Inspiring Diversity: Educating on Down Syndrome Adoption

The National Adoption Center estimates that there are over 130,000 children with special needs currently awaiting adoption. This includes children with Down Syndrome. 

If you have it in your heart to adopt a child with Down Syndrome, then you’re joining the hundreds of families who already have. Down Syndrome adoption has experienced significant growth over the past two decades, with a 1998 study published in the National Library of Medicine discovering that an overwhelming majority of babies with Down Syndrome born in France and Germany were placed for adoption. 

In 2019, US-based adoption agencies not only placed over 20 children with loving families but also had a waitlist of 40+ families seeking to adopt a child with Down Syndrome. Whether it’s because of what society has learned about the condition that makes it less intimidating or because the viewpoint has changed, these numbers show a positive trend toward how people approach adoption and inclusivity. 

Like traditional adoption, Down Syndrome adoption is the adoption of a child with Down Syndrome. If you are interested in learning more, keep reading. This blog aims to educate and provide awareness about Down Syndrome. 

Let’s Talk About Down Syndrome Adoption

Down Syndrome is a birth defect in which an individual is born with an extra chromosome 21. There are three different types of Down Syndrome: 

• Trisomy 21 – the most common form of Down Syndrome in which a person is born with an extra partial or full chromosome 21
• Translocation – a type of Down Syndrome in which there are three #21 chromosomes
• Mosaicism – occurs when two different types of cells are present

Per the CDC, this “…extra chromosome changes how their body and brain develop. This can cause both physical and mental challenges.” Despite these different forms, there aren’t too many discernible differences when it comes to side effects of Down Syndrome. That being said, even though children with Down Syndrome are typically easily identifiable, as the condition is characterized by a flattened face, shortened height, and almond-shaped eyes, those with Mosaicism Down Syndrome may have less prominent facial differences. 

As for the physical and mental challenges you can expect if you foster or adopt a child with this condition, these are the most common side effects:

• Reduced attention span
• Impulsivity
• Delayed speech and motor skills
• Poor muscle tone, also known as Hypotonia
• Hypothyroidism
• Proclivity to colds
• Recurrent ear infections
• Respiratory issues
• Weight management difficulties
• Intellectual disabilities
• A higher risk of developing Leukemia

In addition to these challenges, many children with Down Syndrome are born with congenital heart defects. While this sounds scary – and though it definitely can be – many of these cases are corrected in infancy and do not lead to lifelong complications. The same can be said for all of the conditions listed above, as with the proper supportive care, there are ways to effectively manage each side effect or risk so your child lives a healthy and fulfilling life.

Remember, plenty of people with Down Syndrome have gone on to experience amazing success, including Madeline Stuart (model), Pablo Pineda (actor and teacher), and Isabella Springmuhl Tejada (fashion designer). The notion that a child with Down Syndrome is bound by their condition is another myth worth dispelling! 

Education and Awareness Efforts

Though you may be interested in solely fostering or adopting a child with Down Syndrome, prospective parents should be made aware of the possibility of a child being born with this condition at every step throughout the adoption process. 

Though it is usually detected in 80-90% of all prenatal screenings, false readings do still occur. At other times, the condition may just go unnoticed. Furthermore, those born with Mosaicism Down Syndrome may not show any physical characteristics of the condition, surprising adoptive parents later on down the line when they start showing other symptoms. 

These possibilities highlight the great importance of Down Syndrome education and awareness. The more information prospective parents have, and by proxy, those around them have, the less stigma there is and the more inclusive the child’s environment can become. 

While the statistic referenced earlier shows how much progress has been made in this area, it still has a long way to go. Fortunately, there are many ways communities can go about educating the public, from attending school board meetings to holding presentations in classrooms, acknowledging and celebrating Down Syndrome Awareness Day, and even throwing and/or donating to local initiatives. 

For example, there was a Benefit Concert recently held in Bay City, Texas on Saturday, July 20th that directly benefited the National Down Syndrome Adoption Network. This event isn’t isolated! There’s the Step Up for Down Syndrome 5K in Forth Worth, Texas on October 19th, and the 2024 Dallas Buddy Walk on October 20th. Each of these events benefits the Down Syndrome Partnership of North Texas and the Down Syndrome Guild of Dallas.

Events like this publicize Down Syndrome adoption, its benefits, and most importantly, what kind of resources and awareness are still needed to end the stigma. 

Building Inclusive Communities

Little changes like using inclusive language and holding events that bring awareness can help end the negative stigma around Down Syndrome while also helping to create an inclusive environment. As the International Mosaic Down Syndrome Association points out, “…children with Down Syndrome develop better-spoken language and make better academic progress, particularly with reading, when taught in fully inclusive classrooms with typically developing peers of the same age.” Though this is referencing school, the concept applies to every aspect of raising a child with Down Syndrome. 

As mentioned above, adoption and foster care agencies have a responsibility to let prospective parents know of the possibility that the birth mother they are matched with will deliver a baby with Down Syndrome. 

Fortunately, there is a lot of education on the topic of Down Syndrome, including adoption, out there for prospective parents. Here are some of those available resources: 

• National Council for Adoption
• Nemours Kids Health
• BUDS – Better Understanding of Down Syndrome
• Down Syndrome Association of South Texas
• Down Syndrome Association of Central Texas
• Heart of Texas Down Syndrome Network
• Down Syndrome Education International
• National Down Syndrome Adoption Network
• National Down Syndrome Congress

The National Down Syndrome Adoption Network, for example, has a guide for new and expectant parents so they can learn more about making an adoption plan and what to expect if the birth mother recently received a Down Syndrome diagnosis for her baby. 

The National Down Syndrome Congress also has a new and expectant parents guide, along with resources that offer invaluable insight into parenting a child with Down Syndrome, such as the importance of using the correct terminology and person-first language – e.g. referring to someone with the condition as having Down Syndrome instead of prefixing it with the word “suffering from.” 

Foster care and adoption agencies aren’t excluded from this education, either. The National Adoption Competency Mental Health Training Initiative, available from the Center of Adoption Support and Education, can help adoption professionals provide support to children in the system and improve their outcomes.

Why These Inclusive Communities Are Important For Down Syndrome Families

From an educational standpoint, as mentioned above, inclusion is important for many reasons, including helping your child with Down Syndrome sharpen their language skills, develop positive, peer-supported relationships, and foster stronger cognitive and social development. 

But, from a human angle, inclusion is important because children with Down Syndrome – and their parents – deserve to belong. While living with Down Syndrome presents its own unique set of challenges, the same applies to parents who may feel isolated from their friends if they’re unable to relate. By bringing awareness to Down Syndrome and creating an inclusive environment, parents have people to turn to for support and advice. This, in turn, benefits the whole family. 

In Conclusion….

Though so much progress has been made concerning Down Syndrome adoption, the condition still carries a stigma because there is a lot of misinformation out there. This misinformation can lead members of society to think that someone with Down Syndrome doesn’t possess the same capabilities as those around them or can’t understand what’s happening when neither of those myths is true. 

Bringing awareness, whether through local events, social media, or via resources like the ones mentioned above, not only helps to create inclusion for those with Down Syndrome but can inform you on how to move forward with adoption. 

If you’re interested in learning more, the dedicated foster and adoption experts at Therapeutic Family Life can help. Whether you’re in the early stages and just considering or have a plan and are ready to start the process, you won’t be alone at any stage of the process. Contact us today and experience the beauty and reward that comes from adopting a deserving child with Down Syndrome.