Saturday, October 31, 2009
Friday, October 30, 2009
Thursday, October 29, 2009
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Monday, October 26, 2009
Sunday, October 25, 2009
Saturday, October 24, 2009
Friday, October 23, 2009
Thursday, October 22, 2009
Wednesday, October 21, 2009
Tuesday, October 20, 2009
Monday, October 19, 2009
Sunday, October 18, 2009
Saturday, October 17, 2009
Friday, October 16, 2009
Thursday, October 15, 2009
Wednesday, October 14, 2009
Tuesday, October 13, 2009
I'm thinking back over the last year and thinking about all the times that people have asked "What can I do? How can I help? Is there anything you need?"...and at first we didn't know what to say. We didn't know what we were in for and what we needed. If you have just gotten a diagnosis and are just overwhelmed with life right now, this may help. If you are a friend of a friend of a friend, or just know someone who is ill and don't know what to do and they can't find the words to tell you what they need...maybe this will help.
A Story about My Two
How to Live in the World of Possibility
My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss.Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.
My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.
The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.
How? Both stories are about the same person, my daughter.The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)
The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.
The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.
The story of my two daughters represents two different worlds– the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.
The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.
Copywrite 2006, Candee Basford
**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .
***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.
Monday, October 12, 2009
So I came up with this title, because it is a lesson (hard one) that I have had to learn over the last year...since Aubrey was born. My husband has been saying it for years, but I have had to finally listen and prioritize our lives. Some things you just gotta let go...
Sunday, October 11, 2009
The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk® program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.
Over the past fourteen years, the Buddy Walk® program has grown from 17 walks to more than 280 expected in 2009 across the country and around the world. Last year alone, 250,000 people participated in a Buddy Walk®! They raised $10.5 million to benefit national education, research and advocacy initiatives, as well as local programs. These funds enable NDSS and local groups to offer services that support and enhance the quality of life for individuals with Down syndrome and their families.
The Buddy Walk® is a one-mile walk in which anyone can participate without special training. It is a wonderful, heart-warming event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down Syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk® in your local community!
Saturday, October 10, 2009
Friday, October 9, 2009
Thursday, October 8, 2009
Day 8 of "31 for 21". This really is a challenge, but as long as I get it in before midnight, I've still done it for the day...right:)
Wednesday, October 7, 2009
Tuesday, October 6, 2009
So we are on day 6 of "31 for 21" and I wanted to explain a little bit of the science behind Down syndrome. It takes me back to high school to write all this! But it was part of learning about who Aubrey is. Just so you know, we did not have any "testing" done before she was born. We knew we would love her no matter what and she was a blessing. We tried to have the genetics done when she was born, but the test got messed up and we have not had it done to see what type she has. I hope that this gives you knowledge and isn't borning:)