I tiptoed into the kitchen a little after 6am to grab a quick breakfast before waking Matthew. He'd been home for a week long summer break, and would be heading back to Camphill California near Santa Cruz, where he lives and works. "I'm ready," Matthew said, and I jumped. He was fully dressed and shaved, a small drop off blood dripping down his chin. He had already packed and loaded the car. We could have breakfast at Peet's Coffee, he told me, and we could beat the traffic. It had … [Read more...]
Autism FAQ: Which battles are not worth fighting?
"I'm ready," called Matthew from his room, just as our family was getting ready to leave for a "fancy" family celebration. He emerged proudly, wearing garden boots, a nice pair of pants, it's top button strained by three plaid shirts (one thick flannel) layered and tucked in. This look was not going to work, but Matthew didn't back down without a fight. "I like plaid, and I shined my garden boots." When you’re a parent, you become programmed to make the most of teachable moments from … [Read more...]
Lightening Up
News Flash! Being the parent of a child with autism can be stressful! You know what I'm talking about. Sometimes you just need to lighten up. My story... Matthew started making signs when he was 13. When it was my turn to host the Book Club meeting, he would tape a “welcome book club” sign to the mantle of the fireplace, and my friends smiled politely. When we ordered pizza, the delivery boy would find a sign on the door that read “large cheese pizza welcome.” During this same period, I … [Read more...]
Autism, parenting, and learning from my mistakes
My son Matthew is approaching his 28th birthday. That would make me a well seasoned autism mom who has learned from doing and making a zillion mistakes along the way. Here is a partial list of key mistakes that I have learned from: Stressing math and reading at every IEP meeting. What good was math and reading if Matthew couldn't connect with his teacher and his classmates? If I could do it over again, I'd encourage his teacher, his aide, and everyone in his therapeutic circle to engage … [Read more...]
Wanted: Special Needs Parent Role Models
One thing they don't tell you when you become the parent of a child with special needs is that a good role model will keep you afloat. Mine was Kathy. She was the first parent of a child with special needs that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel … [Read more...]
5 autism trends that I have noticed
1) The medical community is becoming a friendlier place for people with autism and other developmental disabilities. Some shining examples: HealthMeet®: they aim to improve the health of people with intellectual and developmental disabilities (I/DD) through trainings for medical students and health professionals, community-based health assessments for individuals with I/DD, data collection and analysis including longitudinal health outcomes for people with I/DD, comprehensive … [Read more...]
Love, relationships and people with developmental disabilities: a valentine story
For the past 15 years, Donald and Bonita have been meeting each other every morning at The Arc San Francisco. Valentines Donald and Bonita Bonita makes sure Donald has his glasses and bus pass before he goes off to work at his custodian job downtown. Donald says he likes getting a paycheck so he can take Bonita to lunch. The couple meet back at The Arc at the end of the day and travel to their separate homes. Donald lives at home with his elderly mom; Bonita lives in a … [Read more...]
Autism:12 pieces of advice for parents of a newly diagnosed child.
By the time my son Matthew was given the official diagnosis of autism at age 5, I already knew. This was almost 22 years ago, and I had only heard the “A” word to describe what Matthew probably wasn’t. Back then, autism was not nearly as prevalent as it is today, and it seemed that nobody wanted to be the messenger. Once the diagnosis was confirmed, it was up to me to figure out who to turn to for help. What a difference TWO decades make. Specialists are able to detect the symptoms of … [Read more...]
Autism: Educate thy neighbor
It was a beautiful April afternoon in Lafayette. Matthew, who is now 26, was approaching his fourteenth birthday and painting with watercolors peacefully while his younger brothers Andy and John kicked the soccer ball around in our backyard. We had had our share of bumpy days lately, but this was not one of them. The mail came, and in the midst of the catalogs and bills was an official-looking envelope addressed to Mr. and Mrs. Peter Shumaker that got my attention. On letterhead from the … [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...]