What We Want You To Know.
At Down Syndrome of Louisville, we are here for you whenever you are ready to learn more about your new diagnosis or potential diagnosis. 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. You may initially feel confused, frightened, angry, saddened, and/or isolated.
YOU ARE NOT ALONE.
Let us help.
Down Syndrome of louisville is the largest and most robust local Down Syndrome Association in the country! Let us provide resources and education. Let us connect you to other parents who have been in your shoes.
We hope these resources will help families understand how having a child with Down syndrome can enhance the entire family.
- “Understanding a Down Syndrome Diagnosis” by Lettercase
- Down Syndrome Pregnancy Program
- Down Syndrome Diagnosis Network (DSDN)
- Dear Future Mom
- “If I Could Go Back” video:
- Adoption: 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.
What Is There To Do?
We invite our expecting parents to take advantage of the following before baby arrives are:
- Take 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 many Family Fun Events
- Get on our email and text lists so that you can stay up to date with everything happening at DSL
What Can We Help With?
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 their website for up to date and accurate information.
Early Intervention Services that will be available to you and your child:
Social Security Information- This can help explain SSI for an individual with a disability, and how to start the application process.
Medicaid Application Documentation- Medicaid can help financially support a person with special needs. It is income-based, but we recommend all families to try and receive Medicaid for their child.
Kentucky waiver services- This table briefly lists the three waivers available in KY for an individual with a disability.
Michelle P. Waiver information- This Kentucky waiver provides assistance to individuals with intellectual or developmental disabilities to help them live in the community as independently as possible. (There is a long waiting list, so we suggest you get on this as soon as possible)
First Steps KY & IN
What is First Steps?