Love, Sex, God, & Autism

LSGA1 Love Sex logo April Mitchell final web

For years, people have asked me, “How did Jeremy Sicile-Kira  become the person and painter he is today? What is your  your story? How did Jeremy’s Vision  come about?”  Well, here it is! I’ve created –  a 70-minute multimedia storytelling event appropriate for Keynotes, Fundraisers and Special Events.  This keynote can be adapted to your events needs: it can be accompanied by workshops with learning objectives, or  shortened for end-of-year-dinners and fundraisers. “Incredible … powerful… inspirational…” are comments offered by those who saw the premiere in San Diego this past July.

Love, Sex, God & Autism, is  a universal and inspirational story about resiliency and adapting to change. In my 70-minute storytelling event, I humorously and lovingly wrestle with the trials and tribulations of my family’s successful attempt to change the prognosis given to my child – life in an institution.  It’s the hysterical and heartbreaking personal account of a young man’s quest for love, and a family’s search for normalcy – or at least inclusion!  Along the way,  I explore how my upbringing  provided me with the grit and  resiliency  I would need as Jeremy’s mother. Life-changing gifts are discovered, affirming our family’s belief that being “not like the others” means being different, but not less.

For more information, or to book this presentation, please contact us at Autism College.

Transition to adulthood: Jeremy is moving into his own place!

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy is moving into his own place. Months ago, when we found out that Jeremy  received the approval and supports (from the powers that be) to make Jeremy’s dream a reality, I enthusiastically stated in an AutismCollege blogpost that Jeremy and I would be blogging about the process of preparing for this major transition – in the hopes that some of the information would be useful to others.

As John Lennon once wrote, “Life is what happens to you while you’re busy making other plans.”  Here it is, almost six months later, and we’ve had no time to write.  I’ve moved over fourteen times since I was a baby, so I’m no newbie when it comes to moving into a new home. But for Jeremy, moving meant more than just transferring to another living space. In the book, A Full Life with Autism, Jeremy and I described  some of the preparation that has been ongoing for years. Here’s what the last six months have entailed:

  • Learning to be more independent in certain home skills:  Learning physical tasks is challenging for Jeremy due to his visual processing and motor skills. Practicing in a familiar environment helps before transferring the skill to a new environment. We have to break down tasks into simple steps.
  • Learning what it means to be a good housemate: As soon as Jeremy knew that his dream was coming true of having his own place shared with another person; he wanted to know what it meant to be a good roommate. He asked a young man he knows at his volunteer job to have breakfast with him so he could ask him what to look for in a roommate, and how to be a good roommate. He had heard this man talk about his roommates, so he figured he might have advice. Then, Jeremy wrote some simple rules for himself to follow, ie “The first rule is that I need to do my dishes when I make food.”
  • Finding the right apartment in the right neighborhood: Jeremy has always wanted to live in the neighborhood he grew up in because everyone knows him. When he goes out shopping, or walking the dog or to the beach, people stop and talk to him. That’s important to him.
  • Finding the right housemate: Jeremy needed to find someone who would share the apartment with him (each have there own bedroom and bathroom). Jeremy needs 24 hour supports, and the apartment-mate would be responsible for being there most nights. LifeWorks (the company that was vendored to provide supports and supervision to make all this possible) found Jeremy’s housemate.
  • Finding the right staff: We are lucky in that we have wonderful support staff that have been with Jeremy for years, but we needed more people to fill all the hours on the schedule, and LifeWorks  found people that were a good addition to the existing Team Jeremy.
  • Staff training: Because of Jeremy’s communication challenges, training was and continues to be a high priority. New  ‘Team Jeremy’  members receive a certain amount of training so that they- and Jeremy -can feel comfortable and safe as they go about their day.
  • Preparing the apartment: Having the apartment as functional as possible for Jeremy helps him be more independent. Where everything is placed in the cupboards, how everything is organized is what makes him successful in completing tasks. Think about how someone with limited visual skills and limited motors skills needs to be able find and get what he needs for everyday life – that’s what Jeremy needs to be as independent as possible.
  • Having his sister Rebecca’s advice on his décor: Jeremy was very clear as to what he wanted in the apartment (very little) the colors he wanted (solid, no patterns and lots of green) and what he wanted to hang on the walls (a few paintings representing calmness, friendship, love). But he wanted his sister- whom he has helped move away to college and into different living situations there- to help him find the furniture needed in the living room and to help him with figuring out where to hang his chosen paintings and posters.
  • Earning the money to pay for his rent: Jeremy is responsible for his share of the rent, and he wants to earn money from his painting. Mom is helping with the marketing at the moment (anyone want a painting, prints or cards? Contact me!).

There is undoubtedly much more to add to this list, but this is a good start. At time of writing, September 1st is the official date for Jeremy’s full-time move to his apartment.  Just like Jeremy learning the skill of pointing to letters to communicate, being ready to move out away from his parents did not happen overnight. He has been preparing for this transition for many years (read A Full Life with Autism).  It’s a process, and it is still ongoing. There are sure to be bumps in the road, but that’s life. We feel grateful that wonderful Team Jeremy and LifeWorks are here to support him  as he takes the first steps of living his dream.

Need Information re Teens with Autism? Autism College course beginning Tuesday August 28

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how and when to explain puberty to your growing child? Are you at a loss about what to explain about the birds and the bees? Are you wondering what an ITP is and how to best prepare your child or student for adult life? Then the course Adolescents on the Autism Spectrum is for you.

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this interactive course will be taught on-line to a small group on Tuesday August 28, Wednesday August 29, Thursday August 30; from 6:00 pm to 8:00 pm PST (9:00-11:00 EST) for a fee. To sign up, go here.  Instructions will be sent to you within 24 hours of sign up.

The cost for the  6 hour- course over three days is  $99.00 and provides:

  • 6 hours of training
  • PowerPoints provided before the webinars to help with note taking.
  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • BONUS: Written transcript booklet from the original live course  provided in March will be provided to those who sign up (a $39.00 value – see description in the Autism College store)
  • BONUS: Opportunity to watch replay of webinar at a later date (convenient if you miss a session).

Topics to be covered during the 6 hours include:

Adolescence 101: The Teen Basics :Everything you need to know (but don’t know who to ask)

  • 13 things every parent or educator needs to know
  • The general challenges faced by ASD teenagers
  • Sensory processing challenges in adolescence
  • Functional strategies to help with daily transitions
  • Family and sibling concerns
  • Teaching about puberty
  • Hygiene and self-care
  • Masturbation

Adolescence 102: Relationships: It’s Complicated

  • The notion of privacy and consent
  • Relationship boundaries
  • Sexuality
  • Self awareness
  • Self- regulation
  • Bullying
  • Interdependence

Adolescence 103: The Transition Years: Plan, Prepare, Practice for the Real World of Adult Life

  • Preparing the transition to High school
  • The ITP- Individual Transition Program and IEPs
  • Teaching life skills needed for work and / or college: self-esteem, self-advocacy, executive functioning, self-reliance
  • Building on strengths
  • The use of mentors

Sign up now to reserve your spot! Questions? Send us an email!

The Golden Hat : Q & A with Margret D. Ericsdottir moderated by Chantal Sicile-Kira

The Golden Hat

Why did  Kate Winslet ask  over 100 celebrity friends including  Oprah, George Clooney, Rosie O’Donnell, Tom Hanks, Kobe Bryant and Leonardo DiCaprio,  be photographed wearing a Golden Hat for a book that includes photos of eleven non-verbal youngsters with autism wearing the same hat?

What are the long term goals of the Golden Hat Foundation?  What goals do you have for your youth’s future? What are your child’s long term goals?

Join the conversation on May 14 about creating  A Full Life with Autism when  Margret Dagmar Ericsdottir, President & CEO of the Golden Hat Foundation joins Moderator Chantal Sicile-Kira  to discuss  these topics.  The  one hour Q & A  on Monday May  14, 2012 will take place from 6:00 pm – 7:00 pm PST  (9:00 pm to 10:00 pm EST). Sign up for the Autism College newsletter to receive instructions on how to participate and send in your questions. Instructions will be sent via newsletter before the Q & A  takes place. (Already registered? Hold tight, the participation link will arrive soon).

The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

Kate Winslet and Margret D. Ericsdottir

Guest: Margret D. Ericsdottir is the President & CEO of the  The Golden Hat Foundation; Founder Frontier Filmworks; Co-Author, The Golden Hat: Talking Back to Autism; Advocate for Individuals with Autism; Mother of Keli, 14-year-old with nonverbal autism.  Margret Dagmar Ericsdottir, MBA, had a successful career in business and held various executive positions in Icelandic companies. Then, in 1997 Margret’s youngest son Keli was born and diagnosed as having severe autism at the age of four. The sudden and profound changes in her family prompted Margret to shift her focus from career-related pursuits to caring for Keli. In 2006 Margret founded Frontier Filmworks, and made the documentary, A Mother’s Courage: Talking Back to Autism, which describes her family’s journey.

The  award-winning actress, Kate Winslet, narrated the documentary, and subsequently co-authored The Golden Hat: Talking Back to Autism, in which celebrities and some non-verbal individuals with autism are photographed wearing a “golden” hat.

Moderator:  Chantal Sicile-Kira is the founder of Autism College, author of five books on autism. Her latest book A Full Life with Autism, was co-authored with her son, Jeremy Sicile-Kira whose photograph appears in The Golden Hat.

Everyday Autism Crap

“Nicely, kindly I need u to teach me to do my own crap.”

Such was  my son Jeremy’s response when I asked him recently in what ways we could best support him in moving towards being more independent and feeling ready for supported living. Just goes to show you that even when you are living with non-verbals you have to watch what you say. Not just in choosing your vocabulary, but also in what you complain about.

Jeremy has probably overhead me say more that a few times, “I’m so sick of this crap!” when looking at the piles of official paperwork that needs to be filled out, sent in, or filed. And the pile of stuff that just seems to accumulate everywhere if you don’t immediately recycle it or find another home for it.

So I’m not perfect (at least not when verbalizing at home). And Jeremy has been learning to do his own crap, just not enough of it. I guess we need to ante up his crap-load. Stay tuned!

 

The Marines are Looking for a Few Good Men

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.