Proposed ASHA Position Statement: Rapid Prompting Method (RPM)

For those interested, the following is my letter in response to the proposed position statement by the ASHA  American Speech-Language-Hearing Ad Hoc Committee on Facilitated Communication (FC) and Rapid Prompting Method (RPM).   The proposed policy can be read here.

 Dear  ASHA Board of Directors:

My name is Chantal Sicile-Kira and I am the author of  five books on autism, an International speaker,  and I am known for my practical advice to parents and educators. Many years ago, I worked for two years at Fairview State Hospital (now called Fairview Developmental Center) and taught  functional and community living skills to the first group of young adults in preparation for de-institutionalized following the passage of the Lanterman Act. I also worked for a short time at Orange County Regional Center as a case manager to families of children with developmental disabilities.

As well, I  have 25 years of experience in non-profit leadership roles related to autism, including two years as Co-Chair, South Counties Autism Regional Taskforce, reporting to the California Legislative Blue Ribbon Commission on Autism, and two years as Member, Taskforce on Transitional Services & Supports reporting to the California Legislative Blue Ribbon Commission on Autism. I am also the parent of Jeremy, a 29 year old who learned academics and  communication skills using RPM (The Rapid Prompting Method), and continues to do so as a fully-included productive individual with a number of trained communication partners.

I respectfully encourage ASHA to withdraw the proposed position statement in regards to RPM.   I am very concerned that The Ad Hoc Committee has refused to consider input or evidence from  users and ASHA members with experience in these methodologies. Such important policy decisions should involve a careful unbiased examination of different viewpoints.  I believe that more research is indeed needed. I also believe that a  professional or parent trained in the methodology is capable of making a decision on whether or not a method is worth trying with a certain  individual, and then verifying success or not on a case by case situation.

I share my experience below with my son’s permission. We hope this will enlighten you as to how for certain individuals, RPM can be an effective method of academic and communication skills.

While doing research on educational methodologies and medical interventions  to write my books, I read about the evidence- based practices that were considered effective. I also learned  about educational methodologies and medical interventions  that did not yet have research evidence, because no research had yet been done. However, some of these interventions were effective with some individuals.  As a parent and autism professional, I believe that there are practices that can be tried and validated on an individual basis. RPM is one of those.

I first heard of RPM when doing the research to write one of my books, Autism Spectrum Disorders (2004 Penguin, Autism Society of America, Book of the Year 2004; Revised-edition 2014 Penguin).  I decided to try it with my son, as it made sense for him and his challenges. Jeremy received direct instruction from Soma Mukhopadhyay (at the time living in LA) twice a month, and I practiced with him every day for half an hour. We did this for approximately two years.

When Jeremy was born he was hypotonic. He needed physical therapy to learn to sit straight, and to use his arms and legs. Every time he learned a new skill (ie eating with a spoon or fork) he needed hand over hand prompting. He had speech therapy as a toddler,  but it was not effective (again, muscle tone challenges).  When he was 5-6 years old he had a supervised home-based ABA Lovaas program. I did ten of the 40 hours of ABA therapy a week  myself, which meant I learned about how Jeremy learned – or didn’t learn.

Jeremy learned to identify and correctly label verbally over 100 pictures. However, if you put the pictures in front of him, he could not give you the correct picture requested at a 80-100% success rate. Since he could verbally identify the objects introduced to him one by one, we knew he had receptive language.  When he was 7 PECS was tried both at home and school. He communicated using a sentence for first time using the “I want… “ sentence strip plus icons in a binder (iPads did not exist till he was out of high school). He had a difficult time choosing the icon out of the binder books and putting it on the strip (vision processing and motor challenges). He never progressed past the “I want”  sentence. Professionals over the years described Jeremy as having challenges similar to a person with CP. He continues to have sensori-motor challenges and visual processing challenges, although these have improved over the years with exercise and therapy.

Therefore, when I heard about RPM, it sounded like something that was worth trying with Jeremy. Success was slow, but obvious. It was not a “magic pill” and it did not cure his autism – but that was not my goal. My goal was effective communication  with a variety of communication partners for use in daily life and with living skills, and to allow him to make choices and decisions,  to blossom as an individual, and have a productive life as an adult.

When Jeremy was in high school he began using RPM at school with a variety of communication partners  trained and supervised by a Speech and Language Pathologist trained in FC who understood the strategy of RPM.

Jeremy graduated from high school at age 21 with a full academic diploma. He auditioned for, and was chosen to give a commencement speech at graduation. During his high school years he was able to participate in general education classes, as well as a class in journalism. In his English classes  and  his journalism class, Jeremy learned effective writing skills and his love of writing to share his thoughts and opinions. He was asked to write a monthly column for the school newspaper.

More importantly,  Jeremy was able to communicate appropriately and effectively when he was sick or in pain. He was able to make choices and life impacting -decisions  and  tell us what he was feeling.   Thanks to learning communication skills via RPM, Jeremy  now has a full  and productive life, fully – included in his community. For more details in regards to his accomplishments since high school, please read his  attached resume. (For those reading this blog post, some of Jeremy’s accomplishments are listed on his website).

Without having a way to communicate, Jeremy would never have been able to tell us about his gift of synesthesia, and we would not have been able to encourage him to follow this path as a career. As you know, the unemployment rate for autistic adults is very high. We are grateful that we found out he has a gift that can help him be productive.

If ASHA’s mission is  “Making effective communication, a human right, accessible and achievable for all,” then why  are some in  ASHA suggesting withdrawing a system of communication that is obviously effective for some people? Clearly more research is needed. But if finalized, the proposed statements would severely restrict ASHA members’ discretion and ability to exercise professional judgment. It would also and would make ASHA’s assertions about wanting to respect “client preferences and values” untrue.

I hope that ASHA does the right thing and upholds the human rights of all, including those who communicate in the manner that my son does.

Sincerely and respectfully,

Chantal Sicile-Kira

 

Show Yourself Some Love : The Importance of Self-Care for Caregivers

Those who followed my blog in the past may have noticed a lot less activity in recent years. In the fall of 2014 my son Jeremy moved out of the family home and into supported living, and found an art studio where he could paint. It has been a wonderful journey helping Jeremy create the life he dreamed of. In 2016 he had his first curated art show (which was a huge success) followed by more shows.

Then, in January 2017 I suffered a concussion when my car was hit by a truck. I spent all of  2017 following my medical team’s advice. At first it meant no activity and no screen time, followed by  various therapies, more rest and restricted screen time. Now, over a year later, I am not yet 100% recovered, but I am driving again, and I am finally able to write and speak professionally once again – although at a slower pace.

One of the results of my car accident was that I was forced to do nothing but take care of myself on a daily basis.  As a parent of a wonderful young person – Jeremy- who requires 24 hour supports, I had in the past ‘stolen’ the time to re-boot and decompress – parents with their children still at home will get this – 10 mins here, 20 mins there,  “date night”  when respite was available. As well, my mind was rarely still – I loved writing and speaking and volunteering to help others – I was always actively solving challenges and creating solutions in my head. That’s how Jeremy ended up having the skills to communicate, and discovering his gift of painting: because  I never gave up on him even if others did and I found solutions to many of his challenges. I remember getting up very early before dawn to work on a book, then going for a run or walk outside before my husband left to go to work and before I got the kids up and off to school. I always practiced some self-care that I enjoyed – I loved getting up early and seeing the night become day – I’m definitely a morning person. But I also knew that if I didn’t do it early in the day while everyone was asleep – I met not get another chance. I never knew what the day would bring.

The car accident forced me to  only take care of myself and let others take care of me as well. Meditations, connecting more with my intuition and spiritual self, massages to help my body heal, and all the necessary therapies (including physical, vestibular, vision, speech) to create new connections really made me focus on ME. And you know what? The world did not fall apart – Jeremy had a very, very  rough time for the first two months, and so did I. But we survived.

Meditation has been a daily habit for me for some time, except for about the first six months after my concussion when I could not focus. the When Jeremy was in his early twenties and  still living at home he started to have more anxiety (on top of the PTSD from past traumatic experiences). It’s a known fact that many teens and young adults on the spectrum have high levels of anxiety. At that time, I realized that Jeremy also had great visualization skills,  so I thought why not have him try meditation? He doesn’t necessarily always sit calmly to listen, but he is still able to meditate.

The first meditations he ever enjoyed were some Deepak & Oprah 21 Day Meditation Experiences.  After taking part in free meditation challenges with intriguing titles such as  Perfect Health Meditations; Finding Your Flow Meditation Challenge, Jeremy would tell me which ones he wanted to listen to again and we would buy them so he could access them at any time.

There has been an interesting side effect to Jeremy’s daily meditation habit. Jeremy is very susceptible to the energy level of whichever  Team Member is supporting him that day. If the person is feeling anxious or stressed, Jeremy feels it.  While Jeremy is meditating, the Team Member who is  listening to the meditation with him usually benefits as well:  Jeremy feels them becoming more relaxed and calm as well. Everyone benefits!

Although I loved the Deepak and Oprah meditation series, I had never visited the Chopra Center. I knew it was somewhere in my area and realized people flew in from all over to take part in retreats and consult with the Mind – Body Medical Group. But it wasn’t until very recently that I learned that there were opportunities for those living close by to go to their take yoga and meditation classes, and to enjoy different Ayurvedic massage treatments.

My message to you today is: make self-care a priority.  Take care of yourself; no-one else will. Show yourself some love. Find what you can do on a regular basis  to keep your body and  mind healthy and your connection to Spirit / God alive. You’ll be happier, healthier and grateful you did.

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.

Your Child With Autism: Life as an Adult & Planning Ahead

The colors of my life as a young boy web

The Colors of My Life as a Young Boy   

Happy days are represented by yellow and green for the calm of doing nothing. Blue for the knowledge my mom gave me. Truly my mom gave me hope represented by white. Truly my mom was the first one who saved me from despair represented by little strokes of red. Greatly my life was mostly pleasant  represented by the color of nice light orange. Gold from above is helping. Greatly my life is better now. – words and painting by Jeremy Sicile-Kira

Thinking about when your child ages out of school services is pretty scary for most parents of teenagers with autism.  The reality is that parents can create a successful future for their child.  But it doesn’t just happen overnight – it’s about having a plan and using the IEP process.

If there is anything I’ve learned as a parent of a child with autism, it’s that you can’t just leave it up to the system – school or adult services –  to figure it out. You have to be involved.  It’s important for parents to realize that when your child ages out of school into adult services – your child ages out of mandated services. Under IDEA – the Individual with Disabilities in Education Act – all students are guaranteed a free and appropriate education.

When your teen or young  adult  either graduates from high school or ages out of school services (at age 22 in most states) – there is nothing guaranteed for your adult child.  Your adult child may be eligible for services, but that does not mean that he or she will receive services. It means they will be eligible to get on waiting lists.

This is why it’s important to  plan ahead and to use the  IEP system to get the goals and objectives on the student’s IEP to learn what they need to learn in order to be successful adults. There are life skills that  every person needs to learn to be able to get and keep a job, enjoy their free time,  live as an adult as independently as possible.   The ITP – Individualized Transition Plan  – exists to plan for the student’s hopes and dreams for their future as adults. Once the ITP is written, the IEP should have goals and objectives that reflect the ITP. Just like your child’s earlier school years, don’t accept the status quo in transition programs because ‘that’s what we do here’ if it doesn’t fit your child’s needs.

Every student is different, but  goals and objectives can be written for every type of person – every student’s ability. Everyone is able to learn – but educators and parents have to be cognizant of HOW that student learns best and WHAT motivates them. Do they have something they really like to do? What are their strengths? For some it is not as obvious. For example, Jeremy just liked to stim, mostly. He liked looking at colors and patterns on  book covers and on rugs. Then he liked learning, and writing when he learned how to communicate by typing – which was a long process.  Then he discovered painting – which he did not like as a child, probably because of the sensory aspects.  Turns out those patterns he liked, were really full of colors he was dreaming about at night. But we didn’t know that till he was 23 years old!

The point is, never give up on your child –  or teenager – or adult. Learning is forever. But it is only while your child is still eligible for  mandated school services under IDEA  that  he or she  will be guaranteed the educators  and supports needed to learn. But be cognizant that the school system can’t do everything.  What can you do that will help your child prepare for the future, or how can you support  your child’s educator  and classmates? For example, If your child has a certain interest, can find someone to mentor him in that after school? Is your child learning to do some chores? Can you find your teenager a volunteer job so he learns responsibility? Can you partner with other parents and support each other and possibly create some options together?

Obviously, this is easier in some cases that for others. We’ve had to spend a lot of time and energy over the years to create opportunities for Jeremy because of his sensory-motor challenges. Jobs or functional living skills that require a lot of fine motor skills are really challenging for him.  Meanwhile he has a productive life doing what he loves, while still working on those living skills he needs to learn. He has a great support team, and  has his independence, but we  are still involved in helping him create his adult life based on his wants and needs. And there is no way we could do it alone, or that any agency could do it alone. It does take a village!

My son Jeremy and I co-authored A Full Life with Autism  so that  parents and educators could learn more about the reality of adult services is, and to offer suggestions on how to best prepare a student with autism for real life. Model programs that parents and professionals have successfully created together are provided.  We hope the book  informs you, and inspires you to plan ahead using the IEP process and whatever else you can do. We also hope  it will inspire parents to get involved and  help create the future with other

like-minded parents and professionals. Together, we can make a difference and create the future.

Chantal Sicile-Kira is an author, speaker and consultant on autism, adolescence, transition services and the effects of autism on the family. Chantal can be reached here.  Feel free to leave comments below.

Full Life Book w Border

How To Start A Great New Year

         Happy New Year!

Happy New Year!

My son, Jeremy, is a New Year’s baby. From the moment I was given Jeremy’s due date – January 10, 1989 – I was admonished by my sister the nurse practitioner to make sure not to go into labor during the holiday season.

Whatever you do, don’t give birth on New Year’s Eve or New Year’s Day; that’s the worst time to have a baby – the hospital staff who are working either don’t want to be there, are getting drunk or are hung over.

We are living in Paris at the time, and  we are invited to a New Year’s Eve party being thrown by other expats in their  loft in the 6ieme  arrondissement. We don’t own a car, so we take the metro.  Obviously, I don’t drink any alcohol at this point, but I still try to dance as much as my 8.5 months pregnant belly will allow me to.  You can stop me from drinking, but not from dancing!

Just after midnight and after ringing in the new year, we decide to head home, about 2 miles away in the 12th arrondissement. The metro and the bus have stopped running for the night,  and  there are no taxis to be had, this being New Year’s Eve. We start walking in the general direction of our apartment,  still  hopeful of catching a cab after it has dropped off a client. After about a mile, we are walking in front of the hospital where Jeremy is supposed to be born in ten days. There is a park bench and I sit down.

Let’s stop here; I’m too tired to walk and it’s conveniently located in case the baby decides to come early!

Little did I know… Another half hour goes by, still no taxi , so we walk  all the way home. We are in bed by 3:00 am. A few hours later I feel what I presume to be the start of labor pains.  I call the hospital and describe what I am feeling, and they tell me to come in to the hospital NOW. I wake Daniel up.

We have to go, we are having a baby! I need to get to the hospital!

I make him a cup of expresso, two shots, because he is not a morning person.  I take a shower.  A woman wants to feel clean and look nice when giving birth (an oxymoron, I know).

When I get out of the shower, Daniel is not getting ready – he is putzing  around – putting away clean dishes, straightening the silverware drawer, emptying the garbage, all at a leisurely pace.  I am not feeling calm,  I yell:

What are you doing??? We have to go to the hospital!

He replies,

Yeah yeah, relax,  The baby is not due for another ten days! Calm down!

We go downstairs to the street to get a taxi. We realize we may have a problem getting one as it is early New Year’s day, about 7:00 am, and because according to movies we have seen, taxi drivers do not want to pick up pregnant ladies about to give birth. They don’t want their cabs messed up. We spy a cab and Daniel flags him down and I hide my discomfort and we tell the cab driver we are going to the hospital to visit a sick aunt. He takes us to the hospital.

Meanwhile, all I can think of is what my sister told me:

Whatever you do don’t have a baby on the New year’s Eve or New Year’s Day!

Sigh. Some things you can’t control. When we get to the hospital, the nurse checks my vital signs and how much I’ve dilated, and she says

Yup, it’s happening today; I’ll tell the midwife you are ready!

Daniel drops the bag he was carrying – the bag that you are told to have packed two weeks before you are due to go to the hospital – and he exclaims,

Oh no, I can’t believe it; I thought this was a dress rehearsal, I was just humoring you!

I could have killed him on the spot if I hadn’t been in so much pain.

Needless to say, Jeremy was born that day despite it not being a good day to be giving birth in hospitals. Everything went well.  It was a wonderful start to a New Year, for which I am forever grateful.

 

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.

Autism & modern love

Jeremy Sicile-Kira

Here is an article I wrote five years ago  – Jeremy was 20 years old. (It first appeared in  Spectrum Magazine). I’m reprinting it here now because it is still as relevant today as it was back then. Enjoy!

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series. Never mind that he is autistic, needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress.)

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds. I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, a HBO series which is a show about four good friends from Queens, N.Y., now living in Los Angeles who try to get laid and avoid relationships in-between acting gigs. There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, offered us the DVD of the first season as a gift. Jeremy got hooked. When asked what he liked about it, Jeremy spelled out by pointing to letters on his letterboard, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concerns for Jeremy up until now have been: where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive? Not a week goes by when I don’t research the possibilities and create new possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your own child. At the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. For most parents of autistic kids, just providing the basic necessities of food, shelter and work for them is a constant worry. But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be (not because they are related to you) are also basic necessities. I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers, asking me what they should do. How are they going to cope? I feel their pain. My heart aches as it mirrors my own distress. We have barely enough energy to make it through an autism-filled day, let alone plan for the tangible—and less tangible—future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about four years. The way he describes what autism is like for him, it sounds like a less severe form of “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor-in-chief of Elle suffered. Bauby had a stroke and lapsed into a coma and when he woke up he could move only his left eye. He wrote his memoir, The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks. “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate. People ask: Do I feel emotions? Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me. I am the same as you inside. I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV: Jeremy masters assistive technology in order to have a voice, yet has difficulty staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “I want a cell phone.” “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from home and practice communicating,” I told him. Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing. What are you doing right now? Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out different gyms. Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to?” I asked. Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said, “You’ve just missed the Charger Girls!” Jeremy was even happier. The Charger Girls are the cheerleaders for the San Diego Chargers football team. A Charger Girls poster is the only athletic memorabilia hanging in Jeremy’s room. “I like this place! This is where I want to come workout,” he said. Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes there regularly with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out, “I want to buy a calendar with pictures of girls for Troy.” “Uhhh…okay, ask Janine,” I replied. Jeremy is, after all, over 18. Sure enough, Jeremy went to the mall with Janine (another tutor) and came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.” “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained. I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity and difficulty of it. Even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”
I ask him, “What does love mean for you?” “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”

I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on another HBO show, Big Love. Having three wives, a three-house suburban home, an extended family and strong community ties – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite. This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.

Preparing to Move : Will mom survive the empty autism nest?

Rebecca and Jeremy Sicile-Kira,  high school graduation, June 2010

Rebecca and Jeremy Sicile-Kira,
high school graduation, June 2010

When my daughter Rebecca moved away to college four years ago, it was difficult. At the time I joked that she left me living with two non-verbals (my husband and Jeremy) but that is what it felt like. Rebecca was vivacious, energetic, very verbal and social, with friends in and out of the house. I loved hearing the laughter (the sweetest sound in the world) emanating from her bedroom or the family room downstairs.

The other difficulty was the concern I had, like most parents, of how your teenager will do being away from home. Will she make wise choices? Have we taught her enough about staying safe without making her paranoid? Have we taught her enough about staying organized, doing household chores and cooking so that she will be a good roommate once she moves out of the dormitory? (To be honest, she never showed any enthusiasm for any household activities, except perhaps baking chocolate chip cookies from scratch).

Now it is Jeremy’s turn to move out, and I am torn by many emotions. Before, Jeremy’s move was a theoretical construct. Now it is official; word came from the powers that be in recent days. We have been preparing for this moment for a long time; in fact we have been advocating for many years for this to happen. I’ve been bracing myself for this moment for some time, and it is finally here. Jeremy and I have written abut this in A Full Life with Autism, and I’ve discussed it some in Autism Spectrum Disorder (revised).

On the one hand, I am not getting any younger and I am really exhausted from the level of care and supervision Jeremy needs, as well as supporting him in reaching his goals as a writer, advocate and artist. It would be OK if all I did was support Jeremy, but I must earn a living as well, and exercise to stay healthy and strong. We are lucky in that we have some help from the system that pays for some hours of respite and support to Jeremy. But that requires my time and energy – finding, training, supervising staff and teaching Jeremy to have a larger role in that. Thus why I have little downtime or social life.

But the wonderful support staff who are in and out of here with Jeremy for part of the day have somewhat filled  part of the void left by Rebecca in terms of young energy and vivaciousness (obviously they could never replace her as my daughter!). I realize when Jeremy moves out, not only will I miss him, but I will miss the support staff and Handsome the dog. As a writer, I have at times missed the lack of privacy with people and Jeremy coming and going in the house, but I realize that the Afternoon Angels and Jeremy’s Team have been an important part of my social life for some time now. And when Jeremy goes, so will they.

As we start telling friends and family Jeremy is really moving within the next six months, the most common reaction is “you won’t know what to do with yourself.” Actually, I have a pretty good idea – focus on my health and exercise, work on a pilot program that is currently in concept stage, accept more speaking gigs, earn more money to help pay for Jeremy’s housing costs (and Rebecca’s college loans),  write that book I have always wanted to write (it doesn’t have autism in the title!), and sleep a bit more. Most of all, I will be able to live spontaneously: not have to check the schedule to make sure I have ‘Jeremy coverage’ before saying yes to some much needed ‘me’ time – taking a walk, having a cup of coffee or glass of wine with a friend, going to the movies with my husband.

I know it will not be easy emotionally speaking – I will miss Jeremy, just as I missed Rebecca when she moved away (and still miss her). But I know we are very connected, and nothing will ever change that.

Jeremy and Rebecca Sicile-Kira,  college students

Jeremy and Rebecca Sicile-Kira,
college students

 

Preparing to Move: A Full life with Autism

Jeremy and Handsome

Jeremy, who is 25, is moving out into his own place within the year. For those that don’t know Jeremy, he communicates by typing and has many sensori-motor challenges.  I first started writing about him in  Autism Spectrum Disorder (Revised)  (Penguin 20014). We are all looking forward to this move. Transitioning to being an independent adult starts early in life and Jeremy has been working on learning different functional living skills since he was little.  In the book  A Full Life with Autism (Macmillan 2012), Jeremy described how having his own life and independence was important to him.

Over the next months we’ll be describing what Jeremy is doing to prepare for his move. Besides improving upon or learning new living skills, there is all that needs to be done for his self-employment initiative as an artist and advocate (visit his website, Jeremy’s Vision), and his volunteer work.  Jeremy is also trying to improve upon his social life, and we’ll report upon that as well.

When Jeremy was little, my husband and I were told to put him in an institution, and to get on with our lives.  That was never an option for us. Instead I worked hard at helping him reach his potential so he could live a life of his choosing.  We hope that our experiences shared here will encourage parents and educators to realize that even those who appear to be very impacted can learn to do more, no matter their age. The window of opportunity for learning never closes. Never give up! Perhaps you will have your own stories to share; we look forward to reading your comments.

New Book: Autism Fundraiser and Book Signing Event

Autism Spectrum Disorder

Join us!  Free Appetizers!

Tuesday, January 14, 2014

5:00- 7:00 pm CozyMel’s in La Jolla (UTC), San Diego  CA

Proceeds of book sales that evening will benefit NFAR

Ten years ago my first book was published by Penguin and won a few awards. I’m thrilled to announce that I spent the past year revising that popular book, and the Revised Edition is now available. It has a slightly different name – Autism Spectrum Disorder: The Compete Guide to Understanding Autism. To celebrate the publication of this updated book, a fundraiser book-signing event is taking place in San Diego. I’ll be on-hand to sign books. Proceeds of book sales that evening will benefit NFAR. Shannon Vajda and Robin Champlin, Esq. are sponsoring the event. So come get a book signed, enjoy some free appetizers, and support a local autism organization!

About Your Hosts – Shannon Vajda (Pacific Coast Partnership) specializes in mediation-based services, including open adoption and co-facilitated martial and divorce mediation, providing confidential, fair, flexible and mutually beneficial resolutions. Robin Champlin’s full-service law firm represents students and their families in all matters related to education from pre-school through transition into adulthood, providing an individually tailored and child-entered strategy for each case.

About NFAR – NFAR’s mission is to help in the development, expansion and support of autism programs and services that improve the quality of life for children and young adults with autism in the San Diego Region.  

About the Book – Newly revised and updated, this award-winning guide covers every aspect of understanding and living with autism today.  Awards for the book include Outstanding Book of the Year – Autism Society of America, and Best in Health – San Diego Book Awards. Comprehensive and authoritative, Autism Spectrum Disorder explains all aspect of the condition, and is written for parents, educators, caregivers and others looking for accurate information and expert insight. Newly updated to reflect the latest research, treatment methods, and DSM V criteria, the invaluable book covers autism from diagnosis to adulthood.

Praise for the Book

“This updated version of Autism Spectrum Disorder is as indispensable as the award-winning original. This well-documented guide offers clear answers to difficult questions and recommends the important resources that parents will find the most useful. Since the first edition was published, Chantal has written four more essential books while raising her son who is now a young man. She’s done the research so the reader doesn’t have to! Her abundance of practical knowledge has been compiled into this user-friendly updated edition that both parents and professionals will want to keep on hand to refer to time and time again. Truly a must-have!” – Ricki G. Robinson, MD,MPH, member Scientific Review Panel of Autism Speaks; Medical Director, Profectum; and author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child

“If I could recommend just one book to families and professionals, this is it! In “Autism Spectrum Disorders”, Chantal Sicile-Kira shares her immense knowledge, personal experience and insightful advice for families affected by Autism. She guides readers along the journey from diagnosis through adulthood, including an extensive compilation of resources and “food for thought” throughout. This isn’t a book that you’ll read once and place on a shelf, it’s an invaluable resource that you will continue to refer to for years to come.” – Wendy Fournier, President of the National Autism Association

“Autism Spectrum Disorders is a tremendous resource for families caring for children and adults with autism. While sharing her personal experiences of a parent of a child with autism, Chantal Sicile-Kira provides insights and resources that are often missing from many of the books on this topic. Quite simply Autism Spectrum Disorders simplifies many of the complications that families face in navigating systems of care and in doing so, she gives families hope and great inspiration.” – Areva D. Martin, Esq., Co-founder and President, Special Needs Network, Inc.

“For over 30 years I have treated visual developmental delays for those with ASD; I think I have made a difference. But my contributions pale in comparison to what Jeremy has taught me through his work in Vision Therapy, and what Chantal has taught me as a mother and author. This book will become a life-long companion for those who want to  make a difference in a life – a life with autism or not.” – Carl G. Hillier, OD FCOVD, Clinical Director: San Diego Center For Vision Care

“A Clearly written, well-organized, carefully documented compilation of important information and useful advice. It will provide invaluable help and guidance to parents and professionals alike, especially those who are new to the worlds of autism. This book is not merely highly recommended-it is indispensible.”- Bernard Rimland, Ph.D., Past director of the Autism Research Institute, founder of the Autism Society of America and past editor of Autism Research Review

“This is the book we’ve all been waiting for. It is an essential source of information and advice in plain everyday language that can help anyone who is affected by autism today, from the parent of a newly diagnosed child, to someone who has been in the trenches for years. Kudos to Chantal for providing us with this long overdue, user-friendly, how-to guide for dealing with autism.” – Portia Iversen, Cofounder, Cure Autism Now Foundation (CAN),  member Innovative Technology for Autism Advisory Board of Autism Speaks, author of Strange Son

“The essential book that parents, health professionals, and a wide readership will reach for in order to fathom this confounding condition.” —Douglas Kennedy, author of Leaving the World, The Moment, Five Days and The Pursuit of Happiness

BookSigningEvent-Flyer-Final