Below is the proper use of language for “Down syndrome”:
• Down vs. Down’s - National Down Syndrome Society (NDSS) uses the preferred spelling, Down syndrome,
rather than Down’s syndrome. While Down syndrome is listed in many
dictionaries with both popular spellings (with or without an apostrophe
s), the preferred usage in the United States is Down syndrome. This is
because an “apostrophe s” connotes ownership or possession. Down
syndrome is named for the English physician John Langdon Down, who
characterized the condition, but did not have it. The AP Stylebook
recommends using “Down syndrome,” as well.
• 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.” Also
avoid “Down’s child” and describing the condition as “Down’s,” as in,
“He has Down’s.”
• 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.
• While it is unfortunately clinically acceptable to say “mental
retardation,” you should use the more socially acceptable “intellectual
disability”. NDSS strongly condemns the use of the word "retarded" in
any derogatory context. Using this word is hurtful and suggests that
people with disabilities are not competent.
Down
syndrome is a genetic condition that causes delays in physical and
intellectual development. It occurs in one in every 691 live births.
Individuals with Down syndrome have 47 chromosomes instead of the usual
46. It is the most frequently occurring chromosomal disorder. Down
syndrome is not related to race, nationality, religion or socioeconomic
status.
The most important fact to know about individuals with Down Syndrome is that they are more like others than they are different.
When they are born, they need the same care as any other infant, diapers, breastfeeding/bottles, soft blankies and snuggles.
As they grow, they begin to enjoy musical toys and mama's sweet singing
They begin to sit, crawl, and walk a little later, it takes a little longer, but they do sit, crawl and walk. When they fall, it hurts the same and they bruise the same.
When they laugh its purely contagious.. and when they laugh its a full belly laugh each and every time. They experience joy and happiness the same.
They enjoy books, computer, tv, pizza, playgrounds, visits with grandparents, playing with siblings and cousins, coloring, jumping, going to preschool. They enjoy learning and playing the same.
They also get mad, DANG MAD, they cry, they push and pinch, they yell when they don't get their way, they want what's their and they want what's yours, they are stubborn, they are upset when people laugh at them or make fun of them, they have the same feelings..
They cry when they get shots, they don't like going to the doctors all the time, they understand that long car rides to Pittsburgh mean getting to see the Mister Rodgers Trolley while we wait for our appointments. They feel pain the same.
They continue to learn something everyday, they continue to teach the world something everyday, in so many ways they are no different than my three other older children. In other ways its not that they are different its that I still have alot to learn!
I love being a part of things that promote Down Syndrome Awareness. One such thing that we have been a part of now three times is the annual Pittsburgh Area Down Syndrome Association's calendar. I was so please to see that the photographer Alicia put up a video of all the beautiful faces this year. Some people are not interested in purchasing the calendar, but still need to see all the personalities Alicia was able to capture. Another Great Calendar Alicia!!!! Thank YOU!!
October is Down Syndrome Awareness Month
For many of us, every day is a chance to promote Down syndrome
awareness—advocating for our children to be included in school and
community activities, highlighting their talents, giving them
opportunities to show just how much they have to share. The calendar,
however, provides us with one month during the year when we can really
step up those efforts. Please feel free to ask any questions you may have
about Down Syndrome or join me in spreading awareness.
Sometimes kids with DS have a rough start
Sometimes parents get blessed with DOUBLE the cuteness
Sometimes parents get blessed with big chubby cheeks to kiss a million times
I have yet to find any statistics out there that are proven, but I can tell you that having identical twins is rare, having identical twins with a genetic condition is even rarer and even rarer yet, is having identical twins with a dual diagnosis of PDD Autism and Down Syndrome. To date, I am the only parent I have found thus far with the dual diagnosis. If you know of another set of identicals with the dual dx, please comment here! I would love to connect.. I know my family is a 1 in a million :)
Down
syndrome fact: Did you know that studies show that having a sibling
with Down syndrome or other disabilities affect them in positive ways
not negative? They tend to be more accepting of others, more
compassionate, and more willing to help those in need. And they don't
feel their sibling is a burden to them. Contrary to popular belief it
also affects cousins uncles aunts and grandparents in a positive way as
well.
So take a look at some of Caleb and Isaac's cousins who will grow up seeing children with Down Syndrome as a "normal" part of their family:
Oldie but goodie,our line up at Easter time of the Hanzely grandkids, several added since this photo!!
Today begins another month to spread awareness.. To be the voice for the many that have none.. Watching this video brought tears to my eyes knowing that this could be my daughter Tristin, and very well may be in another few years.. The older the kids get the more hurtful the words seem when people say them. We go to a resturant and see teenagers running around calling each other tards.. we have family members refer to themselves as retards when they do something wrong... we have movie stars that are looked up to by millions let the word retard slip out on a nationally televised interview and say they didn't mean it that way.
I will confess, before.. I said it.. I joked about it.. but I didn't know.. I didn't know how valuable people with Down Syndrome and/or Autism were. I didn't realize that I was putting them down by joking about not being able to do something as easily as someone else. I didn't mean to hurt others. And perhaps, I didn't mean it that way... But guess what I also didn't know??? I didn't know that other ears were listening to me that may take offense to the word. Other people may have loved ones that inspire them and guide their paths and careers in life. Had I known the joy these people bring to all who get to know them, I would have long ago got involved with them in some form or another. Speech therapist, Physical therapist, Occupational therapist, Early Intervention teachers, summer camp programs, special education teachers.... I have spoken to MANY and I can tell you that each and every one of them say that the children and adults with Down Syndrome that they work with give them far more than they feel they can give back to them. The love and respect that just comes naturally from their hearts is almost embarrassing to me that we have to try so hard to "love thy neighbor" and its just the way people with Down Syndrome are made.
October is National Down Syndrome Awareness Month.. I am going to once again take the challenge to educate about Down Syndrome and share the joys (and challenges) we get to experience on a daily basis. Do NOT take that comment as meaning things are not rough for us sometimes raising 6 year old non-verbal identical twin boys both with Down Syndrome and PDD Autism. There are certainly challenges, and some we may never figure out how to make right.. but seeing the twins be who they are and love like they do is so humbling and heartfelt.
My message today is please PLEASE think about it when you use the retarded word. Instead try to think of something to lift the person up remembering that we are to love all mankind. God made us ALL perfect in his sight. It is the choices we make and the words we use that turn us away from good and seek evil. I do wish someone would have taught me that at a much younger age than I learned myself, and for that I am sorry. But now that I know, I know better... and my mission is to now educate others!!
