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This video goes down the technical terms and background information on this intellectual disability.

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What is Down Syndrome (Trisomy 21)? Down syndrome (Trisomy 21) Made Easy

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This website contains information and additional resources for new and expectants parents of children with down syndrome! The overall site also contains basic information, programs, outreaches, laws, and anything else you can imagine that pertains to this particular intellectual disability!

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Información Prenatal - Spanish
What is Down Syndrome? Fast Facts

Down syndrome is a common genetic variation that usually causes delay in physical, intellectual, and language development.

The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.

Down syndrome is one of the leading clinical causes of cognitive delay in the world - it is not related to race, nationality, religion, or socio-economic status.

The incidence of Down syndrome in the United States is estimated to be 1 in every 700 live births.

Of all children born in this country annually, approximately 5,000 will have Down syndrome.

There are approximately a quarter of a million families in the United States affected by Down syndrome.

While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80 percent of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.

There is wide variation in mental abilities, behavior, and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities, and talents.

30-50 percent of the individuals with Down syndrome have heart defects and 8-12 percent have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.

Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care, and positive public attitudes.

In adulthood, many persons with Down syndrome hold jobs, live independently, and enjoy recreational opportunities in their communities.

If I was told my baby might have Down syndrome, what should I expect?

You are here because you have unexpected news - your baby may have Down syndrome. We've prepared this information especially for parents who have either just been told the child they are expecting may have or has Down syndrome or have received a recommendation for a Down syndrome screening or diagnostic test.

Hopefully, this information reassures you that everything will be fine; however, there are some things to consider and steps to anticipate before your baby is born.

What should I know if a screening test is recommended?

Prenatal screening for Down syndrome: Know your options
First and foremost, if you have been recommended for a prenatal screening test, you have a choice. While screening tests are routine, they are ultimately optional. The following information will help you analyze whether a Down syndrome screening test is the best choice for your family, as well as how to process the results.

The NDSC does not take an official stance for or against prenatal screening. You should, however, have complete and accurate facts about the screening tests and what they might tell you before choosing to proceed.

Why am I being offered a prenatal screening test?

In late 2006, the American College of Obstetricians and Gynecologists (ACOG) recommended the extension of screening tests to all pregnant women, regardless of maternal age. The reason: 80 percent of babies with Down syndrome are born to women under age 35.

This fact may surprise most expectant parents. A woman's chance of giving birth to a child with Down syndrome increases with age because older eggs have a greater risk of improper chromosome division. By age 35, a woman's chance of conceiving a child with Down syndrome is about 1 in 350. By age 40, the chance is about 1 in 100, and by age 45, the chance is about 1 in 30. However, the actual number of babies with Down syndrome born to women aged 18-35 is far higher because pregnancy is more common among women aged 18-35.

What types of tests are available, and what can they tell me?

There are several types of screening tests available to determine the chance of having a baby with Down syndrome. Non-invasive tests including ultrasounds and testing of the mother's blood can determine the probability of a fetus having Down syndrome. However, the only way to confirm a fetal diagnosis of Down syndrome is via invasive procedures wherein a sample of placental tissue or amniotic fluid is taken and cells are grown to produce a karyotype - a profile of the baby's chromosomes. The following info from the Mayo Clinic helps to describe what each test is and the risks it may carry.

Ultrasound
What it is: Ultrasound is used to measure a specific area on the back of your baby's neck. This is known as a nuchal translucency screening test. When abnormalities are present, more fluid than usual tends to collect in this neck tissue.

Blood Tests
What it is: This test measures the levels of pregnancy-associated plasma protein-A (PAPP-A) and the pregnancy hormone known as human chorionic gonadotropin (HCG).

Amniocentesis
What it is: A sample of the amniotic fluid surrounding the fetus is withdrawn through a needle inserted into the mother's uterus. This sample is then used to analyze the chromosomes of the fetus. Doctors usually perform this test in the second trimester, after 15 weeks of pregnancy.

Risks: This test carries a slight risk of miscarriage, which increases if it's done before 15 weeks.

Chorionic Villus Sampling (CVS)

What it is: In CVS, cells are taken from the placenta and used to analyze the fetal chromosomes. It is typically performed in the first trimester after 10 weeks of pregnancy.

Risks: This test appears to carry a somewhat higher risk of miscarriage than second trimester amniocentesis.

Cordocentesis
What it is: In this test, also known as percutaneous umbilical blood sampling or PUBS, fetal blood is taken from a vein in the umbilical cord and examined for chromosomal defects. Doctors can perform this test between 18 and 22 weeks of pregnancy.

Risks: This test carries a significantly greater risk of miscarriage than amniocentesis or CVS, so it's only offered when results of other tests are unclear and the desired information can't be obtained any other way.

Why or why not consider a screening test?
One reason for the placement of prenatal screening in the first and second trimesters of a pregnancy is to permit termination if Down syndrome is diagnosed. If you would not consider terminating your pregnancy, there is no reason for a screening test. If that is your decision, you may want to discuss other prenatal tests with your doctor to rule out the chance of cardiovascular and gastrointestinal issues.

Should you receive a diagnosis, your healthcare professional may recommend additional tests to allow you to make informed decisions regarding your delivery and immediate postnatal care for your child. Second-trimester screening or high-quality ultrasounds can be helpful in planning your delivery and newborn care.

We must be clear. A high percentage of children with Down syndrome are born with cardiovascular and gastrointestinal issues. Many may be detected by prenatal ultrasound.

What are my doctor's motivations?
Obstetricians pay the highest malpractice insurance rates of any medical specialty. Some have been sued when they did not offer prenatal screening tests. Where plaintiffs have won, the financial awards have been significant.

We do not suggest that your provider is motivated by anything other than your health and well-being. You can, however, alleviate such concerns by offering to sign a statement that a screening test was offered and you declined.

If you decline, your decision should be respected. You should not be unduly challenged regarding your decision. If you believe you have been subjected to such treatment, you may consider contacting the physician or health professional in question and notifying the office of risk management at the hospital to file a written complaint. This will help put an end to such practices in the future.

Will having a baby with Down syndrome change my pregnancy?

There is nothing in the news that changes anything about your pregnancy. Assuming you are healthy, we encourage you to enjoy the coming months.

There are exceptions: Many babies with Down syndrome have cardiovascular and gastrointestinal issues. Some can be detected prenatally, and you should consult with your medical professionals about how they may affect your delivery and your child's postnatal care.

However, don't feel pressured into decisions or overloaded on information during your pregnancy.

Go slowly. Gather facts and discuss everything with your spouse or partner, friends, and family. Then, when you are ready, you will be able make an informed choice.

Right now, you cannot know what is relevant to your situation - most isn't. This is about individuality - all that can be said about Down syndrome are generalities that may not apply to your child or your pregnancy. Please don't worry now about the future - about where your child might be at 6, 16, or 46. We will provide lifetime support every step of the way.

What can I expect after my baby is born?

As a first and very important step, please connect with the local Down syndrome organization closest to you. Most local organizations can connect you with parents of children with Down syndrome. They are ready to listen, talk and offer valuable information on the challenges and rewards of parenting a child with Down syndrome.

Please download the following resources for more information:
Down syndrome: An Expectant Parent's Guide
Light at the End of the Tunnel
Some claim a child with Down syndrome is burdensome. We disagree. Raising a child with Down syndrome has it challenges, but being a parent is challenging, regardless of your child's abilities.

All anybody knows about your baby is that he or she will be a baby - an exciting package of potential waiting to become whatever he or she can be.

As your child grows, he or she will frustrate you and try your patience, but will also reward you in ways you cannot imagine.

How can I best care for, support and love my new baby?

As soon as your child is born, you will begin to ask questions and create to-do lists in your mind. However, your primary job is to love and care for the baby you are holding in your arms.

There is a long list of considerations when you give birth to a child with Down syndrome, medically, socially, developmentally, educationally, and more.

Starting here is a great first step. Additionally, the Down syndrome organization closest to you will provide great support - connecting you to parents of children with Down syndrome, experts in the field, and other resources.

The NDSC is here to help educate and empower you to take excellent care of your child.

The best way to prepare for raising a child with Down syndrome is to anticipate challenges and prepare the best you can. Expect frustration, but also expect rewards, just like any parent.

Additional information and downloadable resources for new parents are below:

Down Syndrome: A New Parent's Guide
What Parents Wish They'd Known
Your Baby and Down Syndrome
Breastfeeding a Baby with Down Syndrome
Healthcare Guidelines

Baby is a baby first

There is nothing quite like a baby.
There's a lurch in the heart when we touch the beginning of a life in the small person that is an infant. For some parents, the lurch is made more poignant, even painful, by the fact of their baby's diagnosis of Down syndrome.

Recently, I've had the great pleasure of holding a number of soft, beautiful babies who have Down syndrome. Their parents want to find out what it all means, what they can do and what to think about the future. The first professionals to talk to the parents of babies with Down syndrome tend to discuss the differences parents may see, difficulties babies will encounter. Armed with information about what milestones their child may not reach, what problems she may have, what services they should obtain to avoid potential problems. New parents want to help their babies as soon as possible, so they come to me (and to numerous others) to get this help...to find therapy, activities, and solutions to problems that may or may not exist.

At such an early age, we just don't know exactly which ways Down syndrome may affect a child. She may be really good at cognitive activities, but have significant delays in movement... thereby falling behind her peers in playground and paper-and-pencil activities. He may be fairly good at gross motor, excelling in sports. Ocular control may be an area of need, or it may be perfect. Language may be good, or it may need lots of work. However, one thing we know for certain... babies don't deal with these things no matter what their chromosomes look like. They lie down and expect to be carried, cuddled, talked to, fed and generally catered to. They learn, they are lovable, cute, and the center of the universe. They begin to know who their family members are, and who is the soft touch in the house in the middle of the night.

If these adorable creatures have Down syndrome they are at risk for certain physical and cognitive delays. It behooves parents to keep an eye open for problems that could arise. It's important that they know something about their child's diagnosis so they can be alert and helpful. But my belief is that the most important things parents of babies with Down syndrome can do are exactly those things that all parents do. You know: they cuddle, feed, sing and love. Not the kind of things you need a developmental therapist for... or any other therapist, for that matter.

I want to be clear. Young children with Down syndrome often show delays that need to be remedied so that these kids can be happy with themselves and do their very best. Very young babies with Down syndrome have specific concerns about early development. And doubtless, parents will find themselves driving this child about for ear infections, speech therapy, developmental evaluations, etc. But the main advice I have for parents of new babies with Down syndrome boils down to this:
You have a beautiful new baby. There will be some areas that need work, but what you have right now IS PRECIOUS AND PERFECTLY RIGHT.
Kate Sefton, Master Developmental Therapist

Using people-first language

The correct name of this diagnosis is Down syndrome.
There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost.
The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Words can create barriers.
Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology.
A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents.
Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."
Here are some basic guidelines for using people-first language:

Put people first, not their disability

A "person with a disability," not a "disabled person"

A "child with autism," not an "autistic child"

Use emotionally neutral expressions

A person "with" cerebral palsy, not "afflicted with" cerebral palsy

An individual who had a stroke, not a stroke "victim"

A person "has" Down syndrome, not "suffers from" Down syndrome

Emphasize abilities, not limitations

A person "uses a wheelchair," not "wheelchair-bound"

A child "receives special education services," not "in special ed"

Adopt preferred language

A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"

"Typically developing" or "typical" is preferred over "normal"

"Accessible" parking space or hotel room is preferred over "handicapped"

Things to do when your baby has Down syndrome

Enjoy your baby.
Play with her, read to her, rock her, cuddle with her, talk to her, gaze at her when she's sleeping, figure out what she likes - and do it often!

Connect with other parents of children with Down syndrome.
Look for a Parent Group in your area. Call the NDSC at 800-232-6372 to find the organization nearest to you.

Learn more about Down syndrome.
You've probably got lots of questions about your child's diagnosis and what it means for the future. Much information is available on the Internet; some in local bookstores and libraries. Check out the copyright dates, though. Anything published before 1990 is probably out-of-date and may not be very helpful. Woodbine House Publishing is a wonderful resource on Down syndrome, including books on developing gross motor skills, developing fine motor skills, developing communication skills, teaching reading and math, and medical and surgical concerns. There are also helpful DVDs and books for children.

Find out about early intervention programs in your area.
Every state has an Early Intervention Program for babies, from birth until the third birthday. A good source for locating your state's program is the Early Childhood Technical Assistance Center.

Take care of yourself.
While it's probably the last thing on your "to-do" list right now, you can better care for your child if you care for yourself, too. Spend time nurturing the relationships with your partner, other family members and friends. Accept help when it's offered.

Connect with a health care provider familiar with Down syndrome and its unique medical issues.
You may want to supplement care provided by your current doctor or nurse practitioner, or you may be looking for a new provider. Some cities are lucky enough to have a Down syndrome clinic that specializes in the care of babies with Down syndrome. In other cities, you may want to look for a developmental pediatrician. Many HMOs and large clinic systems have a developmental pediatrician on staff. Providers who see lots of children with Down syndrome can be a wealth of information for you and your primary physician.

Investigate county resources.
Search for a department name such as Human Services, Community Services or Developmental Disabilities in your county. Your county also may have a website where you can find out how to connect with a case manager. A case manager should be able to help you find services that may benefit your child and your family. A case manager can help you connect with a school district, find available community services, and tell you about financial resources you may qualify to receive. Families often use these services when their children are older. It's helpful to have connections in place to use when you need them.

Don't be afraid to grieve.
Grieving is normal and people express it differently - sadness, tears, anger, fear, depression or withdrawal. It's okay to cry. The baby you have may not be the baby of your dreams. Many parents of children with Down syndrome feel this way. Most also learn that - eventually - they dream new dreams.

Remember to enjoy your baby.
Marvel at his fingers and toes, stroke the hair (or fuzz!) on his head, read Goodnight Moon again and again, watch him watching you, sing to him and give him one or two - or more! - hugs and kisses.

Adapted from the Down Syndrome Association of Minnesota

The experience of having a child with Down syndrome

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome To Holland."

"Holland?!?" you say. "What do you mean, Holland??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.
Reprinted with permission of the author.

The future

As an adult, your child can get a job, be an enthusiastic and productive employee, drive cars, live in a variety of residential settings, fall in love, and enjoy a rich and satisfying life.

Coming to terms with what your children can and cannot do is a bittersweet part of parenting. You may have dreamed your son would be a doctor, only to learn that he wishes to be a painter. Or that your daughter would be an opera diva, only to find she is tone deaf.

You may feel all that has been shattered by the diagnosis, but we cannot predict your child's future. We can only tell what our kids have achieved.

They are avid learners, Eagle Scouts, class leaders, homecoming royalty, long distance swimmers, published authors, poets, painters, and musicians. They have become what they are because they had the potential and we believed in them, loved and support them.

We do not want to paint an overly rosy picture. Down syndrome affects each individual differently and does so across a very broad span. Where an increasing number of our sons and daughters grow to be healthy, successful and independent, some individuals with Down syndrome have significant health issues, struggle in school, and are quite dependent on others as adults.

We know you may find it difficult, but we suggest focusing on the positive - the odds are good your dreams will come true.

INFORMATION FOR NEW AND EXPECTANT PARENTS

Online Communities
TheDown Syndrome Diagnosis Network ( DSDN) supports families with current information and real-life accounts of life with Down syndrome during the prenatal to early childhood phases. DSDN is committed to facilitating unbiased, family-centered discussion of Down syndrome within the medical community. We strive to cultivate a culture of acceptance and inclusion for people with Down syndrome at all stages of life.

Unexpected ~ Stories of a Down syndrome diagnosis Prenatal and birth diagnosis stories from families around the world.
Videos/DVDs

Dakota's Pride: One Father's Search for the Truth About Down Syndrome.
2008. Interviews with parents and professionals as a father sets out to find out what it means to be the parent of a new baby with Down syndrome.

Discovery: Pathways to Better Speech for Children with Down Syndrome.
2005. An overview of language development in children with Down syndrome, age two and up. Run time 81 minutes. Directed by Will Schermerhorn, Blueberry Shoes Productions, LLC. 703-338-1776. www.blueberryshoes.com

Down Syndrome, The First 18 Months.
2003. Featuring interviews with international experts on Down syndrome. Run time 108 minutes. Directed by Will Schermerhorn, Blueberry Shoes Productions, LLC. 703-338-1776. www.blueberryshoes.com

Journey of a Lifetime.... Beginning with the End in Mind.
1998. Hosted by Karen Gaffney, this video emphasizes the importance of early intervention. Includes discussions with professionals and family members. Run time 1 hour. The Karen Gaffney Foundation, 815 N.W. 13th Avenue, Portland, OR 97209. 503-973-5130. www.karengaffneyfoundation.com

Kids with Down Syndrome: Staying Healthy and Making Friends.
2008. A blend of experts- from parents to professionals - address potty training, nutrition, sleep issues, and lots more. This is packed with lots of information that will be helpful to parents of newborns through school - age children. Run time 120 minutes. Directed by Will Schermerhorn, Blueberry Shoes Productions, LLC. 703-338-1776. www.blueberryshoes.com

What Did You Say? A Guide to Speech Intelligibility in Down Syndrome.
2006. Libby Kumin looks at the importance of speech intelligibility and what makes clear speech challenging for people with Down syndrome. Run time 59 minutes. Directed by Will Schermerhorn, Blueberry Shoes Productions, LLC.703-338-1776. www.blueberryshoes.com

Organizations
American Occupational Therapy Association
4720 Montgomery Lane
Bethesda, MD 20824
800-377-8555
www.aota.org

National Information Center for Children and Youth with Disabilities
(NICHCY)
P.O. Box 1492
Washington, D.C. 20013-1492
800-695-0285
www.nichcy.org

Books
Fine Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.
Bruni, Maryanne.
Bethesda, MD: Woodbine House.1998.

INFORMATION FOR PARENTS OF OLDER CHILDREN AND ADOLESCENTS

INFORMATION FOR PARENTS OF ADULTS

PARENTING SUPPORT AND INSPIRATION

HEALTH

EDUCATION

BOOKS FOR CHILDREN

BOOKS FOR ADOLESCENTS/ADULTS

Managing my Money: Banking and Budgeting Basics.
Hale, Natalie.
Bethesda, MD: Woodbine House. 2010. This workbook is designed to be used by a teacher and a student working together. The lessons are broken down in to precise steps with clear and simple language and can be repeated until the student is ready to move onto the next lesson.
Count Us In: Growing Up with Down Syndrome.
Kingsley, Jason and Mitchell Levitz.
New York: Harcourt Brace. 2007. A unique and powerful conversational-style account of their lives, by two young men with Down syndrome.
212-592-1000; www.harcourtbooks.com

BOOKS FOR SIBLINGS

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The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

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Boston's Children's Hospital offers resources and information regarding down syndrome symptoms, causes, diagnosis', treatments, programs, and even services!

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Down Syndrome | Boston Children’s Hospital

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Down syndrome is a genetic condition characterized by developmental delays and learning disability. Learn more from Boston Children’s Hospital.

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This video, ‘Chromosomes R Us’, is a short film by actors who have  Down’s syndrome video explaining how Trisomy 21 occurs.

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CHROMOSOMES R US - a celebration for World Down Syndrome Day

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"Every person with Down syndrome is an individual. Just like everyone else they will have different things they are good at and other things that they find harder. "

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How Do You Accommodate Students With Down Syndrome?

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How Do You Accommodate Students With Down Syndrome?

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Accommodations begin at strategy number seven!

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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

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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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Modifications for Students with Down syndrome

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Modifications for Students with Down syndrome

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These modifications include classroom methods and resources that an educator can use to guarantee successful developmental growth for each child!

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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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Supporting Down Syndrome Students in the Classroom

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Supporting Down Syndrome Students in the Classroom

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This pdf goes over the ways to accommodate down syndrome students in the classroom. It also assists the educators in guaranteeing their successful developmental growth!

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"Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby. "

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Centers for Disease Control and Prevention

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Down syndrome is a condition in which a person has an extra chromosome

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The National Down-Syndrome Society is one of the best resources for information on this intellectual disability! They inform of the history, accommodations, and specifics of down-syndrome.

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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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The symptoms of down syndrome can be seen in the facial composition of each child. However, it still needs to be acknowledged how different and unique each down syndrome child is! This website offers basic knowledge on the symptoms and causes of down syndrome.

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What are the symptoms of Down syndrome?

Down syndrome causes physical, cognitive and behavioral symptoms. Not all people with Down syndrome have all of these symptoms. Symptoms and their severity are different from person to person.

Physical signs of Down syndrome

Physical signs of Down syndrome are usually present at birth and become more apparent as your baby grows. They can include:

A flat nose bridge.

Slanted eyes that point upward.

A short neck.

Small ears, hands and feet.

Weak muscle tone at birth.

Small pinky finger that points inward towards the thumb.

One crease in the palm of their hand (palmar crease).

Shorter-than-average height.

As your child grows, additional symptoms can arise because of the way that their body developed in the uterus, including:

Ear infections or hearing loss.

Vision problems or eye diseases.

Dental problems.

Being more prone to infections or illnesses.

Obstructive sleep apnea.

Congenital heart disease.

Your child's healthcare provider will regularly check for these and other conditions that may cause additional symptoms throughout your child's life.

Cognitive symptoms of Down syndrome

Your child with Down syndrome may have cognitive development challenges as a result of their extra chromosome. This can cause intellectual or developmental disabilities. Your child's ability to meet developmental milestones, or things that your child can do at a certain age, may differ from other children, including how they:

Walk and move (gross and fine motor skills).

Speak (language development skills).

Learn (cognitive skills).

Play (social and emotional skills).

As a result, it may take your child longer to do the following things:

Toilet training.

Speaking their first words.

Taking their first steps.

Eating food independently.

Behavioral symptoms of Down syndrome

Your child diagnosed with Down syndrome may exhibit behavioral symptoms. This can be the result of your child not being able to communicate their needs to you or their caregivers effectively. Behavioral symptoms of Down syndrome could include:

Stubbornness and tantrums.

Difficulty paying attention.

Obsessive or compulsive behaviors.

What causes Down syndrome?

An extra chromosome causes Down syndrome. Each human cell typically contains 23 pairs of chromosomes, which totals 46. Down syndrome occurs because of changes in the way cells in chromosome 21 divide. Every person with Down syndrome has an extra chromosome 21 in some or all of their cells.

There are three types of Down syndrome with different causes, including:

What is trisomy 21?

Trisomy 21 is the most common type of Down syndrome. The term " trisomy " means having an extra copy of a chromosome. Trisomy 21 occurs when a developing fetus has three copies of chromosome 21 in every cell instead of the typical two copies. This type makes up 95% of all cases of Down syndrome.

What is translocation Down syndrome?

Translocation is a type of Down syndrome where there's a partial or full amount of chromosome 21 attached to another chromosome. Unlike trisomy 21, translocation occurs when chromosome 21 isn't separate, but it relocates to another numbered chromosome. This type of Down syndrome accounts for less than 4% of all cases.

What is mosaic Down syndrome?

Mosaic Down syndrome is the rarest type of Down syndrome and accounts for less than 1% of all cases. Mosaicism occurs when only some cells contain the usual 46 chromosomes and some cells contain 47. The extra chromosome in some cells is chromosome 21.

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Down syndrome is a genetic condition where a person has an extra copy of chromosome 21 for a total of 47 chromosomes instead of 46.

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Inclusive Education for Students With Down-Syndrome

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Inclusive Education for Students With Down-Syndrome

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This pdf goes over the background of down syndrome, and the proper accommodations we can use in the educational setting.

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Supporting a Child with Down Syndrome at School

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Supporting a Child with Down Syndrome at School

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This website offers strategies for classroom accommodations. It uses and offers video representation, additional resources, and even visual graph supports!

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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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This video includes multiple families that explain their journey with down syndrome. Each family has a child who was born with this intellectual disability, and they go down their paths of life with their new "gifts!"

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Hear From Families of Children with Down Syndrome

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This website gives a thorough understanding of down syndrome. It also provides parents with ways they can help and educate themselves on their child's intellectual disability!

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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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Down Syndrome Accommodations and Modifications

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Down Syndrome Accommodations and Modifications

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This presentation gives wonderful information on students with down syndrome. For more targeted accommodation and modification strategies, skip to slides 8 and 9!

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Down Syndrome Accommodations and Modifications

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Scenario: Cody was a 3 year 10 month old boy with Down syndrome who attended a preschool programme where he received a combination of intensive instruction and participation in an integrated preschool class in which half of the children had mild disabilities and half were