Thursday, July 10, 2014

Ending the freak show mentality

I have been doing some research into resources for families with children with facial differences and I have discovered two things. First, the reasons for having or developing a facial difference are many and varied. It is such an unique problem for each individual. There are some syndromes which are more common than others and present with pretty much the same issues, but common is a relative word and for the most part these syndromes are fairly rare.

The second thing I've discovered is that it is something that is very seldom talked about... at least based on my cursory search. If you Google blogs about raising a child with cerebral palsy or cleft lip and palate or spina bifida or limb differences, you immediately get dozens of helpful articles and blogs by parents travelling this road with their children. If you Google blogs about raising a child with a facial deformity, well you get the modern version of the circus sideshow. There's not a lot that's helpful or supportive and an awful lot of things like "25 most hideous faces". And in the first two pages you get my blog. Now, in the great world of Google analytics, the fact that my lowly blog makes it onto the second page of results for such a broad search topic tells me that there's just not a lot out there.

I did find a couple of single posts or articles, mainly about the experience of various mothers when their child was born and they were confronted with their child's differences. But others' experiences with the implications for day-to-day life just don't seem to be there. And when you add adoption into the equation, well, there seems to be even less. It seems the best we can do is the fictional account found in the book Wonder, which while good and opens up a lot of discussion, is not a personal account. 

I firmly believe that talking about hard issues, not hiding in shame, and normalizing life for anyone who looks different is the best way to deal with these hard things. It is one reason why I blog. When we adopted H., I don't think we realized how far out of the norm we were moving. I want my child to be comfortable with who she is. I don't want her to think that how she looks is something to be hidden or embarrassed by. At the same time, I also don't think it is wrong to pursue options to change her appearance to one that she wants. What is always lurking behind the surface is the tension between these two positions. We need to be able to talk about it. We need to think about these things. What we don't need to do is hide or be surreptitious in our dealings with these issues. 

To this end, I would love to find other parents who are raising children with facial differences. I would especially love to connect adoptive parents together. But I don't know how to find them! So, if anyone knows of a blog or something of that sort to point me to, I would appreciate it.
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I have a new article up:  Taking a Break

7 comments:

Lucy said...

I think your facial reconstructive surgeon would probably know of more people in that category than anyone else would.

Kelly said...

I've frequently seen children listed in China who have facial deformities, but usually I don't know if they get families or if the family blogs. Besides LWB's Yong, the only other one that comes to mind is this family with Holt who adopted a boy with a facial cleft. http://holtinternational.org/blog/2012/10/one-wonderful-family-for-one-amazing-boy/

I enjoy reading all that you have to say on this topic. I linked to your post about adopting a child with a facial deformity on my blog entry about choosing which special needs to be open to.

Kelly said...

I had another thought--children who are burn victims would fall into this category. This is a friend-of-a-friend from facebook: http://letuskneel.blogspot.com/2013/01/kneeling-before-my-god.html

thecurryseven said...

Thanks, Kelly. Those are two good leads. The burn victim angle makes me realize I know another mother whose daughter from China has facial burns, so I'll try contacting her as well.

Lucy, I plan on asking our surgeon (or more specifically his nurses), but Hippa laws don't work in my favor, here.

e

Lucy said...

I think with the surgeon it might be more a case of giving out your contact information and then others could pursue you if they chose. Maybe he would let you leave a card in his office or something like that.

Anonymous said...

You may already be aware of this blog. Dennis is adopted and has a facial deformity. http://smilesandtrials.blogspot.ca/

thecurryseven said...

I didn't know about this blog... thank you!! I've already contacted her.

e

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