The brief history of a self-published author Except for the 12 copies sitting in an Amazon warehouse in Indiana, I have completely sold out of A Regular Guy: Growing Up With Autism, the book that I self-published 7 years ago. The book tells my story of raising a child with autism (my son Matthew) from babyhood to young adulthood. The book is forever available digitally. I had no intention of self-publishing my book. It was the traditional route or nothing for me, and on the afternoon that … [Read more...]
What I miss most about my mom
I was 14-years old and watching TV on a sunny Saturday afternoon while popping peanut M&M's with a can of Tab. I heard the vacuum go on—it was headed my way. Here comes mom. She had a habit of turning on the vacuum when my brother, sister or I were sitting around when we could be doing something else. Mom reached the TV room, switched off the vacuum and sighed just as I stuffed the empty yellow wrapper in my pocket. “So,” she said, “is this what you’re planning to do all day, just … [Read more...]
Choosing Mom
I was lonely. I had a newborn and a 2-year old, and my family had just moved to a small ranch house in Lafayette, a suburb of San Francisco. Luckily, we were just twenty minutes away from my parent’s house, which was great, because my parents loved spending time with their grandsons, and I cherished their company. I visited mom two or three mornings a week while Dad worked, and we’d watch the boys roll around on the grass while we laughed and chatted, sharing lunch before I drove home, … [Read more...]
Disabled Enough for SSI?
Can you imagine having to prove that you are "disabled enough" to a person you've never met? This is what many of our kids need to do when they turn 18, and are eligible for social security benefits. The following is the story of the day I took Matthew for his appointment: for KQED Perspectives, follow this link. To learn more about other milestones for adults with developmental disabilities, read the following: Conservatorship : Laura … [Read more...]
Reinvention, aging autism mother style
I heard Chesley “Sully” Sullenberger, the heroic airline pilot who landed a US airways plane full of passengers in the Hudson River a few years back, being interviewed on a radio program the other day. “Your not just a hero, are you Sully?” the radio host asked. “That’s right," replied Sully, sounding slightly self-conscious. "I’m more than a hero. I am also a speaker, a consultant, a safety expert, an accident investigator, a television commentator, an author and a thought leader.” My … [Read more...]
“This is not a book about a young man with a disability, but rather a story of love, adaptation, and acceptance.”
Read First Three Chapters Kindle or your favorite local bookstore. Nervous Laughter When I was eight years old, Uncle Russell came to visit. He was my mother's cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy. Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way … [Read more...]
Staying married, autism parent-style
I talked to a group of young autism parents recently and let it slip that my 28th wedding anniversary was coming up. I heard a collective gasp, and then applause. I felt like I was on the set of Oprah (or what the set of Oprah was like before she moved on.) A teary eyed young woman raised her hand. “How have you stayed married?” she asked, “I hear the divorce rate is high for parents of children with autism, and I’m terrified.” I’d heard that statistic in different versions over the … [Read more...]
Preparing schools for the “new” definition of autism
You have heard the news, and if you are a parent of a child with high functioning autism or Asperger's Syndrome, you are worried! By May 2013, an autism diagnosis will likely be much harder to obtain than in the past. The American Psychiatric Association is making final revisions to its Diagnostic and Statistical Manual of Mental Disorders, including drastic changes to the criteria by which individuals are diagnosed with autism. While these changes will have less impact on those … [Read more...]
Autism Q&A: Does it get easier as our children age?
I spoke at a conference recently where a number of parents with young children with developmental disabilities attended. “What is one thing you would tell parents of a newly diagnosed child?” was the final question during the Q&A period, and it’s one that I am asked frequently. “It gets better,” I said, “It really does.” A young (exhausted looking) woman in her thirties came up to me after and asked me what “It gets better” means. Today I celebrate Matthew's 26th birthday, and am … [Read more...]
Why autism moms act the way they do
I ran into a friend at the dog park this morning and she asked me if I was “OK”. “When I saw you last week, you looked like you were on the verge of tears.” What was going on that day? Oh yeah… Autism mom (me)holding it together but about to snap Why to we act the way we do? Here are just some behaviors you may see in moms like me and what they could mean: 1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, … [Read more...]