I think a lot of us assume that “regular” people can’t really make an impact anymore. The idea of “grassroots movements” can sometimes be written off as idealistic, impotent or inconsequential. That’s why I want to shine a light on an incredible effort going on right now – led by some remarkable, passionate parents -- to end a terrible form of discrimination against people with autism. It’s something we can all be a part of, without much effort.
I’ve blogged before about how insanely expensive it is to treat a child with autism – intensive, one-on-one therapies can cost tens of thousands of dollars every year. That’s obviously beyond the means of most families affected by the fastest growing disorder in America, which is why there are a lot of moms and dads out there – as well as siblings – making incredible sacrifices so that their loved ones can get the therapies they desperately need. Families are taking out second mortgages and emptying out savings accounts and college funds. They’re going broke.
Our HollyRod Foundation (www.hollyrod.org) has a mission to help uninsured disenfranchised families with very limited resources access treatment. I speak with these families regularly and feel blessed to be able to help alleviate their financial burden in even the smallest way.
But, what’s really crazy is that a lot of families affected by autism actually have perfectly good health insurance. The problem is, in about half of the states in this country, insurance companies can explicitly exclude coverage of critical, medically-necessary therapies and other medical services for kids with autism. So if you live in California or West Virginia, for example, you may be paying big bucks for what would seem to be good health insurance. But if your child has autism, you’re going to have to pay out-of-pocket for things like ABA therapy, the most common treatment for autism. Most likely, you’re going to cobble together whatever help you can for your child – whatever you can afford, even though it’s probably not as many hours of therapy as your child needs.
My family is among the small minority who can actually manage to pay out of our own pockets for the therapies our son needs -- but with four children, we still feel it, so I share the anger and empathize with the massive frustration our fellow families feel. Because our kids have autism – and not diabetes or cancer – they are out of luck.
Parents across the country have banded together and fought to change state insurance laws to end this injustice. In just four years, they have already won the fight in 23 states, and the battle continues. They’re fighting against some powerful people, including the insurance companies and their lobbyists. They’re also fighting against ignorance. But these parents are smart, they’re organized and they’re truly inspirational. That’s why they’re winning.
Autism Speaks has a wonderful advocacy web site, AutismVotes.org (I serve on the organization’s board) with information about the insurance reform effort. Check the map and see if your state has done the right thing yet. If not, you’ll find out how you can get involved and help make important change happen for people with autism.
Actress, author, activist and philanthropist, Holly Robinson Peete has been touched by the entertainment industry all of her life. Her career as an actress dates back more than two decades and has led her to becoming a voice for her father, her son and her community. In 1996, Robinson Peete and her husband, Rodney Peete, formed the HollyRod Foundation, inspired by her father’s inspiring battle with Parkinson’s disease, with the mission to help improve the quality of life of people plagued with devastating life circumstances. In 2005, inspired by their son, hollyrod4kids was formed to focus on children’s causes and improving the lives of children affected by circumstances beyond their control, specifically autism.
Holly Robinson Peete will be speaking at The Women's Conference 2010. Watch the live webcast of the Conference here on www.womensconference.org on Monday, October 25 and Tuesday, October 26.
I answered my cell phone as I was stepping out of my local post office one swelteringly hot day this past August. Okay, I admit, I didn’t exactly hear the caller introduce herself, I didn’t recognize the out-of-state number, and someone was honking (a lot!) at the group of kids crossing the street to get to the local duckpin bowling alley…so I answered with the generic and distracted pleasantries, “yes, hello,” “uh-huh,” “oh, thank you.”
And then - in between beeps - I thought I heard her say the word “congratulations,” and then say that “Jan Miller” would be in touch with me in the next few days.
“What a minute…who is this?”
“It’s Lacy from Dupree/Miller & Associates - we got connected through The Women’s Conference.”
“The California Women’s Conference?!”
“I’m sorry – did you say Jan Miller?!”
“Yes…Mary Ann – she is looking forward to speaking with you to congratulate you herself!”
“Wait, wait, wait…are you saying I won The Women’s Conference Publishing Contest?!”
“Yes, Mary Ann…”
“WHO is this?!?”
And so, for the third time in less than a single minute, Lacy patiently re-introduced herself and told me that I had won the contest I had entered after attending The Women’s Conference 2009, and that they were excited about working with me to publish my book.
By this time I was sitting in the hot silence of my car and grabbed hold of the handle alongside my seat and put the seat back – alllll the way. I was afraid I might faint, and the sudden throbbing in my right eyeball felt odd, to say the least.
Someone walking by my car looked in at me laying down and through the closed window asked, “Are you okay?” I gave her a thumbs-up and slowly brought my seat back up to a sitting position.
I met literary agent Jan Miller at The Women’s Conference 2009 at a session she spoke at entitled, “Getting Published.”
Attendees at the Conference were invited to participate in a contest in which they could submit a fiction or non-fiction writing sample for consideration for publication. One winner would be chosen, her book would be published, and she would be invited to speak at the Conference the following year.
My submission was slightly unconventional, a patchwork of timelines and stories and speeches and presentations I’ve given over the last six years of “survivorship.” I always feel a little “jazzed” when I write about my big adventure with breast cancer – it’s pretty shocking, actually, and I usually wind up thinking, “Wow, that chick’s been through the ringer!” And then I realize that chick is ME! I have always hoped that my story could be any-woman’s story, and hoped that the judges would feel the same way I did. I crossed my fingers and my toes and clicked “SUBMIT.”
I’m a breast cancer kickin’ survivor with a unique story – my plastic surgeon once said to me, “Mary Ann, you’re worst-case-scenario. Women will take one look at you and say, ‘I don’t have half the battle she’s had – I can do this.’”
You can do it…you can do anything. My story is not a “how-to” book, but an “oh, yes you can!” book.
And so…I’ll be winging my way west from Connecticut to California, where I will join Jan Miller onstage during The Women’s Conference Day of Transformation to talk about the contest, how I won and what happens next. Transformative? Oh, yes! And I am thrilled that you are all joining me on this next big adventure!
Let’s just say if you learn nothing else, at least know that you never really know why that lady next to you in the parking lot in the post office is lying down in her car!
Mary Ann Wasil Nilan will be speaking at The Women’s Conference A Day of Health, Wellness & Transformation on October 25th. Mary Ann is a six-year breast cancer kickin’ survivor and the Executive Director & Founder of the non-profit organization, The Get In Touch Foundation, and is currently at work on her book, “A Diary of Healing – There’s a Pony In Here Somewhere!”
Read Mary Ann Wasil Nilan's earlier posts:
By the time I was finally able to wear my wedding rings again, nearly sixteen years had passed since my wedding day. A year after I was married in 1993, my fingers were too fat to fit the diamond engagement ring and two gold bands I wore on either side. I’d gained a hundred pounds in my first year of marriage, and that sent me on a 16-year struggle with obesity and morbid obesity. I developed hypertension and Type 2 diabetes. I gave birth to a 12-pound baby because I couldn’t get my gestational diabetes under control. I broke toilet seats and was unable to bathe properly. I was killing myself with food.
I was a food addict, but I didn’t know it. None of the many doctors I saw ever suggested that I was addicted to food, so I didn’t consider it a possibility. All I knew was that I desperately wanted to lose weight and I couldn’t. I tried everything, every meal plan, every exercise routine, to no avail. I thought I was going crazy.
Finally in March of 2008, I took drastic steps to save my life. At 336 pounds, at 34 years old, I had gastric bypass surgery. I was reluctant to do so; I thought having the surgery and “not losing weight on my own” was taking the easy way out. Boy, would that prove to be a stupid thought. I had terrible complications from the surgery that put me back in the hospital twice and caused me to have two subsequent surgeries. I was terribly sick for months, and hopelessly depressed, thinking I’d made the worst mistake of my life.
But slowly, the sun started to peek through the clouds. The weight came off so quickly my head couldn’t keep up with my body, and yes, that was nice, but something more important started to occur to me: food did not have any power over me. I was not a slave to the scale, and thoughts of what to eat did not rule over every minute of every day. I was free.
I can’t remember getting below 300 pounds; I was too sick to really notice or care. I do remember getting below 200 pounds, and I did celebrate, with a happy naked dance in my bathroom, alone. And then I simply went about my day. They were just numbers on a scale, and I didn’t need a scale to tell me how to feel.
But I absolutely remember putting my wedding rings on again. My daughter Emma, then four and a half years old, had never seen the rings. She grabbed my hand and exclaimed, “Mommy! They are so shiny! You look like a princess!”
I smiled down at her, gazing at my diamonds. And then I glimpsed myself in the mirror. Finally, I felt like a princess, too.