Episodes

October 3, 2009

New book written by teen with autism offers different perspective

If you’ve ever wondered what it is like going through the wonderful adolescent years for a teen with autism, I recommend you read this new memoir, Episodes: My Life as I See It. Blaze Ginsberg, who has high functioning autism, tells us what life from his perspective looks and feels like. But Blaze doesn’t just tell us about his life, he presents his world to readers in a highly unusual format inspired by the movie-based Web site IMDb.com.

I love this book. Disclaimer: I have known Blaze Ginsberg for many years. In fact, he used to ride the special education school bus with my son, Jeremy. Blaze has always had a special place in my heart because of his unique personality, and because of my friendship with his mom, best-selling author Debra Ginsberg, (she chronicled Blaze’s early years in Raising Blaze).

But it is not just because of our friendship that I love this book. I love it because I have seen where Blaze was before, and how he has grown to be the wonderful, thoughtful, constructive person he is today. His memoir not only offers his unique perspective, but is an inspirational testimony to the necessity of advocating for your child and the importance of a close-knit group of extended family members and friends. More importantly, Blaze’s memoir offers a unique insight into what life and school is like for a teen on the spectrum, and we rarely get to hear that perspective. Watching Blaze as he matures through all his episodes,  I  feel hopeful that  my teenager –  and the rest of the family – will survive at least one pilot season.

Episodes has received  excellent reviews by actress Jamie Lee Curtis and esteemed authors such as Daniel Handler (A Series of Unfortunate Events), as well as by Publisher’s Weekly and the School Library Journal . Suzanne Crowley writes that “…Ginsberg gives readers a unique glimpse into an adolescent mind that is simply wired differently. He says, “At times being autistic is not easy; it is known for getting in the way of things. Sometimes it stops you from doing things like everyone else because you don’t understand something or it’s difficult to figure out what people mean. Also you think about things differently from other people and that can be difficult.”

Blaze’s life is still in syndication, with no predictable end; I can only wish him the best and hope to see more episodes.

This first was posted on Examiner.com on October 3, 2009

Then and Now: Reflections on Raising a Son with Autism

October 1, 2009

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

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

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

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

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

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

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

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

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

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

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

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

SIDEBAR:

By Jeremy Sicile-Kira

Jeremy tells us…

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

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

[V1] Please add date.

Open Letter to Governor Arnold Schwarzenegger

August 24, 2009

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

Autism and Adolescence 101: How do I teach my teen the concept of “private”?

July 23, 2009

This article originally appeared in Examiner.com’s Autism &Adolescence Column

It is extremely important that teenagers understand the different behaviors and conversations that are appropriate in public,  and the kind that are meant to be private. For example, touching certain parts of your body in public is inappropriate, and can even get the eighteen and over adolescents in trouble with the law. Having conversations at school that are appropriate to have at the family breakfast table but are  inappropriate  in a peer lunchroom setting, can get a teen labeled weird at school and  prevent friendships from developing.

One way of teaching the concept of “private” and “public” that can be used with different ability levels is to use two picture icons, one of a fully-clothed  figure labeled with the word “public,” and one of a figure clothed only with underwear labeled “private.”  A good time to start teaching this is when your tween is attempting to have “private time” (the euphemism in our house for masturbation) in the living room, or is still insisting on running around the house with no clothes on.

Show your tween the icons, and explain which behaviors are private and should be done in his room only, and which are public and OK everywhere in the house. For those more impacted by autism, putting the private icon inside his or her bedroom door, and the public one outside his bedroom door is helpful. Then, you can remind your tween when inappropriate private behaviors are occurring outside his room, ‘That is a private behavior you do in the privacy of your room,” and take him to his bedroom and show him the icons.  Same with appropriate and inappropriate conversations.  An adolescent female may need to be reminded that is  OK to discuss her menstrual cycle at the breakfast table at home (private conversation), but not at the school cafeteria at lunchtime (public place).

Teaching the concept of private and public  is crucial  to helping  your teen understand what is appropriate and  what is inappropriate behavior in public – a concept that will be invaluable as he or she becomes more independent.

Travel Tips for Families with an Individual on the Autism Spectrum

July 1, 2009

Transitions are usually difficult for many on the spectrum, and traveling is really a series of transitions. Preparing the person – child, teenager or adult – as much as possible will make any trip a more enjoyable experience for all involved. Some advance planning of specific steps of the trip can be made ahead of time. Below are tips for both preparing the person (1), and preparing the environment for a better travel experience (2).

Continue reading »

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

June 1, 2009

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?

May 10, 2009

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

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

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

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

Happy Mother’s Day, Maman!

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

Swine Flu and Paranoia, North of the Border

May 1, 2009

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

Autism and Hope, South of the Border

April 27, 2009

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

The Marines are Looking for a Few Good Men

March 15, 2009

Rarely does the war on 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, 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.

Low 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 OUT JOBS TRAIN YOU FOR A CAREER OUTSIDE THE MILITARY.’

Now, as 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.

Rarely does the war on 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, 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.

Low 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 OUT JOBS TRAIN YOU FOR A CAREER OUTSIDE THE MILITARY.’

Now, as 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.

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