March 21st is World Down Syndrome Day. If you haven’t already, you should soon start seeing “lots of socks” and related promos all over social media this week. In addition to raising awareness of the needs of families impacted by Down syndrome, we want to use this platform to educate and prepare families considering adopting or fostering a child with Down syndrome. This guide can help you navigate the resources and expert-based information as you consider options and make decisions for your family.
Researching to Understand Down Syndrome
As with most special needs adoptions, we recommend you research first. However, the internet holds an enormous amount of information on Down syndrome. It can be downright overwhelming to start your research by merely typing “Adoption, Down Syndrome.” To help you alleviate an inundation of misinformation or sketchy advice, we’ve curated some of the most helpful resources we could find from experts and reliable organizations.
What is Down Syndrome?
Down syndrome is a life-long condition with extra genetic material on the 21st chromosome. The additional material occurs at conception. There is no cure, as Down syndrome is not a disease or a congenital disability. It’s a genetic condition or occurrence of that extra genetic arrangement. Three chromosomal variations are associated with Down Syndrome: Trisomy 21 (the most common), Translocation Down Syndrome, and Mosaic Down Syndrome.
What are the impacts of Down Syndrome?
The chromosomal arrangements of Down Syndrome result in a wide range of physical features and developmental impacts, including but not limited to the following:
- Cognitive delays
- Delayed language development
- Flattened face or nose bridge
- Upward slant of eyes
- Short neck, small ears, hands, and feet
- Palmar crease (single line across the palm)
- Small pinky finger (also often curves in toward thumb)
- Shorter stature than peers
- Loose joints and “floppy” muscle tone
People with Down syndrome also might be at higher risk for a variety of medical issues across their life span, such as:
- Ear, nose, and throat
Here are several resources from which to learn more:
- National Down Syndrome Adoption Network: What is Down Syndrome?
- National Down Syndrome Society: Facts, Myths, & Truths About Down Syndrome
- National Down Syndrome Congress: What is Down Syndrome?
- World Down Syndrome Day: What is Down Syndrome?
- Global Down Syndrome Foundation: What is Down Syndrome? and Ages & Stages
- Down Syndrome Program at Boston Children’s Hospital
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Preparing for a Child with Down Syndrome
Just as you would when you are preparing to bring home any adopted child, you should consider the support networks around you and your family.
Practical Parent Support
For many adoptive parents, a reliable community of friends, family, and other adoptive parents can be the keystone to a successful, strong family. It’s no different when you are considering a child with Down syndrome. Surround yourself with other families raising kids with Down syndrome or other special needs. Create a circle you can count on for babysitting, yard work, grocery pick-ups, play dates, and adult conversation.
Community Resources Support
Before pursuing the adoption of a child with Down syndrome, you must investigate the resources in your area that provide support, education, and medical care. Take some time to research your local children’s hospital, school district, county services, and early intervention specialists. Ask yourself a couple of questions:
- Can I access local medical care that understands and has extensive experience with the health issues common to Down syndrome?
- Do I have adequate health care insurance to cover the needs of a child with Down syndrome?
- Does my company offer guidance or resources for understanding and improving my coverage?
- Where can I learn more about the life-long care needs and make provisions for my child should they need them?
- Does our local county (or province or state) offer services that a child with Down syndrome needs to learn, grow, and thrive?
- Is there a parent group for families impacted by Down syndrome in my town or school district?
- Does our community have the resources to welcome children with Down syndrome in extracurricular activities and events? Have other parents experienced these clubs or teams yet?
- What resources exist in my community to help me prepare my child for adulthood? Are there job training programs and independent living communities to scaffold my child?
In addition to these questions, consider parents in your community already raising a child with Down syndrome. Are any of them able or willing to talk to you about their everyday experiences and even act as a mentor while you prepare? If you cannot find a mentor parent, this mom’s story might help you feel more prepared for adopting a child with Down syndrome.
Things to Consider During the Adoption Process
Whether you pursue an international, infant, or foster adoption, if you want to adopt a child with Down syndrome, do your homework on reliable agencies. Look for an agency with robust programs for the adoption process. If you can find one with experience facilitating adoptions of kids with Down syndrome, that’s even better!
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Talk to adoption agencies about Down syndrome.
Inquire to your agency contacts about their post-adoption support system and recommended resources for pre-adoption education and support once you are home with the child. As you prepare for your home study, mention your interest in a child with Down syndrome.
Keep learning about the educational needs and possible health issues associated with Down syndrome. In addition, learn all you can about the impacts of trauma on a child’s development. It’s worth asking the agency for other families they’ve served who have also adopted a child with Down syndrome. You might find a mentor or friend in them!
Seek a medical file review.
Find out what medical professionals they recommend for file reviews and consider contacting them for a consultation. While you wait for that consult, review their website and the resources they offer. Prepare your questions in advance.
Once you receive a specific child’s file, schedule a comprehensive file review. Here are a few resources for adoption file reviews:
- Adoption Medicine Clinic at the University of Minnesota
- International Adoption Health Program at the Children’s Hospital of Philadelphia (they do see families from all types of adoption)
- Center for Adoption Medicine at the University of Washington
Adopting a Child with Down Syndrome
Preparing to adopt a child with Down syndrome isn’t terribly different from adopting a child with other health issues. You can do all the preparations and pre-adoptive training available. Yet, you will still have days where you don’t feel like you know what you are doing. That’s parenthood, right? The new normal might feel rocky or uncertain, as with any changes your family will experience. However, the changes won’t likely all be challenging. There is tremendous joy and fulfillment ahead of you, too.
Did you adopt a child with Down Syndrome? What resources helped your preparations? Share them in the comments!
Image Credits: Kampus Production; RODNAE Productions; Amel Uzunovic