Etiquette

I was talking with a friend the other day who suggested the theme for this post.  She was asking me about how to teach her daughter about people with disabilities.  It's something that's always in the back of my mind, but I hadn't ever really thought about the proper way to approach the subject.  Ty and I have always said that we're going to be really open about our experiences and our journey with everyone, but there are still some people out there who may be uncomfortable with how to approach the subject with us.  So, I'd like to share my thoughts, my opinions and my feelings about it.  If there are other parents of SB kids, or other disabilities, you may have other opinions, and I'd love to hear them.  

The first thing that I think of is that our situation is not to be pitied.  There was a commercial here in the Cities for Children's Hospital that shows an elementary-aged girl walking with braces and a walker through her school, and the caption says: Pity - 100% Curable.  How true!!  Leah is one of the happiest, brightest and sweetest babies I have ever met.  She is exactly on track with everything an 18-month old should be doing... except standing and walking.  And who said that was the most important thing anyway?  Yes, she's been through 3 major surgeries, and we have lots more to worry about.  Yes, Ty and I went through a heartbreaking experience when we found out about her condition and we do probably have more to worry about than most parents.  But that doesn't mean anyone should pity our situation.  To be honest, the thing that has me more concerned lately is the fact that she wakes up at 5:30am and I'm freaking tired!  How many other moms (and dads, but mostly moms) out there can relate to that??!! 

The second thing that others should be aware of is that the child's wheels (or walker, or crutches, or any other kind of apparatus) is an extension of the child and should be treated as such.  Her wheelchair is not a toy.  We have let other kids "play" in Leah's zip-zac and try it out, but I question whether that was the right thing to do.  As she gets older, her chair is literally going to be a part of her, and others should be respectful of that.  Touching her wheels or trying to push her in her chair is kind of like pulling another child's hair.  For now, her wheels are off limits to others, and as she gets older we can let her decide whether she wants to share them or not.

My third point is that it's ok to ask questions.  I was at story time at the library the other day with Leah (as opposed to going there by myself, which would be a little bit creepy) and one of the other moms noticed Leah was crawling and dragging her legs behind.  I could tell that she could tell something was off, and I really liked her approach.  She made light of it and said, "That's an interesting way to crawl, why does she do it that way?"  That opened the door to my sharing that Leah has SB and she asked lots more questions about it.  I could tell that she was looking at Leah and I would have felt more uncomfortable if she didn't say anything at all and left wondering what was wrong with my child.  I think it's very normal for others to stare at people who are different.  Trust me, those who are different notice the stares.  I could feel the stares at church after Leah had her shunt surgeries, so I'm very aware of it.  As Leah gets older, she will be too.  I guess what I'm trying to say is not to pretend the difference isn't there. 

And finally, I personally don't hate the words disability or special needs.  I know some people get really upset with those words but I try not to get too worked up with what's politically correct and what's not.  Besides, they're true... she has a disability and she does have special needs.  The word I hate is the "R" word (and you all know what I'm talking about), as well as anything that indicates she's less of a person because she can't walk.  And that simply is not the case.  Treat Leah - or any other kid out there who has a disability - the same way you'd treat anyone else!

So there you go, and again, this is the sentiment that is expressed by ME.  I'm not speaking on behalf of any other parent out there (not even my husband, who may have his own opinion, though I try to keep that in check... haha, just kidding).  I welcome other's thoughts and perspectives as well!