Our thanks to Stephanie for sharing her expertise and experience of parenting a child with Down syndrome in this guest post.
As the mother of a child with Down syndrome (since 1992!) and as the director of the National Down Syndrome Adoption Network, I’ve learned a lot about what it takes to care for a child with Down syndrome. If you are thinking about fostering or adopting a child with Down syndrome, I encourage you to do your homework, connect with the Down syndrome community, and know what your resources are and how to access them.
First: do your research! Learn about Down syndrome.
Down syndrome is the most common chromosomal issue diagnosed in the United States. It occurs when there is an extra copy of a chromosome is present at the time of conception. Children with Down syndrome have intellectual differences and distinct facial features, and most will have low muscle tone.
Close to 60 percent of children with Down syndrome are born with a heart issue. They may also have gastrointestinal, vision, hearing, and skin issues, which can last throughout their lives. You can get a great understanding of the many issues related to Down syndrome at the National Down Syndrome Society Resource page.
Connect with the Down syndrome community
The more experience you have with the Down syndrome community, the more confidence you will have in parenting a child with Down syndrome. Before you decide to foster or adopt a child with Down syndrome, I suggest taking these steps:
- Get involved with your local Down syndrome parent group. They will educate you and help you learn about the resources that are available in your area.
- Go to any workshops and programs that are offered on topics such as feeding, medical issues, and therapies.
- Volunteer for your local parent group, so that you can gain that experience that you will need to parent a child with Down syndrome. You can find a list of Down syndrome parent groups organized by state at the Global Down Syndrome Foundation website.
Think about how adopting a child with Down syndrome will affect your family
How will adopting a child with Down syndrome affect your family? The same as adopting any child! Children with Down syndrome are more like other children than different from them, but there are a few things to consider:
- Raising a child with Down syndrome may be a lifelong commitment. Some adults with Down syndrome need minimal care and can live independent lives. Other adults may need more extensive, involved care.
- Some children with Down syndrome have more medical needs, so be prepared for more medical appointments.
- Most children with Down syndrome love to be part of their community! So be ready to cheer them on at their swim meets, soccer games, or karate tournaments!
Read about one family who adopted four boys with Down syndrome, the Pinkertons of Douglas, Wyoming!
If you’ve decided to move forward, be sure your home study reflects your interest and capability
Once you feel like you have an understanding of Down syndrome and you’ve had enough hands-on experience interacting with individuals with Down syndrome and are considering adopting a child with Down syndrome, you will want to make sure your home study reflects your intention and experience. That way, workers who are searching for families for a child with Down syndrome will find you! Our organization regularly checks sites like AdoptUSKids and contacts parents who have indicated that they are searching for a child with Down syndrome.
Access all available support and information
- Children with Down syndrome can receive benefits including Supplemental Security Income, Medicaid, and adoption assistance (financial payments through the state). You can find more information on adoption assistance, sorted by state, at the North American Council on Adoptable Children site.
- Your local Down syndrome parent group should be able to send someone to do a home visit and help you access supports and resources that are available in your community.
- Connect with your local Your local Down Syndrome medical care center for assessments and referrals to experts for treatments of the conditions commonly associated with Down syndrome (heart issues, hearing loss, thyroid issues). There is a list on the Global Down Syndrome Foundation website.
Educational webinars on various topics related to Down syndrome at the National Down Syndrome Congress and Global Down Syndrome Foundation websites.
A Guide to Adoption Subsidies and Assistance for Adoptive Parents, published by the National Council for Adoption
Our organization, the National Down Syndrome Adoption Network (NDSAN). We work with birth parents and parents planning to adopt children with Down syndrome.
Adopting a Child with Down Syndrome, an NDSAN webinar that explains how to adopt a child with Down syndrome.