world down syndrome day

today is officially world Down syndrome day! to celebrate our first official world Down syndrome day, we are rocking our john’s crazy socks and “nothing down about it” apparel for Brady. in an effort to continue to educate and bring awareness to Down syndrome (and Brady), i thought i would make today’s post just that, educational.

to start, here is a small list of Down syndrome facts:

  1. Down syndrome is the most commonly occurring chromosomal condition
  2. Down syndrome is a genetic condition where an individual has three copies of the 21st chromosome
  3. Down syndrome occurs in people of all races and economic levels
  4. there are three types of Down syndrome: trisomy 21, translocation, and mosaicism
  5. approximately one in every 700 babies in the US is born with Down syndrome
  6. 80% of children with Down syndrome are born to women under 35 years of age
  7. people with Down syndrome have an increased risk for congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions
  8. life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  9. Down syndrome is named after John Langdon Down, a british physician who first fully described the characteristics of the syndrome in 1866
  10. heart defects affect approximately 50% of all individual born with Down syndrome
  11. Down syndrome cannot be cured

next, i want to talk about the language we use to talk about Down syndrome and people with Down syndrome. i have learned a lot in this short 8 months. language as a whole has come a long way, but there is work to be done when it comes to talking to/about people with Down syndrome. i can honestly say i did not know this when we first started our journey during my pregnancy. my hope is that even if only one person reads this post, i have sent one more person out in the world more educated and equipped to help spread the world (and love).

the national Down syndrome society has an incredible one pager outlining the preferred language. here are the main points:

  • people with Down syndrome should always be referred to as people first
  • instead of “a Down syndrome child,” it should be “a child with Down syndrome”
  • avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’.”
  • down syndrome is a condition or a syndrome, not a disease. people “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it
  • “typically developing” or “typical” is preferred over “normal”
  • “intellectual disability” or “cognitive disability” has replaced “mental retardation” as the appropriate term
Irr_Newborn15
Brady’s perfect “sandal gap” a common physical trait among people with Down syndrome

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