Adoption as an Option: The National Down Syndrome Adoption Network
By Stephanie Thompson
The National Down Syndrome Adoption Network is a national adoption program that was founded in 1982, under the umbrella of the Down Syndrome Association of Greater Cincinnati. We provide information and support to anyone who contacts us, from someone who sees a post about us on social media, to an adoptive family who would like to join our registry, to our most important contact: the expectant or new family who receives a diagnosis of Down syndrome from their Genetic Counselor.
Over 90% of families who contact us have received a prenatal diagnosis, and 90% of those families find out about the NDSAN through a Google search. Most of the time, the option of adoption, and sometimes the option of parenting, is not presented to the expectant family at the time of a diagnosis.
When an expectant parent contacts us, the first thing we do is connect with them and join them in their space of grief. We allow them to freely tell us their story of getting the diagnosis and what feelings came about afterwards. We are able to connect with the families, because my biological son Christopher also received a diagnosis of Down syndrome. Although I had a post-natal diagnosis given to me by the In-House Pediatrician, the grief is the same. I was devastated. I had no idea what Down syndrome was, and I grieved the child I thought I was going to have. Although the diagnosis was long ago, I still remember everything about the twenty-second exchange between the Pediatrician and myself.
Parents are comforted when they meet someone who has been on the same journey. Getting that diagnosis makes you feel like you are the only person in the world who has been through this. Once I share with families that I also have a child with Down syndrome and that I have been through that grief, it’s like their cloud lifts a little, and they are wanting to know more about Down syndrome, and what parenting may look like.
After we share our diagnosis experiences, I ask the family how much they know about Down syndrome. This is where educating them happens. It is a requirement of the NDSAN that families are given accurate, up-to-date information on Down syndrome, from the actual definition, to possible medical issues, to answering all of their questions about Down syndrome in general.
Our next step in the journey is to talk about what parenting a child with Down syndrome may look like. Since I am a parent myself, this is their opportunity to ask me any questions about parenting, and I will be authentic and open with my answers. I provide them with a website link to their local Down syndrome parent group, so they can get an idea of how it may look to raise a child with Down syndrome in their community.
It’s at this point where the family reaches a decision. Close to half of the families we counsel about parenting a child with Down syndrome decide to parent their child.
Over half of the families thank us for the information, but they tell me they love their child so much, that they know there is another family out there who is ready and who has been preparing to care for a child with Down syndrome, and, out of love, they make an adoption plan for their child.
The NDSAN has a registry of 40 families who are approved to adopt a child with Down syndrome. Most of these families have a connection to Down syndrome—either through a relative or a neighbor; they may have babysat a child with Down syndrome, or cared for them in their church nursery. They may have a job where they have consistent contact with children, such as a Special Education teacher, or a speech therapist. Some families tell me they feel so strongly called to adopt a child with Down syndrome, and they reach out to the local Down syndrome parent group to gain education and volunteer with them for hands-on experience.
The NDSAN is not an adoption agency, so when the expectant or new family is ready to walk the journey of adoption, we connect them with an agency in their area who has experience with special needs adoption. The agency will present our adoptive families for the expectant or new family to review. An adoptive family is chosen; a match is made.
Our work doesn’t end once that match is made. We remain on the journey with both families now, ready to be a support or answer any questions both families may have.
Placement of the baby will occur a few days after the baby is born, to give time for the birth mom to recover from the birth, and to have time with her baby before the adoption occurs. At placement, papers are signed, giving the adoptive family custody of the child. The baby will go home with the adoptive family.
The National Down Syndrome Adoption Network is committed to supporting everyone who is part of this journey, including genetic counselors. We have created a booklet specifically for medical professionals to be given to expectant families at the time of diagnosis. “A Loving Choice: Adoption as an Option” was created to talk about adoption, but we also touch on what Down syndrome is, and what parenting may look like. You can view the booklet here:. We also have hard-copies of this booklet that we would be happy to mail to you at no cost.
Let’s all join together to provide peace, comfort, support and accurate information to families who take the journey of receiving a diagnosis of Down syndrome.
Genetic Testing and the Rush to Perfection, National Council on Disability, October 23, 2019.