Full Life with Autism: From Learning to Forming Relationships to Achieving Independence - Softcover

Sicile-Kira, Chantal

Softcover

ISBN 10: 0230112463 ISBN 13: 9780230112469

Verlag: St. Martins Press-3PL, 2012

Inhaltsangabe

A guide for helping our children lead meaningful and independent lives as they reach adulthood

In the next five years, hundreds of thousands of children with autism spectrum disorder will reach adulthood. And while diagnosis and treatment for children has improved in recent years, parents want to know: What happens to my child when I am no longer able to care for or assist him? Autism expert Chantal Sicile-Kira and her son Jeremy offer real solutions to a host of difficult questions, including how young adults of different abilities and their parents can:

*navigate this new economy where adult service resources are scarce

*cope with the difficulties of living apart from the nuclear family

*find, and keep a job that provides meaning, stability and an income

*create and sustain fulfilling relationships

Über diesen Titel

Über die Autorin bzw. den Autor

Chantal Sicile-Kira and Jeremy Sicile-Kira; foreword by Temple Grandin

Auszug. © Genehmigter Nachdruck. Alle Rechte vorbehalten.

A Full Life With Autism

From Learning to Forming Relationships to Achieving Independence

By Chantal Sicile-Kira, Jeremy Sicile-Kira

Palgrave Macmillan

Copyright © 2012 Chantal Sicile-Kira and Jeremy Sicile-Kira
All rights reserved.

ISBN: 978-0-230-11246-9

Contents

Acknowledgments, 
Foreword by Temple Grandin, 
Preface, 
Notes About the Book, 
1 Transitioning Our Young Adult, Transitioning Ourselves, 
2 Creating Lifelong Community and Personal Supports, 
3 Life Skills for a Life Span, 
4 Social Relationships: Friendships, Shared Interests, and Enjoyment, 
5 Love and Intimacy: Relationships, Romance, Partnership, and Marriage, 
6 Living Arrangements: Housing and Home Skills, 
7 Support Staff: Needed Qualities, Skills, and Beliefs, 
8 The Adult Learning Environment: College and Adult Education, 
9 Employment: Earning a Living, 
Closing Comments: Finding Our Way Together to Create Positive Outcomes, 
Bibliography, 
About the Authors, 
Index, 

CHAPTER 1

TRANSITIONING OUR YOUNG ADULT, TRANSITIONING OURSELVES

Rome was not built in a day. I need time to build the Eiffel Tower that my life will become.

—Jeremy

Jeremy's educational experience has run the gamut from typical nursery schools in Europe, to behavior-based home programs, to special education and general education classrooms in the United States. Over the years he learned to say simple three-word sentences—such as "I want ..."—but could not verbalize more than three or four syllables at a time due to motor challenges. When Jeremy entered his local high school, at age fourteen, he was placed in a classroom for the severely handicapped. He began to learn to spell and type at home, and he eventually attended general education classes. Jeremy had a paraprofessional aide and received both occupational therapy services and speech therapy. When he was twenty, he passed the CAH- SEE, the California High School Exit Exam—a requirement in this state at the time—along with passing a certain number of units, and he graduated with a full academic diploma in June 2010 at the age of twenty-one.

The high school district continued to provide services until the semester he turned twenty-two, in January 2011, as it was decided that he was not ready to transition out of school services at that time. While Jeremy was in his last semester of high school, he took his first community college class, and the school district was an enormous support for this transition. Well aware of Jeremy's needs as well as his goals in life, we had started discussions years earlier with his case manager at our local Regional Center about adult services for Jeremy. Regional Centers are contracted with the Department of Developmental Services in California to help plan, access, coordinate, and monitor services and supports to individuals with developmental disabilities. Adult services include (in theory) day programs, work services programs, some education services, and assistance with different types of housing options.

For years I was told, "Don't worry. We understand Jeremy's needs. We'll figure it out." When the first wave of budget cuts became reality a few years back, the case manager and I started to panic, but then I was told there were some creative options that were working for others, and perhaps they would work for Jeremy. The Regional Center case manager had been present at most of his IEP meetings over the years, so they were aware of Jeremy's need for a one-to-one support person and of his goals of getting a four-year degree in communications, becoming a writer, and becoming an advocate for those with autism. Jeremy's plan is to eventually earn enough money to pay for the cost of the support person he needs in order to work. After graduating from high school while attending community college part-time, he became a staff writer on the community college newspaper, had some opportunities to earn money through writing, and was invited to present at autism conferences— which is to say, his goals were not unrealistic.

Six months before his twenty-second birthday, there was still no concrete plan proposed by our local Regional Center, and I was told that it was too early to plan. I did my homework and found the service provider that had the same philosophy and approach to people as my family's.

The ongoing "negotiations" with the Regional Center to provide the support person Jeremy needs for part of each weekday to continue working on his goals of learning at college while using his skills to earn money created much stress for our family. Although I had organized a backup plan so that nothing would change in Jeremy's day-to-day schedule, Jeremy became very agitated and developed symptoms of posttraumatic stress disorder. He could not leave the house, and I could not leave him alone with support staff. He missed the start of the new semester, eventually becoming able to attend after receiving treatment from a trauma therapist. Meanwhile, I developed some health issues, and I realized that for us to stay healthy, we needed to develop a game plan that would work for our family. Jeremy's goals to be fully included in society and to earn a living rested on principles that were ethical and sound, and I was not willing to let the systems in place and their budgeting issues in this economy dictate Jeremy's quality of life. There is freedom from stress in deciding that come what may, you will stick to your principles and find a way to reach your goals.

JEREMY:

Unlike for neurotypical people, when transition occurs for people with autism like me, the process is very difficult. When I left the high school at age twenty-two, my mom and I had a plan. My mom had organized this plan for a long time, but the Regional Center did not back up what they had been agreeing to in theory. They did not have another acceptable plan ready despite my mom and school team working with them for a long time. My mom was planning ahead, but the systems in the great state of California were not cooperating. Being very nervous, I felt like I needed lots of medication, but I knew medication was not a good solution. I was very upset because I felt my mom was doing everything.

Basically the people in power refused to give an answer to our request for a long time. They said they needed to plan for all young adults with autism leaving school before replying, even though we were supposed to have an Individual Program Plan for me. This created a lot of stress for me and my family.

The disturbing thing is, if I and other people with developmental disabilities did not exist, the people in power would have no job. People make money because we exist, but they have a hard time responding to our needs, citing the lack of money. The systems in place are not cost-effective if they have money for salaries for the persons in power, but not enough money for the supports that people need to live and be productive. I think the systems are like big machines and you get what you need only if you stand up like David did to Goliath. David won in the end. The lesson is be brave and stick to your principles.

THE PARENTS

Parents and educators often commiserate about how challenging transitions are for our loved ones on the autism spectrum. Rarely do we acknowledge that they are difficult for us as well.

The transition into adulthood is probably the hardest. For the young adult, there is the loss of structure that school provided for six hours a day...

Details zur Ausgabe

• Verlag: St. Martins Press-3PL
• Erscheinungsdatum: 2012
• Sprache: Englisch
• ISBN 10: 0230112463
• ISBN 13: 9780230112469
• Einband: Taschenbuch
• Anzahl der Seiten: 258
• Kontakt zum Hersteller: Nicht verfügbar
• Verantwortliche Person: KreGa Onlinehandel GmbH; 4950000000000; info@krega-onlinehandel.de; ; Birkenweg 31; Brakel; 33034; Deutschland