Free Webinar with Dr. Suzanne Goh: Getting the most out of brain-based treatments for autism

On Monday August 25th, at 6:00 pm PST  (9:00 pm EST) Dr. Suzanne Goh will be participating in a two hour webinar moderated by Chantal Sicile-Kira, hosted by MomsFightingAutism.  To participate in this free interactive webinar, please sign up here:  MomsFightingAutism.com.

Topic:  Getting the most out of brain-based treatments for autism

A wealth of therapies are now available for children with autism. Choosing among them, knowing which to prioritize, and understanding how they may interact can be a challenge for parents. This seminar will present some of the latest neurological research to help guide parents in these important decisions.

Topics that will be covered include:

–       Diagnosis and managment of mitochondrial dysfunction inautism

–       Neurologically-based approaches to behavior and language intervention

Guest Speaker:  Dr. Suzanne Goh

Headshot SuzanneDr. Suzanne Goh is a board-certified pediatric neurologist with expertise in the evaluation and treatment of children with neurological conditions that impact brain development, cognition, and behavior.

Dr. Goh received her Bachelors of Arts degree, summa cum laude, in History and Science from Harvard University (1993-1997). She went on to attend Oxford University as a Rhodes Scholar (1997-1999). In 2004, she graduated from Harvard Medical School, cum laude. Dr. Goh completed her Pediatrics internship at Massachusetts General Hospital and her Pediatric Neurology residency at University of California San Francisco.

Following a postdoctoral fellowship in the Pediatric Brain Imaging Laboratory at Columbia University, she joined Columbia’s faculty as Assistant Professor of Clinical Neurology, with joint appointments in the Departments of Psychiatry and Neurology. At Columbia she also served as Co-Director of the Developmental Neuropsychiatry Clinic for Autism and Related Disorders where she oversaw a multi-disciplinary team of physicians and psychologists specializing in the diagnosis and treatment of children with autism.

Dr. Goh’s research has focused on mitochondrial and other metabolic disturbances in autism. She has also conducted brain imaging research to identify differences in brain circuits in children with autism. She has been affiliated as an author or reviewer with several leading neuroscience journals, including Neurology, Annals of Neurology, Pediatric Neurology, & Developmental Medicine & Child Neurology. She has taught at Harvard University, Columbia University, and the University of California San Francisco.

Dr. Goh is co-author of the book Spectacular Bond: Reaching the Child with Autism and ASD Unlocking Language: A Program to Teach Language and Communication

For more information go to  Dr. Suzanne Goh’s website.

Moderator: Chantal Sicile-Kira

Chantal-Sicile-Kira-homeChantal Sicile-Kira’s passion for empowering others, her love of writing and her personal interest in autism has led her to become an award-winning author of five books, speaker, and leader in the field of autism.  Her first award-winning book, Autism Spectrum Disorder, was updated and  published in January 2014. She has been involved with autism spectrum disorders for over 25 years as both a parent and a professional on both sides of the Atlantic. A tireless advocate for those on the autism spectrum, Chantal founded Autism College in order to provide practical information and training  online about autism.

Love and Autism: A Conference with Heart

IMG_2050Months ago I posted here that Jeremy was preparing to move this summer and that we would be blogging about the preparation and transition. Well, as you all know, life is what happens when you are making plans. I’ve been swamped with work and so has Jeremy (painting orders keep arriving…) and the actual transition takes a lot of time and energy. Perhaps when he is actually moved out 100% I’ll have time to write about the experience to help others -people keep asking us to do so.

The most important aspect of life is the relationships we have with others – family, friends, lovers. A few years ago I wrote about Jeremy’s yearning for love in Autism & Modern Love . In our book A Full Life with Autism,  Jeremy and I shared our experiences in trying to help him in developing relationships or finding out more about sexuality. It wasn’t easy. It was hard to find resources then, and still today  rare is the opportunity  to help our loved ones on the spectrum prepare for this aspect of their life.

Love&Autism

Finally, there is a conference – Love and Autism: A Conference with Heart – taking place in San Diego on August 23rd and 24th that is all about having healthy relationships between family members, between couples, between friends.  No matter the age of your loved one, it’s an important topic to help with his or her emotional growth, necessary for all the different types of relationships possible.

I hope to see you there! Readers of this blog can get 20% off  registration at sign up by using the coupon code: LOVEASD. Student and Military 50% off if they email info@familyguidanceandtherapy.com, or event text (619)607-1230 a picture of their student or military ID. Regional Center clients can attend for FREE after Regional Center funding. Email info@familyguidanceandtherapy.com for links.

 

 

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.

Free Online Autism Conference April 26th & 27th: Focus is on Transition to Adulthood

 Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood.  Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, Greg Zibricky,CFP, author of F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint for Autism; Janet Lawson and Dan Swearingen founders of Autistry Studios, on Building a Working ASD Community; and Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance.” 

011_3“The transition to adult life can be a rude awakening for parents as well as the young adult,” said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. “The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know.”

 We know that parents and professionals don’t always have the ability to attend conferences due to time, geographical location, or finances, and hope you’ll consider joining us virtually. Registration is completely free, and attendees can use their computers or smartphones to both listen to the talks as well as post questions live to the presenters. Readers may sign up for the conference here.

“In honor of Autism Awareness month, I want to provide free practical information on autism to all who need it,” said Ernest Priestly, Founder of MomsFightingAutism.com. “For many parents, it is difficult to leave home to attend conferences. A virtual conference is the best way for moms, dads, grandparents and teachers to get information they need without leaving their home. I’m glad I can help make their lives a little easier.”

About Moms Fighting Autism: MomsFightingAutism.com hosts webinars for mothers of children on the autism spectrum and anyone interested in learning more about autism. MomsFightingAutism.com provides tools and services that allow members to connect, support and learn from each other.

About Autism College: AutismCollege.com, founded by the author Chantal Sicile-Kira, provides practical information and training, on-line or in person based on her books.

The Three Models of Autism – One Person’s Perspective

Jackie McMillan, BES

Jackie McMillan, BES

Autism College occasionally publishes guest blogs of different perspectives.  This blogpost is by Jackie McMillan, B.E.S., who has Asperger’s Syndrome. Jackie’s self-directed recovery started in 1976 at age 11.  Since her first inkling that she was autistic in 1988, Jackie has been combining her recovery discoveries with those of other autistics, and with scientific research from a variety of health fields.  Finding no workable model of autism, she has created one that helps others to optimize the gifts, and minimize the challenges of Autistic Spectrum Disorders.  She has drawn on her degree in environmental studies, two years of pre-medical training, and many certifications in complementary health.  Jackie lives by the motto:  If you know things have to change, you might as well enjoy it! For more information about McMillan, visit  ThriveWithAutism.ca  

The Three Models of Autism

Have you ever wondered why some autistics get health and functional improvements from an intervention like food changes, and other autistics just don’t? Or wondered why there’s such a big gap between a good day, and a bad day, for the autistic in your life?

I have a unique perspective on this. I have autism, and at age 11, I spent one month at a wilderness canoe-tripping organization. Through that month, ever-so-gradually, my pain levels dropped, my emotions smoothed out, my thinking and memory improved, my reaction times got much faster, and I was able to make and keep friends. Unfortunately, within two days of my return to my normal inner-city environment, everything slid back to ground zero. I desperately wanted to go back to that amazing quality of life, though, and I was determined to figure out how to recreate it.

The Turning Point:

I turned my life into a science experiment, testing out every factor that had been different between these two environments. Through lifestyle choices, my thinking improved enough that I was able to go through the science track in high school, where I began to chase down my symptoms in the medical journals. No-one ever mentioned autism; my parents felt I had enough to deal with, sans diagnosis and the threats of institutionalization which would have been normal at that time.

In my second year of pre-medical studies, I hit a roadblock. Though the medical journals covered many of the factors which I had discovered could help or hurt me, the medical program was focusing all of its efforts on diagnostics, and drugs. I knew drugs were trouble; in a pharmacology course, I had looked up every drug I’d ever taken. I had all the side effects plus some, and even the intended effects were disproportional.

I took some time off to regroup, and ended up in a different university program, environmental studies. Around that time, a nurse gave me an informal diagnosis of autism. The medical journals were spot on in their diagnostic criteria of ASDs (as applied to me), but the treatments and theories didn’t make sense at all, in terms of my own experiences. Fortunately, other autistics’ experiences mirrored mine: I wasn’t crazy in what I had identified could help, or hurt!

Right now, there are three models of autism.

The Outdated Model of Autism:

The outdated model says that autism is an incurable neurological disorder, and that nothing can be done except to suppress the symptoms in a variety of ways. If an autistic’s health improves enough to camouflage in the school or working world, then the original diagnosis must have been wrong. An unintended result is that this model silences autistics who have experienced some degree of recovery.

The Bio-Medical Model of Autism:

We now know that this outdated model isn’t true, because doctor’s children have recovered enough health function that these MDs have begun treating other autistic children, with some success. These doctors are working with the biomedical model, which says that autism is caused by some combination of malnourishment, impaired detoxification, and immune dysfunction.

The bio-medical treatments are expensive supplements, detox protocols, and immune supports. Unfortunately, it is often carried out in a “one-size-fits-all” manner, without careful study of which impairments might need to be addressed before action can be taken on the others, for each individual. It is also inaccessible to many who cannot afford the treatments, or find a doctor who keeps up with the research, and the results are spotty.

The Five Root Causes Model of Autism:

But there are many, many adults in the autistic spectrum who began with much more impairments, yet are now sufficiently functional that we can participate (at least to some extent) in venues and interactions formerly limited to the non-autistic population. Our collective experiences point to two root causes of autism which are not included in the biomedical model. These are unresolved trauma, and brain and nervous system impingement.

Autistic experiences also point to simple and inexpensive lifestyle choices which can maximize function — or quickly detract from it. This makes a great deal of sense of the variable function and symptoms of each individual with an ASD, from day to day! With different blends of the different root causes in action for each autistic individual, these lifestyle choices vary, but the commonalities are obvious.

Interventions vs. Lifestyle? Or both?

Beyond lifestyle choices, interventions can still make a huge difference to health, function, and quality of life for autistics. How do we tell which interventions will help which autistic? Fortunately, the symptoms themselves point the way. The unique symptoms expressed by each individual can make it much easier to understand which of the five causes might be in action, to which degree, and in what order of precedence, for that specific individual.

But tailoring treatments to the relevant root causes is not enough, on its own. Without the lifestyle changes which support a return to health, functional gains are as short-lived as mine were from that summer camp experience. Fortunately, what is healthiest for people with ASDs is what is healthiest for our entire human race. Health challenges as disparate as hair loss and cancer respond favourably to the same lifestyle changes.

Which straw broke the camel’s back to bring on autistic symptoms can be figured out, and quality of life improved, for every individual on the autistic spectrum. Some repairs are easier than others, and some are more complete. But the potential contributions all of us autistics, with our problem-solving brains, are needed by our culture in this time of change. Won’t you please help us to thrive?

More Than Just Coping: Empowerment Strategies for Parents

Jeremy Sicile-Kira - then

Jeremy Sicile-Kira – then

Yesterday I presented at IEP Day (Involved Exceptional Parents’ Day Conference) in San Diego. I  promised to post some information here for participants, so they could easily access some links to free information. Feel free to pass this to other parents who need the information.

As a parent of a newly diagnosed child with special needs, it is not always easy. As we discussed yesterday, you may be feeling very emotional and upset, and that is normal. Remember, you are not alone. Many parents have been there before, and joining support groups with parents can be very helpful. You can share information.

Remember, you may be eligible for services and sometimes things go smoothly, sometimes they do not, and every school district is different. You will have to learn to be an advocate for your child. Knowing your rights is important. You will get services based on facts, not emotions.

In each state, there is information available for free to help you know your rights and responsibilities as a parent of a child with a disability, or a person with a disability. In some states it is called Protection and Advocacy; in California it is Disability Rights California   http://www.disabilityrightsca.org.

There is a lot of information on that website, and great publications you can read on different rights and responsibilities you have. For example, If you want information as a parent of a child who receives special education services, click on “Publications and Resources” at the top http://www.disabilityrightsca.org/pubs/PublicationsIndex.htm.   You can see the list of publications that explain in simple language what the laws mean. If English is not your native language, you can click on the language you want to read the document in (Spanish, Korean, etc). You want to read “The Special Education Rights and Responsibilities (SERR) in regards to special education.

Here is a series of blogposts I wrote specifically for parents of newly diagnosed children. This information is from my newly revised book, Autism Spectrum Disorder (2014). Although the book is specifically geared towards autism, the advice in the blogposts below is true for any new parent of a special needs child, especially # 1 and # 4.

1.  Advice for Parents of Newly Diagnosed Children with Autism http://www.psychologytoday.com/blog/the-autism-advocate/201402/advice-parents-newly-diagnosed-children-autism

2.  New to Autism? Where to Go for Information http://www.psychologytoday.com/blog/the-autism-advocate/201402/new-autism-where-go-information

3.  Newly Diagnosed Child With Autism? First Steps for Parents http://www.psychologytoday.com/blog/the-autism-advocate/201402/newly-diagnosed-child-autism-first-steps-parents

4.   Parents New to Autism: More First Steps to Take http://www.psychologytoday.com/blog/the-autism-advocate/201402/parents-new-autism-more-first-steps-take

You may also wish to sign up to receive free occasional newsletters from my website  AutismCollege.com – scroll down the home page.

If you want to see my son Jeremy’s commencement speech to hear his words, you will find it here: Autism: Transition to Adulthood: Jeremy Sicile-Kira’s High School Commencement Speech.

Even if your child cannot speak, it does not mean he or she does not understand. Speak in whatever language you are comfortable in. Research shows that hearing two languages does not impede understanding. Just be consistent in using the same language.

Remember: your child is different – but not less! Tell your child everyday that you love him or her. Read to your child, sing to your child. You are connecting with your child, and that is the most important ‘therapy’ in the world. Over time you will see that you are learning as much from him or her as your child is learning from you. never give up on your child!

Jeremy Sicile-Kira - now

Jeremy Sicile-Kira – now

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

 

What Does your Kid Want to Be When He or She Grows Up? Options Available at FRED Conference

IMG_1257

Every child has dreams and every parent wants to help them come true – and parents of children who are different (but not less) are no different. Only thing is, we need to be looking at options and working together to create some where none exist.

That’s why the national FRED conference is so important. Meeting other like-minded people to create a future worth dreaming about is empowering. And it is never too early to start. Last year, Jeremy contributed on a panel and this year it’s my turn.  There will be panels on housing models, employment, safety and well-being, and self-care (for the parents – we need to take care of ourselves, too!)

FRED 2014 is taking place Friday March 28 and Saturday March 29, at the LAX Marriott in Los Angeles. For more information about the experts (including many self-advocates) donating their time wisdom, experience and hope, visit www.FREDconference.org. I’m counting on seeing you there!

Meanwhile, enjoy this announcement from FRED about this year’s FRED Pioneer Award Winner, Kevin McGuire.

AbleRoad Founder and Disability Rights Leader Named as FRED Pioneer Award Winner

Manhattan Beach, Calif. — February 27, 2014 — Today the FRED Conference announced that Kevin McGuire is the 2014 recipient of the FRED Pioneer Award. This award is given to the individual or organization that best embodies innovation and advancement in the field of disability rights.

The FRED nomination committee selected Kevin McGuire in recognition of his pioneering work launching AbleRoad, the most comprehensive website and app designed to connect people with accessible places, and for his lifelong impact in the disabilities field. Kevin McGuire will receive the award in Los Angeles on March 28th when he serves as the FRED Conference keynote speaker.

“We are very proud to have Kevin McGuire as this year’s winner. He is a role model for so many in the disability community, both personally and professionally”, said FRED Director Mari-Anne Kehler. “Kevin has led by example to show that disabilities are not limitations, and that with vision and hard work anyone can succeed, and exceed, in life. He is a real visionary and true pioneer.”

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AbleRoad is a website and a smartphone app that allows users to review any public space – from restaurants and theaters to parks, hospitals and concert venues – and rate it for how well it accommodates people with disabilities or those with medical conditions. Users can upload photos and leave detailed reviews for others to read, allowing people with disabilities, their friends and caregivers to research whether a certain business or place is accessible, and to choose the places they want to patronize. AbleRoad also helps businesses understand the challenges their location may pose to those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities, and persuade them to make changes to improve their accessibility.

McGuire is also CEO and Founder of McGuire Associates, Inc., the nation’s leading consulting firm specializing in compliance with disability laws. His clients include high profile venues such as the Staples Center and Gillette Stadium. He has produced an ADA customer service training video for frontline employees, and a training video on how to evacuate people with disabilities from buildings during emergencies, which have been sold worldwide. He has used a wheelchair since age 7, when an intoxicated driver struck him. He has recently written a novel, PATRICK, based on his experiences growing up as a wheelchair user.

This is the second annual FRED Pioneer Award. Last year’s recipient was Pegi Young, who along with her husband, rocker Neil Young, founded The Bridge School for students with disabilities.

About FRED Conference: FRED is the premier organization to galvanize leaders focused to advance and enhance the futures of adults with disabilities. FRED is dedicated to the idea that all individuals deserve to live their passions, and determine their choice of the future they live. FRED brings top thinkers: experts, families, and self-advocates, together to share leading practices and accelerate approaches to building those futures. www.FREDconference.org

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

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