Monday, October 25, 2010

The people who give me extreme hope

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.

19 comments:

  1. But did you walk away inspired to do an ironman?? :-) SOunds awesome.

    Just FYI as you write about Richard, I am writing about you...for my social determinants of health subject (for my MPH) we have to keep a reflective journal about the readings and lectures. This week we're talking about social capital and patient communities so I'm reflecting on the internet being amazing because it creates these communities across the world...so you're famous too now, just like the lawyer (well, I'm not quite Andreson Cooper...)

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  2. Terrific post! As parents of special needs parents our biggest hopes and dreams are for our kids to "beat the odds" and live happy, successful, self-sufficient lives. It's so inspiring when we hear these stories.

    I'm going to keep an eye out for that autism documentary!

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  3. I love this post. As a new "special needs parent" I'm still at the "compare my daughter to everyone else with the same diagnosis as her" stage - although I know that the same diagnosis doesn't mean exactly the exact same issues. It is SO comforting though to see people having amazingly full lives regardless of their diagnosis. A positive attitude can make all the difference in the world :)

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  4. And again, this is why I keep coming back to your site.

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  5. As the wife of a "special needs" man I come to your blog for a small glimpse into what my husbands childhood was like. I wonder what it was like for him as a child that didn't have quite the normal childhood that most of us did.

    My husband has CP. He lives a normal life. He has gone to college and law school. He has two beautiful daughters that we went to China to adopt. He plays softball. Not very good mind you but he still gets out there and does it. He even mows the grass. Is it painful to watch him struggle physically to do what comes naturally to others? You bet. But he is stronger for pushing himself to do what any other person does.

    I hope that people see my husband as an example of what perseverance and sheer desire can do to change a life. When he was born he wasn't supposed to live through the night. Now he is a 45 year old man living a full and happy life.

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  6. Since I've become a parent, I've had my "very good" days & I've had my "curl up into the fetal position & sob" days, but I've never been without hope. Stories like these are such great inspiration. Thanks for sharing!

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  7. I love coming to your blog, I find it so inspirational. Thanks!

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  8. I provide foster care to a special needs woman and work in our area with many other special needs people. I used to be a live in staff with 3 women, but moved into foster care with one of them this past month. I'm always amazed at how strong and courageous these guys and gals are. To be honest, they are the happiest people I've ever met. You can't be in a bad mood around them, ever! I've seen some of them move out on their own, have their own jobs, and even have strong relationships, getting married and such. I know that they have a harder mountain to climb but I've never seen any of them want to give up. It's amazing.

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  9. Ditto GingerB!

    And I recently posted about an inspiration I encountered a short while ago. I also feel so revived to see adults with cp like my daughter, happily living as anyone else.

    http://oialee.blogspot.com/2010/10/hopeful.html

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  10. Have you heard of David Ring? Google him. Another inspirational man living an 'extraordinary' life.

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  11. I think one issue with "labels" is that it tends to limit the abilities of children with disabilities and perhaps even the expectations that parents have for their kids. Instead of telling parents what their kids will "never do", maybe doctors should start encouraging parents to reach for the stars!

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  12. Julie: I so love why you are here. Your husband sounds amazing, and I am sure people who know him see him as an example of what perseverance can do. I felt that way after just reading about him. And I am showing this to my husband, who doesn't have cp—and I can't get him to mow the grass!!!

    Mo, great post! I will go look up David Ring.

    Sheryl: Nope, not inspired to do an Ironman. Over the weekend someone was trying to get me to do Hot Yoga, which probably won't work either as it seems like double torture. Thx for mentioning me! You are far better than Anderson Cooper.

    Looking Up: Trust me, I still have times like that.

    Michtuck: The work you do sounds amazing. Kudos.

    And Kim: OH, YEAH. After Max was born and the doctors were so grim, I had a meltdown with the social worker and literally told her to not let one doctor in particular near me again unless he could come up with something positive to say. I still remember what I told her: "What good will it do my son if I am completely depressed about his future?"

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  13. Wow Ellen you've mentioned me in your blog! It's really great to hear that I've been able to inspire you through an email all the way from a tiny island called Sri Lanka.

    FYI your blog constantly inspires me and gives me hope about my future. You address disabilities in a very positive way and it's wonderful to know that complete strangers from a thousand miles away are kind enough to actually reply and communicate with people who have disabilities. This world is not such a bad place after all :)

    Remarkable blog! Keep it up!

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  14. Hi Ellen! Awesome post. Richard inspired ME to go run a triathlon! ( I ate a Kit-Kat and got over it. BUT STILL.)

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  15. This post is very inspirational to caregivers. Thank you for sharing. My son is just 9 and diagnosed with cerebral palsy and epilepsy. I too tend to look at others around his age comparing his ability to theirs.

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  16. Michelle @ Stress Relief for CaregiversOctober 25, 2010 at 2:19 PM

    Didn't mean to type this anonymously. Darn keyboard!

    This post is very inspirational to caregivers. Thank you for sharing. My son is just 9 and diagnosed with cerebral palsy and epilepsy. I too tend to look at others around his age comparing his ability to theirs.

    Michelle

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  17. I was lucky enough to get to know Richard Bernstein when he was in law school. He was impressive then and I am not surprised in the least with what he has accomplished.

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Thanks for sharing!



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