In 1988 we adopted a beautiful special needs baby from Korea. She was extremely small and very “soft”. At the time we knew she had special needs, but it wasn’t until she was 6 yrs. old that we heard the words “Prader-Willi Syndrome”. And it wasn’t until Hana was 10 yrs. old that we were able to force the Insurance to pay for growth hormones. Needless to say early treatment and intervention were not a part of Hana’s life. Learning how to best work with Hana was difficult because it all came so late in her life. We, as a family, worked very hard to make up for lost time by implementing positive behavior support plans, limiting the food and just trying to stay consistent. The year she went on growth hormone she grew 6” and develop some muscle mass. At the time I thought life was always going to be hard for her and for us.
Hana is now 27 yrs. old and has turned into a beautiful, funny, smart young woman. This summer we decided to take her back to Korea so she could see where she was from and to experience looking like everyone else. The good part is that we have a friend who is teaching English as a second language who we would stay part-time with. We have always done family vacations with Hana and her brothers, but usually it was to one location and there were four of us keeping tabs on Hana. So, I wasn’t sure how things would work out traveling together in a country that was far out of our comfort zone and with an adult with PWS. But we did it and it turned out that we had the opportunity to see Hana in a different light. She was a great traveler! We traveled by bus, train and car, and we stayed in Korean hotels and hostels along with staying with our friend. We ate Korean food, visited the countryside as well as a few bigger cities and all through this we watched Hana take it all in and blossom. There were no behaviors and the food was tasty as well as healthy, cheap and limited. I think we all actually lost a few pounds. Hana definitely rose to the occasion. With the language barrier people didn’t notice so much the lack of social skills that Hana lacks, she still said hello to strangers, and tried to ask them questions, wanted to order more food, but no one seemed to mind. And those that did understand her were kind and understanding.
I think one of the biggest things I came away with from the vacation was that our children continue to develop and to grow, even in small ways. For me it was a great opportunity to see Hana as an adult who could and did handle change. She is not the same little girl I have a tendency to sometimes see her as. As for Hana, one of the many things she was able to take away from the trip is that if you now ask her if she is short, she will say, ‘No, I’m Korean.” That’s my girl!
By Kate Beaver – Family Support Counselor PWSA (USA)