When my parents decided to adopt a child with Down syndrome, I am afraid to admit I was quite unsure. At that time I was 15 years old and didn’t know anyone with Down syndrome, at least not well. That was 11 years ago. Today, I have 5 siblings with Down syndrome and they bring the most joy and life to our family. A few of us are married and have children, so when we all get together our crew totals up to 15 people (and still growing). I often refer to our time together (which is almost daily) as blissful chaos.
At Arrow + Root, we have found ourselves working with many families who are pursuing or are open to a child with special needs. Through our conversations with these hopeful adoptive families, many ask us questions which seem to often be similar to one another. Because of this, we wanted to tackle these topics here. In order to bring you authentic and raw answers, we asked adoptive parents who are parenting children with special needs if they would be willing to answer these questions, and to our delight, they said YES! We hope you find this information helpful in laying the foundation to your adoption journey and considering a little one with special needs.
Some of the most common questions and answers:
Q: How "open" is your open adoption? Visits, phone calls, emails, etc.?
Contributor 1: We have three adoptions that are considered to be open adoptions. Each adoption has been different in the degree of communication and the style. For our son, we had visits from the birth grandparents and plenty of emails and phone calls between us and his birth parents. For both of our daughters we have had visits, a vacation, emails, phone calls and lots of pictures.
Contributor 2: Our adoption is unique, as bio parents live in China. We message each other every few days and Skype weekly.
Contributor 3: We have a very open adoption with our daughter. We have visits yearly and also send emails and texts in between. Now that “L” is in school, we send school pictures and ask for her to make a second Christmas and Mother’s Day gift that we send to birth mom.
Contributor 4: We talk on the phone and FaceTime “S’s” grandparents multiple times a week and we have visits with them, or vacation with them about 4 weeks each year. We do not have contact with her birth mom due to active drug use.
Contributor 5: For “B” we communicate through photos and letters. The agency is where this all gets sent. Next, “A” gets photos, letters, and texts directly to and from birth family. Lastly, “M” has visits, photos and texts directly to and from the birth family.
Contributor 6: Our adoption is as open as it can, but her birth parents live across the world. We text and exchange pictures on "What's App" weekly for sure, sometimes multiple times a week and they plan to visit once a year.
Q: Do you feel open adoption is different for a child with special needs?
Contributor 1: I do not feel that open adoption is different for a child with special needs. I think it is different for every child in how it plays out, whether they have special needs or not.
Contributor 2: I’m grateful for open adoption, but I do think it will be different for our kids with special needs. But just like everything else, I think our girls will understand, in their own way, in their own time. For now, we explain that “A” was in Mama “C’s” tummy and talk a lot about how families are different and how we all love each other. It’ll be interesting when Mama “C” comes to stay with us for a few months. She asks often if “A” remembers her and I tell her that “A” knows we’re family.
Contributor 3: I don’t think it’s ever a bad thing to have extra people to love a child, with or without special needs. When the situation is safe for the child, I think an open adoption is a wonderful way to connect to a large piece of the child’s background.
Contributor 4: I’m not exactly sure. I think as “S” gets older it may be harder for her to “understand” her story and all the people in it... but I think both typical kids and kids with special needs deserve the chance to know their birth family.
Q: Has the relationship with birth parents been confusing for your child? What is their level of understanding?
Contributor 1: For our son, he was not aware of who his birth parents were before he passed away at 26 months old. One of our daughters actually remembered her birth mom at an early visit and then we went on vacation with extended family and she remembered them. I don’t think it was confusing because we all embraced each other.
Contributor 2: Our daughter is 3 and has Down syndrome (plus significant medical complications). She recognizes Mama “C”, but the Skype calls are more for mama. I don’t know what she will eventually understand. At this time, she’s much like a 9-12 month old (developmentally). However, our big kids (including our 7 yr old with Down syndrome), view Mama “C” as family. They love chatting with her and sending her pics. I don’t think the relationship is confusing. I think it’s similar to our other extended family relationships. We video chat with them often, we send videos and pics, and try to stay updated on each other’s lives even though we live far away.
Contributor 3: We only see the birth parents once a year. They send gifts throughout the year and we text from time to time. The relationship isn’t really confusing for our daughter, as she really has no level of understanding of who they are or what has happened. We have never hidden the fact that she is adopted from her, but she just has NO level of understanding of what that even means at this time. I imagine one day this might be rather confusing for our daughter, but we plan to just remain completely open and honest with her as we have been.
Contributor 4: So far contact has not been confusing... the grandparents are just another set of grandparents in our kids lives (they have taken our biological son under as one of their grand kiddos too). I think if and when the birth mom gets clean and we start contact with her, that it may get more confusing. We will cross that bridge when it’s time.
Contributor 5: Our youngest is the only child whose birth family desires visits and he is only 1, so at this time, he has very little understanding of who they are. We hope this changes and evolves over time!
Contributor 6: Our child’s birth mom has some expectations of the child knowing her when she comes to visit and feels like that bond between them will still be there. It's hard to know how the child will understand the relationship. Only time will tell!
Contributor 7: My son was adopted at 6 months old and we’ve had an open relationship with his bio mom. I started to notice after he would spend time with her that he would be completely withdrawn from my husband and I. No eye contact, no interaction or smiling (he was less than a year old, so still an infant). When his developmental delays and SPD became more apparent and he was officially diagnosed, we started a long journey of therapies from OT to SP and even visiting a psychiatrist. It was extremely difficult to establish a bond with him and when bio mom was around he was a different child. When they would separate he would be set back in his progress for weeks. He was nonverbal until almost 5 years old, and it wasn’t until we agreed to put up boundaries between him and bio mom that we started seeing consistent progress. It’s been very painful for everyone involved, and we all agreed we want what is best for him. He’s finally starting to show progress and feel safe with us and his other siblings, but it’s been a lot of work to get us here.
Communication was the most important thing through the whole process. We brought his bio mom to a counseling session with our family therapist so that she could hear “H’s” needs from a professional perspective. This helped us come to a mutual decision. “H” would not spend time alone with her or go on outings without us present. We cut back our time, but only slightly. We spent the time together as a family instead. This has helped. She ended up withdrawing from us quite a bit in the end (to take care of some personal issues). Now we only hear from her occasionally, but we have the door open to continue conversations!
We hope you found these stories helpful. Please remember that every story is different, whether it’s of a typical child or a child with special needs. Hearing other people’s stories help to make us all better as we lean in and expand our knowledge on how to communicate with birth families, our children and meeting the needs of the full triad! Continue seeking out stories and educating yourself, even after placement!
Thank you for those who contributed and shared their stories with us! When we learn from each other, we become better on all sides of the adoption triad.