year, I am being purely selfish and asking for fulfillment of a few basic needs for my family. I realize that compared to others, we are a very fortunate family because we have a roof over our heads, and my husband and I still have work (although we are making only 2/3rds of what we were making the year before and the cost of living is way higher, but why quibble?).

At the risk of appearing greedy, here is my wish list for what I would like to find under the tree this Christmas :

1. $100,000 for a college education for my daughter, Rebecca. She is graduating from high school in June, and according to the local papers, she will be lucky if she graduates from a state college or university in 5 or 6 years, if she gets in at all. Our beautiful state is broke, so there will be less students admitted to the colleges in fall 2010. Rebecca is applying for scholarships, and working some, but it’s not going to be enough. There is not much in the way of student loans anymore. We have equity in the house, but we need to save it for real emergencies, like if our income continues to spiral downward (oh, and our son requires 24 hour support, and how are we going to pay for that?). Please, can you help us here? We’d be grateful even for a quarter of that amount.

2. A bigger iPhone for my son, Jeremy. I know this may sound like a weird request, but he can’t talk very much due to his autism, and Apple has this great program called Proloquo2Go which can give him a voice. Problem is, the iPhone keys are really too tiny for him. Jeremy uses another assistive technology device, but it is heavy, hard for him to push the buttons, and frankly looks very ‘special ed.’ Not only that, but it costs a small fortune compared to the iPhone, and breaks down often. Communication is key to being an active part of society, and looking cool is important at his age. Please tell me you agree and grant this wish.

3. If you don’t have any pull with Apple re: the iPhone, another wish high on my son’s list is a girlfriend, because besides communication (and $$$) what is life without love or a warm body to hug? I’m sure living at the icy North Pole, you and Mrs. Santa can relate to that. Seems like something a mom shouldn’t have to ask for her son, but although my Jeremy is buff from working out at the gym and really cute, he’s not typical boyfriend material what with his autism and all. Funny thing is, Jeremy doesn’t understand why I just don’t run out to Costco and get him a girlfriend – I’ve been getting him everything else he needs all these years like occupational therapy, speech therapy, physical therapy, vision therapy; why not a little massage therapy? Maybe you can help with this one?

4. For my husband and I, my request is not that you give us anything, but we would like you to take back the 15 extra pounds each that we have put on stressing out on #s 1,2,3 above on our wish list. Feel free to re-gift them to someone else who could use a little fattening up. We would be happy to know that we are helping a family in need.

5. Last, but not least, For our dog, Handsome, and our cat, Gabe, a year’s worth of food would be helpful. We’ve had to start rationing and Gabe keeps trying to get outside to hunt for her dinner, and we really like the birds in the area – we don’t want them to end up in Gabe’s tummy.

I guess that’s it for what we’d like to see under the Christmas tree this year. I know there are people worse off than we are, and I feel guilty even sending you this letter. I hope you understand.

Thank you in advance, Santa. We wish you and Mrs. Claus, all the elves, and the reindeer, a very Merry Christmas and a Happy New Year!

Sincerely,
Chantal

Posted In: Adolescents and Teenagers with Autism, Communication, Huffington Post, Love and Relationships

Tags: , , , , , | No Comments »

Open Letter to Governor Arnold Schwarzenegger

By Chantal Sicile-Kira |  August 24th, 2009 |  Print Print  | 

Dear Arnie,

I hope you don’t mind me calling you Arnie, but I feel like we have a lot in common. My family also immigrated from Europe to follow the American Dream, and a couple of years ago I had the pleasure of meeting one of your wife’s relatives — Anthony Shriver — when we were both invited to speak at the Shafallah Center for Children with Special Needs in Qatar. Also, your oldest daughter, Catherine, was born the same year as my son, Jeremy, and my daughter is a few months younger than your Aurelia. And did I forget to mention? We live in the same state. So, I feel close to you.

Arnie, I’m writing to you today in regards to a topic I know you are sick of hearing about. I promise, I’ll keep it short. It’s about the budget. I just want to know, have you forgotten the nice things about living in the old country? I’m not sure about Austira, but I know from personal experience that in France, Germany and the UK, they take care of their young, their sick, their old, and their disabled — those who are now who are suffering the most from the budget cuts here in California. By the way, I’m still trying to figure out how we got into this position; I heard that if California were a country, it would rank among the ten largest economies in the world, interesting, huh?

Speaking about budget cuts, my friends are always picking on me about the French only working 35 hours a week and how the system over there is going broke. Well, now all my friends working for the different California state departments aren’t laughing anymore — they are being forced to work as little as the French (you know, those unpaid furlough days they have to take?) — and our beautiful state is still broke. Big difference — in France — the same workers are getting health care and 5 weeks paid vacation, nice pensions, can you beat that? Weird, huh?

Granted, Europe is not perfect and it was hard to be a self-made man back then in the old days, (easier now, so I have heard). When I was over there working in TV and film, I could not get an education for my autistic son (I hear that, too, is beginning to change). But when I was pregnant with my daughter, Rebecca, the French doctors realized from the pre-natal care that they had insisted in providing me,  that she was going to be born with a certain medical condition. Rebecca required shots, blood tests, medication and frequent monitoring. They gave her excellent medical care (all for free) for a year and continued to monitor her afterwards. Thanks to that preventative and early intervention, today she is healthy, and on her way to becoming a productive member of society.

My French grandmother lived in Paris till she was 96, bless her heart, and she did not have to worry about having a roof over her head and enough food to eat (what with rent control and all). Memere had health care workers visit once a day, and when she could not climb the stairs anymore she went to an old age home which was an old Victorian house — where many of her former neighbors lived. She enjoyed the last of her days without worrying about how she could afford to eat and sleep. Memere was a factory worker, and she had her pension, and medical care, too.

In comparison, my mom has Parkinson’s, she is stuck in a wheelchair and lives in a nursing home down the street from me, and believe me — you don’t want to now how much it costs. I’m not sure what we are going to do when Maman’s money runs out.

Meanwhile, I have raised my son, Jeremy, despite his severe autism as best I could, and he has become an inspirations to many in the autism community. You can see for yourself on MTV’s True Life, in “I Have Autism.” In fact, his story was picked as the one of the tops 5 most inspiring moments for overcoming challenges from a couple of hundred True Life Stories. Last fall, he passed the California High School Exit Exam, all by typing with one finger. Pretty amazing, huh?

Arnie, I love the whole self-made man and the “American Dream” that made you move here years ago in the first place — which is why I was so thrilled when the state of California started some self-employment projects for people with developmental disabilities. My son and I have been involved in a few of these projects; he is all for pulling his own weight. ‘Course now with all the budget cuts, I’m not sure what is going to happen to him and his American Dream.

Which reminds me — right now, my husband still has a job, although it is in construction project management, so who knows how long that will last. I kinda worry sometimes what will happen to our family — our nice middle class tax-paying family if the construction business completely dries up. And I’m sure we can’t be the only ones losing sleep and worrying over stuff like this.

Now, I know I am rambling here — I’m almost done — but did I tell you about my Rebecca? I’m very proud of her, too. She is going to be a senior in high school and we are going on a road trip next week to visit some University of California and State College campuses in California. I don’t have the heart to tell her it is probably a waste of time — with all the budget cuts I’m not sure she will get in (even though she is an excellent student) because they are admitting less people next year — what with the budget cuts. Even if she gets in, I’m not sure how we can afford it, seeing how Rebecca’s brother and her grandma are going to be depending upon us more and more this coming year.

Hey, I read yesterday in the Sunday New York Times that Tom Arnold says he is making a movie with you in 14 months — it’s going to start shooting the day after you leave office? He says there is no plot or script determined yet. He said, “It’s not going to be called ‘True Lies II,’ but it might as well be…” Well, that’s pretty funny, though I don’t think he meant it quite that way.

But actually I have an idea for your first movie when you leave office — it goes like this: you take a wealthy state like California, and you take away the social supports in place for the children, disabled and elderly; you force those who have government jobs to close their offices a few days a month and take a cut in pay; drive the unemployment rate up to 10%; you mix in a few natural disasters like wildfires in San Diego, Los Angeles and Santa Barbara; add an earthquake in San Francisco; and — but wait! Didn’t these things happen already? LOL — I guess it can be a reality TV show!

Actually, I think we could all use a good, funny comedy when you are back in Hollywood, don’t you, to take our mind off our troubles? Come to think of it, going to the movies is not in our budget anymore. Hope it doesn’t effect your children’s future if most Californians can’t afford movie tickets anymore, either. Actually, it probably won’t even make a dent a your finances. “Funny the way it is, if you think about it, somebody’s going hungry and someone else is eating out.” Dang! This darn Dave Matthews song keeps playing in my head! So annoying.

Now please, Arnie, don’t get the idea I’m blaming you for all this. I understand it takes more than a few years and a few people to get us into a mess like this. But, right now, you’re the top man — “the buck stops here.” Which reminds me — I read the other day in my local San Diego Union Tribune that LA City Hall paid an estimated $1.4 million on police protection and other services at Michael Jackson’s memorial, including $48,000 on sandwiches brought in for police from 70 miles away. Those must have been some sandwiches! (You know, sometimes I’ll go that extra mile for a cheeseburger from In-and-Out, but I digress). Anyhow, I’m a big fan of Michael Jackson, but where did all that money come from to pay for this?

Well got to go — need to write a letter to President Obama. Gotta let him know I can’t afford to volunteer for the community anymore. Got to spend every free moment earning money or taking care of my mom and son. By the way, I’ve spent money traveling around to advise different autism taskforces around the state these last few years — do you think I can get reimbursed for expenses? I could use the gas money now.

Please give my best to your lovely wife, Maria. I really do appreciate all that she and her family have done for the developmentally disabled — Special Olympics, Best Buddies. God knows we need these volunteer programs now more than ever.

Thanks for all you do,

Chantal

Posted In: Adults on the Autism Spectrum, Employment, Huffington Post, Transitions

Tags: , , , , , | No Comments »

Breaking News in San Diego: The Marines are Looking for A Few Good Men

By Chantal Sicile-Kira |  June 1st, 2009 |  Print Print  | 

This morning, the headline of my San Diego Union Tribune read: Case stirs military recruiting questions – Autistic man in brig, facing court-martial.  I read this after helping my son – who is non-verbal and severely impacted by autism – get on his special education bus for the ride to high school. He too has been recruited by the military.

How Pvt. Joshua D. Fry was recruited – he lived in a group home and is under limited conservatorship – is beyond comprehension. However, I get enough emails from parents to know they deal with recruiters all the time. I even wrote an article about my son’s experience.

Please understand I am not anti-military (some of my closest relatives serve and I support them) or against people being enlisted who are on the spectrum and able to serve (I have friends with Asperger’s Syndrome who probably would do a fine job in the military). This story makes me wonder where the recruiters go fishing for non-autistic, supposedly neurotypical people to serve their country.

Having raised a person severely impacted by autism for 20 years, I have learned the only way to survive is to laugh at all the absurdities we parents are often subject to. So if you do not enjoy sardonic wit, I suggest you do not read the following article I wrote which was first published on www.ageofautism.com:

“The Marines are Looking for a Few Good Men”

Rarely does the war in Iraq coincide with the war on autism in my house. Yet a few months ago, the phone rang and my hands were full of crap, literally. Normally, I would have let voice mail pick up, but I was expecting a call from my daughter. I ran to the phone and picked it up with the rubber gloves I was wearing. I was in the middle of cleaning my 18-year-old autistic son’s most recent failed attempt to make it to the toilet in time. Timing is everything.

“May I please speak to Jeremy?” requested a strong male voice. This is an unusual request in my house, as my son Jeremy is nonverbal. “He can’t come to the phone right now. Who is this, please?” I asked. “Take this number down, and tell him to call Ron,” the male voice instructed. “What is this about?” I inquired. “I’m from the Marines. I’m calling all the seniors from Torrey Pines High School, and I want to tell Jeremy what we have to offer.” “Really,” I replied, “Do you offer toilet training? I’ve heard you are really good at teaching bed making, standing in line and following directions. We are still having trouble in those areas, too. When can he start and where do I bring him?”

Actually, that was the conversation going on in my head. I just laughed and told him my son was autistic, nonverbal, and couldn’t talk on the phone. When you have a son as disabled as I do, you learn to be grateful for the smallest things. Like the fact that your son will never be eligible for active duty and that he doesn’t risk the possibility of getting killed in Iraq.

A short time later, Jeremy received a letter from the Selective Service System, who obviously were still looking for a few good men. This letter informed Jeremy that since he was now 18, he was required by law to register for selective service. Included was an application to fill out listing three categories of possible exemptions. As I read the application, I thought “OK, I’ll just have to check one of these off for Jeremy and mail it out.” To my dismay, there were only three possible exemptions listed: “Females”; “Members of the Armed Forces on full-time active duty”; and “Men who are unable to register due to circumstances beyond their control, such as being hospitalized, institutionalized, or incarcerated.” 

I couldn’t believe it. My son did not fit into any of those categories. Where was I supposed to check for “Males over the age of 18 who require 24-hour care because of their disability”? Was I supposed to sign Jeremy up and send him with his own private support person if he were ever drafted?

So I decided to get creative. I drew my own box at the bottom of the list, checked it off and wrote next to it “My son is severely impacted by autism and requires 24-hour care
and help with all of his every day living skills. Please see attached documentation.” I thought that would be the end of it.

Lo and behold, a few months later, Jeremy received his legal proof of registration card from the Selective Service System. He also received a pamphlet extolling him to “DISCOVER THE CAREER YOU WERE BORN TO PURSUE,” and informing him that they had “MORE THAN 4,000 JOBS TO EXPLORE,” and my personal favorite “88% OF OUR JOBS TRAIN YOU FOR A CAREER OUTSIDE THE MILITARY.”

Now, as a an expert on transition to adulthood services for those on the autism spectrum, I started fantasizing here. According to the 2002 report published by the President’s
Commission on Excellence in Special Education (ordered by President George Bush), unemployment rates for working-age adults with disabilities have hovered at the 70% level for at least the past twelve years. The Commission found that poor implementation of federal laws and policies in effect to help disabled students transition to competitive employment or higher education was one the reasons for such a high rate of unemployment.

Well, what if we put the Selective Service System in charge of transition programs and special education services from high school on up? They seem to be good at job development and effective at implementation of federal law and policies.

I continued to read the pamphlet…. “Choosing a career is a big decision. What do you love to do? What are you good at?” Gosh, these are the same questions I ask the teens and young adults with autism in my line of work. “Join the military and find out.”

Seriously, I doubt I could ever get Jeremy to agree to join the military, even if it offered him a guaranteed career. During the 2004 presidential debate, my son sat with us in the family room, flicking a piece of string, seemingly impervious to what we were watching for two hours. Back then, my son was just learning how to use a letter-board as a means of communication and we were unsure of how much he understood of what he heard. (As shown on MTV’s True Life episode “I Have Autism,” Jeremy has recently mastered the use of a Litewriter, a piece of assistive technology that speaks out what he types).

The next day in a workshop, Jeremy was asked to demonstrate his letter-board capabilities to a group of people watching on a video monitor in a separate room.

Soma Mukhopadhyay, educational director of HALO, presented a letter-board to Jeremy and said,  “Hi Jeremy.  Nice to see you. Do you want to tell me about something you did or something you watched on TV yesterday?”

SAW ON TV, Jeremy spelled out.

“What did you watch?” asked Soma

DEBATE

“Who do you want to see win the election, Jeremy, The democrats or the republicans?”

DEMOCRATS

“Why?”

STOP THE WAR

“What happens when we stop the war?” inquired Soma.

SOLDIERS CAN COME HOME

All this just goes to show, my son may be autistic, but he definitely isn’t stupid.

Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Communication, Huffington Post, Transitions

Tags: , , | No Comments »

Where would we be without our mothers?

By Chantal Sicile-Kira |  May 10th, 2009 |  Print Print  | 

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

Posted In: Huffington Post, Uncategorized

Tags: , , , , , , | No Comments »

Swine Flu and Paranoia, North of the Border

By Chantal Sicile-Kira |  May 1st, 2009 |  Print Print  | 

Recently I traveled to Mexico (see Autism and Hope, South of the Border) and came back really sick, so sick that I visited my medical clinic three times in two weeks. Last Friday, I actually got to see my regular doctor, but that was before we knew the swine flu existed.

Over the weekend, I started getting the phone calls from friends.

“What, you’re still sick? You never get sick like this! Didn’t you just come back from Mexico?” “Well, did you get tested for swine flu?”

I started getting worried, so I called my sister Dominique. She’s a nurse practitioner, and she knows everything, medically speaking. I guess you see a lot of interesting things when you work in the ER of a hospital in Greenwich Village. “You should get tested, seriously. It’s a pandemic alert level 4,” she tells me. I had no idea what that meant, but it did sound scary.

I decided to poll my facebook friends. I filled in the “What’s on your mind?” space with “OK, so I came back with an ear infection and really sick from South of the Border a couple of weeks ago. Should I get tested? I hate wasting my time. Am I being paranoid?” I have 822 friends, but only 9 cared to comment. They all said I should get tested.

I took a break from this strenuous decision-making process and went to visit my mom who lives down the street in a skilled nursing facility. There was a big sign on the door: “DON’T ENTER IF YOU HAVE BEEN TO MEXICO OR THINK YOU MAY HAVE SWINE FLU”. Great, now I was really getting paranoid. My iPhone buzzed and I got a text from my sister. “I think you should be tested ASAP,” it read.

I decided to call the doctor’s office and let them decide if I needed to be tested or not. I was still sick, and if I was possibly carrying around something I could spread to others, I guess it was the right thing to do. Sheepishly, I explained to the office staff person that because I’ve been sick ever since I came back from Mexico, I wondered if I should get tested for the Swine Flu.

“What are your symptoms?” he asked.

“Well, my ears were all plugged up which turned out to be an ear infection. And it started with a sore throat. I still feel terrible.”

“I’ll talk to the doctor and get back to you,” he said.

An hour later the phone rang. “Do you have, or did you have, a high fever?” This question always poses a problem for me. When I feel crappy, I usually pop tylenol or ibuprofen, anything to feel better. Of course, this reduces any fever as well. He asked me about a few more symptoms, and as he described them, I felt them coming on. “Do you feel achy all over?” I tried to remember what my initial symptoms were, and of course I then ached all over and I felt even sicker. I was really paranoid now, but still felt stupid for calling in the first place. He tells me he will talk to the doctor and get back to me.

I turned on the radio for a little distraction, and I listened to the news on NPR. “There are misconceptions about how the swine flu is spread,” the announcer says. “Some people think they can avoid it by not eating any pork….”

“Well, I definitely didn’t catch swine flu in Mexico, I was staying in a vegan household,” I tell myself.

“…. But the reality is it is spread by human contact. People should wash their hands and use alcoholic…..”

“Unfortunately it was also a “dry” household,” I remember. A week in Mexico, and no tequila!

“….gels and avoid sharing utensils and cups..”, continues the announcer. I’ve had enough, so I switch off the radio.

A little later, the doctor’s office calls back. “The doctor said not to worry, and there’s no need to get tested,” the person said. “Great!” I replied.

This evening, I heard on the local news that a baby died of the swine flu in Texas. “All of humanity is under threat,” Dr. Margaret Chan, director-general of the World Health Organization, said during a news conference in Geneva. I guess it is true because World Health officials have raised the pandemic alert level to 5 (out of a possible 6), and in Egypt, health officials ordered the slaughter of 300,000 hogs.

Some officials in Washington are calling for the borders to be closed between here and Mexico. President Obama says that’s not going to happen, “That would be like closing the barn door after the horse has escaped.”

I’m sure he meant to say pig, not horse.

The local news continued, reporting that two new cases of swine flu were confirmed in San Diego County, and that there is one possible case at San Diego State University, where officials said a female student sickened by what could be Swine Flu would not be allowed back on campus until she had fully recovered.

In other local news, there were reports of local San Diego residents acting pig-headed and hogging the road more than usual, but so far any connection to the swine flu outbreak has yet to be established.

This first appeared on the Huffingtonpost.com on May 1, 2009

Posted In: Huffington Post

Tags: , , , , , , , , , | No Comments »

Autism and Hope, South of the Border

By Chantal Sicile-Kira |  April 27th, 2009 |  Print Print  | 

Autism knows no geographical boundaries, so in honor of World Autism Awareness Day, I decide to head south of the border instead of attending awareness events in the United States. When I arrive in Puerto Vallarta, Bryan McAllister is waiting for me at the airport. I have come to spend a week with Kerri Rivera, director of the AutismO2 clinic, the only place in Mexico that offers biomedical and behavioral treatment – and hope – to Mexican families impacted by autism.

Bryan is a nurse who specializes in ozone therapy and he works at the clinic. I ask him how he met Kerri. “On ebay. Her husband Memo was looking to buy a vintage Desoto car and I was selling one. Memo wanted it to use for parts for a 1951 Desoto limo they own,” he explains. Somehow, Kerri and Bryan got talking about the clinic she and Memo were starting up, and Kerri convinced him to move down here.

That’s how movers and shakers like Kerri are – persuasive and inspiring and able to convince people to share their vision. In Kerri’s case, the vision was that of a not-for-profit clinic funded by money paid by those who could afford Hyperbaric chamber treatments, thus offsetting the costs of autism treatments for those who could not.

Two years later, the afore-mentioned vintage Desoto is still sitting at the border, waiting to be shipped and for all the necessary import/ export paperwork to be filled out. But Bryan is here and the AutismO2 clinic is up and running – some things just can’t wait. Like most non-profit autism organizations, a child was the inspiration behind the vision Kerri had. In this case the force is Patrick, Memo and Kerri’s youngest son, who regressed after receiving the DPT,HepB, infB vaccine (5 shots in one) at two years of age. Patrick, now 8 years old has benefited greatly from different types of biomedical treatments, as well as behavior therapy.

Mexico has been Kerri’s home for 14 years now, ever since she created a family here with her Mexican husband Memo. When Kerri first met her husband when she came here to study Spanish, little did she know that they were destined to be married years later, and eventually become a driving force in the Spanish- speaking autism community.

After their son Patrick was diagnosed with autism, Kerri began to look into treatments and realized she would have to travel often to the United States if her son was going to recover or improve. Kerri realized that nothing was available in Mexico, and wanted to bring help and hope to the many families impacted by autism who could not afford the treatments, and who had no access to resources in the United States. In January 2006, Kerri met with Dr. Bernard Rimland, founder of the Autism Research Institute in San Diego (the border town I live in) and long considered the godfather of the movement for understanding the biological treatment of autism. With his blessing Kerri and Memo had the Defeat Autism Now (biomedical treatment) protocol translated from English into Spanish. Two weeks after Dr. Rimland passed away, the clinic AutismO2 was opened. “Nothing we do on a daily basis here at the clinic to help families impacted by autism would ever have happened without Bernie Rimland,” Kerri tells me.

Kerri, inspired by Dr. Rimland, became proactive when her son was diagnosed, becoming both a Rescue Angel for Generation Rescue, Jenny McCarthy’s autism organization, and a mentor to mothers of newly diagnosed children for Talk About Curing Autism (TACA). Kerri continues to provide information and help to people all over the world in both Spanish and English in those capacities. But she and Memo wanted to do more. In 2006, Kerri and Memo founded Bebepingo AC, the non-profit structure that funds the AutismO2 clinic, by buying a hyperbaric chamber that people here in Puerto Vallarta use for a variety of health reasons – for Multiple Sclerosis, Cerebral Palsy, Down’s Syndrome, autism, arthritis, rheumatoid arthritis infections, and diabetes to name a few. Proceeds from the treatments in the chamber go towards helping the children with autism from low-income families that they treat at the clinic. Besides the chamber, the clinic offers behavioral therapy, nutritional and supplement consulting, and information on the Defeat Autism Now (DAN!) biomedical protocol, as well as IV chelation, and ozone therapy provided by Bryan, who has worked with ozone treatment for 17 years. The AutismO2 clinic is the only clinic of its kind in Mexico, a country with no practicing DAN! Biomedical doctor or behavioral therapy clinic.

In Mexico, “hope” is not a word usually associated with autism, as there is very little on offer for children who have autism. Hope, however, is apparent not only in abundance at the AutismO2 clinic, but also in Kerri and Memo’s home. Parents and the children who have traveled great distances to receive treatment, drop in to discuss nutritional support with Kerri, share the midday meal, or just to say “hola.” Besides Patrick, Kerri and Memo have an older son, Alex as well as three dogs and 3 cats that add much warmth to this already nurturing home. While I’m there, I meet Luis Cisneros and his 5 year old daughter, Diana, who has Down’s Syndrome has begun to talk after 10 hyperbaric treatments and change in her diet as well as nutritional supplements. I also meet Dr. Edith Vela, who runs a small ABA program for her son and three other children in her living room because there are no schools willing or able to teach them in Mexico. Edith’s son, Alex, has also responded well to treatments; this is his second stay in Puerto Vallarta to access the services at the clinic AutismO2. While we are eating lunch and visitors drop in, Memo explains his reason for donating so much of the family’s time, money and energy to AutismO2. “It is a wonderful thing to see children getting better. How could I not help these people when I see how much of a difference it is making in their lives, in my son’s life?”

The day I leave, Kerri drives me to the airport. She slows down as we pass a Holiday Inn. “There, near the flags in front of that hotel is where I met Memo for the first time. I was waiting for some college friends to play tennis, and he was meeting up with some friends as well,” she explains, smiling and enjoying the memory.

What a fortuitous day that was for Mexican families impacted by autism.

This first appeared on the Huffingtonpost.com April 27, 2009

Posted In: Huffington Post

Tags: , , , , , , , , , , , , , | No Comments »

From the fires in San Diego

By Chantal Sicile-Kira |  October 27th, 2007 |  Print Print  | 

Tuesday morning:    Here in San Diego, life continues to be surreal. We’re hunkered down in my niece’s tiny one bedroom apartment as parts of the county continue to burn. We are the lucky ones. We sit in comfort, eating chocolate, eyes glued to the TV, each with our own laptop, communicating to people on the other side of town. Our house is still intact, and we have a place to stay out of the danger zone. On the TV, we see homes burning. We don’t really want to watch this destruction, but on the bottom of the screen they are scrolling the names of the neighborhoods that people are allowed to return to, and we hope to see ours listed. It isn’t, although they are allowing people in a couple of miles away. We discuss whether or not we should head back to our home anyway.

My husband wants to go. I don’t, I figure there is a reason they have not released our neighborhood. We live in Carmel Valley, and with the Santa Ana winds our little valley can become a wind tunnel channeling the fire right to the ocean, which is why they evacuated us in the first place. Besides, when I was growing up in Ohio I lived through too many tornados to feel the danger is over. No matter what the prognosis, mankind still has no control over wind patterns, as far as I know.

Outside my niece’s apartment the sky is orange and ashes are falling and it smells like a forest on fire. Not surprising. We have lots of free time to go walking, but it’s not a good idea to breathe in air that you can see. Meanwhile on the tube, they announce that schools will be closed all week in all school districts in the county. Rebecca, my daughter who is a high school sophomore, is thrilled. She is less thrilled when she finds out that the concert we have tickets to go to tomorrow night at the House of Blues is also cancelled. We were supposed to see Boys Like Girls, All Time Low and The Audition. This is the third time Rebecca attempts to see The Audition with no success, at this point she thinks this fire is part of a conspiracy. My 18 year old son with autism is happy enough, he’s got his favorite book and his ribbon. When asked how he is doing he spells out on his letter board “GREAT I’M WITH FAMILY. I’M HAPPY WE ARE HERE.”

I am still worried about friends I have not been able to reach in some areas I am seeing highlighted bright red fire zones on the TV. A conference on self-employment for developmental disabilities that my son and I were supposed to speak at in a suburb of San Diego on Thursday has been cancelled. Meanwhile I am getting emails from people in other parts of the world asking for answers on projects I am working on and expecting me to meet certain writing deadlines. This makes me realize how although we San Diegans may feel like our lives are on hold, and we are consumed with thoughts about essentials such as food and shelter, to the rest of the world, it is life as usual and the fires are just another item on the evening news. And really, when you think about the fact that 2.5 million people have been driven from their homes in Darfur, Sudan and that millions of others face murder, rape, torture, malnutrition, and disease over there, my little situation here doesn’t seem so bad.

Tuesday afternoon: Back on the tube, Gov. Arnold Schwarzenegger is on screen along with both Homeland Security Secretary Michael Chertoff and FEMA Administrator David Paulison. President Bush has sent them to get a first-hand view of the disaster. To be honest, I don’t feel comforted by their presence. Those of us watching can only hope the federal government has learned something since Hurricane Katrina. Arnold tells us how great the San Diego locals are being to their neighbors, pulling together to help each other and how the evacuation centers are overwhelmed with volunteers and needed supplies. It is true that San Diegans are a very neighborly population, one of the reasons I like it here. In my 11 years of living here with a severely autistic child with weird behaviors, I have seen only kindness from strangers when we are out in public. Not so in other places.

Gov. Schwarzenegger tells us he has asked President Bush to declare a federal emergency for seven CA counties to speed disaster-relief efforts. This is good news. He tells us President Bush is coming on Thursday. I’m not quite sure I understand why. Perhaps he is going to open up some of the extra bedrooms in the White House to those who have been forced to evacuate and have lost their homes, and he is going to interview some appropriate locals to be prospective roommates. When Gov. Schwarzenegger and company are done speaking, the local newscaster jokes that Arnold must have bought a home here, he and President Bush seem so involved and touched with what is going on down here. I have a feeling it is really because San Diego County is a Republican stronghold. Call me cynical. I might add that much of the homes we see burning are in neighborhoods a bit different from the parishes devastated in New Orleans and most of them are owned by whites. I am not saying that this makes their devastation any easier – losing your home sucks no matter whether it is a shack or a mansion and irregardless of the color of your skin – but I don’t get the feeling that Bush and company are down with the brown.

Meanwhile we have to leave the house for a provision run to the 99 cent store down the street. We are running out of toilet paper. Some things you just can’t do without unless it is a matter of life or death, or you are unlucky enough to be homeless in Sudan. Since we have ventured beyond the front door, we decide to brave the haze and head for the local pier. The sun looks bright red and very eerie through the smoke and our sinuses are starting to act up. Looking down into the ocean off the pier, we see the surfers are out in full force. Surfers are a dedicated bunch and it feels great to see a bit of every day normalcy after all the images of doom and gloom on the TV and internet. It is nice to see so much water after feeling so much dryness.

Tuesday evening: When we get back to my niece’s apartment, I check my email. I’m still trying to find out what happened to a few local friends I can’t seem to reach. One of them has emailed me and she is safe with friends in Hillcrest, another San Diego neighborhood closer to the center of town. I read some emails from friends and family around the world who have come to realize that this is not just the usual California brushfire. Like Arnold, I am overwhelmed by the kindness. In particular, one seminar organizer who sends me around the country to speak on autism has offered to put my family up at a hotel, and when told none are available in San Diego, finds and reserves one in Orange County, about an hour and fifteen minutes away from here. It feels amazingly good to feel so much support, yet we are hesitant to leave in case the winds change and head for our neighbors and home. Right now, we are still the lucky ones. And in reality, we would have to cross other evacuation zones and fires and we would rather deal with the devastation in our own town than in someone else’s. But we are touched and grateful for the offered gift of privacy and a swimming pool.

People in the autism community are well aware of how a disaster such as this can create particular havoc for a child with autism because most of them cannot tolerate a change in their routine or a change in their environment. We are lucky because as long as Jeremy is with us and has his book or his favorite piece of ribbon, he is OK. No meltdowns here. In other emails I see that some autism organizations in the Southern California area are already looking to see what they can do to mobilize help for those whose kids with autism are not as easy going as Jeremy. Since the schools and day programs are closed and their routine has been disrupted, many of these kid are wigging out. Add to that the fact that many of them are now living in a relatives’s or a friend’s living room and they don’t have their stuff around them, and you can understand how painful this is for them and their families. Another concern is for those who are on special diets and can’t get access to the kinds of foods their systems can tolerate.

We sit back and watch Queer Eye for the Straight Guy, the perfect show to relax to. Visions of the Fab 5 redoing our house when we can move back in or if we need to rebuild are dancing in my head. I love these guys. One of them has a parent in Rancho Santa Fe, where the fires have headed instead of our neighborhood. I hope she is OK and her house is still standing.

My brother the cameraman calls, he has just landed at LAX. He is heading out with his camera and his soundman to shoot some footage in San Bernardino before coming down to San Diego. I tell him to be careful, not to get too close to anything burning. But that’s why he’s here, Good Morning America viewers want to see and feel up close what we are going through. I hope I will get the chance to see him while he is out here.

Wednesday early morning: It’s 5:30 here in San Diego, I wake up and it still smells like everything is burning, even worse than yesterday. My eyes are stinging, my sinuses are protesting. Soot is everywhere and I’m still inside the house. That hotel room in Orange County is looking pretty tempting right now. News on the internet tells me wireless service has been provided to those evacuated to Qualcomm Stadium and laptops have been donated to evacuees there. This is definitely not a Hurricane Katrina -style stadium evacuation going on here. Final numbers for yesterday’s devastation are at 500,000 people evacuated from their homes and 1300 houses burned to the ground. My neighborhood is still not listed as a place we are allowed to go back to, but I’m hoping there will be another update later today. Still, I feel lucky. My family is here, we are all alive and safe, we have family to stay with and our house is still up. Life is good. What more could I possibly want?

This post first appeared on the HuffingtonPost.com, October 23, 2007

Posted In: Huffington Post

Tags: , , , , , , , , , | No Comments »

« Older Entries