Over the last couple of years, I have answered questions from other parents who are looking for more information about autism. I decided to pull out sections from each chapter of our book that contain references and some thoughts about different times of parenting an autistic child. A PDF of those excerpts is now available on our site, you can download a copy at Resources, References and Reflections Excerpts
The holiday this week is Patriot Day for September 11th. Over the last few years, as I’ve observed problem over the last few years, I have wondered if I have done enough of service for my community. I have started helping out with the local autism society and sharing our family experiences with other parents of autistic children. Sometimes it seems like a small thing, but I occasionally get comments that my information has helped.
April is almost over and it’s been a busy month. Starting off with April Fool’s day, followed up with Easter and Earth Day and other anniversaries, there are a lot of celebrations as spring arrives. The pictures of trees for this post are for Arbor Day and Earth Day.
In less than a week, we are releasing a book about life with our autistic son. The project started as a recommendation from a friend. The original intent was to share our challenges as a family and give an inside look at what life can be like with autism. While we’ve worked on the book, I have also thought about my own reasons for publishing our story.
- I would like to share a positive story about my son. He is 27 and he has always been interested in visual activities, such as drawing, building with Legos, photography and making movies. He likes to make up stories and when he was younger he created an entire world based on Lego Bricks. At that time he was unafraid to share his stories and I helped him to create a website with information about his creations.
I was at an autism support meeting a few months ago and there was a question about ideas for getting autistic children to sleep. I have my own problems with insomnia and I have gradually built up some techniques I use to improve my sleep. They don’t always work, but perhaps something might help others.
In the last few years I have changed how I view my sons autism. For many years I focused on getting him to fit in with other people, completing his studies so he could go to college, and pushing him to find work and start earning money. I always felt like I had to push, to keep bringing up these topics to remind him of what I thought he needed to do.
In the last year I watched two films about families dealing with autism. The first movie was Life, Animated, based on a true story of parents and their son, Owen. The book described how the family connected with Owen with Disney films. The second movie was Po, based on a fictional story of a single father raising his autistic son, Po, after his wife passed away. The films showed the struggles the father has in taking care of his son while still working.
I continue to learn about autism and I found a new concept, autistic burnout. The term is not an official diagnosis but adults on the spectrum have reported on it. It occurs when an autistic person is spending their time and energy trying to appear normal without any break or rest. Due to the stress of maintaining normalcy, the body and mind wear out and the person suffers from burnout. When this occurs, the person loses skills for social situations, and suffers from fatigue, depression, insomnia, increased illness, and anxiety.
In the last few years I’ve been reading articles by autistic adults. Many of these adults comment about parents how children with Autism Spectrum Disorder (ASD) are treated. One of the common issues in these articles is parents focus on curing autism instead of providing support. Autistic adults view this as an attack on them and a lack of empathy for their difficulties.
Happy New Year! I hope everyone has had a pleasant start for 2015. Our weather has been wintry, for San Diego, and it has been nice to have a few days off to rest up and prepare for all of the various projects I want to work on.
After some years of retirement John has decided to start writing with his debut book of “Dancing with the Universe”. He is currently writing on other books, including another satire called “Elijah” and one about his life raising and teaching his autistic son. This book will focus on John and Tamara’s belief that a one-on-one relationship is one of the keys to working with autistic children. The purpose of the book is to share our family’s experience in dealing with autism when so little information was known and the outcome was grim.