New Families

Welcome to the Down Syndrome Network of Montgomery County. We know that the birth or upcoming birth of your baby with Down syndrome brings many mixed emotions – love, fear, joy, sadness and many questions. Whatever you might be feeling or thinking, these first days and weeks can be overwhelming, but we would like you to know that we have been in your shoes and are here to help in whatever way we can.

If you are like many of us, you have not had experience with Down syndrome and are looking for information. We don’t have all the answers, but our packet for new parents provides information about Down syndrome and resources in Montgomery County.

Meeting and talking with other parents in our group can provide you with valuable information, comfort, and perspective. We have also included many resources here on our website to provide you with current information on Down syndrome. Improved medical care, early intervention and advocacy are enabling children with Down syndrome to lead bright and fulfilling lives.

We hope that you will reach out to us. We would like to help you navigate these first days and weeks so you can come to experience the overwhelming joy and love that our children bring to our lives.

Expectant Parents

Brighter Tomorrows
A Web-based resource on receiving a diagnosis of Down syndrome prenatally and at birth.

National Down Syndrome Society (NDSS)
The NDSS is a national organization that is committed to improving the quality of life of all people with Down Syndrome.

Recommended Reading

  • “Expecting Adam” by Martha Beck [Amazon]
  • “Gifts” by Kathryn Soper [Amazon]

Search the Montgomery County Public Library catalog for these titles.

New Parents

National Resources

Brighter Tomorrows
A Web-based resource on receiving a diagnosis of Down syndrome prenatally and at birth.

D.A.D.S – Dads Appreciating Down Syndrome
An organization of fathers of children who happen to have Down syndrome (Nearest local chapter is Northern Virginia)

Down Syndrome Research and Treatment Foundation
A foundation whose purpose is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome.

La Leche League
Promotes a better understanding of breastfeeding as an important element in the healthy development of the baby and mother.

MedCalc Interactive Growth Charts
Includes growth charts for typical children and children with Down syndrome.

National Down Syndrome Congress
The NDSC is a non-profit organization that advocates for individuals with Down Syndrome to provide them with better opportunities and equality.

National Down Syndrome Society
The NDSS is a national organization that is committed to improving the quality of life of all people with Down Syndrome.

National Information Center for Children with Disabilities
This website serves as a central source of information on disabilities, IDEA, no child left behind, etc.

Social Security Adminstration Publications
Publication about possible benefits for children with disabilities

Kennedy Krieger Institute: Down Syndrome Clinic
The clinic strives to optimize the health and quality of life for children and adults with Down syndrome.

Maryland Department of Disabilities
The Maryland Department of Disabilities (MDOD) helps to advance the rights and interests of people with disabilities so they may fully participate in their communities.

Special Olympics-Maryland
Special Olympics gives individuals with disabilities the opportunity to participate in sports and athletic competitions.

The Early Childhood Gateway
The Early Childhood Gateway offers great resources for providers and parents with young children with disabilities from birth to five.

The Arc Montgomery County
Supports children, youth, adults and families affected by intellectual and developmental disabilities by providing child care, work skills training, employment, community living services, resources and advocacy.

Child Find
For families moving to the area, contact Child Find to conduct an assessment to have your child placed in services

Disability Resource Center of Montgomery County Libraries
The Disability Resource Center (DRC) is the focal point within Montgomery County Public Libraries (MCPL) for library and literacy services to people with disabilities, their families, caretakers and professionals.

Montgomery County Department of Health and Human Services
The Department of Health and Human Services of Montgomery County through its Community Support Network (CSN) has a program called “My Turn Program” which provides programmatic and financial assistance to families with children with developmental disabilities from 3 to 13 years.

Montgomery County Infants and Toddlers Program
The Infants and Toddles program provides early intervention services to children in Montgomery County with developmental delays from the time they are born to up to 3 years of age.

Special Olympics MD Montgomery County
Provides year-round sports training and athletic competition in 15 Olympic-type sports for citizens with intellectual disabilities. Programs are FREE to eligible athletes.

Recommended Reading For Parents

  • “Babies with Down Syndrome: A New Parent’s Guide” edited by Susan J. Skallerup [Amazon]
  • “Common Threads: Celebrating Life with Down Syndrome” by Cynthia Kidder and Brian Skotko, photos by Kendra Dew. Band of Angels Press [Amazon]
  • “Gifts” by Kathryn Soper [Amazon]
  • “Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome” by Jennifer Graf Groneberg [Amazon]
  • “Early Communication Skills for Children with Down Syndrome” by Libby Kumin [Amazon]
  • “Fine Motor Skills for Children with Down Syndrome” by Maryanne Bruni [Amazon]
  • “Gross Motor Skills in Children with Down Syndrome” by Patricia Winders [Amazon]

Search the Montgomery County Public Library catalog for these titles.

Siblings

Sibling Support Project
A national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. Contains links to the local Maryland groups.

Recommended Reading 4 – 8 years

  • “We’ll Paint the Octopus Red” by Stephanie Stuve-Bodeen [Amazon]
  • “I Can, Can You?” by Marjorie W. Pitzer [Amazon]
  • “My Friend Isabelle” by Eliza Woloson [Amazon]
  • “What’s Wrong with Timmy?” by Maria Shriver [Amazon]
  • “ABC for You and Me” by Meg Girnis [Amazon]
  • “123 for You and Me” by Meg Girnis [Amazon]
  • “Where’s Chimpy” by Berniece Rabe [Amazon]
  • “Russ and the Firehouse” by Janet Elizabeth Rickert [Amazon]
  • “Our Brother has Down Syndrome” by Shelley Cairo, et al. [Amazon]

Recommended Reading 9 and Up

  • “The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs” by Don Meyer [Amazon]
  • “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters” by Brian Skotko [Amazon]
  • “My Brother, Matthew” by Mary Thompson [Amazon]
  • “Views from Our Shoes: Growing Up With a Brother or Sister with Special Needs” by Donald Meyer [Amazon]

Search the Montgomery County Public Library catalog for these titles.

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