Labeling

Before Will was born, we determined not to share the name of his rare syndrome with others (except for medical professionals who need to know, of course) because we didn't want him labeled. We also wanted to make sure that information about him came from us - not from websites that are not necessairly written with sensitivity or even medical fact. We've stuck by this decision and we believe it has been a good decision for our family.

But I can't escape labels. And, I struggle with whether or not to label and how to do so regarding Will.

He doesn't really fit into the category of "special needs" as the term, "special," implies that he has intellectual differences. I've also read that referring to a child as "special" for physical qualities that are beyond their control can simply lead to overinflated egos. And, eventually, he will deal with challenges and being told he is simply "special" because of his body doesn't really benefit him in those challenges. I want Will to believe he is special not because of his body and how he was born but because he was designed by God and because he has special gifts & talents which hopefully he will choose to use for good.

I recently read the term, "special purposes," which I have a love/hate relationship with. Let me explain. For 2 years, we have been told by well meaning people that God must have a special purpose for Will. We try to give them grace & hold our tongues because, well... we just do. But, inside, we're often screaming - "I don't want "special!" If Will wants to drive a garbage truck or be a lawyer or a teacher or a dad or anything else that is ordinary - GREAT! Just because he was born with limb differences, why should he have to be something "special?" Sheesh - doesn't the kid have enough challenges just being ordinary? I guess we've always believed that any of our children will have a special purpose- that Will & any future kids will do something great & special - regardless of whatever it is they do. I don't like the idea of singling Will out for an "extra special" purpose. But then, sometimes I like that phrase in that it doesn't sound as negative as other phrases. And, just as I believe is true for all kids, he does have a special purpose on this earth. However, I don't think this is a phrase I can really use in describing Will - no one would understand & I'd just have to explain his limb differences anyway.

Many people still use the term, "handicapped" ("h" word in our house) & "disabled" ("d" word in our house!) I know of older kids & adults with limb differences who use the disabled term. It doesn't bother them so I know it shouldn't bother me. But it does. I feel like it puts limits on Will or says that they are things he will not be able to do. I believe he is "able." Maybe I'm just too sensitive still or maybe it's a pride thing about using these terms, I don't know.

I really hate the term "birth defect." I hate it because it implies God made a mistake - & He doesn't. Nothing is "wrong" with Will. I read something recently written by a man with limb differences who basically said that using that term or saying, "I was born this way," puts the blame on his mother's womb - which he didn't like. That really struck something in me. Perhaps it is my own feelings of inadequacy as Will's mom or my fear of others juding me & & my pregnancy that I really don't like the term, "birth defect."

I most often use the phrase, "limb differences" or "hand & feet differences." But, let's be honest, no one has a clue what I'm talking about. I almost always have to elaborate a little more. I've found that in interviewing preschool directors, I take pictures of Will's hands, feet, (and cute face because it feels weird to just show closeups of his hands & feet) so that I can better describe him to the preschool staff and get a feel for how comfortable they are about working with him & how creative they are willing to be.

I would love to never have use of a label for Will but the reality is that I do. When discussing him with therapists, potential preschools & teachers, airport security agents, etc, there are times when I simply need a way to describe him in order to ask my question effectively.

And sometimes, I don't. It's a sick little game I have but sometimes I won't tell someone anything about Will just to watch their reaction. It's interesting to see how people react differently - how long it takes them to notice, how much they notice, if they change their position around him or refuse to touch him, or touch to much, etc.
But, usually, I do have to describe Will in order to ask a question or something.

So, any ideas? Anybody ever heard a term that you thought was great- positive & succint & understandable?