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October is National Down Syndrome Awareness Month

Kerstin Soell doesn’t identify herself as the "kid with Down syndrome." [PHOTO PROVIDED]

Kerstin Soell doesn’t identify herself as the "kid with Down syndrome." [PHOTO PROVIDED]

What is Down syndrome?

If you Google this question, you are likely to get a common answer such as “genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome.” (Mayo Clinic)

But what do we really know about Down syndrome?

Down syndrome is named after physician John Langdon Down, who first documented and classified characteristic features of people with the condition in the 1860s. At first, the condition was known as Mongolism, and later in the early 1970s the term Down syndrome was adopted thanks to French pediatrician and geneticist professor Jerome Lejeune, who discovered that individuals with Down syndrome have an extra chromosome.

Chromosome studies were then developed to confirm the diagnosis of Down syndrome. According to the National Association of Down Syndrome, medical professionals, under false presumptions, believed it was best to place newborn infants with Down syndrome in institutions because they thought the child was less than human, and the needs of the child were so great that families could not properly care for them.

October is National Down Syndrome Awareness month, an opportunity to celebrate individuals with Down syndrome and educate the community of the truths about those living with Down syndrome and all of their abilities and accomplishments.

There are many facts about Down syndrome. Here are a few provided by the National Down Syndrome Society:

• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

• More than 400,000 people are living with Down syndrome in the United States.

• Down syndrome occurs in people of all races and economic levels.

• People with Down syndrome attend school, have careers, participate in decisions that affect them (self-advocacy) and contribute to society in many wonderful ways.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

• Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

These facts are important because they help us advocate for individuals with Down syndrome and allow us to emphasize that they are a person first.

As a parent of a daughter with Down syndrome, I can tell you from my perspective what Down syndrome really is: Pure unconditional love. Our journey began on July 8 a little over 12 years ago. Kerstin entered our lives without us knowing that she had an extra 21st chromosome. When the doctor first told my husband and I that he suspected Down syndrome when she was born, I remember saying to myself, “What is that?”

Little did I know that that tiny little bundle would provide me with a different perspective on life, a new family (Down Syndrome Association of Central Oklahoma) and a whole wealth of support I didn't even know I needed.

People with Down syndrome have the same expectations, desires, wants and needs as any other individual. They want to achieve academic success, learn to ride a bike or drive, get married, have a career and earn an income comparable to others. They also want to be included in activities.

So, to answer the question, “What is Down syndrome?” Down syndrome is beautiful, kind, smart, athletic, determined, engaging, hardworking, accepting, forgiving and most importantly, loving. I encourage you to look past the physical characteristics and see what is inside Down syndrome. You will be amazed at what you do see.

Sarah Soell is executive director of the Down Syndrome Association of Central Oklahoma and a mother of a child with Down syndrome.

Related Photos
<p>Trafford Gould has Down syndrome, but he is like other teenagers who enjoy music, sports and socializing with friends. [PHOTO BY PAIGE POWELL, FOR THE OKLAHOMAN]</p>

Trafford Gould has Down syndrome, but he is like other teenagers who enjoy music, sports and socializing with friends. [PHOTO BY PAIGE POWELL, FOR THE OKLAHOMAN]

<figure><img src="//cdn2.newsok.biz/cache/r960-d19bac80fc9c9024eb8e7f734287051d.jpg" alt="Photo - Trafford Gould has Down syndrome, but he is like other teenagers who enjoy music, sports and socializing with friends. [PHOTO BY PAIGE POWELL, FOR THE OKLAHOMAN] " title=" Trafford Gould has Down syndrome, but he is like other teenagers who enjoy music, sports and socializing with friends. [PHOTO BY PAIGE POWELL, FOR THE OKLAHOMAN] "><figcaption> Trafford Gould has Down syndrome, but he is like other teenagers who enjoy music, sports and socializing with friends. [PHOTO BY PAIGE POWELL, FOR THE OKLAHOMAN] </figcaption></figure><figure><img src="//cdn2.newsok.biz/cache/r960-6e2c459cdaa70f99af3b52738950224a.jpg" alt="Photo - Kerstin Soell doesn’t identify herself as the "kid with Down syndrome." [PHOTO PROVIDED] " title=" Kerstin Soell doesn’t identify herself as the "kid with Down syndrome." [PHOTO PROVIDED] "><figcaption> Kerstin Soell doesn’t identify herself as the "kid with Down syndrome." [PHOTO PROVIDED] </figcaption></figure>
Sarah Soell

Sarah Soell is executive director of the Down Syndrome Association of Central Oklahoma and a mother of a child with Down syndrome. For more information, go to www.dsaco.org. Read more ›

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