More Than Just Coping: Empowerment Strategies for Parents

March 16, 2014
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?

March 13, 2014
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

March 1, 2014

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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

New Book: Autism Fundraiser and Book Signing Event

January 3, 2014

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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Community Connections : Life’s a Beach

October 28, 2013

Jeremy putting the cones out

Jeremy has always loved the beach. Since moving to San Diego when the kids were little, the ocean has played an important part in our lives. Recently, Jeremy had some time free up on his schedule and wanted a way to give back to our local community that involved his love of the ocean. Beach clean-up days seemed like an obvious first choice, but those days were sporadic and by the time we heard about them, it was too late to change plans we had already made.

Then, I ran into the head lifeguard that we had gotten to know over the years. As a mom on the beach when Jeremy and Rebecca were little, I would park our stuff in front of the lifeguard tower. Jeremy was enthusiastic about swimming and I was not always sure that I or a helper could always keep him close to shore. As a child on the autism spectrum, safety was not one of his strong points.

The head lifeguard mentioned how he saw Jeremy out walking the beach a few times a week (with another adult). I asked if there was anything Jeremy could to help the lifeguards as Jeremy was looking for ways to give back. When he replied, “Well, I don’t know much about Jeremy, what can he do?,” I replied “I don’t know much about the lifeguard station, what do you need?” The Head lifeguard gave me his business card and told me to call him so we could discuss the possibility further.

We met up and talked and the head lifeguard said they needed help setting up for the day and cleaning the safety patrol pick-up trucks. It was decided that Jeremy would start one morning a week. Jeremy was thrilled. He loves helping and interacting with the lifeguard, Johnnie, who works there. Then Jeremy gets to go for his walk on the beach, and finally get some fries at the restaurant on the beach where he is already a known regular.

Jeremy washing the patrol truck

Not only is Jeremy giving back and interacting with some more people, he is also having to learn new  motor skills. As you can well imagine, he is more motivated to wash the safety patrol pickup, than he is to wash the family car.

Giving back by volunteering in a treasured environment, or at a task a person likes to do is a great way to create connections.  And community connections are an important part of every day life.

Jeremy diggin a hole with some assistance

People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

October 3, 2013

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Autism College Free Q & A with Visiting Professor Robert Naseef, PhD on November 20th

October 3, 2013

Join Visiting Professor Robert Naseef, PhD and moderator Chantal Sicile-Kira in a free interactive Q & A webinar on Tips for Enjoying the Holidays and Managing Stress. You can sign up  here.

Many of us seasoned parents joke that we get more religious during the holidays: we pray our child will not have a meltdown while doing the holiday shopping; we pray that he or she will stay regulated during celebrations with relatives; we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ child; we pray that our relatives will be more understanding and accepting than at prior holiday celebrations.

We’re happy to have as our Visiting Professor in November Dr. Robert Naseef, who is personally and professionally experienced with the struggles and rewards of raising a child with special needs. On Wednesday, November 20th, at 6:00 pm – 8:00pm PST (9:00 pm to 11pm EST), Dr. Naseef will join us and share Tips for Enjoying the Holidays and Managing Stress. Sign up here  to participate.

Robert NaseefRobert Naseef, PhD specializes in guiding families of children with disabilities at Alternative Choices in Philadelphia.. He is the author of Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability and Autism in the Family: Caring and Coping Together.

 

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