Friday, July 31, 2015

My First Kiss/Never Been Kissed

It was around this age that everyone started talking about having their first kiss:

6th grade school picture


I was eleven years old, and had zero interest in boys, girls, or anyone.  In fact, it was around this age that I started to really think about how I had little interest in kissing or anything beyond that.

A boy in fourth grade tried to woo me with handwritten notes, gifts, and even an invitation to go on a "date" at McDonald's.  Luckily, my mom put a stop to that, with a firm, "Tonia, you are nine years old."  I remembered liking the gifts, and the attention, but it never moved beyond that stage.  In fact, I don't remember myself and this boy ever actually speaking to one another, much less sharing an innocent first kiss.

By my senior year in high school, I did notice some of the football players, but only because that's what everyone else was doing, and what I thought I should be doing, too.

Now, in my 30's, I have still never been kissed, in the romantic sense.  Honestly, I don't care to be.  It took me years to realize that there was a term for what I grew up feeling and what I still feel: asexuality.  I haven't talked about it around here because it's very new to me, and also because it's a common stereotype about disabled people.  There's this belief that all disabled people are not sexual.  Let me be clear:  most of my disabled friends are into dating and romance and all of that.  One's dating.  Another's engaged to be married.

I understand that there is not necessarily a sexual connotation to kissing, but having grown up with it going hand in hand with other things that I have no interest in, it's no wonder that I also feel I'm not missing out on anything, having never been kissed.


Tara and me, around age 2, in slides taken by our great grandpa


Friday, July 24, 2015

The First Time I Saw My Favorite Movie

I've had several favorite movies in my lifetime, but the very first one I remember absolutely loving was Follow That Bird, which was released in theaters when I was four years old.  Having watched Sesame Street for as long as I could remember, the familiarity of the characters was part of what drew me to the film.

It was the first I ever saw in theaters, and my sister and I did not just stop at a single viewing.  I seem to remember that we were taken back multiple times (maybe four?) by different family members.  It was more than the characters that drew me back time and time again.  I'm sure, now, it's the movie's theme of family and of "all kinds" belonging on Sesame Street.  

At this early age, I'm not sure I had the vocabulary to talk about my CP.  I'd heard my parents reference it.  I'd been hospitalized by then (once for pneumonia and once for the first surgery I could remember: heel cord releases on both sides.)  I'd been to school for two years by then and while nursery/preschool isn't super clear in my memory, I do remember that no other kids were like me.

So, this notion of a place where everyone belonged, no matter if they were monsters or Bert and Ernie, or grouches or dogs or kids or adults felt good to me.  I saw people of all colors, and though I didn't see many disabled people represented, I saw Linda, who is Deaf.  She was always portrayed as a whole person: intelligent, capable, and the people around her learned sign language so they could all communicate.  Linda had a pivotal role in the end of the film, too, and while I'm not sure it resonated then, it does now.  

Watching Follow That Bird as a child always made me feel at home, and like I had somewhere to belong.  The notion that even if something scary happened and Big Bird got taken away, all of his friends and family on Sesame Street would drop everything to find him was so reassuring to me.  It's hard to articulate, but the feeling of belonging and of being valued is there even 30 years after the fact.  It's a great reminder that representation matters so very much.

Tara and me on our fourth birthday.

Saturday, July 4, 2015

Fireworks and Startle Reflex: Coping at the Fourth of July

The Fourth of July has never been my favorite holiday.  Honestly, it's probably among my least favorite, for one reason:  fireworks.  Startle reflex and fireworks just are not a good mix (for more on what Startle Reflex is, check out the post I wrote last July.)  It not only makes being around fireworks hard, but watching certain movies at home (can't enjoy suspense or anything with a lot of unexpected noise), all movies in theaters), thunderstorms, and any type of live show usually involve me with my fingers in my ears just to get through it.

It's been nearly a decade since I've voluntarily submitted myself to a fireworks display.  Here's photo proof of me, 9 years ago, enjoying the moments before the show started.


Not too hard to smile and be happy when all is quiet, but when those fireworks start, it's like cruel and unusual punishment.  Years before this photo was taken, when I was around 18, I was on a camping trip with friends over the Fourth.  These friends got to witness my Startle Reflex firsthand.  One did her best to help, stating, "It's just noise.  When you see the light, expect the sound."

Well, if I could do that, everything would just be fabulous, wouldn't it?  

I'm disabled and proud, but I really wouldn't mind giving up m Startle Reflex once a year.  It's tough to deal my brain and body constantly react as if they're under threat of immediate deadly harm, when my rationale knows better.

I'd never really given much thought about there being something I could do about the noise until I saw this post yesterday: 5 Ways People With Sensory Sensitivity Celebrate the Fourth of July.  They suggested earphones (check out the link, especially if you've got a little one with CP between 2 and 10 dealing with Startle Reflex.)  I'll have to look into getting a grown up pair, maybe for next year, since this one is a bit close at hand already.

I'll no doubt hear them tonight, though I'll be home in bed, and I'll cope, but it made me wonder...

Do you have any other suggestions for dealing with the unpleasant combination of fireworks and Startle Reflex?  Especially if you have CP yourself and have found something that works, I really want to hear from you.  Leave a comment below.