Rock your socks
To mark World Down Syndrome Day awareness
Believe it or not – socks get people talking!
So, choose some socks that are going to get noticed. They may be mismatched socks, or your craziest and most colorful socks – whatever takes your fancy, and wear them today. The idea is to start a conversation, so when people ask you about your socks, you can tell them that you are wearing them to raise awareness of Down syndrome and World Down Syndrome Day (WDSD), which is recognized today.
Every year, on March 21, people around the world come together to mark the day by wearing brightly colored, mismatched socks. Today is symbolic, because people with Down syndrome have three copies of their 21st chromosome. Socks were chosen because the karyotype of Ds chromosome actually looks like mismatched socks.
“When we wear our socks, we are recognizing the importance of all kids with Down syndrome and of giving them opportunity,” said Cheryl Johnson-Newell, founder and director for the Bahamas Down Syndrome Foundation, Bahamas Down Syndrome and Friends Centre and Ty’s Place.
“People wanted something different that people would look at and visually recognize, so when someone sees you with two funky socks, it gives the wearer the opportunity to tell the story that we’re marking World Down Syndrome Day.”
Down syndrome (or Trisomy 21) is a genetic disorder caused when abnormal cell divisions result in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome, according to the Mayo Clinic.
Each person with Down syndrome is an individual – intellectual and developmental problems may be mild, moderate or severe. Some people are healthy, while others have significant health problems such as serious heart defects.
Children and adults with Down syndrome have distinct facial features. Although not all people with Down syndrome have the same features, some of the more common features include a flattened face; small head; short neck; protruding tongue; upward slanting eye lids; unusually shaped or small ears; poor muscle tone; broad, short hands with a single crease in the palm; relatively short fingers and small hands and feet; excessive flexibility; tiny white spots on the colored part (iris) of the eye called Brushfield’s spots; and short height.
Infants with Down syndrome may be average size, but typically grow slowly and remain shorter than other children the same age.
Children with Down syndrome are usually diagnosed before or at birth.
There is no known behavioral or environmental factors that cause Down syndrome.
Most of the time, Down syndrome is not inherited. It’s caused by a mistake in cell division during early development of the fetus.
Translocation Down syndrome can be passed from parent to child. However, only about three to four percent of children with Down syndrome have translocation, and only some of them inherited it from one of their parents, according to the Mayo Clinic.
While WDSD’s 2023 theme is “With Us Not For Us”, Johnson-Newell said their motto at the foundation and center is “Don’t Look Down Always Look Up” because Down syndrome is nothing to be ashamed of by the parent or the person with Down syndrome.
“They have feelings just like you and I and have feelings – and want to be accepted and want to be loved,” she said.
Johnson-Newell, the mother of Jonathan, 19, who has Down syndrome, said when she first became a mother, she started her foundation and school, and took the students at her school swimming with dolphins, on cruises in Nassau Harbour, exploring resorts and horse riding.
Prior to giving birth to her son, Johnson-Newell also had no training in dealing with children with Down syndrome. As a mother, she had to figure it out. She said she read up on the topic, voraciously, and took advice from friends around the world who she said “opened” her eyes to see what could be done. She also traveled to different centers to see what they did.
“When I came back, I said I needed to do something. My whole goal was not just to help Johnathan, but families who could not afford the high prices of centers here.”
Johnson-Newell’s son is on the more severe side of the Down syndrome scale. He is non-verbal, but has learned to sign and is able to let his parents know what he needs.
“He is the reason why I started this whole thing. I thought he deserved the best as far as education. When I opened, I wanted to give him the opportunity to learn to communicate, so he could communicate independently.”
At the center, the children are potty trained and are taught hygiene – things like how to brush their teeth and wash their face.
“What we take for granted, they take longer to learn and I truly believe in teaching them independence,” said Johnson-Newell.
The association/foundation came into existence in November 2007 with approximately 70 families in its database with Down syndrome.
In September 2011, the center started with three children in the school, offering speech, occupational and physiotherapy therapy because Down syndrome children have weak cores. They try to work on strengthening the core of a person with Down syndrome, because once they are strengthened, they can work and do things.
“These kids are amazing,” said Johnson-Newell.
“You see them in movies.” (David DeSanctis is just one person with Down syndrome who recently landed a role in the feature film ‘Color My World with Love’ which aired on the Hallmark Movies & Mysteries channel.)
“You see them modeling.” (Sofía Jriau made history in 2022 when she became the first Victoria’s Secret model with Down syndrome.)
“A couple years ago, one of the Down syndrome kids was the star for Gerber foods.” (One-year-old Lucas Warren was the 2018 Gerber baby.)
“So, they’re getting a lot more recognition where before they were hidden and not allowed the opportunity,” said Johnson-Newell.
When COVID hit in 2019, they had approximately 47 children and adults in their program, with various challenges, and not all with Down syndrome.
The Bahamas Down Syndrome Association, run by parents of children with Down syndrome, was formed in 2005 by parents. The association, of which Betty Taylor is president, was formed, so that parents could come together to ensure the children are able to become members fully included into the Bahamian society, and to support and advocate for their children.
The association’s main thrust, according to Ida Poitier, before the end of year, is to have a survey done to know where all people with Down syndrome are. They are also working on getting a building for two programs – early stimulation where they work with children from the day they are born right up to going to school and when they graduate, have programs for them.
The association currently has members on New Providence, Andros, Inagua and Cat Island.
The Grand Bahama Down Syndrome Society (GBDSS), an organization of volunteers, which was formed in May 2012, has a three-fold purpose – to raise awareness of Down syndrome within the Grand Bahama community; to promote the inclusion of those living with Down syndrome in all facets of life; and to celebrate the accomplishments of those living with Down syndrome throughout their community.
Risk factors include advancing maternal age, being carriers of the genetic translocation for Down syndrome, and having had one child with Down syndrome.
Some parents have a greater risk of having a baby with Down syndrome. Risk factors include advancing maternal age; a woman’s chances of giving birth to a child with Down syndrome increase with age because older eggs have a greater risk of improper chromosome division. A woman’s risk of conceiving a child with Down syndrome increases after age 35. However, according to the Mayo Clinic, most children with Down syndrome are born to women under age 35 because younger women have more babies.
Both men and women can pass the genetic translocation for Down syndrome on to their children.
Parents who have one child with Down syndrome and parents who have a translocation themselves are at an increased risk of having another child with Down syndrome. A genetic counselor can help parents assess the risk of having a second child with Down syndrome.
People with Down syndrome can have a variety of complications, some of which become more prominent as they get older. Complications can include heart defects, gastrointestinal (GI) defects, immune disorders, sleep apnea, obesity, spinal problems, leukemia, dementia, and other problems.
About half the children with Down syndrome are born with some type of congenital heart defect. The heart problems can be life-threatening and may require surgery in early infancy.
GI abnormalities occur in some children with Down syndrome and may include abnormalities of the intestines, esophagus, trachea and anus. The risk of developing digestive problems such as GI blockage, heartburn (gastroesophageal reflux) or celiac disease may be increased.
Because of abnormalities in their immune systems, people with Down syndrome are at increased risk of developing autoimmune disorders, some forms of cancer, and infectious diseases, such as pneumonia.
Because of soft tissue and skeletal changes that lead to the obstruction of their airways, children and adults with Down syndrome are at greater risk of obstructive sleep apnea.
People with Down syndrome have a greater tendency to be obese compared with the general population.
Some people with Down syndrome may have a misalignment of the top two vertebrae in the neck (atlantoaxial instability). This condition puts them at risk of serious injury to the spinal cord from overextension of the neck.
Young children with Down syndrome have an increased risk of leukemia.
People with Down syndrome have a greatly increased risk of dementia – signs and symptoms may begin around age 50. Having Down syndrome also increases the risk of developing Alzheimer’s disease.
Down syndrome may also be associated with other health conditions, including endocrine problems, dental problems, seizures, ear infections, and hearing and vision problems.
According to the Mayo Clinic, life spans have increased dramatically for people with Down syndrome. Today, they say someone with Down syndrome can expect to live more than 60 years, depending on the severity of health problems.