Archive for April, 2013

Not My Deal, Really

This is not a new thought for me. In fact, the idea was first spoken to me when we still lived in Grand Rapids, MI so the kids would’ve had to have been younger than 3 and 2 years old. And I’m reminded of it now and then. I was recently reminded of it when I was belly-aching about how tough life is for ME.

Oh, brother.

Seriously. It was a day when things seemed especially difficult: I am still doing some of the things that all my friends stopped doing when their kids left the “baby stage;” I am having to carry all these supplies everywhere I go when others only have to remember to grab their kids; I am frustrated and sad that I couldn’t figure out what my daughter was trying to tell me. You get the picture. Just all of a sudden one day I was tired and frustrated and thought my life was so much worse than everyone else’s. I was mourning and fighting that I have such a load to carry. How could I carry on? Poor ME!!

And then I was reminded. This thing — this life, these disabilities, these hardships — are not unique and they aren’t mine. They aren’t mine.

When I remember that I’m just the one supporting my children with disability labels, I also remember that this whole deal is really their deal. They are the ones who really have to carry it. Chloe is┬áthe one who is stuck inside a body that doesn’t work like she wants it to work. Zippy is the one whose behaviors are so often out of his control, and then he’s stuck with the hurt that his actions have caused his loved ones. They are the ones who live everyday and every moment with their disability.

It puts it in perspective and helps me not get wrapped up and warped up into thinking it’s all about me and about being the mom of a child with disabilities. Ummmmm, no. It’s not about me. It’s about them, and it’s theirs.

Don’t get me wrong, parenting a child with disabilities is lots of work. It is work that takes over your life, mandates your every plan, highjacks every conversation, and monopolizes nearly every thought. True.

But it does me some good when I remember that it’s not about me. It’s about her. It’s about him. And it’s my job to support them in the very best ways I can. And I need to care for myself so that I have enough energy and emotion left to spend on them. But it’s really and truly about them.

It’s not mine. And it’s not about me. So I’m choosing to get over myself and get back to work.

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Perhaps a Public Service Announcement is needed. Yes, a PSA of sorts. Yes. Yes, it’s definitely needed. So here goes.

When you are in a theater or auditorium, have you ever noticed that a few of the rows– either up front or in the back, depending on the theater– are missing a couple of chairs? They’re shorter than the others.

Just to be plain, let me explain in this PSA that those rows that are missing chairs in the theater are not missing chairs because of an accident or a miscounting on the builder’s part. Chairs aren’t missing because they broke or got dirty. Chairs aren’t missing because a few chairs on the end were damaged in a flood or fire.

The chairs are missing to make room for people using wheelchairs. Yes, those spots where there are no chairs on the end of the row are spots reserved for parking a wheelchair.

Since I’m expecting that information to come as a surprise to many people, I’ll wait and let that sink in.

Waiting, waiting, waiting….

I’m going to assume here that the people I have encountered in the past are just ignorant. Ignorant meaning honestly not knowing. Since the other options would mean assuming they are just mean or just selfish or just unobservant or just uncaring, and I am choosing to believe that the people I’ve encountered are none of those things.

Yes, some rows in theaters have fewer chairs than others in order to accommodate folks who use wheelchairs. Not all theaters actually mark the spot with the recognizable blue and white wheelchair symbol so maybe that’s why some people are clueless about those shortened rows. Yeah, maybe that would explain the ignorance that prevails. And perhaps if all theaters used the recognized symbol to mark those spots, then maybe more people would know that that is what they are for.

Now, let me take this one step further, if I might. I would like to add to this whole setup that the seat next to the empty spot is for a friend or family member of the person using the wheelchair.

Hmmmmmm. Again, I feel like I need to wait and let that sink in and even let some of you re-read the above paragraphs to make sure you get what I’m saying here.

If you think I’m pushing it by saying the seat next to the empty spot is for a friend of the person using the wheelchair, then think on this a moment: Do you think that person using the wheelchair wants to sit by YOU, a perfect stranger?? Perhaps if individuals with disabilities were more included as a whole in mainstream society, maybe most folks would actually be friends with someone who uses a wheelchair. (Stay with me a second– this rant really is going somewhere!) And perhaps if more folks were friends with someone who uses a wheelchair then maybe more people would understand something about people who use wheelchairs. Ready for this shocker? It’s a biggie. Individuals who use wheelchairs like to sit with their friends or family at the movie!! Oh?! You mean just like everyone else likes to sit with their friends and family? Yes! Exactly like everyone else!

So, yes! The seat next to the empty spot is for a friend of the person using the wheelchair.

To bring this PSA to a close, let me tell you about a scenario that we’ve faced several times.

I arrive quite early with Chloe to a show or performance of some sort. I take a look around, locate the seating for persons using wheelchairs and survey the situation. All the seats beside the wheelchair slots are filled with folks. Knowing that the establishment won’t allow Chloe’s wheelchair to hang out in the aisle at the end of a different row (there are fire codes, you know!), I park her wheelchair in one of the slots and take the seat behind her since I can’t sit beside her. Keep in mind, every time this has happened, the person in the seat beside Chloe’s wheelchair slot looks at us, watches us try to communicate with my sitting behind Chloe. Mind you, Chloe communicates with sign language — ever tried to have a signed conversation with someone while sitting behind them?? And I sit behind her, caring for her, reaching up and over her to give her things that she needs.

Very rarely has the person offered to switch places with me so that Chloe and I could sit together. A few times, I’ve just asked the person as nicely as possible to move so I can actually sit by my daughter. As usual, it just depends on my mood at the time.

So, back to the Public Service Announcement: If you choose to sit in one of the seats beside the wheelchair slot, be willing to give it up if someone using a wheelchair comes and uses the spot — even be willing to give up your spot for the person’s friend.

Any questions?

A funny story in closing: Last weekend when this whole frustrating scenario happened to Chloe and me once again, I sat behind Chloe while she listened to a favorite song on my phone while we waited for the show to start. She was so happy and loved the song so much that she began to rock and sway (think Stevie Wonder) with her arms stretched out at her sides (think Stevie Wonder Helicopter-style!!). While Chloe swung and twisted back and forth, her helicopter arms whacked the lady sitting in what should have been MY SEAT several times. Whack! Whack! Thwack! I didn’t ask Chloe to stop; I didn’t apologize to the lady. I just sat behind Chloe, laughing at the woman trying to dodge Chloe’s helicopter arms in what should have been MY SEAT and whispered, “‘Vengeance is mine!’ said the mama!!”

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