Did You Take the R-Word Pledge?

Be a fan of Sophie. Be a fan of dignity and respect. Take the pledge and Spread the Word to End the R-Word on 3.31.09. http://www.r-word.org/

The Power of Words, Trillium Project

We are on a mission to make our world more accepting, inclusive, and respectful for all people, particularly those with developmental disabilities. On 3.31.09 we will participate in a national call to action with the Spread the Word Campaign. Words have power. In this case, the r-word has the power to hurt, to devalue, to discriminate. It's a tall order, but one that we WILL get done.

I had the privilege of participating in another activity recently. A very small group of incredibly strong, beautiful, and smart women gathered together over food, wine, whine, conversation, laughter and tears. Before the evening, I knew just one of the women. By the end I had 4 new friends.

Our small group is participating in a fundraiser for Larkin's Place, a multi-generational all-inclusive play & community center-open to all members of our community which has been dreamed up by my friend Amy. The fundraiser is the Trillium Project created by artist Suzanne Keith Loechl. Trillium is dedicated to raising awareness and empowering those facing extraordinary life challenges by expressing their words and stories through the creation of inspired art.

The link between the women there that night was that we are artists and mothers of daughters with special needs. Each need is different, but we share a common bond. After introductions and food we sat around the table, where many powerful things happen amongst women, to share our stories. Suzanne's was of her journey to create this project after her dear friend began battling breast cancer. We shared, we understood, we connected. I'm still processing it all.

This fundraiser for LP is about creative expression through the positive power and flow of words into art. Suzanne takes small tiles and paints them. Words are then written over the painted surface. They can be poems, one line repeated, or anything to tell our stories. After Suzanne protects the words with gloss, they are cut into small pendants and turned into necklaces. (click here) Each pendant carries a small portion of our story that can be shared by many and I promise you, they are beautiful.

The pendants are made from slate. It is a metamorphic rock which is the result of the transformation of an existing rock in a process called metamorphism, which means "change in form." It is cool on your skin despite being born of volcanic lava or clay mixed with ash. The substance is strong, has some weight to it, and reminds me of chalk boards of my childhood where so much learning took place. These touchstones are worn in solidarity as we carry a small part of each other's journey.

By evening's end I felt blessed and recharged in a way I've not felt for a long time. We took our tiles home and my mind began churning. On the 1st tile I chose to write a poem by Lord Byron. Typically it conjures up romantic love, but I've reclaimed it for my daughter. It speaks to me of finding beauty in places you might not think of, such as in darkness or night. Beauty, starry skies, eyes (the windows to our soul), soft, calm, eloquent, smiles, goodness, a mind at peace, heart, love, innocent. All positive words of power. On the 2nd tile I told Sophie's story through the repeated use of I am. On the 3rd tile are lyrics from the Natalie Merchant song, Wonder which has touched and comforted me greatly. I could have filled a thousand tiles and still had more to say. By Mother's Day they should be available. 100% of proceeds go to Larkin's Place.

(click to enlarge my uncut, unglossed tiles)

Local TV Coverage, End the Word Campaign

Sophie and I did an interview tonight with WCIA Channel 3 on our local efforts to Spread the Word to End the Word on 3.31.09. Mark is slated to do an interview with the Daily Illini newspaper and our friend Amy is doing another TV interview the morning of our event. I'll post all articles and links as they become available and as more interviews are scheduled.

We have been so blessed by many in our community who have embraced this call to end the r-word. So many have stepped up to help and the movement has spread near and far. Thank you dear friends. We ARE making an impact.

Most of the interview didn't survive the cutting room floor to make it into the 42 second spot. I talked about the history of the r-word, how the Spread the Word movement came to be, the DSN and Epsilon Delta event at the Illini Union, and Junior League's work to get tables in each of the junior and high schools on 3.31.09. I spoke of the struggles to be included and accepted in society when you have a developmental disability and the pain that this word can inflict on people with disabilities and those of us who love them. Thankfully, they list many of the details here on their website.

You'll see in the clip that the anchor says "Her mom says people can be ignorant and describe her little girl with words that hurt." What I remember talking about was that people who use the r-word as slang are often ignorant of the history of the word and the impact it can have and that we hope to educate others on the power of words. My comment about Sophie struggling was a about how she already struggles with reaching her milestones while living in a society where she has to fight for acceptance and inclusion and that we hope to educate others on valuing all people regardless of ability.

Interviews can be a blur and the final product after editing is always fun to see. Our reporter Jenny Gastwirth was really nice and a joy to work with. They did a good job and I'm grateful that we got coverage already, as the event isn't until next week.

Click here for the story. Try adjusting the bandwidth if you can't get the video to play.

World Down Syndrome Day

Today is the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down Syndrome. Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown. Hence - the 3rd month (March) and 21st day, T21.

This is a copy of Sophie's karyotype (click to enlarge) that shows the 3 copies of chromosome 21.

In honor of my gorgeous girl, we celebrate this day. I'll refer new comers to my first blog post, which is Sophie's birth story (in the back of a moving vehicle).

Here's her first professional photo. Her daddy holds her, just like the cover of the amazing book Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives. We like to think of it as picture of God giving us a great and wonderful gift of our own.

DOWN SYNDROME CREED (author unknown)

My face may be different,

but my feelings the same.

I laugh and cry

and I take pride in my gains.

I was sent here among you

to teach you to love

as God in the heavens

looks down from above.

To Him I am no different,

His love knows no bounds;

it's those here among you.
in cities and towns

that judge me by standards

that man has imparted,

but this family I've chosen

will help me get started.

For I'm one of the children,

so special and few,

that came here to learn

the same lessons as you.

That love is acceptance,

it comes from the heart;

we all have the same purpose,

though not from the start.

The Lord gave me life

to live and embrace,

and I'll do it as you do,

but at my own pace.

Dear Mr. President

When asked about the remark, the White House said the president did not intend to offend.

"The president made an off-hand remark making fun of his own bowling that was in no way intended to disparage the Special Olympics," White House deputy press secretary Bill Burton said. "He thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world."

On his way back to Washington on Air Force One, Obama called the chairman of the Special Olympics, Tim Shriver, to say he was sorry — even before the taped program aired late Thursday night.

click the image below for the official statement from the Special Olympics

Dear Mr. President,

I believe that sometimes the content of one's character can be revealed not in the mistakes we make, but how we go about making amends. I'm watching very closely to see what you do beyond the White House statement and phone call apology to Mr. Shriver.

You picked an interesting time to make such a cruel comparison on national television. In less than two weeks, people from across our nation are coming together to call for respect, acceptance, and dignity for all people regardless of ability. As our celebrity spokesman (actor John C. McGinley) put it so well, "it defies rational thought as to why you would pick on that group."

The 'Spread the Word to End the Word 3.31.09' campaign, which is being led by Special Olympics, has focused on the derogatory use of the words retard or retarded (the R-word), but at its core, this movement is so much more. It is our great hope that we can educate our fellow citizens, not just about the r-word but to go further to dispel the negative stereotypes associated with people with disabilities. When we do this, we hope to change minds about the value of the lives of our children, loved ones, and friends who have special needs. In doing so, there won't be a need for a new word to rise up and take the place of the r-word.

Mr. President, I have no doubt that you did not intend to hurt me or insult my daughter who has special needs with your thoughtless remark. That indeed, is exactly what you did. You did not call yourself the r-word, but your comment had the same meaning. This off-hand remark gave our nation permission to put themselves or others down by making comparisons to those with disabilities. This is unacceptable.

Ours is a community that has done nothing to you, who struggle every day to be included and to prove their value. Last night the leader of our nation used our community as the butt of a self-deprecating joke. It is my job, my duty as a mother to defend and protect my child against such cruel behavior just as it is your job to lead. So lead Mr. President.

On 3.31.09, in your home state, a state ranked dead last for funding for services for people with developmental disabilities, we will be gathering in numbers to Spread the Word. Please consider this a personal invitation to join us at our event. Click the button below for more details.

Stop the Press!

This morning we met with two of our new wonderful Respite workers. While they were here, Sophie decided it was time to take her first assisted steps!!!!!!!!!!! This was a long time coming folks. Here she is walking with Miss A. while her mommy filmed and tried not to bawl my head off.

Here's the superstar at playgroup yesterday.

A few green songs for the day