Thursday, February 15, 2007

Don't Be Afraid

As we pass each other at the mall or on the playground or at the doctor's office I can see you staring at me. Perhaps I smiled back at you but you turned away so you you couldn't see my eyes. I sense fear.

I understand fear. I know it by the needle that jabs into my skin. I know it by the solitude of the x-ray room. I know it when my Mom leaves for work each morning. I know it when I see my sister cry. I know it from the uncontrollable muscle spasms I've been having lately. I know it when the lights go out at night.

But why should you fear me? You can't catch what I have unless it's a hug or a big sloppy wet kiss I am always willing to offer. Are you afraid of my drool? I do that a lot but it's nothing to be frightened of. In fact my mouth is cleaner than just about any other child's. Since I wear a diaper I don't touch my privates so there are fewer germs on my hands. I can't pick my nose. And my Mom and Dad rarely let me touch our cat or dog and when I do they wash my hands immediately. I'm willing to guess that I have the cleanest drool around.

Are you afraid of the machines around me? They can't hurt you since they don't hurt me. In fact they are there to make me healthier. I know they make loud noises but so do most 2-year-olds.

Is it because you think I'm different or strange? From what I can see everyone is different. And strange is reserved for the noises my dad makes after eating Hispanic food.

I hear my Dad play a song sometimes. The lyrics* go:

See me
Feel me
Touch me
Heal me

I think that pretty much sums things up. So when you pass by next time, stop and say hello. Look at me for who I am and not for what I am not.

* From the soundtrack Tommy by The Who.


Carrie said...

I can't decide if people are more afraid of what they DO see (i.e. Ben) or what they DON'T see (i.e. mental illness.) It sucks either way. I'm thrilled to see Ben is feeling better!

Vance said...

Bennie, did you come up with that? If so, that's amazing (even if you didn't, it's still amazing). I loved it.

As far as what Carrie's probably a little of both. It's a shame either way.

This is my favorite line: "Look at me for who I am and not for what I am not." Awesome work Bennie. You made me a little emotional :).

Kyla said...


moosh in indy. said...

Here's my question little man, are all parents as open and as cool as yours are about moosh moms walking up and chatting you up? That's my worry, that the parents are going to think I'm an uneducated doof.

Ben & Bennie said...

Excellent question, Casey. I used to horrify Joan by walking up to strangers with a special loved one and striking up a conversation. ALWAYS ask permission to touch the special needs individual. It's not only polite but you never know if that individual as an immune deficiency issue.

I always begin by saying you have a beautiful daughter/handsome son and generally spend a few moments saying hello and then asking for the name. It's usually about this time I say I have an exceptional son. Big ice-breaker advantage for me BUT I've occasionally not even had the chance to tell the family that fact until we're several minutes into the conversation

Every one I have EVER encountered like this has been 100% positive. some families will act suspicious while others (like us) are more than willing to share how wonderful our kids are.

Since you now have a friend (that would be moi) who has a son with severe disabilities, you have an excellent ice-breaker!

Every meeting I've had like this has been rewarding!

Kelly said...

Well said!

You once commented on my blog how Jenelle looks like any normal child and that you'd never really know anything was wrong with her. It is a blessing and a curse.

I know that I sometimes try not to stare. I don't want to make the disabled person I notice in a crowd feel uncomforable in any way. Sometimes when I am without Jenelle and I see another special needs child, I want to say something like "I know what you're going through" but it just doesn't seem like enough. And I don't want to be rude. If that makes sense.

Part of Jenelle's look is that people expect her to be normal, and then get confused as to why she isn't smiling or answering their silly questions. It makes for an awkward moment, but then again, at least we get the interaction.

Bless you all!

DDM said...

*Sniff* Thanks for this. I wrote a similar post about how 'it's never just a trip to the playground'. This was beautifully written, I'm so glad I found you!

kimmyk said...

aw. i can't imagine anyone walking by that little guy and not wanting to scoop him up and snuggle him. i really can't. i mean i come here to see how y'all are, but i mainly come to look at those cheeks and i wonder to myself what it would be like to blow kisses on 'em and make 'em shake. LOL. He's adorable. Those that dont know or realize that? Well, they are missin' out I do believe.