Tag Archives: #DSAM19

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

 

The Up Brothers!

Originally posted 10/7/14
These two are cuteness overload! Check out how they’ve grown on their Facebook page!

Picture

Tuesdays in October on The Road, we’ve invited other parents to share their stories.  First to respond to our invitation was Dad, Juan Castillo, who has two sons with Down syndrome.
By Juan Castillo
My name is Juan Castillo and I am daddy to the two most awesome boys in the world. Blake Uriah age 5 1/2 and Dalton Vance age 1 1/2.  They were both born with Down syndrome and are most definitely daddy’s pride and joy.

We had Blake after being married for 20 years, he is our first born, yes I said 20 years but that’s another story. Everything was pretty normal up untill we got that call from the Dr, you know the one that makes your heart stop for a few seconds. He told us that the test had come back positive for Down syndrome and we needed to come in ASAP. He told us all the basic medical jargon and suggested an amnio but we eventually decided against that. When we first found out I took it pretty hard and even had thoughts in my head about abortion.  Michelle on the other hand knew right from the beginning that she was having this baby no matter what.  To be honest I knew nothing about Down syndrome and the only thing I could think of was what is everyone going to say about me.  I had no idea about common health problems or anything.  I think I was more worried about being embarrassed then anything else.  I really didn’t talk to anyone or do research, I wish I had though.   We saw a specialist and according to them they saw no signs of Down syndrome, I was really happy and just knew that God was just testing us.  I even had a dream where I actually saw me and a little boy playing in the front yard and he did not have Down syndrome.  Time flew by and next thing you know it’s January 16th and both Blake and Michelle are about to have the longest 5 days of their lives.  Blake had a really really tough birth, he had heart problems from the beginning and ended up being an emergency c-section.  As soon as he was born my whole life changed my whole way of thinking changed I changed. Blake was born with a lot of problems the main one being imperforated anus, basically he was born with no opening in his bum. He was hauled off by ambulance to another hospital where he had emergency surgery and spent the next two months in the Nicu.  Blake ended up having a total of 3 major surgeries in less then 2 years and having a colostomy bag also. And the at home procedures that we had to do to him were horrible we cried every time we had to do them. The thing is that all those fears of embarrassment or thinking that God would never do that to me just vanished.  I was a dad I wasn’t a Down syndrome dad I was just a dad and my only worries now were of taking care of my son.

Fast forward a few years and now Michelle is pregnant with our second boy.  And again everything was normal until that phone call again, you know the one where you feel like you can’t breath.  We got the news that Dalton could possibly have Down Syndrome also and I gotta admit it was still a shocker for me. Even though we knew that it was a possibility I just didn’t think that it would happen again. I kinda of fell into that old thinking of God wouldn’t do that to us again, we went through enough with Blake, we did our time.  I really thought that things were going to be different this time so once again I found myself getting upset. But this time we took the new maternity 21 test and we found out for sure, we wanted to be better prepared.  I remember thinking why me and why us how can we go through this again. Just like before Dalton decided to have some heart issues and come out early.  He decided to follow Blake and also got a ride in an ambulance to the other hospital but he stayed 3 months in the NICU.  He was born with many problems also and had some really tough at home procedures to follow.

They are both doing better now but will most likely have medical problems through out there lives.

Blake and Dalton are two very special little brothers.  I look at them daily and often wonder what on earth did I do to deserve them how lucky am I to be their  daddy.  All that negative thinking before they were born is normal but all gone now and replaced with nothing but true love for them.

Having two kids with Down syndrome is just like having two kids without Down syndrome, you love them, hug them, kiss them, tell them you love them everyday and do your best to give them everything you never had.

Thanks

Juan Castillo

Daddy to

The One And Only Up Brothers.