Living Well with FASD or Other Disabilities by Kenny LaJoy
The description on the back of the book states: (This book) is written by someone who lives with FASD (Fetal Alcohol Spectrum Disorder) and who understands the struggles of living with this disability on a daily basis. Kenny talks about his journey towards acceptance and how to better live with disabilities (and those who love and care for you). This book focuses on the relationships one has with others, themselves, and the world at large. It’s OK To Be You seeks to affirm who you are, what you need, and gives you encouragement. While this book is not all-encompassing, it attempts to cover large swathes of daily living with FASD. If your life feels paralyzed by self-doubt because of your disabilities, this book will prod you to embrace the whole of who you are and that it is okay.
I was excited and eager to read this new book written by an individual with FASD. We need perspectives from all sides, and while there are many books written about individuals with FASD, there are not as many written by individuals with FASD.
In an interview, Kenny stated that he started writing this book for himself. He was going through a depressive state and needed to record his thoughts to help him. It evolved into a book for firstly individuals with FASD and other disabilities and secondly for the people that care about and support them.
Kenny was born in Kyrgyzstan. He moved to America when he was adopted at eight years old. At that time, he was not diagnosed with FASD and his struggles and challenges were at first attributed to his assimilation into the American culture. This book is a roadmap for his shift toward discovery, acceptance and growth.
It is important to note that Kenny is Christian, and his faith is a central part of his life. There are biblical quotes and references, however it is not overwhelming. There are other quotes from and references to a wide variety of sources.
Each chapter begins with a quote. The book divides his reflections, key lessons he has learned and advice or how to apply it for others. The beginning is interspersed with excerpts from his mother’s blog during a time for when his recollection or recall may not be as vivid. It is definitely interesting to read his thoughts now on what his mother said then. At end of each chapter he provides questions for individuals with a disability to think about what they have read and apply to their own circumstances, as well as questions for parents and caregivers.
The central theme of the book is finding something that gives you affirmation and confidence in who you are.
Kenny is very candid and shares personal struggles he has had with others, his family and within himself. His vulnerability in opening up will provide acknowledgement for others with disabilities that there can be a way, like him, to find affirmation of who you are and your inherent worth. He does acknowledge that every individual is unique, as are their circumstances, so he understands that not everyone will have the same path or opportunities, but he hopes that by sharing his journey it will help others in their own. Individuals with FASD have been told for so long what they can’t do, or because of the ‘invisibility’ of the disability or scattered profile, the expectations on them are unrealistic. Kenny wants to help individuals to accept the disability but not let it stop them from discovering who they can be.
A strong message in the book is interdependence. He encourages individuals to seek out and accept help. And when you struggle to grab hold of hope, he tells us to lean on the hope of others.
What I like about the book (besides the obvious glimpse into his world) is he does have a realistic view of life. He says, “Too often we are told that the only limits in life are those that we place on ourselves. We are sold the message that we can do anything if we put in the work. Well, I can’t work harder and overcome my disabilities, and this false message only makes me feel like I am either not working hard enough or that there is something wrong with me. We all have limits and that is okay. Know your limits and hone your skills. We can’t work against our brains or disabilities, but we can work with them and around them. There is no overcoming, but small progress made here and there can make all the difference.”
The book is only 135 pages and divided into 12 chapters, so it is not overwhelming. Kenny is 23 years old so his life experience will be relatable to older teens and young adults. I have left it for my daughter to read, so when she does I will update this post with her thoughts.
I definitely recommend Its OK To Be You. It gives a glimpse into the life of one individual with FASD and provides some concrete ideas, tools and ideas to consider – whether they have FASD, another disability or not. He has appeared on a couple podcasts and is an engaging young man. If you are interested in hearing from him, check out: Episode 146 FASD Hope Podcast and Episode 127 The FASD Success Show.