Category Archives: Down syndrome in the media

A Week of Milestones on the Road to #JusticeForEthan

#EthansLegacyFor two long years, Patti Saylor has advocated for change after the death of her precious Ethan. It has meant long hours, countless miles of travel and hours in meetings. The emotional toll of reliving that terrible evening over and over as she raises awareness and tries to ensure that something like this never happens again is unfathomable.
The Down syndrome and disability communities have been behind her, helping when and where we could, but for Patti and her family, this has been a very personal journey. There is good news however! This has been a week of breakthroughs worth celebrating! Today, I want to take a moment and update our community on some of the phenomenal progress that has been made, and celebrate Patti, the Saylor/Richmond families, and the thousands of people who have been touched in some way by #EthansLegacy.

Continue reading A Week of Milestones on the Road to #JusticeForEthan

Disability And the Special Prom

Black top hat with white gloves and rose petals

“The prom is an iconic event in American culture, one that is consistently drawn upon in contemporary media to show the triumphs and travails of youth.  Along with high school graduation, the prom is often heralded as one of the most important experiences in high school, perhaps even of all adolescence.  Images of the prom as a coming-of-age rite permeate our culture.  Yet, if we were to presume that the prom is a rite of passage, to what precisely would it be a rite of passage?” p.2

Best, Amy L. 2000 Prom Night: Youth, schools, and popular culture. 
Routledge, New York, NY.

Big news in the special needs community!

Continue reading Disability And the Special Prom

The Story of a Married couple with down syndrome

Originally posted in Feb 2014, part of The Road’s social theme.

Picture

Monica and David, winner of several documentary film awards including Best Documentary at the Tribeca Film Festival. Have you heard of it? 

The film follows Monica and David, both of whom have Down syndrome, from just before their wedding to just after their one year anniversary. The documentary includes real time video of their day to day lives as well as interviews with Monica, David, and people from their families.
 

Monica’s mother is adoring and perhaps over-protective.
In fact, it’s shocking she allowed this movie to be made because she carries a lot of fear about the world. Which of course, conflicts with her desire to  enable Monica to live a full life and explore her potential. (Sound familiar anyone?)  Monica’s mother admits she has built her life around her daughter, and her daughter’s safety and happiness is her top priority. There are worse ambitions.

I’m overprotective of  Monica, too. I’m glad her family has the means to protect her and care for her new husband as well. Neither of the couple can cook, admittedly. Nor are they allowed to go down to the beach to walk by themselves. They work when they can. They have friends over. They help around the house. 
 
You know what I loved? I loved that there was closed-captioning for those of us who don’t speak Monica and David, but within their home it was a language everyone knew. I remember when Marcus was little and had friends over or in the carpool to-from school, he would banter with his
friends. He spoke Marcus and they spoke Michael/Joey/etc. We parents didn’t always understand, but they did. They understood each other. I wish Marcus could walk around with closed captioning. Not for me, I speak the language, but for everyone else. Folks often give the impression, “If I can’t understand you, you have nothing to say.” I hate that. Closed captioning. Or maybe Douglas Adams’ babel fish. That would be the best. But I digress…

So the question is, what did everyone else get from the story of Monica & David? Did the closed captioning allow people’s minds to open? Did mother’s sharing their hopes and fears allow people’s hearts to open?
  Did parents with young children with Down syndrome feel a burst of hope or a  dose of dread at these outcomes, at this story of a life?

Regardless, I’m glad  Alexandra Codina told this story the way she did. The clips were honest. There weren’t contrived emotions from contrived moments. *Advocate to the reasonable* it’s all we can really do, and I feel she did it well. Have you seen Monica & David? It’s on Netflix now and also available on DVD. Let me know what you think.

 - Mardra, Grown Ups & Downs

Farm Kings – What’s the Verdict?

Ben Kin on The Road We've SharedBen King from “The Farm Kings”

I’m not a big TV watcher – unless it’s on Netflix or Hulu – but I know there is a reality TV show on GAC that I need to see. (Yep – thanks again Mom!)


Join the King Family of Freedom Farms as they battle the elements – and each other – to keep the family business going. This hardworking family will keep you laughing as they provide the Pittsburgh region with the very freshest produce possible.  

The King family consists of Mom, Lisa (age  51) and her ten kids – nine boys and one girl.  The youngest of them, Ben (13), has Down syndrome.

I stumbled on an article posted on January 2nd on the show site entitled “Farm Kings Q&A: Lisa King on Motivating Children with Down Syndrome”   I wanted to see if she had some good advice that we could post on the site.

“Sometimes it’s very difficult to motivate children with Down syndrome,” says Lisa. “You give birth to nine other children who are very athletic, and then you have this child that you have to push and encourage. It’s a struggle for Ben.”

“Since we’ve started taking these walks with Ben, he’s lost about five pounds,” adds Lisa.”That just shows me that if I can inspire Ben to lose weight, I can inspire a whole group.” With Ben as her motivation, Lisa aims to inspire her family of customers to eat right and exercise. And she continues to find ways to challenge Ben to stay fit.

Hmm….   Okay, I’m going to reserve judgement until I actually see the show.  I know that sometimes you can get quoted out of context or your thoughts can get shortened by an editor….  You can read the rest of the article – and the questions they’ve gotten over the past two + seasons about Ben.  

But the article made me want to see what else was out there.  I did a search (or two) and found a few more articles, most of which focus on the “hunky” older brothers and how they look with their shirts off.  (lol).  

Another theme that shows up is how “The Farm Kings” is unique compared to other reality shows because it doesn’t focus on the personal lives of the family members.  Kudos to them for that!  And, I found a video clip where they had a fund raiser on the farm for Special Olympics.  Kudos for that too!
The Washington Post wrote an article about how the ‘Farm Kings’ do Thanksgiving, without the stress.  In the extensive interview that includes some recipes from Lisa, the only mentions of Ben is how he “prefers to carry “empty baskets rather than full ones” and “loves to set the table.”  

Ben does have his own bio slot on the GAC website just like the other ten family members.

BenBorn with Down syndrome, Ben is an amazing kid, doted on by the whole King family. However, no one treats him differently because he has special needs and he is right there working alongside his brothers in the fields. The Kings call Ben a blessing and feel so lucky he is in their lives.

The farm also has its own website.  

Now, I’m not sure why something seems strange to me – in all fairness I’ve never seen the show.  Maybe Lisa King is trying not to overexpose her youngest son for fear of looking like she’s taking advantage of him.  At first I thought maybe he didn’t like being around all the noise and commotion that must accompany a production like that.  I got my answer to that question in an article written in the Pittsburgh Post-Gazette

It’s especially warming to see how youngest son Benjamin has adapted. Born with Down Syndrome, he was reluctant to be around the cameras at first but has grown to love the attention.

And again in an answer that Lisa wrote in response to a question she received via Facebook:

From Jamie Barker via Facebook:
Does Ben struggle in front of the camera?

Lisa: Haha, He actually  loves being in front of the camera, sometimes we actually have to tell him that’s enough.

So I’d love to get some input from people who are fans of the show and parents/caregivers of someone who has Down syndrome.   

Choose as many as you think apply – or add your own answer.

The online community by and for parents and caregivers of adults who have Down syndrome