My Inspiration to Carry on a Legacy

By Karla Phillips
Like so many children that turn 1, the big event at Vanessa’s birthday party came when she plunged into her cake, emerging covered in frosting and smiling from ear to ear. It provided one of those lasting memories, but it was something I could barely have imagined in the days and months after her birth–a cake-covered smile.
Hearing those words–those scary words: Down Syndrome–just minutes after her birth threw me into a tailspin of shock and sadness incomprehensible except to those who have experienced it. The doctor went through a litany of things that our daughter would never do in her life and all of the things that could possibly go wrong. But she never told us about cake-covered smiles.
Friends and family were also in shock and everything we read just seemed to confirm what the doctor first told us. No promises of cake-covered smiles.
Then when she was a few weeks old I saw her first smile and I knew at that moment that it was all I would ever need. As time went on I realized that contrary to what I read or was told, I simply had a beautiful baby girl who would crawl, scream at her brother, steal his dinosaurs and cover herself with applesauce. And just like other babies she needed milk, clean diapers and cuddles.
What I didn’t realize then was that I would spend the rest of my life convincing the world that she could indeed do great things and fighting to ensure that she had the same opportunities as other kids.
And for this I am forever indebted to those that went before me and fought against outdated stigmas and the right of a free and appropriate education in a public school.
Unfortunately, we just lost two great advocates.
Here in Arizona, we mourned the loss of Representative Laura Knaperek.
The Arizona Republic noted that: “She was a relentless advocate for the most vulnerable in our society, always putting the needs of others before herself.” Working on legislative staff I was fortunate to have a front row seat. From her I learned about the important issues facing the special needs community long before my own daughter was even born. She modeled advocacy with grace and a sense of humor.
On the other side of the country, the special needs community lost another champion.
Virginia news station WUSA beautifully told her story: “Simply put, Laura Lee did things first. . .  Laura broke barriers, becoming the first person with an intellectual disability to attend George Mason University. . . Laura Lee was the first person with Down Syndrome to testify before the Fairfax County School Board, Virginia Board of Education, Virginia General Assembly and Congress.”  
I would be remiss if not mentioning that Laura’s mom, Stephanie Smith Lee, is also a role model for many of us. Not only as a loving mom and fierce champion but in her professional life spending many years in public policy from the Director of the Office of Special Education Programs (OSEP) in the U.S. Department of Education to Senior Policy Advisor for the National Down Syndrome Society’s Policy Center.
With their passing, a gaping hole in advocacy and great sadness is left in our community.
These women taught me what it means to fight with grace and have passion with a purpose. I’ll be forever grateful for their examples and pray that I can somehow carry the torch in my work as an education reformer and a mom.  
I have spent many years encouraging high expectations for all kids but I realize now that I need to demand that all really means all. Fighting for better services and supports for students with special needs has greater meaning when they’re needed to fulfill dreams.
To all the moms, dads, doctors and educators, I urge you to see all children with limitless potential. Don’t see a diagnosis. See opportunities, not deficits. Raise your expectations – our kids will rise to the occasion.
Vanessa and our family still face challenges, and I would be lying if I said I still didn’t have moments of sadness and fear of what the future may hold. But for now, it is clearly surpassed by cake-covered smiles.
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Karla Phillips is Policy Director at the Foundation for Excellence in Education. Follow her on Twitter: @azkarla.

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1 Comment

Charlotte Ransom McKenzie

What a well written and poignant article. You're doing wonderful things for your daughter, and others who face the same challenges. I know how difficult it can be sometimes swimming against the current. You're doing a great job!!

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