Friday, June 15, 2012

Seeking Input, Prenatal Diagnosis of Down Syndrome Pamphlet

Calling all family members, self advocates, friends, and supporters in the Down syndrome community!!! Please, please, please take the time to review this draft pamphlet to be given to families with a prenatal diagnosis or likelihood of having a child with Down syndrome. Let's help make this the best it can possibly be. Our input is important.  The window for providing feedback is short.  Please follow the link & share widely:

Wednesday, June 6, 2012

Welcome Home PAWS

Alexander's 1st grade class participated in a special project this year called PAWS.  PAWS is a little blue puppy that stands for Pet's Amazing World Study.  Each PAWS has his own journal and his mission was to travel and report back about the climate, customs, and other interesting facts that he learned on his journey.  
The class really enjoyed receiving postcards from PAWS, but the journal didn't arrive until the end of the project.  As each postcard was delivered, Ms. P would read it aloud and then it would be hung on the wall.  You can see that PAWS made some exciting stops in these journal pages.
Look closely and you can see PAWS near the trains.

In addition to the trips PAWS documented in his journal, he also managed to travel to many other states and countries thanks to the generosity and kindness of family, friends, and even strangers.  I posted on fb about the project and asked if anyone would be willing to send him a postcard on behalf of PAWS.  The response was overwhelming.
PAWS had a welcome back party and the kids were allowed to bring him home along with their journal and postcards.  As I read through the stack of postcards last night, I was so stunned by the kindness shown to my son.  Friends and family came through for him but I also had a few friends who asked if they could pass the idea along to their friends living in different states and countries.  As a result, Alexander received postcards from:

Portland, OR, Champaign, IL, Myrtle Beach, SC, Minnesota, Staumton, VA, Costa Rica, Paris, France, Denver, CO, Copenhagen, Denmark, Cedar Falls, Iowa, Molkom, Sweden, Zurich, Switzerland, Berlin, Germany, Multnomah Falls, OR, lighthouses of OR, Des Moines, IA, Durham, NH, Ascona, Switzerland, Minneapolis, MN, Indianapolis, IN, Belfast, Ireland, NY, NY, Mt. Hood, Oregon, Ohio, Springfield, IL, Florida, Kilcreggan, Scotland, Ontario, Canada, Baraboo, WI, and Santa Fe, NM.

This is just unreal and we appreciate each and every one of you who participated in PAWS journey which truly took him around the world.  Thank you so much!

Sunday, June 3, 2012

Margaret Cho's Mea Culpa

It all started with this interview.

Then there was a first apology and another (I believe) heartfelt mea culpa HERE  It's hard to hear such stinging words as were spouted in the interview above but it always cuts deeper when it comes from someone whom you respect.

She has been an advocate in her own right for many years.  I cheered with her as she spoke of having self esteem in a revolution that's long overdue. Although she was not speaking about the special needs community, I took to heart these words and adopted them as my own. I posted a short video clip of Margaret to rally our community as we began our campaign to end the "R" word. (see my post with this video clip HERE) She knows what it feels like to be devalued, disrespected, abused, and unaccepted so I guess I always thought she would be one of the celebrities who would "get it" and see the dignity revolution among the special needs community as a sister cause.  I hope she will, someday.

I left her a comment on her website and will post it below.

Dear Margaret,
Thank you for the apology. I am a mother to a little girl with Down syndrome. I’m pro-choice & she was diagnosed prenatally. We chose to keep her because we valued her right from the start. Your words, especially as a long time fan of yours and LGBT Ally, were a slap in the face and an attack on our community. Your apology does appear heartfelt and we all make mistakes. However, I need to tell you that you are so very mistaken that having a child with a disability is a punishment. Our children with special needs are NOT our bodies exacting revenge on us. They are not a punishment for past deeds. As a parent I see my daughter as an equal in this world, not less-than my other children who do not have a disability. My girl is my joy, not a penalty. I fight the good fight every single day to get the rest of the world to see her beauty and her value. I consider it my privilege to be her advocate and look forward to the day that she can advocate for herself for the acceptance and respect she deserves. Come spend a day with us and you’ll quickly see that people with disabilities are so much more like us than different. I truly hope you take these words to heart, join is in the dignity revolution, and take the r word pledge at