6 Tips to Consider When Planning to Adopt a Child With Down Syndrome

I was recently asked to share my experience with 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 our family and me.

Adopting a child with Down syndrome was not something I’d 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 on the phone with Renee, and she was talking me through an adoption 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. I fell in love. From that day on, I would always believe in love at first sight. In the deepest part of my heart, I knew this was my son. I would move mountains to bring him into my home and call him my own. Within 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 meet him, Mom?”

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

Aiden was 3 years old when we adopted him. Our first year home with him was filled with so many doctor’s appointments that I eventually lost count of them. We visited every specialized department 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.

At this point, here’s what I expected:

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.

What I did not expect:

I did not expect to be admitted to the hospital within months for a lung biopsy because of a positive tuberculosis 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 his crib rails.

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

Two years later, we felt prompted to renew our home study again. This time, 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 prenatal care and diagnosis, there was a chance he would have a heart defect, but we were prepared to walk through that if needed. We prepared to welcome Mattie into our home the best way we knew how.

I expected to love this child, and I knew we would give him everything 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 community in our area. 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 illnesses, four surgeries (two open heart surgeries, a 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 my child home on a ventilator needing the support of skilled nursing 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’re 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 in children with Down syndrome and can often require surgical correction. Children with Down syndrome can also face a number of other medical issues including thyroid issues, feeding issues and vision issues.

2. Educate yourselves. Read and get connected. The National Association for Down Syndrome and The National Association for Child Development are great resources.

Look into your local Down Syndrome Guild — here’s a link to ours in Kansas City. Read books like the ones on this 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 may qualify for Medicaid because of the Down syndrome diagnosis. A child with Down syndrome who is adopted domestically may also qualify for an 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 or she will need extra support even into the adult years. This is another great reason to meet and talk with parents of older children and adults with Down syndrome. 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 is a site with great advice on guardianship and another about estate planning.

5. Educating your child. You will need to look at all of the resources available to educate your child. Early Intervention programs can provide in-home training and speech, physical and occupational therapy. Once a child reaches age 3, 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 preschool where they received all of their special services. Your child will have an Individual Education Plan through the local school district.

If you choose not to utilize public school and opt for private school or home schooling, your child should still be able to be evaluated and receive special services through the school district, even if he or she is not attending full time.

6. Family and siblings. Our children with Down syndrome have been fully accepted into our family. Our children who were already in our home have been amazing. They have learned so much and have become stronger, better people because of the impact their siblings with special needs have had on their lives. 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.

If this little bit of personal information has been helpful and 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 

This post originally appeared on From the Heart.