All posts by Stephanie

Meet Dev!

Originally posted 10/16/14.  Go to RaiseExpectations to see what Dev’s been up to.  (Hint – it includes college and the White House)
Meet Dev on The Road We've Shared for Down syndrome Awareness month

Dev just turned 18

She is a Cheer Leader through and through

She loves to dance and sing

Her favorite class is Marine Biology

After graduating high school in the spring, she will be taking classes at the community college

She enjoys challenging herself and annoying her younger brother 🙂

Meet Marcus!

Originally posted 10/11/14

Meet Marcus on The Road We've Shared for Down syndrome Awareness month

Marcus is 24 years old, his birthday is in June and he is already planning the next big party.

His favorite job was making spiral bound planners at Wright Printing, next he’d like to learn how to drive a horse carriage. Preferably in Times Square, but one step at a time, we are on a waiting list with our local Equine Association for this training.

Currently his favorite song is “On Top of the World” by Imagine Dragons. But truly, he has about 100 favorite songs.

Other Favorites:

  • Favorite Broadway song – “Who I’d Be” from Shrek the Musical
  • Favorite food – peanut butter and jelly
  • Favorite TV shows – The Red Green Show, Red Dwarf, The Simpsons and 100 more
  • Favorite Muppet – Walter
  • Favorite City to visit – New York City and Las Vegas
  • Favorite show in Las Vegas – Terry Fator
  • Favorite Holiday – Halloween
  • This Year’s Costume – Jack Skellington
  • Favorite Pastime – ProTools Recording session with Dad.

Creative Works due to be published/produced within the next year: Black Day: The Halloween Band (a story book and animated short) and “Cassie through the Closet Door” (a one-act play).

When asked, “What do you want to be when you grow up?” He answered, “Myself.” 

You can follow Marcus on Facebook and Twitter!

THE TRUTH ABOUT DOWN SYNDROME AWARENESS MONTH AND RACIAL HEALTH DISPARITIES

Originally posted 10/25/15
The fight continues. We can only hope that researchers will find this question worthy of study.

National Down Syndrome Awareness MonthOctober is National Down Syndrome Awareness Month and most parents in the community are contributing in their own way. Some share photos on Facebook and other social media. Some tell stories of their child’s accomplishments or point out those of others. A recent article in the San Diego Union Tribune provided many facts about Down syndrome and introduced readers to some individuals who have surpassed society’s expectations regarding the success that people with the condition are believed to be capable of.

The headline reads “Those with Down syndrome living longer, defying limits” with a subtitle of “Better preventive care adds to quality of life.” To attract those outside of the Down syndrome community, the choice in headlines was obvious: a short synopsis of what has changed. The focus on life expectancy however is misleading.

“Debra Emerson, CEO of El Cajon-based St. Madeleine Sophie’s Center, which educates and empowers people with developmental disabilities, said the life expectancy for those with Down syndrome has risen dramatically in recent decades from age 25 in 1983 to 60 today.”

What the article doesn’t tell readers, and most people don’t know (including those most closely affected) is that those numbers only apply to Caucasians. According to a report published by the Center for Disease Control, the numbers for non-whites are still quite dismal.

Racial disparities in Down syndrome

According to the findings, the median age at death for people with Down syndrome during the years 1968—1997 varied by racial group. For whites it increased from 2 years in 1968 to 50 years in 1997. For blacks during the same period, the median age at death increased from 0 to 25 and for other racial groups it only rose to 11.

The study is quite old, as research goes, but those involved at the time warned that it should be investigated further.

“However, racial disparity still exists in DS survival, and further study is needed to determine the causes of this disparity…

Additional study is needed to determine why persons with DS die much younger if they are black or of other races than if they are white. Identification of these factors may permit development of interventions to eliminate this racial disparity and further improve the survival of all persons with DS.”

When the study was first published, ABC News looked for a reaction from one of our national organizations.

“The National Down Syndrome Society said the study indicates a “serious disparity that really needs to be addressed.””

“”We always acted on the assumption that there was some kind of socio-economic kind of disparity,” said Jennifer Schell Podoll, a spokeswoman. “But we’re very surprised reading that survey to find out the racial disparity was so stark.””

Researchers involved in a more recent study (2012) had similarly surprising findings when they looked at childhood survival rates rather than overall life expectancy.  Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.

So while the overall outlook for people with Down syndrome is much improved, a large segment of our population is still dying prematurely. Our national organizations have vowed to make this a priority, but the public has not seen any specific details of how that will be done.

Beverly Johnson
Photo Credit: Down Syndrome World http://downsyndromeworld.org/

Only one voice has risen above the crowd, telling the truth to a national audience. Supermodel Beverly Johnson, first woman of color to be seen on the cover of Vogue magazine in 1974, recently in the media for her involvement in the Bill Cosby scandal, has a cousin who has Down syndrome.  When interviewed for last year’s Down syndrome Awareness Month about her position as national spokesperson for Global Down Syndrome Foundation, Ms. Johnson referenced the health disparities that exist.

“”There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,” she said.”

Meanwhile, another awareness campaign is taking place and people are spreading inaccurate information and half-truths in a well-meaning effort to educate the public.

As the founder of an online organization for parents and caregivers of adults who have Down syndrome, and the mother of a bi-racial 28-year-old man who has Down syndrome, this misinformation is maddening and quite frightening.  As long as we continue to tout the Caucasian numbers as the whole story we allow the status quo to continue.  We cannot be satisfied with this outcome. We cannot present ourselves as advocates for equality and inclusion for people with Down syndrome and other intellectual disabilities and completely ignore the fact that half our population is still dying young!

We need to make ourselves aware of the truth!

It’s a matter of life and death.

Down syndrome and Racial disparities