Choosing Mom

Grandma's house

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.”

Matthew

  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...]

The Golden Hat Foundation: Kate Winslet Talks Back to Autism

I pulled into the parking lot of my 25 year old son’s home near Santa Cruz, California, where he was waiting impatiently. Matthew has autism and lives at Camphill  California, a community for individuals with intellectual disabilities.  I was picking him for his routine first-weekend -of –the-month visit home an hour north near San Francisco. When Matthew climbed into the car for our drive home, he launched into his usual tedious discussion about the origins of the song “Pretty … [Read more...]