New and Expectant Parents
My child has Down syndrome. Now what?
Whether you are celebrating the birth of your child or anticipating his or her arrival, we congratulate you! We know this journey is not without its unique challenges and new experiences, but rest assured, you are not alone. Instead, you have become part of a large, deeply caring and warmly welcoming community.
National Down Syndrome Congress and Global Down Syndrome Foundation have teamed up to publish the second edition of the groundbreaking Prenatal Testing & Information About Down syndrome pamphlet, available in English, Spanish and Icelandic. The second edition, created from the first national survey of pregnant women and medical professionals, is easily accessible electronically, or in print at no cost.
Below is where you will find the basic information you need to manage your pregnancy, plan for the delivery and get started on the rewarding process of having a child with Down syndrome in your life. We can answer what now seems like daunting questions and put you in contact with other supportive, knowledgeable and sensitive parents who have walked this path before. We are here to support families affected by Down syndrome from before birth and throughout your life.
If you would like to discuss any aspect of what is offered here, please call the National Down Syndrome Congress, toll free, at 1-800-232-NDSC (6372), Monday though Friday from 9:00 AM to 5:30 PM eastern time.
Please take a look any of our helpful new and expectant parent information:
- 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.
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.
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).
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.
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
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 reward, just like any parent.
Additional information and downloadable resources for new parents are below:
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.
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
The Down 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.
- 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
American Occupational Therapy Association
4720 Montgomery Lane
Bethesda, MD 20824
American Physical Therapy Association
1111 N. Fairfax Street
Alexandria, VA 22314
American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
Early Childhood Intervention Clearinghouse
830 South Spring Street
Springfield, IL 62704
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, D.C. 20013-1492
Fine Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.
Bethesda, MD: Woodbine House.1998.
Early Communication Skills in Children with Down Syndrome.
Bethesda, MD: Woodbine House. 2003.
The New Language of Toys: Teaching Communication Skills to Children with Special Needs.
Bethesda, MD: Woodbine House.2004 (3rd Edition).
Babies With Down Syndrome: A New Parents Guide.
Stray-Gundersen, Karen (Ed.).
Bethesda, MD: Woodbine House. 1995 (2nd Edition).
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.
Winders, Patricia C.
Bethesda, MD: Woodbine House. 1997.
Understanding Down Syndrome: An Introduction for Parents.
Cambridge, MA: Brookline Books. 1999. (3rd printing).
An overview for new parents and professionals of children with Down syndrome. www.brooklinebooks.com
A Parent’s Guide to Down Syndrome: Toward a Brighter Future.
Pueschel, Siegfried M. (Ed.).
Baltimore: Brookes Publishing. 2001.
A comprehensive reference book especially for new parents, but useful and informative for “seasoned” parents as well. Topics include: history of Down syndrome; developmental expectations; early intervention; the school years; recreation; adolescence and adulthood; vocational training and employment. 800-638-3775;www.pbrookes.com
New York: Oxford University Press. 2008. (3rd Edition).
A substantial yet uncomplicated handbook written for parents, by a pediatrician, with basic information and observations. 800-451-7556.www.oup.com/us/
Babies with Down Syndrome: A New Parent’s Guide.
Skallerup, Susan J. (Ed.)
Bethesda, MD: Woodbine House. 2008 (3rd Edition).
A comprehensive guide for new parents, covering all aspects of care for babies and young children. 800-843-7323; www.woodbinehouse.com
INFORMATION FOR PARENTS OF OLDER CHILDREN AND ADOLESCENTS
Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality.
Bethesda, MD: Woodbine House. 2007.
Factual information and practical ideas for teaching children with Down Syndrome about body awareness, puberty, sexuality, appropriate behavior and relationships.
Managing a Special Needs Trust: A Guide For Trustees.
Jackins, Barbara D. Esq., Richard S. Blank, Esq., and Harriet H. Onello, Esq.,
Brookline, MA: DisABILITIES, Inc. 2010.
Future planning can be both complex and emotional and this reference guide will be helpful in answering a myriad of questions. This version is updated and covers all 50 states.
Adventures in the Mainstream: Coming of Age with Down Syndrome.
Bethesda, MD: Woodbine House. 2005.
A father’s inspiring account of life with his son, Ned, as he graduates from high school and prepares for his first “real” job. 800-843-7323; www.woodbinehouse.com
Adolescents with Down Syndrome: Toward a More Fulfilling Life.
Pueschel, Siegfried M. and Maria Sustrova (Eds.).
Baltimore: Brookes Publishing. 1997. Insight and information on biomedical, psychological, social, behavioral, educational, vocational, and legal concerns. 800-638-3775;
Next Chapter Book Club: A Model Community Literacy Program for People with Intellectual Disabilities.
Rabidoux,Tom Fish & Paula with Jillian Ober & Vicki L.W. Graff.
Bethesda, MD. Woodbine House,2009 Recognizing that opportunities for people with intellectual disabilities to participate in book clubs were rare, The Ohio State University Nisonger Center, part of a consortium of University Centers for Excellence in Developmental Disabilities, developed the Next Chapter Book Club (NCBC). The book is designed to be a thorough how-to manual, complete with resources and tools, which anyone can use to start a new community group and facilitate the ongoing meetings.
The Down Syndrome Transition Handbook: Charting Your Child’s Course to Adulthood.
Simons, Jo Ann.
Bethesda, MD: Woodbine House. 2010. Simons writes from a professional perspective as someone who worked with many families as they went through Transition. As a mother, she has lived it. The book explains legal issues, funding mechanisms, options for “creating a meaningful and purposeful day” once the school bus stops coming, housing, post-secondary education opportunities, health care and more. Understanding what options are available (or may not be) goes a long way to making informed choices about preparing your child for a future as an adult. www.woodbinehouse.com
Delicate Threads: Friendships Between Children With and Without Special Needs in Inclusive Settings.
Bethesda, MD: Woodbine House. 1998. Examines the friendship between children with and without disabilities in an inclusive elementary school. Provides a rare view of the nature of these friendships, their impact on the children, as well as their parents and teachers. 800-843-7323; www.woodbinehouse.com
INFORMATION FOR PARENTS OF ADULTS
Mental Wellness in Adults with Down Syndrome.
McGuire, Dennis and Brian Chicoine.
Bethesda, MD: Woodbine House. 2006. Directors of the Adult Down Syndrome Center in Illinois share their experience in working with more than 3000 patients since 1992. This book addresses specific disorders and diagnoses, and offers treatment ideas for both professionals and caregivers. www.woodbinehouse.com
The Guide to Good Health for Teens and Adults with Down Syndrome.
McGuire, Dennis and Brian Chicoine.
Bethesda, MD: Woodbine House. 2010. This second book provides excellent information on maintaining good physical health and providing appropriate care to diagnose and treat health problems. They believe there is a strong link between mental and physical health for patients with Down syndrome.
Adults with Down Syndrome.
Pueschel, Siegfried M. (Ed.).
Baltimore: Brookes Publishing. 2006. A comprehensive book on the social, clinical, legal, and personal issues faced by adults with Down syndrome. The book blends contributions by professionals who work with adults with DS along with personal essays by self-advocates. Topics include: medical and mental health, employment, post-secondary education, social relationships and living arrangements. 800-638-3775; www.pbrookes.com
PARENTING SUPPORT AND INSPIRATION
Road Map to Holland.
Graf Groneberg, Jennifer.
New York, NY: New American Library. 2008. A beautifully written story by a Mom getting to know “the child she didn’t know she wanted, the child she always needed”, her son with Down syndrome. 212-366-2000.
Common Threads: Celebrating Life with Down Syndrome.
Kidder, Cynthia and Brian Skotko.
Rochester Hills, MI: Band of Angels Press. 2001. An essay and photographic celebration of inspirational accomplishments of people with Down syndrome. 800-963-2237; ww.bandofangels.com
Married with Special Needs Children.
Marshak, Laura E. and Fran Pollack Prezant.
Bethesda, MD. Woodbine House. 2008. Professional expertise and personal experiences from hundreds of parents help you realize you are not alone in facing relationship challenges, and provides guidance in keeping a marriage strong and healthy. 800-843-7323; www.woodbinehouse.com
Uncommon Fathers: Reflections on Raising a Child with a Disability.
Meyer, Donald J. (Ed.).
Bethesda, MD: Woodbine House. 1995. Written for fathers, by fathers of diverse backgrounds. 800-843-7323; www.woodbinehouse.com
New York: Broadway Books. 1998. Gene Stallings recounts his life as a football coach and a father, focusing on his relationship with his son Johnny, who has Down syndrome. www.randomhouse.com
Classroom Language Skills for Children with Down Syndrome.
Bethesda, MD: Woodbine House. 2001.
Covers the language needs of children in school, from kindergarten to adolescence, and how to address those needs in the IEP as well as adapting school work. 800-843-7323;
Helping Children with Down Syndrome Communicate Better: Speech and Language Skills for Ages 6-14
Bethesda, MD: Woodbine House. 2008. Provides numerous activities and games that parents and professionals can use to help 6-14 year olds improve their communication. 800-843-7323;www.woodbinehouse.com
Communicating Partners: 30 Years of Building Responsive Relationships with Late-Talking Children.
MacDonald, James D.
London. Jessica Kingsley Publishers. 2004. Practical strategies that families can use to help their children develop positive, engaging, and fun connections with others.
Improving the Communication of People with Down Syndrome.
Miller, Jon F., Mark Leddy and Lewis A. Leavitt.
Baltimore: Brookes Publishing. 1999. Provides a framework for assessing and treating speech, language, and communication problems in children and adults with Down syndrome. 800-638-3775;www.brookespublishing.com
The New Language of Toys: Teaching Communication Skills to Children with Special Needs.
Bethesda, MD: Woodbine House, 2004. (3rd Edition). Ideas to help stimulate language development in children with special needs through play.
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.
Winders, Patricia C.
Bethesda, MD: Woodbine House. 1997. Provides parents and professionals with essential information about motor development associated with Down syndrome.
The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles.
Medlen, Joan Guthrie.
Bethesda, MD: 2002. A comprehensive guide teaching nutrition and healthy living for children with Down syndrome from birth through young adulthood.
Medical & Surgical Care for Children with Down Syndrome.
VanDyke, Don C. and Philip Mattheis, Susan Eberly, Janet Williams (Eds.).
Bethesda, MD:Woodbine House. 1995.A guide for parents providing detailed, easy-to-understand information on awide range of medical conditions.
Deciphering the System: A Guide for Families of Young Children with Disabilities.
Beckman, Paula J. and Gayle Beckman Boyes.
Cambridge, MA: Brookline Books. 1993. Provides basic information about parents’ rights and many other aspects of the service system. Hundreds of good ideas and step-by-step suggestions for handling educational planning meetings.
Peer Support Strategies for Improving All Students’ Social Lives and Learning.
Carter, Erik W., Lisa S. Cushing & Craig H. Kennedy.
Brookes Publishing, Baltimore, MD. 2009. Teachers and schools that are committed to inclusion and looking for ideas on effectively implementing a peer support program will find this to be a helpful handbook to learn why and how peer supports work along with a step-by-step approach to setting up effective programs.
The Paraprofessional’s Handbook for Effective Support in Inclusive Classrooms.
Baltimore, MD. Brookes Publishing Co., 2009. This book explains what special education is; what inclusive education looks like; how to collaborate with other team members and presume competence in students rather than making assumptions about their abilities. Three chapters offer numerous suggestions on how to provide social support by tanding back, and ideas for academic and behavioral supports.
A Guide to Special Education Advocacy: What Parents, Clinicians and Advocates Need to Know.
Philadelphia, PA. Jessica Kingsley Publishers, 2009. www.jkp.com, Special education law is complex, there is usually a big bureaucracy and it involves people who have a ersonal, compelling interest in educating children. Matthew Cohen has spent more than 25 years working with families and children as an attorney who specializes in special education law.
IEP and Inclusion Tips for Parents and Teachers.
Eason, Anne I. and Kathleen Whitbread.
Verona, WI. IEP Resources. 2006. Easy to read format with 127 tips focusing on IEPs and inclusion processes. Chapters include Getting Prepared for the IEP Meeting, Ensuring Access to the General Curriculum, and Friendships. www.attainmentcompany.com
Believe in My Child with Special Needs! Helping Children Achieve Their Potential in School.
Brookes Publishing. 2005. Helping parents become better advocates for their child’s education with information about modifying curriculum, strategies for facilitating friendships, and creative problem solving.
Inclusion: A Service Not A Place, A Whole School Approach.
Gartner, Alan and Dorothy Kerzner Lipsky.
Port Chester, NY: Dude Publishing. 2002. A “how-to” guide for general and special education teachers who want tomake their schools a welcoming and inclusive place for all students.
Teaching Math to People with Down Syndrome and Other Hands-On Learners, Book 2: Advanced Survival Skills.
Bethesda, MD: Woodbine House. 2008. This sequel continues with proven, practical hands-on activities, using games, manipulatives, props and worksheets. Includes more challenging skills usually taught in upper elementary, middle school and beyond.
Teaching Math to People with Down Syndrome and Other Hands-On Learners, Book 1: Basic Survival Skills.
Bethesda, MD: Woodbine House. 2004. A guide to teaching meaningful math skills by capitalizing on visual learning styles. Covers introductory math skills, but may also help older students who struggle with math concepts.
The Power to Spring UP: Postsecondary Education Opportunities for Students with Significant Disabilities.
Katovich, Diana M.
Bethesda, MD. Woodbine House, 2009. A significant portion of this book is devoted to profiles of postsecondary education programs at a variety of schools. It includes information such as instructional focus, living options, levels of support and inclusion, admission requirements, tuition and fees and enrollment numbers so that
readers can compare different programs.
Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers.
Bethesda, MD: Woodbine House. 1995. This step-by-step guide to reading allows parents to work with their child at home and helps them coordinate reading lessons with teachers. 800-843-7323; www.woodbinehouse.com
From Emotions to Advocacy—The Special Education Survival Guide, 2nd Edition.
Wright, Peter W. D. and Pamela Darr Wright.
Hartfield, VA. 2006. Includes hundreds of strategies, tips, references, and internet resources to help parents understand the special education system. Reflects most recent changes to IDEA 2004 and NCLB Act.
BOOKS FOR CHILDREN
Campos, Maria de Fatima.
Frances Lincoln Limited. 2007. A typical day for four year old pre-schooler, Victoria, who brings as much to her classroom as she gets out of it.
Donovan and the Big Hole Grow Wings & Fly
Davenport, Nancy Lambert.
Publishing Co. 2010. A coming of age story involving three young Texans. The twist is that the narrator, 14-year-old Donovan, is a character with Down syndrome. Readers are exposed to positive character traits,including cooperation, courage, friendliness, bravery, honesty, compassion and resourcefulness.
My Sister, Alicia May.
Ling, Nancy Tupper.
Raynham Center, MA. 2009 Pleasant St. Press www.pleasantstpress.com. Rachel knows her sister, Alicia May, is special and she loves her. She also knows that Alicia May can be very annoying. It’s full of beautiful pictures by illustrator Shennen Bersani (who happens to have a little sister with DS.)
My Up & Down & All Around Book.
Pitzer, Marjorie W.
Bethesda, MD. 2008. Each page features a fun photograph of a child with Down syndrome demonstrating the meaning of the word on that page. Also includes suggestions from Dr. Libb y Kumin in using the book to help your child learn prepositions.
Hollidaysburg, PA. Jason and Nordic Publishers. 2005.
Hailey and her first day of kindergarten will help introduce children to some ideas of what it means to have Down syndrome. While acknowledging differences, Hailey is positively portrayed as competent and capable.
Kids Like Me..Learn Colors and ABC’s.
Bethesda, MD: Woodbine House. 2009.Theses board books contain bright colorful photos and feature ethnically diverse babies, toddlers, and children with Down Syndrome.
Veronica’s First Year.
Rheingrover, Jean Sasso.
Morton Grove, IL: Albert Whitman & Co. 1996. Nathan awaits the arrival of his new baby sister, Veronica, and becomes concerned about Veronica when his parents explain she is “special”.
Russ and the Apple Tree Surprise.
Rickert, Janet Elizabeth.
Bethesda, MD: Woodbine House. 1999.
A day in the life of Russ, who happens to have Down syndrome.
800-843-7323; www.woodbinehouse.com (other titles in this series are: Russ and the Firehouse and Russ and the Almost Perfect Day.)
What’s Wrong with Timmy?.
New York: Little Brown. 2001. A mother helps her daughter understand that a child who looks or acts differently, is much more like her, than different.
We’ll Paint The Octopus Red.
Bethesda, MD: Woodbine House. 1998. A simple repetitive story told with warmth and directness puts young siblings’ minds at ease, and helps them develop a positive outlook for their brother or sister with Down syndrome.
My Best Worst Brother.
Bethesda, MD: Woodbine House. 2005. A sequel to We’ll Paint the Octopus Red, this book focuses on the sibling relationship, three years after Isaac is born. The family is learning sign language to help with communication.
My Friend Isabelle.
Bethesda, MD: Woodbine House. 2003. Isabelle and Charlie are friends who don’t have to be just alike to enjoy being with each other. Isabelle has Down syndrome, Charlie does not.
BOOKS FOR ADOLESCENTS/ADULTS
A Special Kind of Hero: Chris Burke’s Own Story.
Burke, Chris and Jo Beth McDaniel.
New York: Bantam Doubleday Dell. 1991. The star of the T.V. show, “Life Goes On” tells his remarkable story and the pursuit of his “impossible dreams”.
Managing my Money: Banking and Budgeting Basics.
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.
Bus Girl: Poems by Gretchen Josephson.
Josephson, Gretchen with Lula O. Lubchenco and Allen C. Crocker (Eds.).
Cambridge, MA: Brookline Books. 1997. Written over the course of several decades, this is a thought – provoking, often humorous, collection of poems from a woman born with Down syndrome.
BOOKS FOR SIBLINGS
That Went Well: Adventures in Caring for My Sister.
Dougan, Terrell Harris.
New York, NY. Hyperion, 2008. Between her sister Irene’s spirited behavior and Terrell’s firm commitment to giving Irene the least restrictive life she can lead,
Terrell’s great sense of humor is a tremendous gift.
Special Siblings: Growing Up With Someone With a Disability.
Baltimore: Brookes Publishing. 2002. Reflections on her own life growing up with a brother with cerebral palsy and mental retardation, the author also interviews more than one hundred other siblings of individuals with special needs.
Views from Our Shoes: Growing Up With a Brother or Sister with Special Needs.
Bethesda, MD: Woodbine House. 1997. A collection of essays by children and young adults who have a sibling with
Living with a Brother or Sister with Special Needs: A Book for Sibs.
Meyer, Donald and Patricia Vadasy.
Seattle: University of Washington Press. 1996. Discusses specific disabilities in easy to understand terms, and the intense emotions brothers and sisters experience.
The Sibling Slam Book: What it’s REALLY Like to Have a Brother or Sister with Special Needs.
Meyer, Donald. (Ed.)
Bethesda, MD: Woodbine House. 2005. The thoughts and feelings of eighty teen siblings from around the world,in the answers to 54 posed questions.
Thicker Than Water: Essays by Adult Siblings of People with Disabilities.
Meyer, Donald. (Ed.)
Bethesda, MD: Woodbine House. 2009. Thirty-nine adult siblings wrote essays about their experiences growing up with their now adult siblings with disabilities. They write of relationships that are complex and simple, joyful and hard, accepting and resentful, ordinary and extraordinary.
Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.
Skotko, Brian and Susan P. Levine.
Bethesda, MD: Woodbine House. 2009. Nearly 100 questions and answers on a broad range of issues considered by siblings of individuals with Down syndrome, this is a terrific guide for teenagers, and lets them know they are not alone in trying to figure out how to manage their feelings about their sibling.