Living Well on the Spectrum...

I came across a book this past week that I think may prove to be beneficial for some members of our group.  I know as Jackson grows into the teenage years and into adult hood, the topics and areas this book discusses may help me to navigate situations and help Jackson plan, prepare for, and successfully execute the next stage of life.

The book is called, Living Well on the Spectrum by Valerie L. Gaus, PhD

While a 7q11.23 Duplication child may or may not have received an official autism spectrum diagnosis, we do know that some treatments to help individuals with autism can also be beneficial for a 7q11.23 Dupe individual. 

As you explore this book, it may help you understand some of the perspectives that a 7q11.23 Dupe individual may experience.  Often times, at this stage of life, it is difficult for Jackson to clearly articulate how he may feel, what may cause anxiety, why certain situations are enjoyable, or why social situations are so uncomfortable.  By utilizing the worksheets and outlines in the book, you may be able to further identify challenges and find additional coping strategies to help individuals become even more successful in their pursuits and in life.

The following is an excerpt from the book.

"On a daily basis, adults on the spectrum face stressful, frustrating, and sometimes debilitating roadblocks that most neurotypical individuals don't appreciate or understand. Author Valerie Gaus, a psychologist who has been immersed in working with spectrum adults for more than 15 years, 'gets it.'

Her newest book...is a straight-talking roadmap that will provide both wind and rudder to help adults navigate daily life and meet long-term goals. Filled with practical strategies to minimize stress and maximize progress toward individual goals, this book exudes an unwavering strength-based, can-do attitude.

Dr. Gaus reinterprets what could be considered deficits and weaknesses of AS/HFA into distinctive strengths that can be used to one's advantage throughout life. She infuses this attitude with candor and sensitivity...She combines an uncanny understanding of the challenges ASD presents with an array of practical, problem-solving tactics. What's different about this book is the methodical, concrete way she helps the spectrum adult assess his or her current way of thinking and functioning, recognize the patterns that are interfering with personal and professional success, and then create a customized step-by-step personal solution plan. Living Well is a powerful guide for achieving well-being in all areas of life."

-Autism Asperger's Digest

Helpful Reading Material

(Contributed by Angela, mom to Jenna)

I am new to Duplication Cares and to posting to the blog so please forgive me if any of these recommendations are repeats!

First, as an introduction, my daughter, Jenna was recently diagnosed with the 7q11.23 Duplication Syndrome. She is already 13 so our worries are slowly turning from "figuring her out" to acceptance and thinking about her adult future.  

So, for the reason I am writing: I would like to recommend two books that I recently read that I could identify with in many ways.

 

The first is Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities.  It is written by the great granddaughter of Henry Ford, Anne Ford, and it's all about her journey from kindergarten through college with her learning disabled daughter. As the title indicates, it truly is an inspiring story. She stays with her daughter advocating for her every step of the way and somehow they keep their sense of humor through it all. Allegra may not be exactly like our kids as she is extremely social, verbal and extroverted, but she does struggle with making friends and the pain of social isolation. I found myself pretty emotional while I was reading, but at the same time the book offers concrete advice for us as well. I don't think Allegra has any diagnosis other than "learning disability", but she was raised before all of the improvements in genetics testing! I think she is currently around 36 and living independently.

Also, I am currently reading another book by Anne Ford, On Their Own, Creating an Independent Future for Your Adult Child With Learning Disabilities and ADHD. As we know, most disabilities do not disappear when our children become adults so this book gives us a roadmap for getting them up and out and then what to realistically expect when they get there!

Both books are loving tributes to Anne's daughter, Allegra.