An Interview With Kyle

While scrolling on Facebook earlier today, I came across an excellent article (http://forwardinchrist.net/respond-to-special-needs/)  on how to approach an family with a disabled child. It gave some great tips on how to respond to your children's questions about other children with disabilities. At the end of the article, the mom asked their typical developing daughter some questions about her feelings regarding people approaching her brother with a disability.

I thought that was a fantastic idea. So I grabbed Kyle from his tablet (it's totally been a Minecraft kind of day around here) and asked him the same questions.

Disclaimer: While these are Kyle's exact answers, it did take some prodding on my part to get more details from him. He prefers yes or no kind of questions. But once he got going, he did so awesome :)


Q: What do you like to do with David?

Kyle: Play with him with his hats. I like to do that because it makes us both laugh.

Q; When someone meets David for the first time, what kinds of questions do they ask?

Kyle: Why is he in a wheelchair? Can he talk? Can he see? What does he like? What's that thing on his stomach?

Q: How do you answer when people ask those questions?

Kyle: He has to get fed through a feeding tube or he might choke. His brain doesn't work exactly like ours. It sends different signals to his body than mine does.

Q: How does it make you feel when people stare at David?

Kyle: It makes me feel weird. I don't like it when they stare.

Q: What would you like to say when that happens?

Kyle: Even though he's not normal, you shouldn't stare at him. If you have a question you should ask me, or my mom or dad.


And then some extra insight that came at the end of the questions. At this point, he was laying it all out there ;)

Kyle: "I'm fine with David being disabled. He's still fun even though he is mentally like a baby, but really 16. He likes to play with his favorite toys, like I play with mine. He gets mad and sad. Just like me."

There are a few other kids I'd love to ask these same questions to. My sister's oldest son (14) & youngest daughter (4) both have pretty close relationships with David. I'd also like to ask my niece on Michael's side (almost 11). She has a great relationship with him as well. Just to get their perspectives at their ages right now.

David. 16. Holy cow.

My head has been spinning trying to think of things I haven't already said about David as his body ages & his mind stays the same. I keep thinking there's nothing left to be said. Is there anything left that I can say that can express how special he is to me? Us?

Yes.

This is a milestone birthday. Sixteen. Driver's license, car buying, being added to insurance. In my head he is supposed to be doing all of that. But he's not. And that makes me sad.

But then my heart speaks to me. He's NOT supposed to be doing any of that. That is NOT who he is. He's David. Special needs child extraordinaire. He's the puzzle to so many. Unable to be figured out.

I often wish he can speak to me. To tell me his thoughts. Tell me his feelings. Then I realize he does speak to me. He speaks to me when he smiles. Which tells me he is happy & content. He speaks to me when he cries. Which tells me he's sad. He speaks to me through agitation. Which tells me he's angry & upset. I don't always have the answers as to why he's feeling these things. Or how to fix the hurt & sadness. But he is communicating in his own way.

And while he may not be getting his drivers license or buying a car, I know deep down that wasn't supposed to happen for him. For us. He has a deeper meaning than the materialistic things in life. Although we did get him a license plate for his wheels :)

He made me who I was meant to be. Someone I didn't know I wanted to be. His heart is woven so deeply into mine, his soul entwined with mine. For that I am forever grateful. He makes me better. On the good days, the bad days, and the in between days. I am absolutely sure that God hand-picked him for this family. He is forever ours & we couldn't be any luckier.

Perfectly Imperfect

Today I just feel....blah. A little tired. A little lazy. I don't feel like doing much. Just blah. A very technical term. There's no reason really. Except probably a lack of sleep combined with a busy week.

Sometimes I try to put on a show and act like everything is great. I paste that smile on my face and pretend that blah isn't how I'm feeling. But let's be real. We all have days like these.

And I thought I would say that it's OK to feel this way. And ok to be imperfect. I love to show my perfect moments on social media. I love sharing the kids' smiles, their bond with each other, and their accomplishments. But we have real moments as well. I'm talking REAL.

For all of the awesome pictures I post of the kids that seem picture perfect, I get about 25 of these before I get the one that I actually use. In fact, I'm pretty sure I didn't get one good one out of this round of tries that I deemed social media worthy. David is super hard to get his attention (he can't hear, so if you could see me on the other side of the camera, you'd probably laugh at what I do to catch his eye), Kyle has one of the most unnatural smiles that you've ever seen. Unless he's genuinely laughing or thinking of something funny, you get the "smile for the camera, even if you don't want to" grin. And the falling over that takes place. I mean, some days I just can't even handle it all.

 

 

 

And then there's this. Kyle is not the affectionate type. He's not the smooching type. He will occasionally humor me. But this day wasn't one of those times. He hugs me every night before bed, and tells us he loves us every night as well. But if it were going to be caught on camera, he probably wouldn't. It would indeed be bad for his image. Whatever image it is that he's trying to achieve. 

 

 

And what can I say about this face??? It's pretty self-explanatory. This is from about a week ago. I probably took it to send to Michael at work. To say "See what you're missing out on today??" This is frequent in our house. The inconsolable crying. The days on end of bad moods. Sure. I love to share his smiles. But it's rare that I would share this. But I'm just trying to keep it real for you. Tonight I could probably take an identical picture. He is currently in his bed (he was self-injuring on the floor in his room, so for safety reasons, I contain him in a space that he's less likely to be hurt by something other than himself) crying. I think he's often just over the entire week by Fridays. He did have a good week at school, with the exception of a few times here or there.

 

 

So there you have it. Our blahs. While David is feeling sad in his room, Kyle is nursing a cold and watching Dukes of Hazard in his room. He will probably watch too much TV tonight because tonight is just one of those nights.

 

 

And I think it's really all ok. We all have those moments. Perfectly imperfect. That's us. And probably most of you too.