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The Blessing of Adopting a Child with Down Syndrome

 I have been asked recently to share about my experience in adopting children with Down syndrome.My hope is that with this post, I can share my heart, as well as give some practical insight into what this journey has been like for me and for our family.

Adopting a child with Down syndrome was not something that I had dreamed of all my life or had even been contemplating when we began our adoption journey.  It came at me out of the blue one day as I was celebrating with my brother in law and sister in law, Derek and Renee Loux, as they committed to adopting three precious children from Eastern Europe. I was simply on the phone with Renee, and she was talking me through the Reece’s Rainbow website to show me the photos of the three boys they were planning to adopt. At the last moment, she said, “Oh Trace, scroll down to the bottom and look at the photo of the little blonde boy with Down syndrome. I would bring him home too, but Derek said, ‘Only three, Renee!'”.

I scrolled down to the bottom of the page and my eyes landed on the photo of the most beautiful little boy in the world, and I fell in love. From this day on I will always believe in love at first sight. In the deepest part of my heart, I knew that this was my son, and that I would move mountains to bring him into my home and call him my own. With in seconds, I was on the phone with my husband, who came home to check on his crazy wife. My children were in the background asking, “When can we go get him, Mom?”

I didn’t plan this. God did. He knew from before time began that this little blonde-haired, hazel-eyed boy would be my son, and He caused our stories to collide.

Aiden was 3 at the time we adopted him. Our first months/year home with him were filled with so many doctor’s appointments that I eventually lost count. Every specialist under the sun: Cardiology, Infectious Disease, our regular Pediatrician, The Down Syndrome Clinic, Ophthalmology, Dental Clinic, Endocrinology, the list goes on.  We had him evaluated through the school district for educational services, physical therapy, occupational therapy, and speech therapy.

I’ve been asked what I expected and what took me by surprise:

I expected to love this child.

I expected him to have developmental delays and possible medical issues.

I expected him to have fear and anger because of a painful past.

I did not expect to be admitted to the hospital within months for a lung biopsy because of a positive TB test, or that he would eat an orange crayon in the dental clinic waiting room, making his exam impossible.

I did not expect to clean up the most horrible poopy messes on the planet from his hands, the walls, and crib rails.

I did not expect that one child could bring so much joy and delight to our family!

And then 2 years later we felt prompted to renew our home study again, this time knowing that we would pursue a domestic adoption of a child with Down syndrome. 

We were matched with a birth mom carrying a little boy with Down syndrome. Because of late pre-natal care and diagnosis, we were did not know whether he would have a heart defect or now, but we were prepared to walk through that if needed. We prepared to welcome Mattie into our home the best way we knew how.

Little did we know…

I expected to love this child.

I expected to love this child.

I expected to love this child.

And I knew that we would give him every thing he needed to have the best life possible. I was grateful that we lived near such an amazing medical facility and that we had a wonderful Down Syndrome Guild in our community. I felt ready.

I did not expect to spend the first 11 months of my son’s life in the hospital watching him face life threatening illness, four surgeries (Two open heart surgeries, feeding tube placement, and a tracheostomy).  Some of my posts on this journey: “Fix It”, “Love and Machine”,  and “Love Heals.”

I did not expect to take home my child on a ventilator needing the support of skilled nursing in order to care for him at home.

I did not expect that one child could change my life, show me how weak and how strong I really am, and bring more joy and love than I could have ever imagined.

Practical tips and things to consider when planning to adopt a child with Down syndrome:

1. Be Prepared: If you are considering the adoption of a baby still in the womb, you will need to be prepared for ANYTHING, because there are a lot of unknowns! Heart defects are common with 40-60% of all children with Down syndrome. These defects can often require surgical correction. Some are detected through ultrasound and some are not. Children with Down syndrome can also face a number of other medical issues: thyroid issues, feeding issues, vision issues, etc… READ HERE FOR A SUMMARY, Get a basic understanding of the diagnosis and read up on  the  FACTS! 

2. Educate Yourselves: Read and get connected! The National Association for Down Syndrome, and The National Association for Child Development are great resources; as well as your local Down Syndrome Guild- here’s a link to ours in Kansas City,  as a great example! Read books like ones that are on this TOP 10 LIST. I’m currently reading “Down Syndrome Parenting 101,” so far so good!

3. Insurance: Find out what coverage your insurance has, but also keep in mind that your child will most likely qualify for medicaid due to the diagnosis of Down syndrome. A child being adopted domestically with Down syndrome may also qualify for adoption subsidy to help offset other costs related to their care.

4. Preparing for the Future: A child with Down syndrome can achieve a great deal of independence, but it goes without saying that he/she will need extra support even into the adult years. This is another great reason to tap into your local Down Syndrome Guild-  so that you can meet and talk with parents of older children/adults with Ds and glean from their wisdom and years of experience. Think about who will care for your child if you and your spouse should pass away, possibly a family member, an older sibling, or a close family friend. Here’s a link with some great advice on GUARDIANSHIP, and a link on ESTATE PLANNING,

5. Educating Your Child: You will need to look at all of the resources available to educate your child. Early Intervention programs like “First Steps” provide in home training and therapy in areas of Speech, Physical, and Occupational Therapy. Once a child reaches the age of three, those services are available through the local public school system. We were blessed that our children with special needs were able to attend an amazing public pre-school where they received all of their special services. Your child will have an IEP (Individual Education Plan) through the local school district. If you choose not to utilize public school and opt for Christian school or home schooling, you should still be able to have your child evaluated and receive special services through the school district even if not attending full time. Get educated yourselves and find out what your options are. You are your child’s best advocate! (A quick Google search will show you all of the great resources on Homeschooling Your Child with Down Sydrome.)

6. Family and Siblings: Our children with Down syndrome have been fully accepted into our family. The children already in our home have been amazing. They have learned so much, grown, and become stronger, better people because of the impact their siblings with special needs have had on their life. We have been blessed with an incredibly supportive extended family, but there are times when you may have to educate and prepare your family for welcoming a child with Down syndrome.

Here are a few additional websites that might be helpful:

Down Syndrome Health Issues

Down Syndrome Education International

National Down Syndrome Congress

National Down Syndrome Society 

More Books and Videos

Praying that this little bit of personal information has been helpful, if you are interested in learning more about adopting a child with Down syndrome, or any other special needs, please email me about our Special Needs Adoption Program, tracie@christianadoptionconsultants.com 

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2 thoughts on “The Blessing of Adopting a Child with Down Syndrome

  1. Tracie- LOVE THIS POST!!! God works in sooo many amazing ways. Those things we did not expect HE uses. Even when it seems really really really hard. Thank you for this post.

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