What is Down Syndrome?
Down Syndrome is caused by having an extra chromosome. Chromosomes are part of the nucleus of the cell, containing the information that makes up a person. Individuals with Down Syndrome have 47 chromosomes instead of the usual 46. A typical child has two copies of chromosome 21. Children with Down Syndrome have three copies of this chromosome, causing changes in the development of the body and the brain. For more detailed information, please see the “Do many children have Down Syndrome?” section.
What are some common signs of Down Syndrome?
Here are some things you may see in your child with Down Syndrome.
- Slanted eyes with folds of skin at the inner corners.
- Short, broad hands with a single crease along the palm.
- Flat bridge of the nose.
- Short, low-set ears.
- Short neck.
- Small head.
- Tongue sticks out.
- Broad feet with short toes.
- Low muscle tone, causing muscles to feel floppy.
- Levels of mental retardation vary by child.
What can I do to help my child?
You have made an important first step by reading more information on Down Syndrome. You also can talk with other parents of children with Down Syndrome. They have gone through what you are going through now and perhaps can help. You also can get help from parent support and advocacy groups by calling 2-1-1 and asking for Help Me GrowResearch tells us that the earlier we begin to help, the better the results for the child and family.
Below are checklists of things you to help your child. Remember that you are not alone.
Checklists of things I can do to help my child with Down Syndrome:
IN THE STATE OF FLORIDA:
Get my child evaluated (tested).
If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services. You can contact one of the centers closest to your home.
For more information or to make a referral to Early Steps, please call (800) 218-0001
or visit the contact list : http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf
If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he or she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS) program. They also provide testing for special education programs.
Florida’s FDLRS Child Find
Florida Department of Education
Contact Children’s Medical Services (CMS):
CMS provides local offices and sometimes will refer children to medical centers that work with CMS. Different services are provided to help care for children with disabilities, special needs or major medical conditions. These services range from early intervention program such as Early Steps, to ones for a specific medical condition.
Children’s Medical Services
Main Phone: (850) 245-4200
Have my child tested for problems related to Down Syndrome:
A number of medical issues are more common in children with Down Syndrome. Watch and test for these problems in your child:
- Heart defects (test via an echocardiogram at birth).
- Respiratory infections.
- Thyroid problems.
- Sleep apnea (stopping breathing regularly during sleep).
- Sore spots on feet.
*It is very important that an echocardiogram be performed on all newborns with Down Syndrome in order to find any serious heart problems. An echocardiogram, a test using ultrasound to examine the heart, is painless and doesn’t require surgery.
Work with my child’s service providers:
This can be your pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child’s life. Some tips for speaking with service providers:
- Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular (like a speech evaluation or assistive technology), keep asking until you get it or until you understand why it is not needed.
- Work with professionals in early intervention or in your school to write your child’s IFSP or IEP to reflect your child’s needs and abilities. Be sure it includes such services as speech-language pathology, physical therapy, and occupational therapy if your child needs these. Don’t forget about assistive technology either.
Get more information: Visit more websites. Read a book. Watch a video on Down Syndrome. Include your child and family. Talk with another parent. Help Me Grow can help you meet other parents and get services.
Help my child’s physical movements and development:
Take part in family fun, recreation activities, play and all parts of your daily life. Having Down Syndrome doesn’t mean your child should miss out. Encourage your child to learn and develop better movement and control of muscles. For a list of summer and outdoor activities, see below:
Dial 211 for a list of recreation areas and programs
Urge your child to move around: Do whatever gets your child moving. For example, put a favorite toy just out of reach, or try “dancing” with your child, playing, rolling on the floor or swinging. Encourage your child to have fun.
Think of fun and normal ways to encourage your child’s use of small muscles (like those found in the fingers and face). For example:
- Let your child use fingers to eat.
- Encourage your child to finger-paint, draw, make things with Playdough.
- Practice making faces or play games using hands and/or the face.
Assistive technology may help your child: Ask professionals who evaluate your child what assistive technology can do to help. Some examples of assistive technology:
- Computer with a touch screen to communicate.
- A spoon with a special handle so your child can feed himself/herself (as at right).
- A special device holds your child’s clothes to help him or her get dressed.
Learn more about what you can do for your child: Ask lots of questions about how and what you can do to let your child live up to full potential while living your own life. Doing everyday things such as eating, bath time, shopping, traveling in the car and family outings furnish the best moments to make a difference in your child’s abilities.
Help my child’s speech and language skills:
- Talk with your child: Just talking with your child encourages speech and language skills. For example while shopping in the grocery store, you could name each item as you put it in the grocery cart. Talk about its color and shape. Your child learns how to talk from listening to you.
- If your child tries to speak with to you, give plenty of time to answer. Your child may have lots to say, but it could take longer to get it out.
- Play with your child: Spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but it does help. Music tapes with which a child can sing along also are very effective.
- Read with your child: Pointing to the objects in the pictures to help develop language.
- Ask your child’s speech and language therapist what you can do at home: Have your child’s speech and language skills evaluated (tested). Don’t worry if your child is too young to talk. Speech and language therapists see very young children, even infants. It’s never too early to get a communication (language) assessment, especially for a baby or toddler who may have an oral motor difficulty. (Meaning problems talking, biting, chewing or swallowing because of a lack of control over the tongue, lips, and cheeks).
How can I deal with all this?
First of all you need to take care of yourself.
Having a child with a disability is hard work. There are times of joy and celebration as well as times of heartbreak. It is easy to get overwhelmed.
You can make a difference in your child’s life by working with your child and therapists, doctors and teachers, but you need to be kind to yourself, too. That’s not selfish, but rather necessary. You can’t help your child if you are overworked and overstressed.
Figure out how to take care of your own needs. The next time friends or family say, “What can I do to help?” let them babysit or lend a hand so you can have some time to yourself. Below are some things to do to “recharge your batteries”:
- Do something that makes you feel happy: It could be going out with a loved one or friends, taking long baths, or a creative project.
- Exercise is vital for your mind, body and spirit: Take long walks, lift weights, go bike riding or do an aerobic class — whatever is fun for you.
- Talk with other parents of children with disabilities: (a parent support group), a great place to start, can help with practical tips, cheer you up, and be a source of strength.
- Stay hopeful: Many parents find the poem, “Welcome to Holland,” a comfort. Click here to read Welcome to Holland.
What are some other ways to describe Down Syndrome?
There are three types of Down Syndrome, and you may hear these terms from your doctor or others. For more information on what causes Down Syndrome, see the “Your Genes, Your Health website at http://www.ygyh.org/ds/whatisit.htm.
- Trisomy 21: When the extra chromosome 21 comes from either the egg cell of the mother or the sperm cell of the father. More than 90% of children with Down Syndrome have an extra chromosome 21 from one of their parents. When this happens, parents rarely have a second child with Down Syndrome.
- Translocation: Caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. Those with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. About 5% of children with Down Syndrome have a translocation. In this case, parents are more likely to have a second child with Down Syndrome.
- Mosaicism: When a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. Mosaicism occurs in 2% to 5% of cases of Down Syndrome. A person with Mosaic Down Syndrome may exhibit all, some or none of the characteristics of Down Syndrome, depending on the percentage of cells carrying the extra chromosome and where these cells are located.
Do many children have Down Syndrome?
Down Syndrome is among the most common genetic conditions (meaning it is passed down from the parents to the child) that cause mental retardation. About 4,000 children with Down Syndrome are born in the United States each year. One baby in about 1,000 is born with Down Syndrome.
The older the mother is at time of birth, the more chances of having a baby with Down Syndrome. Because younger women have more babies than older women, 75-80% of all children born with Down Syndrome are born to women under 35 years. The risk at age 20 is about 1 in every 1,600 births. The risk at age 35 is 1 in every 365. The risk at age 40 is 1 in every 100. If you already have a baby with Down Syndrome, the chances of your next child having Down Syndrome is 1 out of 100 or 1%. It can be even higher depending on the age of the mother and whether the cause of the Down Syndrome is translocation.
What does this mean about intelligence and learning?
Having Down Syndrome does not mean that your child cannot learn the same things as other children. But how much and how fast they learn may be different. Your child may need special supports and more time to learn.
A thorough evaluation (testing) by a qualified psychologist can tell you how much your child’s ability to learn has been affected by having Down Syndrome. An evaluation is painless and relatively brief.
Is there a cure or a treatment for Down Syndrome?
There is no known cure for this syndrome. The diagnosis of Down Syndrome must be confirmed by a chromosome study called akaryotyope. Every individual case is unique. But many interventions (types of therapy, surgeries, or medications) can help your child grow and develop to greatest potential. Some possible interventions are listed below:
- Physical therapy helps children with the motor skills that use the large muscles in the body for such matters as sitting and walking. Therapy is important to improve your child’s muscle strength. Begin therapy as early as possible.
- Your child should be evaluated (tested) by a physical therapist. A physical therapist also can show you exercises that you and your child can do at home. They also may suggest some assistive devices to help your child with any problem areas in movement.
- Occupational therapy helps children with joint and muscle problems learn how to do daily living activities — for example, eating, dressing and bathing.
- An occupational therapist helps your child train the small muscles in the body, and can provide assistive devices such as braces, splints or casts.
- Assistive technology or assistive devices to help someone with a disability or special need. Many devices can help your child do things a regular child can do. Some examples:
- Computer with a touch screen or board with letters to help your child communicate.
- A spoon with large handle to help your child eat.
- A leg brace or walker to help your child walk.
An assistive technology specialist can help you select devices or tools to help your child.
- Speech therapy can help if your child has problems speaking, communicating or swallowing. A licensed speech and language therapist, sometimes called a pathologist, will evaluate your child and help with language issues.
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
- Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.
- Pediatric physical therapist: A professional trained to help children make their muscles stronger and the joints in their arms, legs and chest area more flexible.
- Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions. The therapist also helps figure out what problems with these joints and muscles will mean for a child’s daily living, e.g., getting dressed, eating, and design and suggest assistive devices.
- Pediatric speech-language therapist: A professional who evaluates and treats communication disorders (problems with speech) and swallowing problems
- . A speech-language pathologist is sometimes called a speech therapist or speech pathologist.
- Pediatric audiologist: A professional trained to evaluate hearing loss and related disorders, including balance (vestibular) disorders and tinnitus (ringing in the ears). They also help individuals overcome hearing problems.
- Pediatric psychologist: A professional who tests your child’s ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you how much your child’s ability to learn has been affected by Down Syndrome. An evaluation is painless and relatively brief.
- Pediatric cardiologist: A doctor who treats children with heart disorders.
- Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
- Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.
- Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child’s development, and helping you learn techniques to benefit your child.
- Genetic counselor: A specially trained health professional who helps people as they consider genetic testing, as they adjust to the test results and as they consider screening and preventive measures.
- Geneticist: A doctor or counselor who helps parents learn whether their child has a genetic condition causing mental retardation. A geneticist or genetic counselor also helps families understand whether future babies in their family are likely to have Down Syndrome or mental retardation.
- Child psychiatrist: A doctor who can help when your child is depressed, anxious or angry. Psychiatrists can prescribe medications for children when they have trouble sitting still or controlling their impulses, or who are very aggressive or out of control.
- Assistive technology specialist: A person who works with individuals with disabilities to provide assistive technology solutions to help with problem areas. Assistive technology or assistive devices help a person with a disability with daily living tasks. That includes eating, speaking, getting around, working, playing. An assistive technology specialist is familiar with many options to help your child live life to the fullest. Some services and assistive devices are covered under Medicaid.
- Pediatric neurologist: A doctor who specializes in treating conditions of the nervous system and the brain in children, such as seizures.
What are some websites I can go to learn more about Down Syndrome?
National Down Syndrome Society www.ndss.org This site, established in 1979 to increase public awareness about Down Syndrome, helps families to address the needs of children born with this genetic condition; as well as sponsoring and encouraging scientific research.
National Down Syndrome Congress www.ndsccenter.org A national advocacy organization for Down Syndrome, providing leadership in all areas of concern.
National Association for Down Syndrome www.nads.org A non-profit organization founded in Chicago in 1961 by parents of children with Down Syndrome who sought to create a better environment and bring about understanding and acceptance of those with Down Syndrome.
Down Syndrome: For New Parents http://www.downsyn.com An informational website created by parents of a child with Down Syndrome.
National Dissemination Center for Children with Disabilities http://www.parentcenterhub.org/repository/downsyndrome/ A national information center providing information on disabilities and disability-related issues focusing on children and youth.
What are some books to help my family and I learn more about Down Syndrome?
Books for Parents:
Understanding Down Syndrome: An Introduction for Parents by Cliff Cunningham. This book covers the latest methods of treatment, advice on care of both the young child and the older person, the importance of professional guidance, and the techniques of prenatal testing.
Early Communication Skills for Children with Down Syndrome by Libby Kumin. This book focuses on speech and language development from birth through the stage of making three-word phrases around the age of 5 or 6, but can occur later.
The Down Syndrome Nutrition Handbook: A Guide for Promoting Healthy Lifestyles by Joan E. Medlen. This book covers breast and bottle feeding, basic nutrition and physiology, Celiac disease, diabetes, alternative therapies, food and school, weight management, fitness and exercise, cooking and menu planning, education activities.
A Parent’s Guide to Down Syndrome by Seigfried M. Pueschel. The book covers a range of topics from prenatal diagnosis to stimulating your child’s gross motor, fine motor and speech skills from pre-school to adolescence and on to adulthood.
Babies with Down Syndrome by Karen Stray-Gundersen. The book discusses medical issues associated with Down Syndrome, taking care of your baby, family life, how your baby will develop, early intervention, education and legal rights.
Medical and Surgical Care for Children with Down Syndrome: A Guide for Parents. (1995). Topics discussed include heart disease, endocrine problems, skin conditions and gastrointestinal problems.
Books for Siblings:
Be Good to Eddie Lee by Virginia Fleming and Floyd Cooper. “Christy’s mother always tells her to be good to Eddie Lee, a neighborhood child with Down Syndrome. But Christy wants to run and play and not worry about Eddie Lee tagging along. One hot summer day, though, Eddie Lee teaches Christy a valuable lesson. (Ages 4-8)
How Smudge Came by Nan Gregory. The story of a young woman with Down Syndrome named Cindy who finds a puppy. But puppies aren’t allowed in the group home where she lives, so she hides the puppy named Smudge in her room. (Ages 5-8)
Our Brother Has Down Syndrome: An Introduction for Children by Shelley Cairo, Jasmine Cairo and Tara Cairo. This book explains Down Syndrome to young children, especially siblings. (Ages 4-8)
We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen and Pam Devito. When young Emma learns she’ll soon have a new sibling, she thinks of all the activities she can do with the baby. But when her brother Isaac is born with Down Syndrome, her father explains that she can probably do all the activities she had planned, but that Isaac might require more time, patience, and help to do them. Information about Down Syndrome is appended. (Ages 4-8)
What’s Wrong with Timmy? by Maria Shriver and Sandra Speidel. This book tells the story of Kate, an 8 year old who notices that a new boy, Timmy, is different. While the book doesn’t mention Down Syndrome, Timmy is described as being slow and having a flat face. Kate befriends Timmy, but the story doesn’t end there. Instead, the last part of the book deals with Kate’s questions as to why God makes life so hard for some people, how Timmy’s parents feel about having a child like Timmy, and how it feels to be laughed at. (Ages 5-9)
Where’s Chimpy? by Berniece Rabe, Kathleen Tucker and Diane Schmidt. Full-color photos and story document the daily life of a little girl and her special dad. (Ages 4-6)
Videos for Children:
Baby Mozart. It’s called “the Mozart Effect,” the notion that exposing youngsters to the melodies of Mozart and other classical musicians can improve verbal ability, spatial intelligence, creativity and memory.
Teletubbies: Nursery Rhymes. Your child will love the music of King Pleasure and the Biscuit Boys as they sing “The Duke of York” and “Hickory Dickory Dock.”
Sesame Street featuring Elmo. Your child will love to watch the whole Sesame Street gang, especially “Elmo’s World.”
Baby Bach. From the makers of “Baby Mozart.” Your child will love the entertaining music and images.
Videos for Parents:
Down Syndrome: The First 18 Months. by Will Schermerhorn. This video is a reassuring and realistic introduction to the unique joys and challenges that children with Down Syndrome bring to their families during the critical first 18 to 24 months of life.