Category Archives: Parenting

Aging with Down syndrome

50 and over the hill!I turned 50 this week. Along with that milestone came what I imagine are the typical feelings that people feel when marking a half-century. I felt nostalgic for the time that has passed and wondered how I could have possibly gotten this far without accomplishing so many of my goals. I felt somewhat daunted by the ever decreasing amount of time I have left. I made lists of goals and counted my blessings. It wasn’t about cake and ice cream. It’s serious business this golden jubilee. Continue reading Aging with Down syndrome

#BornThisWay Surprises All Around

Cast of Born This Way on stage at the Emmy Awards
For the first time ever, a series starring a cast with disabilities has won an Emmy Award – Outstanding Unstructured Reality Series

This week has been a very big one for fans of Born This Way on A&E.  The show continues to break new ground and prove that Hollywood just might learn a thing or two from people with disabilities – and their families.

Continue reading #BornThisWay Surprises All Around

Who’s Your Hero? Born This Way Giveaway from A&E

What kinds of people do you admire? Is there a particular quality that you look for in a hero? What do you think qualifies as inspirational? For me there are many different kinds of heroes out there, mostly people who think of others more than themselves. Lately I’ve been thinking a lot about the kinds of parents I admire and why.

Continue reading Who’s Your Hero? Born This Way Giveaway from A&E

“Not Me” – When My Son With Down Syndrome Feels Left Behind

The Myers Brothers

My son Joshua has two “brothers by another mother” who he loves dearly. This picture was taken at the celebration / vow renewal of his youngest brother (left), Today, the middle brother, (right) got married .

Josh recorded a short message for his brother that included “Good job bro,” and “I love you.”  As soon as I stopped the recording, he declared: “End of message!” (Phew! I was worried there for a minute. He can go on and on when he’s on a roll.) Then, he watched the video to make sure it was worthy of sharing. “Yeah, that’s good” he said with a smile of approval.  As I fumbled with my phone trying to figure out how to get the video somewhere where the groom could see it, he added “I had a tear in my eye.” Continue reading “Not Me” – When My Son With Down Syndrome Feels Left Behind

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!

Tragic, But Never Justified. The Need for Planning is All Too Real

A tragic story is being shared on social media today.  It involves yet another parent who decided to take the life of their child with special needs.  In this case, a beautiful 19-year-old young woman was murdered by her own mother. It is being reported that the mother “felt that she was the only one who could take care of” her. While, if we’re honest, many of us have felt this way at some point, it doesn’t excuse such a horrific crime.  We may not be able to prevent such events from happening, but for those of us who wish that we could do something, I suggest we make more of an effort to help parents get the resources they need to plan for the future.

Continue reading Tragic, But Never Justified. The Need for Planning is All Too Real

Sharing Our Stories On Social Media: How Much of My Story Is Mine To Tell?

Self-reflection

What do you do when someone says something that makes you question what you believe? What if the comments give you reason to doubt your vision of yourself and what you are called to do?

That’s what happened to me today when I read an article by Carly Findlay called “When parents overshare their children’s disability”.

It’s not the first time I’ve seen/heard disability advocates express these views. It’s not the first time I’ve pondered the validity of what I do.  We’ve talked about why we feel it’s important to share our stories before. The difference today comes from where I am in the journey on The Road and the honesty of Carly’s words.

Continue reading Sharing Our Stories On Social Media: How Much of My Story Is Mine To Tell?

The Continuum of Down Syndrome

QuestionnnnHave you ever been asked
the question?”

I’d guess the question most frequently posed to parents of a child who has Down syndrome is “Did you know before he was born?” or “Didn’t you get tested?”

Next on the list of FAQ’s would be “How severe is it?”

The first question is offensive because it assumes that if you did know you would have chosen not to go forward with the pregnancy.  The other is equally troublesome because of the implication that there is some type of measure for the amount of chromosome 21 that exists within the cells of people who have Down syndrome.  Both queries reflect the general population’s misunderstanding of who our loved ones are: valuable human beings with every right to exist and be who they are.

Continue reading The Continuum of Down Syndrome