If you’re a new parent of a baby diagnosed with Down syndrome, either pre- or postnatally, worrisome facts and statistics have a way of bouncing around in your head: mild to moderate cognitive delay, a fifty-fifty chance of a heart defect, a heightened risk of thyroid disorder, celiac disease, leukemia... And this one, a real doozy, regardless of where you stand on the issue of reproductive rights: Reportedly, nearly 90 percent of fetuses diagnosed with Down syndrome are aborted. Considering such dismaying and downright scary stats as these, it’s no wonder so many parents experience a grieving period following their child’s diagnosis. Facts like these can make it seem as if your precious child’s life and future are in danger, and so are your own.
Ruby’s Rainbow Is Changing Lives and Perceptions with Educational Funding for Adult Students with Down Syndrome
Catherine Avril Morris
But, as many people, including individuals with Down syndrome themselves, can attest, it’s not only not all bad, it’s actually quite the contrary — and there are plenty of downright excellent stats related to Trisomy-21 to prove it. Here’s an example: In just three decades, the life expectancy of people with Down syndrome has increased from 25 to 60 years old. Here’s another (actually, three): According to a recent study conducted by researchers at Children’s Hospital in Boston, 99 percent of adults with Down syndrome reported that they were happy with their lives, 97 percent reported that they liked themselves, and 96 percent reported liking the way they looked. (How many typically developing people can claim the same positive outlook?)
Here is another fact that should allay some new parents’ fears: There are over 220 college and university programs for students with intellectual disabilities, and counting. This is huge. In the relatively recent past, people with Down syndrome were often institutionalized on doctors’ recommendations, leaving them little chance to thrive, intellectually or otherwise. School-aged students with Down syndrome were educated separately from their typically developing peers, and educational opportunities after high school were virtually nonexistent.
Fortunately, individuals with Down syndrome are now leading more meaningful and fulfilling lives than ever, and they are shattering the stigma and low expectations that, not so long ago, limited them so unfairly. Public perception of these inspiring individuals is also changing and improving, thanks in part to the efforts of organizations like Ruby’s Rainbow.
Ruby’s Rainbow is a nonprofit organization that provides educational scholarships to adult students with Down syndrome who are pursuing postsecondary education, enrichment or vocational classes. The organization was founded in 2012 by Liz and Tim Plachta following the birth of their second daughter, Ruby. When Ruby was born, the Plachtas discovered she was “rockin’ an extra chromosome” — a third copy of the 21st chromosome, to be exact. (“Rockin’ that Extra Chromosome” has become the Ruby’s Rainbow tagline, reflecting the organization’s fun, upbeat spirit.)
As the Plachtas became involved with their local Down syndrome community, they realized they wanted to do something extraordinary to help these inspiring people reach their highest potential. When they learned that college opportunities were increasing but postsecondary educational funding was nearly nonexistent for students with Down syndrome, Ruby’s Rainbow was born.
Now in its third year and entirely volunteer run, Ruby’s Rainbow has so far provided scholarships to 42 individuals with Down syndrome. The organization has grown steadily each year, both in scholarship amounts and in numbers of “Rockin’ Recipients” — the students receiving educational grants. In 2012, Ruby’s Rainbow granted 11 scholarships; the next year, the organization granted 13. This summer, the organization granted scholarships to 18 Rockin’ Recipients.
As postsecondary educational opportunities for students with intellectual disabilities continue to increase, Ruby’s Rainbow anticipates substantial growth in the coming years. This means the organization’s volunteers have their work cut out for them, since meeting the rising need for scholarship funds will mean securing more and bigger sponsors. So far, the organization has raised scholarship funds through private donations, corporate sponsors, and two annual fundraisers. In the future, new strategies may need to be implemented to secure more funding, but this is a challenge the Plachtas welcome and embrace.
For now, Ruby Plachta is still in preschool, but her parents fully expect she will go to college someday. By the time she is of college age, the educational landscape may look completely different for students with intellectual disabilities — and with any luck, it will be a further improvement on current programs and opportunities. As with anyone, there is no limit to what individuals with Down syndrome can accomplish and achieve, especially when they have access to affordable educational programs that support their learning and development.
To find out more about Ruby’s Rainbow, to donate, or to apply for a scholarship, visit www.RubysRainbow.org or contact Liz Plachta at email@example.com. You can also follow Ruby's Rainbow on Facebook and Twitter!
About the Author
Catherine Avril Morris is a writer and teacher living in Austin, Texas. She is also mother of a three-year-old daughter who is rockin’ an extra chromosome, and a one-year-old son who is typically developing. You can contact Catherine at firstname.lastname@example.org.