The following two articles were published in Salisbury Life Magazine in 2014.

More Alike Than Different

The mother of a child with Down syndrome hopes society gains a greater respect for people with the genetic disorder while celebrating World Down Syndrome Day

World Down Syndrome Day is about celebrating people with Down syndrome as the unique individuals they are and creating awareness about the condition. As I reflect on the celebration which took place on March 21, I realize this world is becoming a more tolerant place.

The date is symbolic of the triplication (trisomy) of the 21st chromosome, which causes Down syndrome. The aim of World Down Syndrome Day is to promote awareness and understanding, seek support, and achieve dignity and equal rights for people with Down syndrome. This World Down Syndrome Day marks the 9th anniversary, and each year the number of people who celebrate worldwide increases. The first event was organized on March 21, 2006, in Geneva. In December 2011, the United Nations General Assembly declared March 21 World Down Syndrome Day, beginning in 2012.

World Down Syndrome Day allows us a platform by which to discuss the diagnosis as well as the myths and facts surrounding it. As the mother of a four-year-old boy with Down syndrome, there are several things I want people to understand.

People  with Down syndrome are not happy all the time.
The notion that individuals with Down syndrome are happy all the time is not only false, but worse, it strips them of their individuality. Thinking of people with Down syndrome as innocent cherubs does them a disservice. People with Down syndrome are individuals with thoughts, feelings, issues, and concerns of their own. Though I have a generally pleasant child, that part of his personality has much more to do with him being like his father than the diagnosis. And I’m here to tell you that he can be as stubborn and cranky as the next kid. Our days are sometimes filled with giggles and grins, and other days are filled with a tossed fork, tantrums, and tears. After all, he’s just a boy like any other.

Down syndrome is a spectrum.
You often hear about autism being a spectrum disorder, and it is, but this is also true of Down syndrome. The range of abilities and delays for people with Down syndrome is vast. Though some delays, characteristics, health complications, and struggles are common among those with the diagnosis, challenges and abilities vary very much among the population. Our child and his peers with Down syndrome each have their own strengths and challenges.

Individuals with Down syndrome learn and achieve in academic environments.
According to the National Down Syndrome Society, most people with Down syndrome have mild to moderate cognitive delays. Children with Down syndrome fully participate in public and private educational programs. Children with Down syndrome have been included in regular academic classrooms in schools across the country. The current trend in education is for inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with diplomas, participate in post-secondary academic and college experiences, and, in some cases, receive college degrees. My husband and I have watched firsthand the benefits of inclusion as our son has attended an inclusive childcare/pre-school program at Partners In Learning since he was eight weeks old. He has learned and thrived in this supportive environment.

Individuals with Down syndrome enhance the classroom environment.
I was once at a dinner party where a parent discussed how students of different abilities slow down their children, who, in her opinion, are at a higher level than most children. This type of thinking is very unfortunate. Experience with inclusion has taught us that the practice helps children with disabilities forge increased social networks, have peer models, increase achievement toward IEP goals, and more. However, the practice also benefits the entire class by increasing acceptance for all people, allowing for opportunities to help and teach, and fostering an environment of compassion and respect for all students.

Less words do not mean less understanding.
Don’t underestimate a child with less verbal skills. Many children with Down syndrome understand much much more than they can articulate. Give someone with a speech delay more time to respond to your question. Do not underestimate what a person knows because they have trouble communicating.

There are areas where children with Down syndrome tend to excel before their peers, who are typically developing. For example, research by Down Syndrome Education International shows that children with Down syndrome are strong in the area of social understanding beginning in infancy. According to an article by Sue Buckley, Gillian Bird, and Ben Sacks, children with Down syndrome tend to have better social understanding and social behavior than other children. The article notes that this can help them be successful in community activities and in inclusive education. My child speaks less than any child in his pre-school class; however, I guarantee you that he has the interpersonal and manipulation skills and smile to manipulate adults better than any child in that class.

Words do mean something.
It is not politically correct to expect people-first language.  People with Down syndrome should always be referred to as people first. Instead of a Down syndrome child, you should say a child with Down syndrome. It is a condition or syndrome, not a disease. While it is still clinically acceptable to some to say “mental retardation,” as the parent of a child with Down syndrome, I would ask you to use the term intellectual disability or cognitive disability. Never ever use the word “retarded” in any context, derogatory or other.

At the end of the day, my child, as others with Down syndrome, is just a boy who likes trains, music, swimming, and playing with his iPad. And we are two parents with the same hopes and dreams as the next set. We hope for a happy life and future for our child, and a accepting world is a part of that. Happy World Down Syndrome Day.