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Down Syndrome Association of the Emerald Coast

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Down Syndrome Association of the Emerald Coast

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The National Down Syndrome Congress (NDSC) offers resources of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of prenatal diagnosis through adulthood. NDSC hosts the Ages & Stages Resource Library which offers documents and articles for each age or stage families may be navigating through or toward.

The mission of the Down Syndrome Diagnosis Network is to connect, support, and provide accurate information to parents, and the medical professionals who serve them, from the time of diagnosis through age three, while fostering the opportunity for life long connections. The network provides materials and resources to families and medical professionals.

Lettercase is part of the National Center for Prenatal and Postnatal Resources, and offers resources and support for medical providers and expectant parents first learning about a prenatal or postnatal diagnosis. Lettercase covers multiple conditions in several languages.
Support Groups Down Syndrome Foundation of Florida
Broward Gold Coast Down Syndrome Organization
Down Syndrome Association of Central Florida Down Syndrome Association of Brevard F.R.I.E.N.D.S. Down Syndrome and Special Needs Fun Coast Down Syndrome Association Gold Coast Down Syndrome Organization Manasota BUDS South West Florida PODS Angels Family Support Group, Inc.

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This page will give you more Down Syndrome Resources

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Here you can find out how common down syndrome is, how it is diagnosed, the different types, what causes it and more.

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In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

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How common is Down syndrome?

According to the Centers for Disease Control and Prevention, approximately one in every 772 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 5,100 babies with Down syndrome are born in the United States each year. (De Graaf et al., 2022).

When was Down syndrome discovered?

Are there different types of Down syndrome?

What is the likelihood of having a child with Down syndrome?

Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Down syndrome. A 35-year-old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to 1 in 100 by age 40. At age 45 the incidence becomes approximately 1 in 30. The age of the mother, or birthing parent, does not seem to be linked to the risk of translocation.

Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counseling for parents is becoming increasingly important. Still, many physicians are not fully informed about advising their patients about the incidences of Down syndrome, advancements in diagnosis, and the protocols for care and treatment of babies born with Down syndrome.

What impact does Down syndrome have on society?

Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as schools, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of cognitive delays, from very mild to severe. Most people with Down syndrome have cognitive delays that are mild to moderate.

Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach age 60, and many live even longer (Down syndrome, 2018). More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance.

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In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

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What Is Down Syndrome?

Down syndrome is a condition in which a baby is born with an extra

chromosomenumber 21. The extra chromosome is associated with delays in the child's mental and physical development, as well as an increased risk for health problems.

The physical features and medical problems linked to Down syndrome can vary widely from child to child. While some kids need a lot of medical attention, others lead healthy lives.

Down syndrome, also called trisomy 21, happens by chance, can't be prevented, and isn't caused by anything a parent did or didn't do. Fortunately, the health problems can be managed well, especially when found early, and many resources are available to help kids and their families.

What Causes Down Syndrome?

A baby inherits genetic information from its parents in 46 chromosomes, typically 23 from the mother and 23 from the father. Chromosomes hold our genes, which carry the information that determine how our bodies look and work, including traits from our relatives like hair and eye color.

In most cases of Down syndrome, a child gets an extra chromosome 21 - for a total of 47 chromosomes instead of 46. Rarely, the extra chromosome 21 attaches to another chromosome. This extra genetic material causes the physical features and developmental delays in people with Down syndrome. The features are no different if the extra chromosome is by itself or attached to another one.

How Can Down Syndrome Affect Kids?

Kids with Down syndrome often have similar physical features, such as a flat facial profile, an upward slant to the eyes, small ears, and a tongue that tends to stick out.

Low muscle tone (called hypotonia) is also common in kids with Down syndrome but is less obvious as they get older. Children will reach developmental milestones, like sitting up, crawling, and walking, though typically later than other kids do. Low muscle tone may also contribute to sucking and feeding problems during early childhood, as well as gastroesophageal reflux and constipation.

At birth, babies with Down syndrome are often smaller than other newborns, and they tend to grow at a slower rate and remain shorter than their peers. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and using the toilet.

Down syndrome affects kids' ability to learn in different ways, and most have mild to moderate intellectual disability. Kids can and do learn, and they can develop skills throughout their lives. They just reach goals at a different pace. So it is important to remember that each child with Down syndrome will gain skills in their own time and to not compare them to their typical peers or even kids with the same condition.

Kids with Down syndrome have a wide range of abilities, and there's no way to tell at birth what they can do as they grow up.

What Medical Problems Can Happen With Down Syndrome?

Some kids with Down syndrome have no serious health problems. But others may have medical issues that need extra care. Many go to clinics that specialize in caring for people with Down syndrome. If you don't have a Down syndrome clinic in your area, your primary care doctor can help coordinate care for your child.

Almost half of all children born with Down syndrome will have a congenital heart defect. All newborns with Down syndrome should be checked for this with a specialized ultrasound for the heart ( echocardiogram).

About half of all kids also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include strabismus (eyes do not track together), nearsightedness or farsightedness, and cataracts.

Vison and hearing problems can affect language and learning. Regular checkups by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist can find and manage any problems.

Children may need to see other medical specialists, depending on their needs. Medical problems that happen more often with Down syndrome include:

People with Down syndrome sometimes have an unstable upper spine (neck) and should be checked by a doctor every year or sooner if they have symptoms, such as neck pain, changes to their walking, or unexpected loss of bladder or bowel control. Some children may need neck X-rays before playing some sports or before getting anesthesia.

How Is Down Syndrome Diagnosed?

Two types of prenatal tests can look for Down syndrome in a fetus:

Screening tests estimate the chances that a fetus has Down syndrome.

Diagnostic tests can tell if the fetus does have the condition.

Screening tests are cost-effective and easy to do. But they don't give a definitive answer about whether a baby has Down syndrome. So these tests are used to help parents decide whether to have more diagnostic tests.

Diagnostic tests accurately diagnose Down syndrome and other chromosomal problems. But because this involves getting some of the baby's cells while still inside the uterus, there is a risk of miscarriage and other complications.

If you're unsure about which test, if any, is right for you, your doctor or a genetic counselor can help you sort through the pros and cons of each.

Screening tests include:

nuchal translucency testing: This test is done between weeks 11-14 of pregnancy. It uses ultrasound to measure the clear space in the folds of tissue behind a developing baby's neck. Babies with Down syndrome and other chromosomal problems tend to have fluid buildup there, making the space look larger. To calculate the odds that the baby has Down syndrome, doctors use this measurement, along with the mother's age (the risk for a baby to have Down syndrome increases with the mother's age), and the baby's gestational age.

the triple screen or quadruple screen (also called the multiple marker screen)

integrated screen: This uses results from first-trimester screening tests (with or without nuchal translucency) and blood tests with a second trimester quadruple screen to come up with the most accurate screening results.

an ultrasound

cell-free fetal DNA analysis: This test analyzes fetal DNA found in the mother's blood. It can be done in the first trimester and is more sensitive at finding trisomy 21 than standard the screening tests noted above.

Diagnostic tests include:

If the doctor suspects Down syndrome after a baby is born, a karyotype test (chromosome analysis) can confirm the diagnosis. This is typically done on a blood sample and the chromosomes are grouped by size, number, and appearance to look for differences.

How Can Parents Help?

If your child has Down syndrome, you may at first have feelings of loss, guilt, and fear of the unknown. Talking with other parents of kids with Down syndrome may help you deal with your concerns and find ways to look toward the future. Many parents find that learning as much as they can about the condition helps ease fears.

Children with Down syndrome benefit from getting early intervention services as soon as possible. Physical therapy, occupational therapy, and speech/feeding therapy can help, and early childhood educators can work with your child to encourage and boost development.

States provide early intervention services to kids with disabilities from birth to age 3. Check with a health care provider - a doctor, nurse, developmental pediatrician, or a social worker - to find resources in your area.

When kids with Down syndrome turn 3 years old, they're guaranteed educational services under the Individuals with Disabilities Education Act (IDEA). Under IDEA, local school districts must provide "a free appropriate education in the least restrictive environment" and an individualized education program (IEP) for each child.

Where to send your child to school can be a hard decision. The needs of some kids with Down syndrome are best met in a specialized program. But many kids with Down syndrome go to a typical school and enjoy the same activities as other kids their age. Being in a regular classroom (known as inclusion), when appropriate, is good for both the child with Down syndrome and the other kids.

A few kids with Down syndrome go on to college. Many transition to semi-independent living. Others continue to live at home but hold jobs and find their own success in the community.

Your school district's child study team can work with you to find what's best for your child. All decisions about your child's education should involve your input, as you are your child's best advocate.

You also can find more information and support online at:

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single deep crease across the center of the palm

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Down Syndrome (for Parents) - Nemours KidsHealth

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In Down syndrome, an extra chromosome causes delays in the way a child develops, mentally and physically. But many resources are available to help kids who have it and their families.

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Eunice Kennedy Shriver National Institute of Child Health and Human Development - NICHD

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Children's Home Society of Florida | We Do Good

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Early Steps | Children’s Home Society of Florida

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Leslie Duffen, the father of three-year-old Sarah, discovered his daughter could learn to read at three years old.

But children learn to read all the time, yes?
Not always.
Especially not some children born with Down syndrome.

Yet at only three, Sarah was beginning to imitate and use single words from flashcards held up by her father.

Through this exercise, Leslie confirmed that Sarah mastered written words faster than she did the words spoken to her.

Using this language learning hack, Sarah could comfortably attend a local comprehensive school where her language skills placed her ahead of most.

In fact, by the time she was 12, she had received all but one year of her education in mainstream schools.

This shows you that children with Down syndrome can benefit from a rich learning experience when given the opportunity.

This kind of learning accommodation requires a tailored curriculum that factors in children with Down syndrome.

And this is where Positive Action's curriculum comes into play.

"I am very grateful for these lessons. They fulfill a need that so many children are lacking in the educational process today."- Linda Davis, 2nd Grade Teacher, Davis Elementary

How Do You Explain Down Syndrome to a Child?

To support your child, start by understanding what Down syndrome is for yourself.

A child with Down syndrome has an extra chromosome - chromosomes are small "bundles" of genes that determine how a baby's body forms during pregnancy and how their body functions after birth.

Typically, a baby is born with 46 chromosomes, but children with Down syndrome have an extra copy of one of these chromosomes, chromosome 21.

The medical term for this phenomenon is 'trisomy'; thus, Down syndrome is also referred to as trisomy 21.

This extra copy affects the baby's physical and mental development. Although children with Down syndrome might share some similarities in appearance and behavior, each child has different abilities.

Some common physical features in individuals with Down syndrome include:

A flattened face, especially the bridge of the nose

Almond-shaped eyes that slant up

A short neck

A single line across the palm (palmar crease)

A tongue that tends to stick out of the mouth

Tiny white spots on the iris (colored part) of the eye

Small hands and feet

Small pinky fingers that sometimes curve toward the thumb

Poor muscle tone or loose joints

Shorter height as both children and adults

They may also experience challenges with motor skills, speech, and language.

How Do You Interact With a Child With Down Syndrome?

Overcoming existing negative stereotypes about children with Down syndrome calls for people-first language.

Here's how it works:

In your language (both written and oral), put the person before the disability.

Use "My student with Down syndrome" instead of "my Downs kid" or "he's Downs."

Say "My student receives special education" instead of "He's a special ed student."

Encourage all other students to think of students with Down syndrome as people first.

Acknowledge how words can create barriers.

Avoid terms with overt negative connotations like "retarded" or "handicapped;" use "developmentally delayed" instead.

If you're unsure about how to refer to a child with Down syndrome, ask their parent.

Use emotionally neutral expressions.

When referring to your students, say, "My student has Down syndrome instead of "My student suffers from Down syndrome."

1. Steer clear of stereotypes like "They're so loving/happy all the time." Children with Down syndrome experience a wide range of emotions and are not all alike.

2. Use examples of what the student needs instead of labeling them as having "problems." For example, "Billy needs..." rather than "Billy has problems or special needs."

3. Don't use the terms "mild" or "severe" because one is either a child with Down syndrome or not. Yes, there are varying degrees of abilities, but using "mild" or "severe" can insult parents or other families who overhear.

We know that adopting these habits takes some adjusting. So here's a video showing how students with Down syndrome interact with their friends for some inspiration.

How Do You Accommodate Students With Down Syndrome?

1. First, always speak directly to the student, using clear, receptive language and short sentences.

2. Place a strong emphasis on visual learning when teaching reading to students with Down syndrome. Think visual demonstrations, pictures, and illustrations.

Include additional images in handouts when you can.

Put up colorful charts around the room.

Play videos with closed captions to reinforce content.

Break up blocks of texts with lists and tables and use bolding and underlining to highlight important points.

When tackling material with advanced vocabulary, draw small images against difficult words in the margins.

1. Repetition is the name of the game when it comes to phonics training. Yes, adults may find this monotonous, but children greatly benefit from overlearning material. Simply use automated options like flashcards and computer programs to mitigate the boredom.

2. Learn sight words and vocabulary from the student's environment. When students with Down syndrome know 50-70% of the words on a page, it frees them up to focus on the more challenging terms they come across.

3. Students with Down syndrome generally have good social skills. So encourage them to organize tasks with other students who can act as appropriate role models.

4. Give the student enough time to process language and respond. It may take longer for some students with Down syndrome to comprehend information and then commit it to memory.

Offer additional help by asking them to repeat back what they've learned at the end of a lesson or in peer work.

Group activities where students collaborate to fill out charts and information organizers are also helpful.

No victory is too small. Set attainable goals and adjust difficulty levels according to each individual's capabilities.

Learning just one letter or a new sound over a week is a sure win for a child with Down syndrome so reward each accomplishment with badges and lots of praise.

Design special assignments that cater to the student's strengths so that you can create opportunities for guaranteed success.

Believe in your student's abilities. Most students with Down syndrome have to put in more work than their peers to achieve the same results, so plenty of praise and reassurance keep them on track.

Teaching students with Down syndrome calls for a lot of self-compassion. Teachers already experience moments of stress, anxiety, and pressure managing students without Down syndrome.

So the key here is to pause when you need to and remember that you, too, just like the student with Down syndrome, are giving your best.

Rise to the Challenge: Help Children With Down Syndrome

At Positive Action, we recognize each person's unique value: parent, teacher, and student alike.

We help students who receive special education integrate into mainstream classrooms by equipping them with social skills and intrinsic motivation.

Additionally, our special education curriculums will provide your school's leadership with specific tools such as:

Committee Handbook

Surveys

Calendars

Templates for meeting logs and agendas

Behavior management forms

"Dear Parents" letters

"Positive Action is a good curriculum, and we tied it in with our PBIS. It really helped in making this a safe school where academics and behavior work together so that everybody can learn."- From a Principal in Robeson County, North Carolina

Schedule a Webinar Today

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How to Teach Students With Down Syndrome? 14 Strategies

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Leslie Duffen, the father of three-year-old Sarah, discovered his daughter could learn to read at three years old. But children learn to read all the time, yes? Not always. Especially not some children born with Down syndrome. Yet at only three, Sarah was beginning to imitate and use single words from flashcards held up by her father.

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–Leeza Woodbury, with Navigator Kelly since 2020

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How to Get a Child with Down Syndrome the School Supports They Need

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Empower yourself and your child’s educational team with information about the Down syndrome learning profile and the supports available at school.

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The annual course reset of the Disability Standards of Education e-learning and NCCD for school leader e-learn modules will be scheduled on the 12th December 2022. If you intend to complete the course you must do so before 12th December, as your progress cannot be carried over to the next year.

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In this episode, we talk about common adjustments teachers make in the classroom to support students with Down syndrome. A genetic chromosome disorder, Down syndrome results in some level of intellectual disability ranging from mild to severe. Students with the condition will have developmental delays and a variety of learning challenges.

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Research

Our research focuses on developmental research designed to improve speech, language and communication skills, raise levels of achievement in literacy and numeracy, and support effective inclusion.

Information and resources

Our publications include ebooks, books, films, specialist teaching materials and apps, and web sites offering detailed information and practical guidance for parents and professionals.

Advice, support and training

Our online courses, and consulting and training services offer expert advice, guidance and support to parents, therapists, teachers and assistants worldwide.

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Down Syndrome Education International works to improve early intervention and education for children with Down syndrome around the world.

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Inclusive education for individuals with Down syndrome

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Inclusion in education - the benefits and keys to success

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Modifications for students with Down syndrome

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Learn about helpful modifications for students with Down syndrome who attend mainstream schools and educational institutions.

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New Parent Packets

If you live in the metropolitan Chicago area and are expecting or recently gave birth to a child with Down syndrome, we will provide you with a packet of information about Down syndrome free of charge. The packet includes a book about Down syndrome and other helpful resources. If you are interested in receiving a new parent packet, please contact NADS.

Parent Mentors

Our Parent Support Program provides trained parent mentors to assist and guide parents of children with Down syndrome who live in the metropolitan Chicago area. Our volunteers are all parents of children with Down syndrome. They provide new parents with:

Emotional support and understanding

Up-to-date information on Down syndrome

Information on local services, such as Early Intervention programs

Hope for what the future can hold

Introduction to community parent groups and other resources

Parent mentors are also available for parents of older children and can provide support and information to help parents cope with the challenges which sometimes arise in raising a child with Down syndrome. Perhaps parents are encountering problems with a school district or dealing with medical challenges or just wanting to learn more about the resources in their area. Our volunteers can help.

If you would like to talk to a parent who has "been there," please contact NADS and ask to speak to a Family Support Coordinator.

"No one can understand the range and depth of feelings that accompany the birth of a baby with Down syndrome as well as another parent who has been there. And no one can offer more trustworthy evidence of hope, healing and survival as a parent who has accomplished those things can."

-Lou Weiss, Ph.D., Psychologist and NADS Parent Support Volunteer Trainer

Resource and Referral Program

The Family Support Coordinator can assist new parents with referrals on a wide variety of topics, such as child care, doctor referrals, or early intervention. If we don't have the information in the office, we can assist you in researching appropriate services.

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If you live in the metropolitan Chicago area and are expecting or recently gave birth to a child with Down syndrome, we will provide you with a packet of information about Down syndrome free of charge. The packet includes a book about Down syndrome and other helpful resources.

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We believe that is important to offer a variety of resources for parents to access at each stage of raising a child with Down syndrome. To best meet each parent’s needs, DSDN offers private, moderated online connections.