Into Sophie’s World: Marginalized

apraxiakids2Interacting with a special needs child is different than interacting with a “typical” child. It can create some discomfort for us, even as grown adults. Special needs children have differences, ones that we often do not understand. But, differences are everywhere in our world, so rather than focus on those things, I think we should focus on giving compassion.

First, we must understand something about Sophie and other children with disabilities. The harsh reality is that they can often be marginalized. In Sophie’s case, because she has never been able to speak, Sophie often ignores speech, somewhat marginalizing herself, understandably. She has lived in a world where everyone around her is constantly talking, but she can’t enter in. She’s always listening to what others are saying, but so much of the speech that she hears isn’t directed to her, so she doesn’t always realize when it is. There is a key difference between listening and hearing what’s said. Sophie hears all of what is said around her, but she doesn’t always listen, because she’s not usually the focus of conversation. Many times people don’t try to further the conversation with her once she doesn’t speak back. I imagine for people who don’t know Sophie, they just assume she’s bashful and let it go. Those who know Sophie don’t give up so easily. And that’s great. But what about the special needs children who aren’t known to us?

Children with evident disabilities are, unfortunately, often used to being marginalized and ignored in public. Think about it. When was the last time you passed a mom in the grocery store and commented “She’s so cute!” about her wheelchair-bound child? On the other hand, how many times have you made that comment about a typical child? We tend not to say anything to the mom with the wheelchair-bound child, because we don’t want to act as if we’re staring or giving unnecessary attention. But, guess what? That mom already knows her daughter is in a wheelchair. Giving attention to her daughter in a positive way isn’t going to do any harm. Silence, gawking, awkward avoidance — those things do harm. Those things make that mom and child feel out of place in a world where they desperately need to experience acceptance and support. I’m sure those who know and love them in their families, circles of friends, neighborhoods, churches, etc, do not do marginalize them (at least I hope so!), but unfortunately, society often does, simply because we don’t know how to handle this “different” child. Although you may be comfortable interacting with Sophie because you’ve known her for a long while, have you ever become part of “society” when around another special needs child who is not known to you? I know that I have. I didn’t know what to do, or what to say, or how to handle that child, even though I have my very own special needs child in my home every day.

When we went to the Fourth of July parade here in town, we marked out turf for watching the parade next to an older couple with their adult daughter. When the daughter tried to speak to me, excitedly announcing that Fairfield Union’s Band was her favorite, I realized that I could not understand a word she was saying. And I didn’t know what to do. I froze. Her dad interpreted her speech, and I gave a polite nod and acknowledgment of her comment to me. My own daughter suffers from a speech impediment, and I didn’t know what to do with this grown child. I became a part of the society that doesn’t know how to handle a disability. I felt awful. In hindsight, I wish that I had asked her father more about her. He spoke to us a couple of times, kindly offering a closer view of the parade for our children. I wish that instead of ignoring his daughter’s clear speech disability that I had just addressed it head-on. Because I’d rather be upfront about Sophie’s condition than have people wondering “what’s wrong with her,” thinking she’s mentally challenged because she can’t speak. See, I’ve accepted what’s “different” about Sophie, so it’s not uncomfortable for me to explain it to others. I don’t constantly go around “explaining” my child to those who are just passing by, for instance, as we walk down the street. However, if they engage us, I’m totally comfortable talking about her diagnosis. I wonder if I would have met a family who knew exactly what I was going through if I had just chosen to engage that day instead of maintaining a comfortable distance. Distance is more comfortable when differences are present. But distance is also shallow and sometimes uncaring.

Children with disabilities are just as much in need of compassion and acceptance from the world around them as are typical children. Perhaps, they need it even more because of their differences. I hope that the next time I find I’m in the presence of a special needs family, that I can engage, rather than distance myself from the discomfort. Jesus has given me compassion abundant for my daughter, so why not extend that to other children who are also in her situation? It might be uncomfortable to reach out to a family with a special needs child, but I believe the connection will be worth it. In my post next week, I will give some practical and (hopefully) helpful tips for engaging with special needs children like Sophie.

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