Tag Archives: stories

Happy Mothers Day to Those Who Cut The Road

While we’re celebrating our own families today, I’d like to take a moment and wish a Happy Mother’s Day to a specific group of strangers – the Moms who came before us. No matter how old our children with Down syndrome are, there are those to whom we owe a debt of gratitude.

The mothers of the fourteen children represented in the landmark case, Pennsylvania Association of Retarded Children (PARC) vs The Commonwealth of Pennsylvania (1971). Their advocacy helped make it possible for all children with intellectual and developmental disabilities to receive a public education.

 

Moms like Mrs. Donald G. Wyman and 54 others in the “Mothers of Young Mongoloids” who fought for increased funding for NIH research in 1969. They started a letter writing campaign and managed to get 4,000 letters sent to Congress.

Mothers of Mongoloids

 

Women like Eve Shakespeare who believed what society told her, that institutionalization offered the best future for her daughter with Down syndrome, but took the time to bond with her as a young child. How devastating must that battle in her mind have been?

 

 

Melissa Comes HomeStrong women like Mildred Krentel who, unsatisfied with the status quo, took a chance and bought a 35-room mansion and set about creating a more home-like setting for her daughter and others like her. Melmark is still in operation today, providing services for 1,000 children and adults with intellectual and developmental disabilities.

 

 

Loving AndrewAnd women like Romy Wyllie who took the time to write about her own personal experiences raising a child with Down syndrome. Her son, Andrew, was born in 1959 and passed away at the age of 52. Their story is filled with details and records that give readers a glimpse of history on The Road.  [We’re currently discussing that history in The Road Story Club.]

 

And our thoughts today also include mothers like Patti Saylor and Stephanie Smith Lee, who continue to advocate for our children, even after they lost one of their own.

These are but a few of the pioneers that helped us get where we are today. There are countless others. We may not know their names, but we know that without them, our lives would be quite different.

Happy Mother’s Day to all the Ds Moms, past and present!

You’ve helped pave The Road We’ve Shared!

More than a story – a whole book!

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Today we are sharing this story from Gary Bender who answers her own question:
Did I really write a book?

 I started our blog,
The Ordinary Life of an Extraordinary  Girl on August 26, 2009 with the following introduction, “Today  I decided I wanted to chronicle the life of Alex, a 16 year old high school sophomore with Down syndrome. I am hoping to share the triumphs and challenges of raising this remarkable daughter. I choose today to start because it is her third day of school and the first day of football practice. I plan to finish this narrative at the end of July 2010, which coincides with the conclusion of the National Special Olympics in Lincoln, NE where Alex will be representing the state of Colorado in track and field”

I immediately became hooked on writing and almost 550 posts and a book later I still love writing and blogging about Alex.

During the first year of blogging I began to realize I had a story to share. Alex is now 20 and a freshman in college. This did not happen by itself but was the culmination of years of advocacy and outright battles. But all along the way we honored Alex and her dreams for her future. We tried to create an environment where she could succeed and out of that took an unanticipated journey through the many systems that are in place. We traveled through the medical, educational, and state and local funding systems. We learned that was not enough, today’s systems are antiquated and do not meet the needs of this generation of children. As we followed in the footsteps of others who navigated and worked to improve the systems and we created our own footsteps between and around the systems and honored the work of so many past parents.


We share our journey in verbs.


Click to

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From  Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome
is organized
according to a list of verbs that has defined our experience. As the title suggests, the verbs begin with “Grief” and culminate in “Celebration.” The verbs numbered from 1-10 plus the bonus, are relatable to parenting and, frankly, life in general. There are a lot of great reviews here.

I often wonder what possessed me to think I could write a book or even why I would want to write a book.

A book is an investment in time, money and ego, all of which have been impacted by sharing our story in such a public forum. I wrote the draft using excerpts from the blog and hired a professional editor. I was foolish enough to send the manuscript out to a few publishers, all who rejected it with a nice letter about “receiving hundreds of submissions” so I self-published.

Despite the rejections and the start-up costs ($3,000) the reviews have been amazing and I do not regret this decision at all. I do have a
story to share, one of hope and celebration and if I can help new families learn that their futures are bright I will feel fulfilled.


You can find Alex and Gary on the blog: The Ordinary Life of an Extraordinary Girl. Also on Facebook and Twitter.  We are delighted she has shared the story about choosing to share her story! Of course, the best part is that we will continue to hear from Gary about their journey in the months to come.