A conversation recently came up among some of my friends who have adopted kiddos with special needs. Many of us are able to have some form of communication with birth parents or older biological siblings of our children (h/t to Google translate!) One of my friends wondered how candid we should be about the medical and developmental condition of our children. It was something I hadn’t given much thought. I’m generally optimistic and look at the positives and the progress made whenever Paul’s birthmother, Galina, asks me how he is doing. I always have good things to report. “Paul has gotten so much better at eating.” “Paul likes to play ball with his brother.” “Paul is walking now and getting into mischief!”
The thing is, we have been in touch several times over the past 2.5 years, and nearly every time she asks what the doctors say about his development. Does he lag behind other children his age?
In my head, I think I thought this was a no-brainer question. He has Down Syndrome- yes, he is behind his peers. Yes, he has to work 100x as hard to master the same skill as a typical 3 yr old, or even a typical 1 yr old in some cases. But the truth is, Galina doesn’t know much about Down Syndrome. I remember at first when she thought it was her fault that he had it. She may think that he will grow out of it. She doesn’t know it’s chromosomal; most people in Ukraine don’t. Many doctors there are just as uneducated about it, which is why new mothers are often encouraged/pressured to put their child with Down Syndrome into the orphanages and never look back.
But back to her unrelenting question- How is his development? It occurred to me that I ought to be more candid with her about how Paul is doing. Don’t get me wrong- he’s progressing well and I am so proud of him! I am naturally so positive to her about how he is doing because I’m generally very happy with what he’s accomplished. At the same time, skills come slowly and with lots of labor. He is still behind his peers, even his peers with Down Syndrome. At 3.5, he communicates like a 1yr old, he struggles climbing stairs, he isn’t good at feeding himself, can’t drink from a straw and still drinks from a bottle, lacks many fine motor skills that kids much younger have mastered, doesn’t know how to play appropriately with many toys. And Galina deserves to know all of this. She should know because I don’t want her to think she “gave up” a child who “grew out” of Down Syndrome in a couple of years. I don’t want her to feel regret, like she lost the only opportunity she had to raise her child for no reason.
Of course, I prefer to see children in their biological families. I would have preferred that Paul not be in that orphanage for even a day. But, he was there for 15 months, Galina made a choice, and every day she lives with it. And I can tell she thinks about it, and about Paul. Maybe it will give her some peace to know that, while Paul is healthy now and doing well, he still demands a lot of extra time, and therapy, and patience, and practice to continue to learn new things. And honestly, a lot of his needs wouldn’t have been met in Ukraine. It’s getting better, but it is nowhere near how we are in the United States.
I remember, years ago, being prepared by Catholic Social Services for domestic open adoption. A big theme that was pushed was the need for candor- with your spouse, social worker, and yes, with birthparents. For some reason, in my mind, I lost the idea of candor with a birthparent when adopting from another country. I suppose I never thought I’d be in touch with Paul’s birthmom, so that’s part of it. And I when I was in touch with her, I wanted her to feel confident that Paul was being well taken care of, since she wasn’t going to be able to visit with him, like the type of open adoption we originally planned for. But it’s good for her to know his struggles too, for her own sake, since Paul was an unexpected pregnancy, but a very desired one. It was only when he was diagnosed with Down Syndrome that it all fell apart. I hope that having a bit more of the story, she will feel an increased peace and comfort with the decision she made 3.5 years ago.