New & Expectant Parent Resources

Congratulations on the birth or expected birth of your baby! You probably have lots of questions. You may be grieving the loss of the baby you expected. You may be concerned or overwhelmed. These feelings are normal. The most important thing for you to keep in mind is that a Down syndrome diagnosis is not as “life changing” as the fact that you have a new baby. And in most ways, your baby will be just like other infants. He or she will need to be fed, held, and loved. There will be many joys in raising your baby, as well as some challenges along the way. Down syndrome is a condition your baby has, but it is not who your baby is. It’s normal to be nervous about what lies ahead.

Know that when you are ready, the DSAWM is here to support you. Many new parents have found that the single most helpful thing they did after receiving a Down syndrome diagnosis was to talk to other parents of children with Down syndrome. When you are ready, please contact us to connect with our First Call Network.

Connect with us

Become a DSAWM Member

DSAWM’s membership is comprised of 350 families across 12 West Michigan counties. In addition to the outreach that we do within the community through our partnerships and advocacy initiatives, we also offer a wide variety of programming for our members from birth to adulthood. You can read more about our programs and services on the Our Programs & Services page. The annual $35 membership fee is waived for new parents, so your first year of access to programs, services, and events is free to you and your family! Most importantly, as a DSAWM member you join a community of advocates and families who are all committed to the same mission: embracing Down syndrome, empowering individuals, and promoting opportunities for meaningful lives.

Upon becoming a member, DSAWM will send you our New Parent Packet. The New Parent Packet is full of helpful information about what to expect during the first few years of your child’s life, the joys and challenges associated with a Down syndrome diagnosis, and the services and support that DSAWM and other area organizations offer.

Become a Member

DSAWM Programs and Services for New & Expectant Parents

New & Expectant Parent Gifts

DSAWM provides new and expectant parents with accurate, up-to-date, compassionate information from leading Down syndrome and medical experts in the form of our New Parent Packet. Expecting parents can also receive information explaining prenatal testing. When new babies arrive, families receive a gift celebrating their new addition. To request information, contact DSAWM at 616-956-3488 or victoria@dsawm.org for more information.

Member Financial Assistance

DSAWM’s Member Financial Assistance Fund is designed to provide financial support to families raising individuals with Down syndrome who need help with certain Down syndrome-related expenses including adoption, education, therapy, adaptive devices, respite, and hospital stays.

Oh, Baby!

This baby shower for families who have a child with Down syndrome aged 5 and younger is a celebration and an opportunity for parents and siblings to connect with other families experiencing Down syndrome. Oh, Baby is held in August at the Grand Rapids Children’s Museum.

Parents For Parents

Parents for Parents mentors are a group of “veteran” moms and dads who have stood in the shoes of new parents of babies with Down syndrome. If you are interested in being connected to a parent mentor or becoming a mentor, contact DSAWM at 616-956-3488 or victoria@dsawm.org.

Weekly Update Newsletter

The Weekly Update newsletter is emailed every Thursday and shares upcoming programs and services from DSAWM and our community partners. For new parents, it is an easy way to get connected and learn about the opportunities available to you and your family.

Access! GR

Through a partnership with ACCESS GR, DSAWM can connect members with the rich arts & cultural scene in West Michigan. Free tickets are available in a limited supply for both ongoing venues and special event venues. Accommodations can be made to make sure the arts are accessible to everyone.

Holiday Party

Every December, DSAWM families gather in Grand Rapids and Kalamazoo to visit with Santa and reconnect with friends. The Grand Rapids Holiday Party is a member-only event and is held at alternating venues around Grand Rapids.

Member Picnic

Each summer, DSAWM families gather at Tunnel Park in Holland for a day of friends, food, and fun in the sun. The Member Picnic is a member only event and is held in July.

Rock Your Socks Dance

Rock your socks off at our annual Rock Your Socks Dance in honor of World Down Syndrome Day (3/21). The event is open to anyone interested in celebrating Down syndrome.

Step Up for Down Syndrome

Step Up For Down Syndrome is the largest Down syndrome awareness event in Michigan and DSAWM’s biggest fundraiser. Families, friends, and the public are invited to this annual celebration and walk held each September where we come together to support our loved ones with Down syndrome.

Community Supports

Resources listed are not necessarily endorsed by DSAWM, but are a list of options that are available. If you know of additional West Michigan resources, please let us know at info@dsawm.org.

Where to Begin

Supports Coordination: Early On

Early On Michigan provides free services to families who have children (0-3) who have medical problems or are developmentally delayed. Services can include information, evaluation, linking to services, parent network, and financial help. Contact 800-327-5966 or Find your county’s Early On referral contact
Finding a Medical Provider for Your Child's Needs

Looking for a medical provider? The Preferred Medical Provider List is maintained by Down Syndrome Head Start and lists doctors, dentists, and other providers recommended by Michigan families experiencing Down syndrome. **Please note that Down Syndrome Head Start’s website has been down as of November 2018. This list has not been updated since 2017. If you are looking for more up-to-date information, we recommend reaching out on the Michigan Parents of Children with Down Syndrome Facebook group.

The Family Center for Children and Youth with Special Health Care Needs (Family Center) is also a helpful resource for Michigan families. The Family Center is the statewide parent-directed center within Children’s Special Health Care Services (CSHCS) and the Michigan Department of Health and Human Services (MDHHS). It offers emotional support, information, and connections to community-based resources to families of children and youth with special health care needs, as well as provides parental perspectives and input on health care matters while focusing on families’ access to coordinated systems of care.
Paying for Your Child's Healthcare Expenses: CSHCS & CSNF
Children’s Special Health Care Services (CSHCS) of Michigan provides low or no cost supplemental health insurance for a variety of covered medical diagnoses for individuals under 21 years old. While Down syndrome alone is not a qualifying diagnosis, CSHCS covers over 2,700 physical conditions of which many individuals with Down syndrome may experience at least one. A complete list of covered conditions can be viewed here. Find your county’s CSHCS branch

The Children with Special Needs Fund provides support for children ages 0-21 in Michigan with special health care needs not available through any other funding source. The Fund helps with the purchase of equipment and services that promote optimal health, mobility, and development, enhancing the lives of children and their families.

Get to Know the Community

Parent Support Groups
DSAWM Parents for Parents Mentors are a group of “veteran” moms and dads who provide support for expectant and new parents. If you are interested in being connected to a parent mentor or becoming a mentor, contact DSAWM at 616-956-3488 or victoria@dsawm.org.

DSAWM Dads’ Night Out, or DNO, invites fathers raising children with Down syndrome to meet at local restaurants and share experience and support. Visit the DSAWM calendar for upcoming dates or visit the Dads Facebook Page.

DSAWM Moms’ Night Out, or MNO, invites mothers raising children with Down syndrome to meet at local restaurants to share experiences and support. Gatherings are held monthly in three locations: Lakeshore (Grand Haven/Muskegon), Grand Rapids, and Kalamazoo. Visit the DSAWM calendar for upcoming dates.

Facebook Parent Support Groups

DSAWM Members and Families is a place for DSAWM members and families to connect, share resources, and give advice and support to others in the Down Syndrome Association of West Michigan community.

DSAWM 21 Shades is open to all families of color and multicultural families who are raising or love a person with Down syndrome in West Michigan.

DSAWM Familias Hispanas y Latinas is open to all DSAWM Hispanic and Latino families.

Michigan Parents of Children with Down Syndrome Facebook Group is an online community for parents and caregivers in Michigan who have children with Down syndrome and other chromosomal abnormalities. Sharing experiences, asking questions, posting inspiring items, and sharing resources and news from the special needs community are all enthusiastically encouraged!

The Down Syndrome Diagnosis Network maintains a directory of online support groups for families in a variety of topic areas from feeding support to families of color to GI concerns and more.
National Down Syndrome Organizations
Down Syndrome Diagnosis Network

Down Syndrome Medical Interest Group – USA

Global Down Syndrome Foundation

LuMind ISD

National Association for Down Syndrome

National Down Syndrome Society

National Down Syndrome Congress

To identify other Down syndrome-focused organizations in your area visit our Additional Local & National Down Syndrome Resources page.

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Download New & Expectant Parent Resources PDF