31 for 21, Day 7
Today is World Smile Day. Many people believe the myth that individuals with Down syndrome are always happy. That is simply not true. Individuals with Down syndrome experience a full range of human emotions. However, 99% of individuals with Down syndrome, do report that they are happy with their lives. So maybe individuals with Down syndrome just know how to make the best of things. To look for the joy in every situation. To live life to the fullest. To be happy and show their happiness when ever they can. So share a smile today. Today I choose to share some smiles of some pretty awesome individuals who know how to be happy. Shouldn't we all try to be more like them?
31 for 21, Day 5, by Angie WIlley
Six years ago today, President Barack Obama signed bill S.2781 into federal law. Also known as “Rosa’s Law”, this legislation became a significant milestone in the ongoing battle for dignity, inclusion and respect of all people with intellectual disabilities. The law removes the terms "mental retardation" and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.” While not being formally required many schools and medical facilities have followed suit and have adopted similar wording. In 6 years a lot of progress has been made.
Personally, I have been aware of Rosa’s Law for a few years and always appreciate when others choose their words carefully and purposefully use people first language. Yet it was still a shock to me when taking the boys to the dentist this week and filling out the form to update their medical history, when it asked if there was a history of “mental retardation”. As I filled out the form I contemplated what to do. Should I bring it to their attention or not? In the end, I decided to speak up. So when I took the forms back up, I said, “I’m not sure if this is a pre-printed form, or if you can make changes to, but the term “mental retardation” is out dated. The federal government has officially replaced that word with the term “intellectual disability” based on Rosa’s Law passed in 2010. I would think your office would want to be up to date on the current terminology”. The receptionist looked a bit shell shocked, but graciously thanked me for bringing it to their attention, and assured me that she would let her boss know.
Speak up advocate whenever you can. .
31 for 21, Day 4
Many of us advocate and spread awareness every day of the year, but October is Down Syndrome Awareness Month, and a time for support groups and families to step up their advocating efforts. That's 31 whole days to educate others about what life with Down syndrome is really like.
The 31 for 21 challenge, encourages us to share information about Down syndrome every day during the month, but we felt like we needed to do more. Since a picture is worth a thousand words, we designed some posters that we will be displaying throughout Lincoln in businesses during the month of October. Just $10 will sponsor a poster and we are currently looking for more sponsors to help us spread additional awareness in the Lincoln area. If you would like your child featured on a poster, just email a photo to us at firstname.lastname@example.org, and let us know which poster style you like best. We will send you a digital version to share socially. Printed posters will be ready in just a couple days and you can choose to post them in your favorite establishments, or let us post them in various spots around Lincoln. You can already see posters at the ARC, Nebraska VR, Handprints & Footsteps, Easterday Rec Center, libraries and schools. If your school does not yet have a poster displayed, why not consider sponsoring one?
To make the October Poster Campaign a bit more exciting, we decided to add a small contest. If you see one of these signs around town, take a selfie with it, and the first 5 people who tag @Down Syndrome Advocates in Action on Facebook, or @DSAA_NE on twitter will win their choice of a Down syndrome awareness button. Good Luck!
The top chalkboard poster only comes in gray, but the subway style poster can be made in virtually any color. Here are a few of the buttons styles available or choose a custome button option.
31 for 21 Day 3
In the United States, the proper way to address a person with 3 copies of the 21st chromosome is to say they have Trisomy 21 or Down syndrome. Big D, no s or apostrophe s, small s in syndrome. The characteristic of Trisomy 21 were first described by Dr. John Langdon Down in 1866 and he is recognized as the father of Down syndrome.
"My Aunt was Downs, and we just loved her so much."
“Oh, she just has a little Downs, you can hardly tell!”
“Downs people are never sad! They are always so happy and positive!”
"Sam is Downs.
Phrases like this are all too common in society today. In the not so distant past they were the absolute norm for describing people with Trisomy 21. But then again the practice of putting individuals with disabilities in institutions was also the norm. We have come a long way since then, and inclusive class rooms are now considered the best practice for children with Down syndrome, and the vocabulary is changing with it. The correct way to refer to a person with a disability is to use People First Language which respectfully puts the person before the disability.
A better way to say the sentences above might be:
"We loved my Aunt so much. She had Down syndrome.."
It is hard to tell that she has Down syndrome.."
"Children with Down syndrome experience a full range of emotions.
"Sam has Down syndrome."
It is important to remember that a person with a disability is more like people without disabilities than different! A disability descriptor is simply a medical diagnosis, it does not define who the person is.
A New Diagnosis
When families first enter into the world of Trisomy 21 (T21), also known as Down syndrome, it often happens with with little warning or preparation. Many report being scared, confused, anxious, or even terrified. Often those feelings are also accompanied by deep love and concern for their new or unborn baby.
It is quite a shock that can really send a family into a tailspin. Parents love thier child very much, yet all of their background knowledge (which for many of us was very limited prior to diagnosis) and inner voice may scream out, “This is the worst news possible!”
For some this grieving takes longer to process than for others. However, for many of us, it just takes a few seconds of looking into the eyes of our sweet, precious little baby to realize that this might not be the journey we planned, but our tour guide is pretty darn awesome.
Taking time to grieve for the life we thought we were getting is important step in the healing process, and helps us get to the next step, acceptance.
This photo featuring a sweet girl named Ella sums it up.
Today is the first day of October which marks the beginning of Down syndrome awareness month.
So, why do we need to be aware of Down syndrome anyway? What is the importance of awareness and why we need to bother raising awareness or being advocates for Down syndrome? For most of us, the reason is simple. We have family members who rock an extra chromosome, whom we love desperately. Well, we think they’re pretty awesome, just as they are. We barely see a diagnosis anymore. But we know that other people do.
We would like to put out the challenge, not just to be aware of Down syndrome, but let’s acknowledge and accept Down syndrome and the value of each and every individual who has three copies of a 21st chromosome. Because it’s not just about being aware of a syndrome and secretly hoping that it’s not a syndrome we ever have to deal with personally. It is about looking past the stereotypes to see that each person with Down syndrome has hopes, dreams and abilites and are worthy members of society.
Throughout October, we look forward to sharing snippets of life with Down syndrome. We are participating in the 31 for 21 challenge and will be sharing stories, facts, and maybe even some different perspective on the challenges and joys of loving someone with Down syndrome. We look forward to demonstrating the beauty in diversity.
We hope you will join us on this ride.
But first we will leave you with one of the most basic facts about Down syndrome.
Down syndrome occurs when a person is born with 3 copies of the 21st chromosome instead of two..
Down Syndrome Advocates in Action Nebraska, is a group for parents run by parents.