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.

 

Frog Legs for Breakfast – Camping a la Francaise

People  often  ask how did I build the character I have to  survive all the challenges I’ve faced as a parent of a young adult with autism, including ‘negotiating’ with the systems in place to help us?  The answer is simple: I survived camping.

chantal snake

The word ‘camping’ conjures up different images for everyone. Mention camping to my husband   Daniel –  whose mother was  a  Puerto Rican from Manhattan and his father a Romanian from Detroit-  and here is what he pictures:

A 1960’s green station wagon, parked in a rest stop,  close to  flushing toilets, hot running water, and a Greek diner. His mom and sister sleep in the station wagon where the seats have been folded down, a mattress laid on top to make a nice cozy bed with blankets and fluffy pillows. Screens cover the open windows so the bugs can’t get in. Daniel and his father sleep in a 4 person tent pitched nearby. In the morning they rise and stretch, refresh themsleves in the cozy warm rest stop bathroom and get dressed. They drive to the closest Greek Diner or Howard Johnson, sit in a booth  and have a nice warm breakfast and fresh coffee.

My parents were French Alpinists before becoming French immigrants on Staten Island. They treked in the Alps carrying what they needed to survive in the wilds and sleeping in two-man  pup tents they had sewn together.  Camping meant battling the elements.

So my visual of camping is somewhat different than my husband’s. I see six children covered in soot sharing three small faded old handmade pup tents in a former cow pasture –  evidenced by the cow patties that are left behind – surrounded by woods, 15 miles away from any other humans.

My father was a project manager for a construction firm in New York.  Eventually he was  assigned overseeing the construction of a power plant  in Louisville, Kentucky.  During the school year he commuted back and forth from Staten Island to Kentucky. But during the summer, my parents would pack us all up and take us camping for two months in the Louisville area so that we could be together. For two months each of  three summers, the cow pasture is home.

In the middle of the field is a one room old, rickety wooden shack where maman and papa sleep and where we all take cover during scary lightening and thunderstorms punctuated by torrential downpours of rain which reduces the cow field (and cow patties) to a mud pond. We keep our supplies in the leaky shack  and every other Sunday a rural roman catholic priest comes to celebrate mass for us (now that I think of it, maybe he was giving us last rites).

At a safe distance from the shack and tents is the one-hole wooden outhouse all eight of us share. There are no lights, and when use the outhouse we take a flashlight even in daytime to make sure no snakes are waiting for us in the hole where we sit to do our duty.

There is a large campfire maman uses to cook and heat water  to fulfill the basic needs of eight people, and next to it a picnic table where we eat. The pots on the campfire are old, and dented, stained black from the soot  which emenates from the  campfire which is kept lit 24/7 when it is not raining. Soot from the fire covers everything we have at the campsite. The only running water besides torrential rains is the stream below where my dad takes us frogging on moonlit nights.

The worst part about camping is not the frogging; it’s the sleeping in the narrow short pup tent. Every night I crawl in to my side of the tent, the left side, careful not to knock down the short pole in the middle of the tent holding up the ceiling. The tent is very low to the ground and the tent’s ceiling at it’s highest point is only 12 inches away from my face if I am lying on my back.   As a little girl, I can handle snakes but I absolutely abhor spiders; I have nightmares about them, usually the black widow sort.

Unfortunately, every morning when I wake up, the inside surface of  my tent which I share with one of my sisters,  is full of between 10 to 20 Daddy Long Legged spiders. Up close, these spiders look like one giant eye with  8 skinny, long legs coming out of that eye. Here is my first dilemma every morning upon waking up: I must get out of my sleeping bag in the narrow short tent without touching the canvas siding of the tent, because if I do the spiders will start moving.  And I am certain they will crawl all over me.  The second dilema is deciding: Do I stay face-down  as I carefully crawl out from the tent backwards so I can’t see the spiders but I imagine  them jumping on to my back  as I try to leave the tent?  Or do I roll over on to my back and  shuffle out of the tent feet first, with my eyes wide open so I can keep my eyes on the spiders, terrorized that at any moment one or more of them will jump on me?

My siblings, who know about my fear of spiders are relentless. Every morning before eating breakfast we must  air out our sleeping bags and empty the tents. And every morning one of them, ususally my older brother, grabs a spider by one of its legs and chases me around the campsite. I quickly learn to run fast, very fast. Once I am so terrified that I run all the way to the closest dirt road a quarter of a mile away before realizing I am wearing nothing but my big white panties. No matter that there is no one around for miles to see me, I am mortified.

After the spider chase torture ritual every morning, it is time for breakfast cooked over an open fire. If  we are lucky, we have frog legs for breakfast. There is a steep path leading to the stream below, which becomes a mudslide whenever it rains. At the bottom of the path, an old wooden rowboat is tethered to one of the trees that overhangs the river.  The rowboat is so old  that most of the  paint is peeled off, but you can tell that at one time it had been green. The water in the stream is murky and the sun barely ever reaches through the large tree branches that hang over it, tree roots sticking out making perfect resting places for all types of reptiles and insects.

Occasionally, when the moon is bright my dad takes take us ‘frogging.’ There are parts of frogging I really like: getting into the rowboat at night with the moon shining and fireflys  glowing,  insects buzzing, and feeling like we are going on a real adventure.  What I don’t like is the killing the frog bit. The idea behind frogging is to have frog legs for breakfast. As our parents never cease to remind us,

Papa: “ Cuisses de grenouilles, Frog legs are an expensive delicacy served in the finest of of restaurants in France. We are so lucky to have all these delicacies hopping around  for free, waiting to be harvested for our dining pleasure.”

I never can understand why my friends recoil when I told them about my frogging experience.  I imagine they  haven’t had  the good fortune of tasting frog legs cooked over an open campfire.  They didn’t know what they are missing.

The oldest four children climb into the rowboat with my dad, and we each have our job to do. Two of us row the creaky old boat, one of us  holds a flashlight and shines it over the river looking for frogs, one of us carries the burlap bag, and my dad holds the pitchfork. The pitchfork is smaller that your regular farmer’s pitchfork,   it looks more like  the miniature pitchforks sold with devil’s costumers around Halloween. But the prongs on this pitchfork  are real metal, thin and sharp.

Before we get into the rowboat, my siblings and I fight over who gets to do what. Everyone’s favorite job is holding the flashlight. It beats bagging the frogs and is less strenuous than rowing. It’s dark on the river, with overhanging branches of the trees blocking any moonlight. I like being in control of the flashlight because then I can shine the light  and  actually see – if I want to- all the weird things out there making noises. Whoever controls the flashlight controls what everyone sees because it is pitch black on the river.

We all sit quietly in the rowboat and wait till we hear the croaking  of  frogs and then  I turn the flashlight on the frog and aim the beam  right in  his eyes. The frog is blinded by the light, and he sits frozen, unable to move. My sisters  row the boat closer to the poor frog as I keep the beam of light steadfastedly aimed at the frog’s  eyes. Papa lifts the pitchfork up and spears the frog in his belly and my brother quickly moves in with the burlap bag and voila! in the burlap bag he goes! We always catch at least a dozen, we are 8 people and a pair of of frog legs  does not provide much nourishment – as delicacies rarely do.

Yes indeed, camping is good training for facing your demons.

 

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.

All you need is love …

Love&AutismAs parents, most of us are concerned with the basics in regards to our children with autism: “Are they getting their educational needs met?”  “When they grow up, where will they live and will they be employed?”  Of course, these are important concerns. But so are creating  connections with others, and developing healthy  relationships. It’s not always easy to know how to help our children foster relationships.  If you are a parent or educator in Southern California, then you are in luck. Love & Autism: A Conference with Heart is taking place in San Diego on August 23rd and August 24th.

Jenny Palmiotto, LMFT,  Owner and CEO of The Family Guidance & Therapy Center of Southern California  decided to host this conference, and Jenny explains why in this blog post from the RDI Connect website: “As a professional who works directly with the autism community, the version of autism that the media depicts is far narrower than the diversity of people whom I have the privilege to work with on a daily basis. Likely the most devastating myth that I hear about individuals with autism, is that “people on the spectrum” do not want or need relationships. The most worrisome part of this falsehood is when loved ones and individuals on the spectrum start to believe this debilitating myth. It is crucial and long overdue that we discard this limiting belief. Relationships define lives, everyone’s lives. Our primary goal in life is to love and be loved; this does not change when you are born with neurological differences associated with autism. Love is an innate and fundamental part of being human.

Many people struggle to find love and trusting relationships; some of those people have a diagnosis called autism. The diagnostic criteria for autism include social deficits as one of the three hallmarks of the disorder. However, the core deficit in interpersonal relationship does not mean that there is not a desire or longing to connect with others. Individuals on the autism spectrum want and need relationships at all phases of their lives.

New research shows the bi-directionality of autism, meaning that when an infant that later becomes diagnosed with autism interacts with his mother, he is more withdrawn, responding less to his mother’s attempts to interact and then, in turn, the mother’s interactions become more directive and less responsive/sensitive. The early relational disturbances that mark the parent-child relationship for those on the spectrum frequently extends over the course of life with difficulties in developing friendships and later intimate partnerships. Regardless, individuals on the spectrum feel the same emotional longing to belong and to be a part of something special at home, on the playground, in working/professional relationships, or as part of a team. The problem becomes: how can individuals on the autism spectrum get the closeness they want and deserve?

The ability to give and receive love is far more than a social skill that can be learned; it takes perseverance, reflection, risk, and trust. Our brains are experience dependent organisms, meaning that an individual has to experience relationships rather than simply learn about them in isolation. Professionals working with individuals with autism need to begin by understanding the neuro-science of attachment and love. It is essential that autism professionals do more than stop aberrant behaviors. We need to make sure that our interventions and methods have relationships as the primary focus. Relationship building cannot be secondary to behavioral skills training. Developing the “we” is important from the first moment of life and thus should also be central within our treatment options for those on the spectrum. Fulfilling reciprocal relationships are not only possible for all individuals on the spectrum, they are imperative to living a full and satisfying life.

If you are interested in finding out more about how to help your child, spouse, sibling, or loved one on the spectrum develop rewarding relationships; please join us at Love and Autism: A Conference with Heart on August 23-24th 2014. We know you will LOVE this event.”

To receive more information about the conference, sign up here.

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 Members  can attend for FREE after Regional Center funding – email info@familyguidanceandtherapy.com  for links.

For any questions, please contact  info@familyguidanceandtherapy.com.

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.

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

 

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