Many of us, as parents of spectrum kids, participate in "autism walks" or other events to raise money for autism research. But we don't volunteer anywhere near the same capacity for entities that directly impact our children -- our kids' schools or service agencies. Why?
As much as I sometimes want to, we don't pin a sign to Mareto's shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment.
I love the work organizations like KEEN does, but it saddens me that we actually need to recruit volunteers to fulfill social and emotional needs that wonderful people like Charles are often deprived of.
For the first time ever, my son had ordered his own meal and was understood. As the three of us sat at the table basking in his moment, I noticed my son's attention was drawn to the table behind us. First, he was smiling and then he wasn't. He was frowning.
When my daughter was diagnosed with Down syndrome, I was given a list. A list of potential features and problems to expect. This list is cold, emotionless and almost comes across as grotesque if you are reading it with fear already in your heart.
I watched Sandy Hook on the news last year and the tornado-torn Plaza Towers news reports and tried to imagine my child in the middle of such chaos. People with disabilities were among the hardest hit in disaster areas of Hurricanes Katrina and Rita.
Dani Gillman was a single mom in Metro Detroit with an autistic daughter, Brodie, who ran a popular blog detailing her daughter's challenges and successes as a way to help other parents of autistic children.
You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you're not about to let that girl down.
Using more neutral terminology to describe a person with intellectual disability, when they need to be described at all, is just one more way to respect them. Not the only way, of course; just one. An easy one.
I know there's some really bad stuff that goes along with having a child with autism. But I'm also aware that there's an abundance of gratitude, support, grace, hope, happiness, acceptance and love in our life thanks, in part, to autism.
Being the mother of a special needs child has given me a unique perspective. I have the ability to celebrate the simple moments of parenting, but it has also made fluid my own definition of what I perceive successful parenting to be.