I just finished a fantastic autism book – Raising Brandon: Creating a Path to Independence for Your Adult “Kid” with Autism & Special Needs by Amalia Starr. I’m going to deviate from my traditional review format because this book really touched me and I want to share a couple of specific parts with you. Needless to say Starr’s book gets a must-read recommendation from me.
When most people hear autism they associate it with a child. But like Brandon, my son who is now thirty-six, our children grow up, and we want them to live well and learn how to survive in the world.
As a mom, this is what I’m most concerned about – my children growing up, living a good life and surviving in the world in an independent living situation.
Asperger’s Syndrome & Epilepsy
Brandon is my age and has several learning disorders, Asperger’s Syndrome and epilepsy. Amalia is Brandon’s mother and she shares with us the challenges of raising a child with obvious differences in a time when such differences were never to be discussed.
At the age of 9, Brandon had a seizure and was diagnosed with epilepsy. The neurologist cautioned his mom to never tell anyone about his seizure disorder. This was in the early 1980s and evidently something like epilepsy needed to be kept a secret. I can’t imagine the loneliness that Amalia must have felt not being able to share her secret with anyone.
My son also has Asperger’s Syndrome and epilepsy and I get so much support from his teachers, staff at the school and others that have been made aware of his condition. Walking this journey without sharing that knowledge would be immensely more difficult.
Partway through the book Amalia shares a story about a trip to the bank with Brandon when he was 27 years old. The title of the section is “His Infuriating Laughter” and I knew immediately what she was going to describe. Here is an excerpt from that section:
“Suddenly, he began laughing hysterically, but not because he thought the situation was funny. He often laughs when he becomes extremely anxious, but I wasn’t aware of this distinction at the time.”
My son will laugh, sometimes uncontrollably, at the most inconvenient times. When I’m frustrated and he giggles it sometimes makes me more frustrated. I know that he can’t control but seeing the big grin on his face while I’m neck deep in frustration does not help the situation. Knowing that I’m not alone with this frustration does help, though, and next time it happens I promise to be more understanding of my son’s laughter.
Too Much to Share
There are just too many great moments in this book to share so I really suggest that you go out and get a copy to read. Whether you are the parent of an adult child with special needs or your young child just received an autism diagnosis, Amalia’s book will open your eyes. While reading the book I found myself smiling and nodding in agreement, crying at times, cheering at others and ultimately I found myself much more accepting of the unknowns of the future.