Within a week of Max's birth, I was on an e-loop for moms of kids who had strokes. I constantly and shamelessly asked the other moms whether their kids were crawling, walking and talking; at what age they had crawled, walked and talked; when they first knew their kids might crawl, walk and talk. I asked specific questions: Had their babies had trouble feeding? Did their babies clench their fists? Did their babies make babbling sounds and if so, what kind?
I wanted so desperately to know what the future held for Max, and comparing him to other kids seemed like a good way to get clues. The doctors at the hospital had grim predictions. I needed some reassurance, any reassurance, that at least some of those predictions wouldn't come true.
As Max got older, I quit looking at what the other kids were doing and learned to focus on what Max was doing. I found people to give me perspective and inspiration: Max's teachers, his therapists, our wise-and-kind neurologist, the upbeat developmental pediatrician dude who calls Max "sweetheart" and who inevitably mentions that Max has great hair.
Most inspirational of all to me are the adults with disabilities I come into contact with, in real life or in this space. Like the 22-year-old who emailed from Sri Lanka last week asking about treatments in the US for adults with cerebral palsy; she has the spastic kind and has some issues with balance. The cp, she wrote, "affects only my motor skills, such as walking and muscle coordination. I live my life almost as a normal person and I also attend college." This, I loved to hear.
Adults with disabilities help me to not just see the possibilities of what Max might achieve, but believe in them.
Last week, I met an amazingly inspirational person. Through a friend (hi, Margie!) I was invited to attend Advance, a special-needs funding conference sponsored by the Ruderman Family Foundation. One of my favorite sessions was about raising awareness through the media, where I met Elaine Hall, founder of The Miracle Project, a theater and film arts program that integrates kids with special needs and typical kids. "If you don't fit in, stand out," she said in a clip we watched. Hallelujah! Heads up, there's a new documentary out now about autism, Wretches and Jabberers, which sounds fantastic.
Before that session started, I'd been chatting with the guy sitting next to me about this blog. "You're a blogger?" said a man near us. "That's so cool!" And that's how I met Richard Bernstein, an attorney. He told me he's a disabled rights activist; I didn't realize just what a big-deal activist he was till later. This is a lawyer who took on the City of Detroit to fight for wheelchair users to have a right to accessible public transportation, jobs and stores; he won. He's traveled around Michigan, fighting to protect special ed programs and services. He charges no fees for these sort of cases. Oh, and he's been blind since birth.
Here's an interview Anderson Cooper did with him:
Richard Bernstein was one of the keynote speakers. Thing is, the man didn't simply speak. He talked in CAPITAL LETTERS and exclamation points!!! He was full of enthusiasm, encouragement and extreme inspiration. He told the story of a new mom of a blind child who called him and asked, "Will my son ever be normal? Will he be ordinary?" Richard's response: "He won't be ordinary—he'll be EXTRAORDINARY! He'll bring out the best in people he meets!!!"
My heart started doing a happy dance. Richard was just warming up. "I feel BLESSED I was born a disabled person," he said. "Everyone in this room is searching for their purpose. The way I was created lead to my PURPOSE and PASSION and my MISSION!"
He talked about fighting for change, and the work he's been doing. When he mentioned that he'd run the Ironman Triathlon, I was thrilled...but not completely surprised. He's preparing to run the New York City Marathon in a few weeks. As he said, "The spirit can overcome the body, the spirit can overcome the pain, the spirit can CARRY YOUR BODY ACROSS THE FINISH LINE!"
YES!!! I thought, because by now I was thinking in capital letters and exclamation points. Max's spirit has proved to be a major strength. It's the one thing the doom-and-gloom doctors couldn't have predicted: that my child would have the determination to work around his muscle stiffness. And that my child would have the determination to articulate words. And that my child would do it all with the world's biggest grin.
Richard's parting words: "Disabled people might look weak, but make no mistake. Disabled people are THE most STRONG, RESILIENT FIGHTERS you will ever come to know!!!"
I'd gone to this conference because I thought it would be interesting. I walked away more revved than ever to spread awareness about our kids—and inspired about Max's future like I've never been inspired before.
I hope Richard's spirit inspires you, too.
22 hours ago