What's Wrong with Him?

I don't know if you remember this post I did on the old guy who had to hold his teeth in place to ask me, "What's he have?", but it was the first time I'd essentially been asked by anyone what was wrong with Liam. He took me off guard not only how he asked but also by how he worded the question. I really couldn't get past the stupidity of his question let alone how he asked it.

Today I was holding Liam in the waiting room at his therapy practice when a sweet little boy kept staring at him. I would look at the little boy and he would grin back at me. After several shared smiles he finally gained the nerve to ask me, "What's wrong with him?" 

Liam has so many issues that scream, I'M UNIQUE that it kind of makes me surprised we haven't gotten it before now.

I had prepped in my head for a while now what I would say when that question came up. But wouldn't you know I lost all ability to respond the way I wanted to? So I just smiled back at him and he smiled at me and turned back to the movie playing quietly on the opposite side of the room.

No matter that I didn't answer, this cute little boy was not done with his curiosity. He looked back around to us and smiled again when I caught his eye. He pointed at Liam and asked me again, "What's wrong with him?"

This time I was able to get the words out. Ready to explain, I asked him if he knew how he gets a boo-boo. He nodded his head yes. Then I told him that Liam has a boo-boo too but his is on the inside and you can't see it. I told him it was in his head. I started to go more into what the boo-boo means for Liam specifically, but with his curiosity satiated, he turned back around and glued his eyes to the movie for the remainder of our time in the waiting room.

I actually ended up disappointed that I didn't get to go into further detail to this little boy. I wanted him to ask more questions so I could give more answers. I wanted him to know that it was ok to be curious, that Liam wasn't something to be afraid of. He wasn't something to look past and pretend wasn't there. I wanted him to know that his curiosity was a good thing and that it's the only way people will see special needs kids as equals is if they learn more about them. I wanted him to know what was 'wrong' with Liam.

The natural curiosity of a child is a beautiful thing. It's how we will raise the newest generation to appreciate and value differences in all of God's children. Sowing into kids the worth of each person no matter their abilities will bring about adults who don't stare and ask, "What's he have?".

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.