Down Syndrome (DS) Awareness month shows that people with DS are just that—people.
“People with DS are making a difference in this world. They are working jobs, getting married, living on their own. They are making friends, impacting social and political agendas, and changing the way we view disabilities. They are happy, loving, kind, and helpful. In other words, they are just like everyone else!” Amy Smith, whose three year old son Luke has Down Syndrome, said.
Smith said that her thoughts about people with disabilities weren’t always like this though.
“I’ve always tried to treat people the same, and I’ve always made an effort to be kind to people regardless of differences. But I never realized that I was looking at people with disabilities with an attitude of pity, as if they must be suffering,” Smith said.
Smith first found out about the possibility that her unborn baby boy might have DS when a routine blood test showed that there was a 1 in 40 chance of him having the disability. Further tests, however, did not support this and Smith’s doctor told her that she was, in his own words, “home free.” Everything was normal for the next few weeks.
“Several weeks later, I began to have complications in the pregnancy, was referred to a specialist, and was again told that there was a very good chance our child would have DS,” Smith recounted. “At that point, we [Smith and her husband] decided to refuse further testing–after all, our baby was going to be a part of our family no matter what!–and prepare ourselves for a child with special needs.”
Smith said that she and her husband began to read as much as they could about people with DS. She said that there was a lot of misleading and discouraging information and not a lot about how much joy and fun Luke would bring along with the difficulties, just like every child.
“I want people to see my child as a child, a typical child who likes to play, run, jump, laugh, watch movies, throw a ball, eat ice cream,” Smith said. “He is a loving, energetic, fun 3-year-old, and while he hits those big milestones at a slower pace, he eventually gets there!”
Down Syndrome Awareness month was created just for this reason—to celebrate the accomplishments of people with DS and to raise awareness about the disability.
“Don’t judge a person based on a disability,” Smith said. “Don’t assume that a person with DS won’t understand what you’re talking about, or that you won’t have anything in common with them. These are amazing people who have so much to offer if the world would just start seeing beyond their disabilities!”
Down Syndrome occurs when individuals acquire an additional full or partial copy of chromosome 21, meaning that there are three copies of that chromosome instead of two. DS is usually diagnosed while the baby is still in the womb. Unfortunately, this is a death sentence for most unborn babies diagnosed with the disability. About fifty to ninety percent of babies diagnosed with Down Syndrome are aborted, although sometimes those diagnoses proves to be inaccurate. Such is the case of my youngest sister, who had a 70+ percent of being born with DS, and my cousin, who had a 90+ percent chance of being born with DS. Both women refused further testing after the initial test because, as my mom said when telling me this story, “It didn’t matter.”
“I think there is a lot of misconception about having a child with special needs,” Smith said. “His [Luke’s] diagnosis doesn’t define who he is, it’s simply a small part of him.”
“I don’t ever want people to think my child is suffering from anything,” said Smith, referring to how she used to think about people with disabilities. “He is happy. He is loved. He is valued. He was created by God with a purpose, just like you and me. He is not a burden!”
Because of this, Smith feels strongly about the use of the words retard and retarded to describe things that are silly or stupid.
“It is hurtful and offensive to people with disabilities and their families. We simply have to get that word out of our vocabulary. People with special needs deserve better. They deserve to be treated with respect, and the word ‘retard’ or ‘retarded’ does nothing but tear them down and label them as worthless,” Smith said.
“Some of the happiest people have Down Syndrome,” Christina Foremen, a junior accounting major, said. “Working with and serving people who have Down Syndrome is a true joy because of their beautiful outlook on life. Working at Camp Barnabas has truly changed my life and I have been blessed by the wonderful campers I have had the privilege to know while serving there.”
Camp Barnabas is a camp specifically designed for people with special needs. The goal of the camp is to give people with special needs a camp experience that they may never get elsewhere.
“People with DS–kids and adults alike–want to be included. They want people to talk to them, accept them for who they are, invite them in to the social circles, and treat them with respect and dignity,” Smith said. “You should never be afraid to talk to them or engage them. You’ll find that many of them are incredibly smart, funny, generous, and easy to talk to.”
Camp Barnabas aims to make sure that people with DS and other special needs feel like they are included in life, that they are important. More information about Camp Barnabas can be found on their website, www.campbarnabas.org.
“Having Luke has most definitely changed my view of people with DS or special needs in general,” Smith said. “What I never realized is that people with disabilities, more often than not, are just like us. They are living life to the fullest and have the same wants, desires, and needs that the rest of us have–they want friends, they want love, they want to matter. That’s why Down Syndrome awareness month is so important.”