Author, Speaker, Autism Expert

Praise for A Full Life with Autism

By Chantal Sicile-Kira |  May 20th, 2012 |  Print Print  | 

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

By Chantal Sicile-Kira |  May 13th, 2012 |  Print Print  | 

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

By Chantal Sicile-Kira |  May 9th, 2012 |  Print Print  | 

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

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.

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.

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.

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

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

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.

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