New & Expecting Family Information
If you have just received a Down syndrome diagnosis, you are probably experiencing a whirlwind of emotions. Learning that your baby has Down syndrome is an overwhelming and emotional experience for most parents. You may initially feel confused, frightened, angry, saddened, and/or isolated. Let us provide resources and education. Let us connect you to other parents who have been in your shoes. Try to take things one day at a time and remember that your baby is a baby first- and is not defined by their diagnosis.
What We Want You To Know
Right now there may be a lot of emphasis on how your baby may be different and the potential medical problems he or she may face, but no one can predict future challenges. You may be feeling like this is not what you had planned. We like to share this poem that often resonates with our newly diagnosed families: Welcome to Holland.
Over time, you will find that children with Down syndrome are more alike than different from other children.
What is there to do?
- Contact us! Fill out this New Family Information Form. Filling out this quick form allows Down Syndrome of Louisville to refer your child to First Steps, and securely save your information so you can receive our Weekly Family Updates and texts.
Learn more about Down syndrome:
- Understanding a Down Syndrome Diagnosis: This booklet has the latest medical and developmental information about people with Down syndrome as well as local and national resources, pregnancy options, and helpful visuals and graphics. A copy of this booklet is included in our Welcome Baby Bag. View a Digital Copy Here
- Here are some more great books to help you to share the news/educate your other children, friends, or extended family. We have physical copies of most of these in our Resource Library at DSL that you are welcome to borrow.
- Become a Kindness Warrior and ask your friends and family to do the same. When you become a Kindness Warrior you will learn about Ds and be an official advocate for those with disabilities.
- Set up a visit and tour of Down Syndrome of Louisville | Call or text Julie Torzewski whenever you are ready (502-333-4478)
- A Tour of Down Syndrome of Louisville’s main campus and all we have to offer.
- Meet a family with similar circumstances to your own. You can text, call or meet in person- whatever your comfort level may be.
- Meet with other moms – Our moms love to gather and share their experiences if it benefits a new or soon-to-be mom
- Sibling Education/Workshops – We offer educational resources, books, and support groups for the entire family
- Come see an Early Education Class
- Attend one of may Family Fun Events
- Get on our email and text lists so that you can stay up to date with everything happening at DSL
What we can help with?
- Prenatal Resources:
- Lettercase Prenatal & Postnatal Resources | DSL participates in a weekly call with Lettercase to get accurate, balanced, and up-to-date information about genetic conditions. Lettercase leads the effort to make sure all expectant parents and providers have the resources and support they need at the moment of diagnosis. Visit lettercase.org for up-to-date and accurate information.
- Down Syndrome Pregnancy Program
Signing up for Early Intervention Services available to you:
- Social Security Information | This can help explain SSI for an individual with a disability, and how to start the application process.
- Medicaid & Waiver Services
- First Steps KY & IN | Learn more about First Steps & Developmental Intervention Services. This is a FREE service for all children with DS. DSL can refer you, or you can self refer.
- We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome. You may contact us to find out more or contact NDSAN directly at (513) 213-9615. A local nonprofit, Angels in Disguise, also offers support for those adopting a child with Down Syndrome.
- Sibling Resources: