What I Learned: Raising a Special Needs Third Culture Kid
This post is part of a series on learning from diversity called What I Learned. To contribute, contact Rachel (there is one more scheduled post coming up and then, unless I hear from you, the series will close, but if you have an essay in the future that you feel might be a good fit, feel free to contact me).
Today’s What I Learned post comes from MaDonna Maurer (who wrote about being married to a TCK for the Painting Pictures series), writing about raising a daughter with mental and physical disabilities in Taiwan. Can I just say how much I love this post?
Diversity seems to flow easily inside the doors of an international school. Many have called these walled-establishments little United Nations. It’s no wonder they have this description. Once you step through the doors you see and hear the various cultures that make up our world. The expat community lends itself to diversity, but once you exit what I will call the “expat bubble” you’ll discover that the only diversity you may find is yourself.
I have found this to be true here in Taiwan. Among the expat community I know how to float in and out of conversations. I understand the lingo, the hardships, and the coming and goings of the community. Learning how to function in the community of the culture you are living in can take some time, especially if you have a child with special needs.
My daughter was diagnosed when she was ten-months old with Cri-du-Chat Syndrome, a genetic disorder that causes mental and physical disabilities. Along with the diagnosis, she was given a feeding tube – overnight we became a different family. We were already living in mainland China, and amazingly we were encouraged by all the health professionals and family to return. After a few years we moved to Taipei where she would have better access to therapy. Moving to Taipei, though still took time to adjust, was a smoother transition just because of the healthcare system.
My daughter is ten-years old now and no longer has a feeding tube. We still travel between Taiwan and Germany or Taiwan and the US, depending on the year. In these ten years I have learned a few things about traveling with a child with special needs and about life in general.
1. I am not alone. First, we are not the only people that live overseas with a child with special needs. There are others. Second, which isn’t too surprising, but since the diagnosis it seems that I just “see” others with special needs. I know they were there before, but I believe that God has made me more aware – especially here in Asia where disability is more often hidden.
2. Give Grace I know how easy it is to be offended by certain words and odd looks. I know how angry I can get by comments made about someone with special needs. I can become that protective mama bear ready to strike out at anyone – but God has been teaching me (notice, I’m still learning!) to give grace. Sometimes that is a silent prayer, other times it is quietly in love telling the person what their words mean. I’ve found that most have no clue and are truly apologetic for it. I’ve also found that some questions are just purely that: a question. They just want to know, but didn’t phrase it quite right (sometimes this is a culture-clash). I’m learning to answer with grace. Do I get it right every time? No, but I’m in the process of it…
3. The beauty of a smile Having someone say hello to my daughter and to talk to her, not me, is a HUGE gift. I’ve come to realize that people with special needs want to be talked to directly – even if they can’t respond back. When we stop and speak (just say Hi!) to someone with special needs we recognize that they are human – not just a statue that takes up space. And the impact you have on the parent by that small act of kindness speaks volumes. I know from experience.
4. Churches are empty The most noticeable issue I see in most churches is what I don’t see. I don’t see too many people with special needs in church. This is something I’ve seen in every country I’ve visited. Why is this? I don’t have a researched answer, but from my experience it seems that people do not know what to do with my family. They want to help, but not sure how. They feel unqualified to teach a child with special needs. The congregation may feel that the person is too disruptive…read #3 again, they are fearfully and wonderfully made, too (Ps. 139:14)!
Diversity is so much more than the color of ones skin or the various cultures of the world. As I’m living this expat life, I’m learning more about what that means as a family with disabilities. I could easily say that my daughter is teaching me, but really it is God teaching me through her about the special needs community and my response to his diverse world.
You can read more from MaDonna Maurer on her blog www.raisingtcks.com and find her on Twitter