Like many other parents, Ossello didn\u2019t know much about Down syndrome when her family received the diagnosis. Working as a flight attendant at the time, she recalls seeing a woman and a child with Down syndrome board a plane.<\/p>\n
\u201cIt just struck me differently,\u201d she says. \u201cFor me, it was comforting. \u2026 I didn\u2019t know there was a whole community out there.\u201d<\/p>\n
From there, Ossello began doing research and connecting with others, which helped her family navigate the unknowns and trust that it would be OK even if things looked different.<\/p>\n
\u201cWhen I was told about Tucker, all I wanted was for somebody to tell me it was going to be OK,\u201d she says. \u201cAnd now look at him. He\u2019s a great child \u2026 He just does things in his own way.\u201d<\/p>\n
What is Down syndrome?<\/strong><\/h2>\nDown syndrome is the most common chromosomal condition in the United States, impacting approximately 6,000 newborns each year.<\/p>\n
Sometimes referred to as trisomy 21 (about 95 percent of cases), the condition is due to an extra 21st chromosome at birth, which impacts how the body and brain develop, often causing mental and physical challenges. The two other primary types of Down syndrome are translocation Down syndrome (about 3 percent of cases) and mosaic Down syndrome (about 2 percent of cases).<\/p>\n
The impact of Down syndrome varies greatly, as it\u2019s a broad spectrum. While some with the condition are high functioning and can live independently, others may require 24-hour, lifelong care. Some of the most common physical features include:<\/p>\n
\n- Flattened face, especially bridge of nose<\/li>\n
- Almond-shaped eyes that slant up<\/li>\n
- Short neck<\/li>\n
- Small ears\/hands\/feet<\/li>\n
- Tongue that sticks out of the mouth<\/li>\n
- Tiny white spots in iris<\/li>\n
- Single line across palm of hand<\/li>\n
- Small pinky fingers that sometimes curve toward thumb<\/li>\n
- Poor muscle tone<\/li>\n
- Loose joints<\/li>\n
- Shorter in height<\/li>\n<\/ul>\n
Prenatal screening and testing can identify individuals at increased risk of having a baby with Down syndrome, and other more involved diagnostic tests are available to identify the condition before the child is born, says Kari Tanta, PhD, OTR\/L, FAOTA, rehabilitation manager for Mary Bridge Children\u2019s Therapy Services<\/a>.<\/p>\n\u201cThis is advantageous for families,\u201d she says. \u201cWe help families receive appropriate prenatal care, know what to expect, and it allows them to start researching and setting up services from day one.\u201d<\/p>\n
Early intervention and the family<\/strong><\/h2>\nTanta stresses the importance of early intervention, as many families will require a variety of support services, including occupational, physical and speech therapy. Starting sooner may allow a child to develop skills at a rate closer to that of a child without Down syndrome.<\/p>\n
The exact services vary depending on the child, but often all three disciplines of therapy are needed to help with common challenges, such as low muscle tone, coordination, cognitive skills, speech, feeding and playing.<\/p>\n
\u201cIt\u2019s about helping the child to develop their skills so they can walk, run, jump and throw a ball, or be able to keep up with their siblings and peers and play,\u201d Tanta says. \u201cThey just need extra help because they have things working against them.\u201d<\/p>\n
Therapy is customized to the child, their family and their shared goals, she says. One family may want to focus on walking to make playing with their siblings easier; another on speech or social skills; another on behavior if their child is prone to outbursts that make family outings challenging.<\/p>\n
The therapy team also provides activities for families to work on at home, as well as Sibshop, which gives siblings of children with Down syndrome and other developmental needs a safe space to be with other siblings, ask questions and have fun, Tanta says.<\/p>\n
Every path is different<\/strong><\/h2>\nTherapists use various assessments to compare the performance of a child with Down syndrome to their peers. These tests help determine which services and goals are most realistic, Tanta says, but that by no means limits the child or their goals.<\/p>\n
\u201cOur lives are always changing and expectations of our world change,\u201d she says. \u201cWe\u2019re never going to put a limit on a child\u2019s potential, because we just don\u2019t know.\u201d<\/p>\n
While some individuals may never cognitively develop past elementary school age, Tanta says it\u2019s important not to rule out the possibility. Her teams don\u2019t want to give false hope, but they do want to be hopeful, especially with so many advancements and growing inclusivity.<\/p>\n
\u201cThere\u2019s so much more technology for communication, even for those who don\u2019t develop verbal skills,\u201d she says. \u201cI\u2019m also so excited for young adults with Down syndrome because so many corporations are welcoming to people with differences and finding places for them to work.\u201d<\/p>\n
There is always room for growth, Tanta says, including access to support services as patients age out of children\u2019s programs, as well as in community acceptance. And as with any condition, stigma and stereotypes still exist.<\/p>\n
![\"Mom](\"https:\/\/updates-www.mccdn.io\/vitals\/wp-content\/uploads\/sites\/15\/2023\/03\/Crystal-and-Tucker-3-225x300.jpeg\")
<\/p>\n
Don\u2019t make assumptions<\/strong><\/h2>\n\u201cSometimes people treat those with Down syndrome like they don\u2019t have any feelings,\u201d says mom Ossello. \u201cIt\u2019s easy to be like, \u2018Oh, they don\u2019t know.\u2019 But they have emotions just like everyone else.\u201d<\/p>\n
She often hears stereotypes, such as the idea that people with Down syndrome are always happy, or that they can\u2019t feel pain due to low muscle tone. Although Tucker is nonverbal, she says he expresses emotions in other ways and, when in pain, shows signs only 15 to 20 seconds after another child might.<\/p>\n
Some with Down syndrome will need assistance with many aspects of life, but others can do things like play sports or hold jobs. Regardless of their cognitive ability, Ossello says it\u2019s most important to empower them to try.<\/p>\n
\u201cHis life matters and he should get to experience all the same things as his peers,\u201d she says. \u201cEveryone has insecurities as a kid, and it\u2019s important for us to remember that it\u2019s OK to have a child with Down syndrome or to have Down syndrome. It\u2019s OK to be different.\u201d<\/p>\n
Resources<\/strong><\/p>\nMary Bridge Children\u2019s Rehabilitation and Physical Therapy<\/a><\/p>\nMultiCare Adult Development Clinic<\/a><\/p>\nDS Connections Northwest<\/a><\/p>\nDown Syndrome Community of Puget Sound<\/a><\/p>\n
Prenatal screening and testing can identify individuals at increased risk of having a baby with Down syndrome, and other more involved diagnostic tests are available to identify the condition before the child is born, says Kari Tanta, PhD, OTR\/L, FAOTA, rehabilitation manager for Mary Bridge Children\u2019s Therapy Services<\/a>.<\/p>\n \u201cThis is advantageous for families,\u201d she says. \u201cWe help families receive appropriate prenatal care, know what to expect, and it allows them to start researching and setting up services from day one.\u201d<\/p>\n Tanta stresses the importance of early intervention, as many families will require a variety of support services, including occupational, physical and speech therapy. Starting sooner may allow a child to develop skills at a rate closer to that of a child without Down syndrome.<\/p>\n The exact services vary depending on the child, but often all three disciplines of therapy are needed to help with common challenges, such as low muscle tone, coordination, cognitive skills, speech, feeding and playing.<\/p>\n \u201cIt\u2019s about helping the child to develop their skills so they can walk, run, jump and throw a ball, or be able to keep up with their siblings and peers and play,\u201d Tanta says. \u201cThey just need extra help because they have things working against them.\u201d<\/p>\n Therapy is customized to the child, their family and their shared goals, she says. One family may want to focus on walking to make playing with their siblings easier; another on speech or social skills; another on behavior if their child is prone to outbursts that make family outings challenging.<\/p>\n The therapy team also provides activities for families to work on at home, as well as Sibshop, which gives siblings of children with Down syndrome and other developmental needs a safe space to be with other siblings, ask questions and have fun, Tanta says.<\/p>\n Therapists use various assessments to compare the performance of a child with Down syndrome to their peers. These tests help determine which services and goals are most realistic, Tanta says, but that by no means limits the child or their goals.<\/p>\n \u201cOur lives are always changing and expectations of our world change,\u201d she says. \u201cWe\u2019re never going to put a limit on a child\u2019s potential, because we just don\u2019t know.\u201d<\/p>\n While some individuals may never cognitively develop past elementary school age, Tanta says it\u2019s important not to rule out the possibility. Her teams don\u2019t want to give false hope, but they do want to be hopeful, especially with so many advancements and growing inclusivity.<\/p>\n \u201cThere\u2019s so much more technology for communication, even for those who don\u2019t develop verbal skills,\u201d she says. \u201cI\u2019m also so excited for young adults with Down syndrome because so many corporations are welcoming to people with differences and finding places for them to work.\u201d<\/p>\n There is always room for growth, Tanta says, including access to support services as patients age out of children\u2019s programs, as well as in community acceptance. And as with any condition, stigma and stereotypes still exist.<\/p>\n \u201cSometimes people treat those with Down syndrome like they don\u2019t have any feelings,\u201d says mom Ossello. \u201cIt\u2019s easy to be like, \u2018Oh, they don\u2019t know.\u2019 But they have emotions just like everyone else.\u201d<\/p>\n She often hears stereotypes, such as the idea that people with Down syndrome are always happy, or that they can\u2019t feel pain due to low muscle tone. Although Tucker is nonverbal, she says he expresses emotions in other ways and, when in pain, shows signs only 15 to 20 seconds after another child might.<\/p>\n Some with Down syndrome will need assistance with many aspects of life, but others can do things like play sports or hold jobs. Regardless of their cognitive ability, Ossello says it\u2019s most important to empower them to try.<\/p>\n \u201cHis life matters and he should get to experience all the same things as his peers,\u201d she says. \u201cEveryone has insecurities as a kid, and it\u2019s important for us to remember that it\u2019s OK to have a child with Down syndrome or to have Down syndrome. It\u2019s OK to be different.\u201d<\/p>\n Resources<\/strong><\/p>\n Mary Bridge Children\u2019s Rehabilitation and Physical Therapy<\/a><\/p>\n MultiCare Adult Development Clinic<\/a><\/p>\n DS Connections Northwest<\/a><\/p>\n Down Syndrome Community of Puget Sound<\/a><\/p>\nEarly intervention and the family<\/strong><\/h2>\n
Every path is different<\/strong><\/h2>\n
<\/p>\nDon\u2019t make assumptions<\/strong><\/h2>\n