CNJ+ March 2023

WORLD DOWN SYNDROME DAY SADI E MI LA and Meet

By, Pam Teel March 21 st is World Down syndrome Day, (WDSD), which is a global awareness day officially observed by the United Nations since 2012. The date for WDSD - the 21 st day of the 3rd month, was selected to signi fy the uniqueness of the triplication (trisomy) of the 21 st chromosome, which causes Down syndrome. Down syndrome (or Trisomy 21) is a condition in which a person has an extra chromo some. Chromosomes are “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows. Around 1 in every 800 babies will be born with Down syn drome. Down syndrome occurs naturally: there is no known cause. It usually causes varying degrees of intellectual and physical disability and associated medical issues. Most of us have 23 pairs of 2 chromosomes for a total of 46. Those with Down syndrome have an extra copy of the 21st chromosome. (Thus, the name Trisomy 21) Down syndrome affects every gender, race, nationality, and socioeconomic status. There are approximately 6000 babies born every year with Down syndrome. Services to help people with Down syndrome have changed dramatically in the past half

ROLLO FAMILY WITH SADIE

century. In the 1960s, when a baby was born with Down syndrome, one of the only options was to institutionalize a child. Luckily around the early 1970s, things changed for the better. More emphasis went into programs that focused on education and treating other related health issues. There’s no way to cure Down syndrome because it’s a genetic condition, but there are many ways to help people living with the condition manage their disabilities and lead happy and productive lives. It’s not as much about treating Down syndrome, but more about finding therapies and services that make a positive impact. It really comes down to the in dividual, and treatments should be based on what each person needs. For children with Down syndrome, early intervention should start as soon as possible. Under federal law, states must offer free, appropriate public education for all children with (Ds) as part of the Individuals With Disabilities Education Act, for all children with Down syndrome. The law includes coverage of Early Intervention services designed to help address the developmental delays children with Down syndrome face. Such services are available and should be started any time after birth until the child turns 3, or until the child is eligible to enter kindergarten. If you are looking for information on this, check out the National Early Childhood Technical Assistance Center’s helpful list of resources for families. These programs provide children with Down syndrome the various types of therapies they need and that have been proven beneficial, including occupational therapy, physical therapy, and speech therapy. Early intervention will definitely dictate the trajectory for your child. Becca and Andrew Rollo, from Millstone Township, received a diagnosis quite early that their fourth child had Down syndrome. It gave them plenty of time to experience a wide range of feelings on waiting for her delivery. They wondered if they would ever have a chance to go on vacations or take day trips with a child with Down syndrome, or even function as a typical family. Sadie was born May 26, 2020 at CentraState Hospital during the pandemic. Having a baby with a disability during a pandemic actually had a lot of silver linings for the couple because it gave them so much family time doting on the new baby, and a chance to get to know Sadie in a judgment free zone before stepping out into the great, wide world as her advocates. The Rollo’s felt blessed to have found invaluable resources that helped take that fear out of them. One such resource, DSDN (Down syndrome Diagnosis Network), runs support groups for parents through Facebook. “There is a private pregnancy support group, and once your baby is born, they group you into a birth group with other babies born the same calendar year as your baby. Sadie has quite the epic crew of “homies with extra chromies” and we have found an amazing community in the “Lucky Few.” They often say it’s the best club you never would have thought to join. There is a shared experience instantly that bonds families in the Ds community that feels very special. We would be lost without our local group, Network 21 serving Monmouth & Ocean counties. Having others who have gone before and paved the way gives a family new to the journey so much hope and reassurance. While on this journey, I was in spired with some other “lucky mamas” to collect funds to send some “sunshine” to other disability families in an hour of need. We have formally become a 501(c)3, 321 Sunshine. You can find out more at 321Sunshine.org.,” stated Sadie’s mother Becca. There is even a platform on Instagram, started by one of Becca’s friends called: @happinessisdownsyndrome, which has advocacy videos for moms with new diagnosis. “Sadie’s smile lights up a room and she loves to say hi to anyone and everyone. She is known to request hugs and go into the arms of complete strangers and charms them in an instant. No, she’s not always happy- she feels all the feelings the same way the rest of us do, but it does feel like that extra chromosome gave her an extra dose of love to share with the world,” Becca noted. Sign language has been very helpful for Sadie to bridge the gap in communication. People with Down syndrome tend to be visual learners, so she picks up on signs quickly. It also alleviates some difficulty caused by having low muscle tone, which extends to the tongue, which has 8 muscles. As Sadie adds spoken words to her vocabulary, the ASL signs helps to understand her speech by differentiating between words she may say similarly. She has a Signing Time sub scription and according to Becca, the videos by Rachel Coleman have taught her so much at such a young age.

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