How Families are Bringing Awareness to Down Syndrome Beyond October
Every year, during the month of October, half of the sports nation prepares for the World Series, while the other half lives through football. This October is special, while millions prepare to be ghouls and goblins for Halloween, as this month draws to a close, America is preparing for its first female president.
Since 1979, October has also been the month when America acknowledges Down Syndrome and those who triumphantly endure the disorder. Over the last few years, parents and individuals who have Down Syndrome have changed the way the nation views Downs. People who have the syndrome are educated and functioning members of the society.
Despite the progress and efforts to bring positive awareness, people with Down’s are still stigmatized and the majority of Americans, those who don’t live beyond October, we’re still unaware how much progress those with Down Syndrome have made and the way they’re positive changing the way we perceive what was previously viewed as a disorder.
What is Down Syndrome? What Causes it?
This syndrome is caused by extra chromosomes a baby inherits from the parents, causing changes in the way the brain and body develop. Those who have Down Syndrome may have certain intellectual impairments. Others will be physically affected by the disorder, having a noticeable flat face and short neck. Some of the more serious physical impairments include heart defects and damage to the lungs.
Delaney Gracy, M.D, and Chief Medical Officer spoke on living with down syndrome in the video above saying,
“Down syndrome occurs when a baby has an extra chromosome at conception. No one knows the exact cause but the risk increases with a mother’s age… Here are three things to remember if your baby has been diagnosed. You’re not alone. Down syndrome is the most common genetic condition occurring in one in every eight hundred births.
That means it’s easy to connect with other parents who can share advice and encouragement. Look for support groups in your community or contact the national down syndrome society… People with down syndrome are living longer than ever before and increasing completing high school integrating into society and living independently. Because of the increased risk for things like vision and heart problems it’s very important to take your child for regular checkups with a healthcare provider who has an experience caring for children with down syndrome… Overall, enjoy your baby. Yes, there will be challenges but there will also be joy, just like with any other baby.”
Appreciate The Uniqueness
Parents who have children with down syndrome will have to meet the challenges associated with certain intellectual disabilities of their child. However, more parents have increasingly stated that they appreciate the challenges of the syndrome and realize that their child has a uniqueness that they prefer to endure.
As more people learn about Down Syndrome, they understand that people who have it can lead productive lives and it is important that parents seek to integrate or have their children attend mainstream schools.
In addition, one mother offered these tips:
- It’s not a Down Syndrome baby or Down Syndrome child, they’re your child first, so don’t say a Down Syndrome child say a child with Down Syndrome.
- Your child will still have and achieve milestones.
- There is plenty of support.
- There is a certain beauty in down syndrome.
- Your baby will experience emotions just like anyone else.
- Down Syndrome will not define your child’s existence.
source: Lessons From Raising a Child With Down Syndrome, Parents.com
Although the prenatal diagnosis of Down’s Syndrome has increased the number of families that decide to terminate the pregnancy in its early stages, many parents take delight in their child’s differences and they’re glad they proceeded.
Some have turned to advocacy, as many people with the syndrome not only live productive independent lives, but they’re also completing college and supporting Down Syndrome pride movements.
Living with Down Syndrome and Winning!
Caroline White is a mother who struggled with the concept of her child having the syndrome. Soon after the child was born, she started to appreciate her son’ character. He was more than the diagnosed syndrome. She saw her son as an individual and realized he didn’t need to be anything else. She runs the blog Force Of Nature, which she uses to document her son’s journey and bring awareness to Down’s Syndrome.
Karen Gaffney, in her 40s, has Down’s and she advocates that people concentrate on the things that can be done saying in the interview above,
“The basic things, like graduate from high school, we can do that. I just want to show that we can do a lot of things, that we put our minds and hearts to…”
Teachers with Down’s are also helping to break the stereotypes, such as Bryan Burgess who taught as an assistant teacher at a school in South Carolina.
While progress has continually been made, in Latin America a teacher, named Noelia Garella, has had to fight for the opportunity to become a childhood teacher, overcoming opposition from parents who did not believe she was qualified.
Most recently, the Washington Post featured Meagan Nash who was told that her son, was not qualified to work with a modeling agency because he had Down’s. Since that time, she created a Facebook page called Changing the Face of Beauty encouraging society to change their views on beauty.
Asher Nash photo by: Crystal Barbee Photography
As the month comes to a close, many parents and those with Down Syndrome are committed to awareness, constantly redefining what the syndrome means i and what they can do. They’re winning, learning, educating and encouraging a nation to live beyond October.
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